I got my SLE dx about 6 weeks ago, and have been on Plaquenil for 5 weeks. My rheumy said that it could take several months before I start to feel better. In the meantime, I am feeling worse than ever! Is that normal, in the beginning stages of treatment? Should I be worried, and on the phone to my rheumy??? I have noticed a slight improvement, regarding fatigue...most days, I can manage to force myself to stay awake...but every other aspect seems to be getting worse. Breathing is a struggle, joints, muscles, skin and head are in constant pain. My rheumy has prescribed Celebrex for the pain, as OTC meds have no affect, whatsoever, but my insurance doesn't want to cover it (this is the 3rd rx that they are fighting coverage for). I am nauseated, congested and have had a sore throat for about a week. Should I assume it's just a summer cold, and treat it accordingly? It doesn't feel like a cold, or even allergies. There is no mucus or anything...my nasal passages and sinuses just seem to be swollen shut. I don't want to be the patient who runs to the doctor for every little nothing, but I am new to this disease (at least newly diagnosed, though I think I've had it for 10+ years), and don't want to NOT call him and have it turn out to be something serious. Everyone here is so insightful and helpful, and many of you have been fighting this disease for decades, so I know I will get some great advise. What should I do???
Jazmin,
I'm sorry that you're feeling so bad! Yes, you can definitely feel worse if all he has you on is plaquenil! Has he discussed possibly putting you on prednisone and/or another immunosuppressant med such as Imuran or Cellcept? That would probably help reduce the pain and inflammation, although there are side effects to contend with when you take prednisone. Do you think that you might have fibromyalgia too? I have both lupus and fibro (plus several other autoimmune diseases) and I take prednisone, Cellcept, plaquenil, Lyrica, and Cymbalta daily, to keep my immune system under control and help me handle the pain.
Perhaps you might ask your rheumy if you might need an additional medication since you seem to be flaring so badly! Feel better soon!
JoAnn
Jaz please call my wife as she thinks my doctors have made my condition worst instead of better..JK. when I was only experiencing blood clots I did not have the amount of joint pain./nausea/etc etc etc as I do now on the multitude of meds I take. she thinks they made my condition worst.. I think its just the course of the disease. on plaquenil cellcept (tried Methotrexate but did nothing but make me nauseous.. am currently awaiting to start benlysta right now due to a weird flare I am on a short term dose of prednisone...all that is coupled with meds for the blood clots... YEar of hell...
Hi Jazmin,
I'm certainly not a medical expert but I would recommend you call your rheumy. You have so many symptoms that need to be reported! You'll get the hang of this invisible, nasty disease as you progress and will know when you are simply in a flare that you will live through or have symptoms that need to be looked at. I am particularly concerned about the breathing problems - don't take a chance on those! They could side effects of the drugs you are taking and it may be that your prescription(s) need to be adjusted. Please don't wait!!
One of the things I have learned through my journey with Lupus is that I need to take care of myself first. If my intuition or little voice inside of me is raising red flags, then I act. I don't care what the doctor thinks. I happen to have a wonderful rheumy who gets mad at me when I don't contact him...so there you go!
I am so sorry you are experiencing all of these symptoms! It is hard and you will find lots of support here..
Take care,
Susan
Susan
Unfortunately, as you can see it is normal. Most people that are put on Plaquenil start with prednisone with it as it can take months to begin taking effect. I am really surprised that you weren't put on a steroid regimen at the same time. Prednisone or the generic form is not very expensive and should be covered by most insurances as it is almost a universal beginning treatment.
If your doctor is not well versed in treating lupus patients (I do hope he's a Rheumy) you need to find one in your area. Most people on this site will recommend good doctors if you ask around your area.
Do feel better soon, hon.
Hugs,
DeAnne
Susan is absolutely correct about the breathing problems. A cold can turn to pneumonia or pleurisy overnight...literally.
susanjs said:
Hi Jazmin,
I'm certainly not a medical expert but I would recommend you call your rheumy. You have so many symptoms that need to be reported! You'll get the hang of this invisible, nasty disease as you progress and will know when you are simply in a flare that you will live through or have symptoms that need to be looked at. I am particularly concerned about the breathing problems - don't take a chance on those! They could side effects of the drugs you are taking and it may be that your prescription(s) need to be adjusted. Please don't wait!!
One of the things I have learned through my journey with Lupus is that I need to take care of myself first. If my intuition or little voice inside of me is raising red flags, then I act. I don't care what the doctor thinks. I happen to have a wonderful rheumy who gets mad at me when I don't contact him...so there you go!
I am so sorry you are experiencing all of these symptoms! It is hard and you will find lots of support here..
Take care,
Susan
Susan
My doctor put me on Meloxicam for pain.. its a generic version of Celebrex and its been helpful to me. When I started on plaquenil (I also take a generic of this), I wasn't put on predisone either because of the weight gain issues. I had digestive issues when I started, and loss of appetite. I hope you feel better soon.
Hi
I was diagnosed with SLE a little over a year ago. Started on plaquenil last Dec. My mouth sores are gone Thank God. My hair loss is getting better. I never felt worse after startin to take it. I have no pain (not yet anyway). I have the sun sensivity though. I have rash on legs and arms almost all the time. I think I was diagnosed earlier than most. I also have LichenPlanus, another skin issue and it is my dermatologist that biopsyed my arms and later my legs. If you have a good rheumy he will want to hear about your symptoms. I think I have a good one. I have diviticulitis this week. Thats probably part of our wonderful Lupus. Put me on antibiotic, of which I am allergic to most like Cipro, Levoquin, bactrim, garamycin, doxyclycin, and more I am even allergic to antibiotic ear drops. I know now when I get a new prescription and my pharmacist days don't take it--I won't. Sorry I rambled on. Stay positive
Hi freightliner,
I'm responding to your statement about diverticulitis. I also had it - went to the ER because I was so constipated and in pain. All they did was give me enemas and send me home with a prescription for strong laxatives. I won't bore you with the whole story, but about four days later my colon erupted. Eight hours of surgery and I woke up in the ICU with a colostomy bag and peritonitis. Again, still in the hospital, my colon erupted around the stoma and back into emergency surgery again only to wake up in ICU again with a stoma on the other side and peritonitis. I'm telling you this because diverticulitis is nothing to fool around with!! If untreated, it can cause a blockage. Make sure you are doing everything you can before you take laxatives. I almost died two times and if they had just treated the diverticulitis, I would not have had to go through all of that...
Wow, what a great way to put this delicate balance of a concern into such clear terms! Thanks, Susan!
For you Jazmin, I agree there is a ton going on worth seeing a doctor for, and I’d like to add that frequent doctor visits early on in your diagnosis are very normal and helpful to the doctors in characterizing your disease (you’re right at the beginning, only 6wks in–diagnosis is a bit more of a process than a one-time fact!) For example, at the time of diagnosis, they would have noted some positive labs and characteristic symptoms, but probably not all of the ones that apply to your unique case of lupus. The more they can see it in action, the more definitive the disgnosis becomes, and they can better target your treatment, including increasing it. Perhaps at first your primary complaint was fatigue and joint pain. Plaquenil tends to help with those aspects, and they wouldn’t know to treat other areas if you didn’t have much to report initially about other issues. Reporting additional symptoms may take your diagnosis category from “mild lupus” to moderate or severe lupus in a variety of specific body systems, which is more urgent to treat with stronger meds, as others have said. Even if it doesn’t change the course of waiting out plaquenil’s slow motion to results, it’s very important to know the different body systems affected, and they can’t do anything for you without hearing what’s going on. Like some others have said, later on you’ll be able to know what fits into a category of lupus-related (especially if each area of activity is discovered and noted while your symptoms are still active now) and what you can do about it. Over time you’ll learn what works and doesn’t for each (stopping everything to rest is a good catch-all, but so difficult to accomplish in the real world!) Like Susan said, one of the things you’ll need to learn is when to contact your doctor (and which type! Most of us have several specialists.) Early on, always err on the side of going in, so they can know how much needs to be done and take care of it as soon as possible to end your initial disgnosable flare.
As for my case, I was diagnosed about a year ago, and though I certainl had past symptoms and full episodes that are now pretty clearly related, what got me finally disgnosed was the sustained activity that built up over 2011 and early 2012. I too thought diagnosis meant I would be back mostly on track, with extra worries to juggle but not sustained heavy burden and risk. I’m pretty much in that zone now, but it took about a year longer than I thought to get there!vThe learning curve is steep, so that means you are very challenged by it but also make a lot of progress over a relatively short time! Of course we’re all still on the learning curve, but I am certainly relieved to have made it to the part where it flattens out a bit more. For any nerds out there, what I just described is a logarithmic curve 
Since I am a big nerd, primarily about biology and health, learning about the disease was fascinating and fun challenge for me. Having to learn the ropes of dealing with it happening to me made it all the more challenging, but very far from fun. Worst of all was the waiting game for treatment that worked to get me back to at least reasonable function with a tolerable symptom load. Since my first rheumie thought my case was milder, we started just plaquenil after a short course of low-dose steroids (medrol dosepak, a spike and quick taper regimen at much lower doses than the old approach with higher IV doses. Those are still needed for severe flares, but mine was in a state of chronic moderately high activity rather than an acute flare. The medrol helped a ton. As soon as I tapered off, symptoms came right back. I informed him of this, but we decided to wait out the plaquenil (I didn’t realize at the time how helpful ongoing low-dose steroids might have been!)3 months went by and I was getting worse. I saw a second rheumatologist who agreed my case was more active systemically and also present in one of those tougher-to-quantify areas, in my central nervous system. But, that diagnosis process was a few months in itself, so meanwhile I hit my plaquenil 6-month mark feeling worse than ever! At that point my second rheumie started me on a moderate dose of medrol to take ongoing, and it helped immensely, but it took me months to keep undoing the damage to my wellness as well as work/financial/personal life even after the steroids made a big difference. Oh wait, I’m still struggling to rebuild, 9 more months later! But once I started the steroids I was at least in a phase of recovery and was fairly functional after 2-3 months even though I was still dealing with a lot of symptoms. What made the huge difference was the round of Rituxan I tried in April, which had been rheumie 2’s suggestion but got delayed by my parents’ strong suggestion to return to my hometown of Seattle to get better (aka dramatic refusal to keep helping me financially to keep putting one foot in front of the other in keeping my life going where I was living in the bay area in the hopes I’d be ready to proceed with grad school in the fall! Seattle ended up being nice in the end, but a 2-month delay in starting that treatment was a really counterproductive part of their plan, to say the least!) In the mean time as I was in transition, I tried CellCept, which put me in the ER for the nausea and vomiting it caused once I tapered up. CellCept is one of the oral ones that doesn’t have the fertility risks (I’m 26 and single, but hopeful!), so I was really stressing when that was a total bust, yet all the more satisfied with Rituxan! It has some major potential (but rare) risks, but not really any side effects to speak of (a day and a half sleeping off the flu-like feeling right after infusion, but that’s only two or three times a year.) I’m now back in the Bay, working half-time while I get ready to start grad school at the end of the month. When that happens, I’ll also be working (even less time, just one day a week) while attempting a full-time course load (luckily spread over two full days and two half-days of class.) Based on what I know so far, that’s a bit beyond my limits even at the best I’ve felt since successful treatment. However, I’m repeating Rituxan soon (hoping before school starts, but the insurance is holding it up… going to be 2 months later than recommended, again…) This is another thing you’ll learn to expect and counteract when you can: huge delays and tons of administrative disasters you have to take charge of yourself, when all you need is to just rest, get the treatment that will help, and not be buried in bills while you struggle to even be able to work at all!
I’m so sorry it’s not a very appealing welcome to lupus, but I hope my story helps you prepare for a potentially really rough time, take prosctive steps to minimize it, and have hope that you can get through a hellish year and still make your way back to better health and greater ambitions, even if less than they once were. Learning to let go of being and doing everything you had hoped, or at least having to adjust the way your goals dreams take shape and overhauling the means of achieving them, is a major part of lupus. However, that doesn’t mean we should tolerate everything that seems to be our lot, since a lot can be done (with miracles of modern medicine, but also our own commitment to balance and self-care) to restore us as much as possible to full function and well-being. Best wishes for you as you start the process, and remember to remain curious and fascinated by it if you can… It’s such a burden, but turning it into a challenge of gaining knowledge and insight, self-growth and wisdom to share, is the way I’ve been able to feel my life is in many ways better than it was before this wracking year and a half. For one, I’m ready for just about anything, as long as I have the resources to get through the flares!
susanjs said:
Hi Jazmin,
I’m certainly not a medical expert but I would recommend you call your rheumy. You have so many symptoms that need to be reported! You’ll get the hang of this invisible, nasty disease as you progress and will know when you are simply in a flare that you will live through or have symptoms that need to be looked at. I am particularly concerned about the breathing problems - don’t take a chance on those! They could side effects of the drugs you are taking and it may be that your prescription(s) need to be adjusted. Please don’t wait!!
One of the things I have learned through my journey with Lupus is that I need to take care of myself first. If my intuition or little voice inside of me is raising red flags, then I act. I don’t care what the doctor thinks. I happen to have a wonderful rheumy who gets mad at me when I don’t contact him…so there you go!
I am so sorry you are experiencing all of these symptoms! It is hard and you will find lots of support here…
Take care,
Susan
Susan
Super reply Faladora,
I am so glad that you are feeling so much better. I remember we were diagnosed about the same time, and like you have sort of plateaued. What my rheumy told me and my husband (according to him because I have such severe memory issues) is that the first year is nearly always just trying to stop the disease from escalating. Like you I am moderate to severe with lupus nephritis on top of it. But truly this time last year couldn't put together a sentence. This site and the sharing of knowledge and experiences has been the best medicine of all.
Hugs,
DeAnne
Faladora said:
Wow, what a great way to put this delicate balance of a concern into such clear terms! Thanks, Susan!
For you Jazmin, I agree there is a ton going on worth seeing a doctor for, and I'd like to add that frequent doctor visits early on in your diagnosis are very normal and helpful to the doctors in characterizing your disease (you're right at the beginning, only 6wks in--diagnosis is a bit more of a process than a one-time fact!) For example, at the time of diagnosis, they would have noted some positive labs and characteristic symptoms, but probably not all of the ones that apply to your unique case of lupus. The more they can see it in action, the more definitive the disgnosis becomes, and they can better target your treatment, including increasing it. Perhaps at first your primary complaint was fatigue and joint pain. Plaquenil tends to help with those aspects, and they wouldn't know to treat other areas if you didn't have much to report initially about other issues. Reporting additional symptoms may take your diagnosis category from "mild lupus" to moderate or severe lupus in a variety of specific body systems, which is more urgent to treat with stronger meds, as others have said. Even if it doesn't change the course of waiting out plaquenil's slow motion to results, it's very important to know the different body systems affected, and they can't do anything for you without hearing what's going on. Like some others have said, later on you'll be able to know what fits into a category of lupus-related (especially if each area of activity is discovered and noted while your symptoms are still active now) and what you can do about it. Over time you'll learn what works and doesn't for each (stopping everything to rest is a good catch-all, but so difficult to accomplish in the real world!) Like Susan said, one of the things you'll need to learn is when to contact your doctor (and which type! Most of us have several specialists.) Early on, always err on the side of going in, so they can know how much needs to be done and take care of it as soon as possible to end your initial disgnosable flare.
As for my case, I was diagnosed about a year ago, and though I certainl had past symptoms and full episodes that are now pretty clearly related, what got me finally disgnosed was the sustained activity that built up over 2011 and early 2012. I too thought diagnosis meant I would be back mostly on track, with extra worries to juggle but not sustained heavy burden and risk. I'm pretty much in that zone now, but it took about a year longer than I thought to get there!vThe learning curve is steep, so that means you are very challenged by it but also make a lot of progress over a relatively short time! Of course we're all still on the learning curve, but I am certainly relieved to have made it to the part where it flattens out a bit more. For any nerds out there, what I just described is a logarithmic curve ;) Since I am a big nerd, primarily about biology and health, learning about the disease was fascinating and fun challenge for me. Having to learn the ropes of dealing with it happening to me made it all the more challenging, but very far from fun. Worst of all was the waiting game for treatment that worked to get me back to at least reasonable function with a tolerable symptom load. Since my first rheumie thought my case was milder, we started just plaquenil after a short course of low-dose steroids (medrol dosepak, a spike and quick taper regimen at much lower doses than the old approach with higher IV doses. Those are still needed for severe flares, but mine was in a state of chronic moderately high activity rather than an acute flare. The medrol helped a ton. As soon as I tapered off, symptoms came right back. I informed him of this, but we decided to wait out the plaquenil (I didn't realize at the time how helpful ongoing low-dose steroids might have been!)3 months went by and I was getting worse. I saw a second rheumatologist who agreed my case was more active systemically and also present in one of those tougher-to-quantify areas, in my central nervous system. But, that diagnosis process was a few months in itself, so meanwhile I hit my plaquenil 6-month mark feeling worse than ever! At that point my second rheumie started me on a moderate dose of medrol to take ongoing, and it helped immensely, but it took me months to keep undoing the damage to my wellness as well as work/financial/personal life even after the steroids made a big difference. Oh wait, I'm still struggling to rebuild, 9 more months later! But once I started the steroids I was at least in a phase of recovery and was fairly functional after 2-3 months even though I was still dealing with a lot of symptoms. What made the huge difference was the round of Rituxan I tried in April, which had been rheumie 2's suggestion but got delayed by my parents' strong suggestion to return to my hometown of Seattle to get better (aka dramatic refusal to keep helping me financially to keep putting one foot in front of the other in keeping my life going where I was living in the bay area in the hopes I'd be ready to proceed with grad school in the fall! Seattle ended up being nice in the end, but a 2-month delay in starting that treatment was a really counterproductive part of their plan, to say the least!) In the mean time as I was in transition, I tried CellCept, which put me in the ER for the nausea and vomiting it caused once I tapered up. CellCept is one of the oral ones that doesn't have the fertility risks (I'm 26 and single, but hopeful!), so I was really stressing when that was a total bust, yet all the more satisfied with Rituxan! It has some major potential (but rare) risks, but not really any side effects to speak of (a day and a half sleeping off the flu-like feeling right after infusion, but that's only two or three times a year.) I'm now back in the Bay, working half-time while I get ready to start grad school at the end of the month. When that happens, I'll also be working (even less time, just one day a week) while attempting a full-time course load (luckily spread over two full days and two half-days of class.) Based on what I know so far, that's a bit beyond my limits even at the best I've felt since successful treatment. However, I'm repeating Rituxan soon (hoping before school starts, but the insurance is holding it up... going to be 2 months later than recommended, again...) This is another thing you'll learn to expect and counteract when you can: huge delays and tons of administrative disasters you have to take charge of yourself, when all you need is to just rest, get the treatment that will help, and not be buried in bills while you struggle to even be able to work at all!
I'm so sorry it's not a very appealing welcome to lupus, but I hope my story helps you prepare for a potentially really rough time, take prosctive steps to minimize it, and have hope that you can get through a hellish year and still make your way back to better health and greater ambitions, even if less than they once were. Learning to let go of being and doing everything you had hoped, or at least having to adjust the way your goals dreams take shape and overhauling the means of achieving them, is a major part of lupus. However, that doesn't mean we should tolerate everything that seems to be our lot, since a lot can be done (with miracles of modern medicine, but also our own commitment to balance and self-care) to restore us as much as possible to full function and well-being. Best wishes for you as you start the process, and remember to remain curious and fascinated by it if you can... It's such a burden, but turning it into a challenge of gaining knowledge and insight, self-growth and wisdom to share, is the way I've been able to feel my life is in many ways better than it was before this wracking year and a half. For one, I'm ready for just about anything, as long as I have the resources to get through the flares!
susanjs said:Hi Jazmin,
I'm certainly not a medical expert but I would recommend you call your rheumy. You have so many symptoms that need to be reported! You'll get the hang of this invisible, nasty disease as you progress and will know when you are simply in a flare that you will live through or have symptoms that need to be looked at. I am particularly concerned about the breathing problems - don't take a chance on those! They could side effects of the drugs you are taking and it may be that your prescription(s) need to be adjusted. Please don't wait!!
One of the things I have learned through my journey with Lupus is that I need to take care of myself first. If my intuition or little voice inside of me is raising red flags, then I act. I don't care what the doctor thinks. I happen to have a wonderful rheumy who gets mad at me when I don't contact him...so there you go!
I am so sorry you are experiencing all of these symptoms! It is hard and you will find lots of support here..
Take care,
Susan
Susan
Thanks DeAnne! I always remember your replies being so helpful, thoughtful, and better-organized (or at least briefer) than mine, so I would say it's surprising to hear you struggle with explaining yourself... but that's just how lupus is, ain't it? I was there last year too at times, but thankfully less often rather than not. I got super tongue-tied (which for me is more of a confused rambling, all sorts of words but not the ones I mean to say or can use effectively.... quiet altogether is REALLY bad) a few times over the summer, associated with extreme moodiness as well. It's always so hard to tell which factors stem from lupus activity and which ones from my various psychological and psychiatric problems, but in my mind they're all related.
As far as the topic of diagnosis, it was really hard for me to get anyone to believe the neuropsych components of it (other than my second rheumie and Seattle rheumie) since I would be very mentally functional, especially verbally, a lot of the time and during the bad times people just thought I was behaving myself and staying quiet for a change. Or, in the cases over the summer, the boyfriend I had at the time acted like I was intentionally making his life difficult and demanding his help without adequately explaining what I needed from him (duh, I can't think through it, thus I am asking for your help to think through what might help!) When I moved back here to CA we kinda had to go our separate ways anyway, but he still doesn't seem to get it about why I found his response to me to not be "good enough" when he was trying very hard to help as much as he could. Some people just get it, others don't. Glad your hubby is one who does, and I'm sure looking for one!
The neuropsychologist I was referred to by my rheumie actually used his snapshot assessment of my verbal abilities (when is a snapshot ever valid in lupus??) coupled with my complaints about difficulties with cognition/word recall, etc. to label me with somatization disorder layered over all kinds of other psychologist explanations. Luckily my awesome rheumie doesn't buy that and keeps treating the lupus aspects of it and trusting my own motivation and progress at managing my mental health conditions with the psychiatry and therapy I was already having. As far as the neuropsychologist, I wanted to hit him over the head saying of course I have above-average verbal reasoning even while I complain of being impaired... I'm FALADORA, after all, which means talks incessantly, in the 3rd language I speak! Verbal abilities are my major strong suit (hence studying Speech Language Pathology when I bailed on med school), so to have them deteriorate to a point that is noticeable to me may not put me into an objectively "impaired" category! If he could speak Spanish and hear the difference in my ability to speak that on a good moment vs a bad moment, it would be really obvious. Sometimes I'll sound college-educated and catch people from Cuba thinking I'm from Spain, other times I sound like a traveler doing their best or an elementary schooler with a speech impediment. Any time I can't speak English well is when I literally can't string thoughts together, and then people just assume I don't have anything to say. I NEVER have nothing to say, I'm Faladora, everyone! I'm glad you guys get me, because so many people out there, especially my own family, never seem to.
I'll keep you all updated on things I learn in Speech Path that relate to our verbal processing woes!
Brynn/Faladora
whathappensinvegas said:
Super reply Faladora,
I am so glad that you are feeling so much better. I remember we were diagnosed about the same time, and like you have sort of plateaued. What my rheumy told me and my husband (according to him because I have such severe memory issues) is that the first year is nearly always just trying to stop the disease from escalating. Like you I am moderate to severe with lupus nephritis on top of it. But truly this time last year couldn't put together a sentence. This site and the sharing of knowledge and experiences has been the best medicine of all.
Hugs,
DeAnne
Faladora said:Wow, what a great way to put this delicate balance of a concern into such clear terms! Thanks, Susan!
For you Jazmin, I agree there is a ton going on worth seeing a doctor for, and I'd like to add that frequent doctor visits early on in your diagnosis are very normal and helpful to the doctors in characterizing your disease (you're right at the beginning, only 6wks in--diagnosis is a bit more of a process than a one-time fact!) For example, at the time of diagnosis, they would have noted some positive labs and characteristic symptoms, but probably not all of the ones that apply to your unique case of lupus. The more they can see it in action, the more definitive the disgnosis becomes, and they can better target your treatment, including increasing it. Perhaps at first your primary complaint was fatigue and joint pain. Plaquenil tends to help with those aspects, and they wouldn't know to treat other areas if you didn't have much to report initially about other issues. Reporting additional symptoms may take your diagnosis category from "mild lupus" to moderate or severe lupus in a variety of specific body systems, which is more urgent to treat with stronger meds, as others have said. Even if it doesn't change the course of waiting out plaquenil's slow motion to results, it's very important to know the different body systems affected, and they can't do anything for you without hearing what's going on. Like some others have said, later on you'll be able to know what fits into a category of lupus-related (especially if each area of activity is discovered and noted while your symptoms are still active now) and what you can do about it. Over time you'll learn what works and doesn't for each (stopping everything to rest is a good catch-all, but so difficult to accomplish in the real world!) Like Susan said, one of the things you'll need to learn is when to contact your doctor (and which type! Most of us have several specialists.) Early on, always err on the side of going in, so they can know how much needs to be done and take care of it as soon as possible to end your initial disgnosable flare.
As for my case, I was diagnosed about a year ago, and though I certainl had past symptoms and full episodes that are now pretty clearly related, what got me finally disgnosed was the sustained activity that built up over 2011 and early 2012. I too thought diagnosis meant I would be back mostly on track, with extra worries to juggle but not sustained heavy burden and risk. I'm pretty much in that zone now, but it took about a year longer than I thought to get there!vThe learning curve is steep, so that means you are very challenged by it but also make a lot of progress over a relatively short time! Of course we're all still on the learning curve, but I am certainly relieved to have made it to the part where it flattens out a bit more. For any nerds out there, what I just described is a logarithmic curve ;) Since I am a big nerd, primarily about biology and health, learning about the disease was fascinating and fun challenge for me. Having to learn the ropes of dealing with it happening to me made it all the more challenging, but very far from fun. Worst of all was the waiting game for treatment that worked to get me back to at least reasonable function with a tolerable symptom load. Since my first rheumie thought my case was milder, we started just plaquenil after a short course of low-dose steroids (medrol dosepak, a spike and quick taper regimen at much lower doses than the old approach with higher IV doses. Those are still needed for severe flares, but mine was in a state of chronic moderately high activity rather than an acute flare. The medrol helped a ton. As soon as I tapered off, symptoms came right back. I informed him of this, but we decided to wait out the plaquenil (I didn't realize at the time how helpful ongoing low-dose steroids might have been!)3 months went by and I was getting worse. I saw a second rheumatologist who agreed my case was more active systemically and also present in one of those tougher-to-quantify areas, in my central nervous system. But, that diagnosis process was a few months in itself, so meanwhile I hit my plaquenil 6-month mark feeling worse than ever! At that point my second rheumie started me on a moderate dose of medrol to take ongoing, and it helped immensely, but it took me months to keep undoing the damage to my wellness as well as work/financial/personal life even after the steroids made a big difference. Oh wait, I'm still struggling to rebuild, 9 more months later! But once I started the steroids I was at least in a phase of recovery and was fairly functional after 2-3 months even though I was still dealing with a lot of symptoms. What made the huge difference was the round of Rituxan I tried in April, which had been rheumie 2's suggestion but got delayed by my parents' strong suggestion to return to my hometown of Seattle to get better (aka dramatic refusal to keep helping me financially to keep putting one foot in front of the other in keeping my life going where I was living in the bay area in the hopes I'd be ready to proceed with grad school in the fall! Seattle ended up being nice in the end, but a 2-month delay in starting that treatment was a really counterproductive part of their plan, to say the least!) In the mean time as I was in transition, I tried CellCept, which put me in the ER for the nausea and vomiting it caused once I tapered up. CellCept is one of the oral ones that doesn't have the fertility risks (I'm 26 and single, but hopeful!), so I was really stressing when that was a total bust, yet all the more satisfied with Rituxan! It has some major potential (but rare) risks, but not really any side effects to speak of (a day and a half sleeping off the flu-like feeling right after infusion, but that's only two or three times a year.) I'm now back in the Bay, working half-time while I get ready to start grad school at the end of the month. When that happens, I'll also be working (even less time, just one day a week) while attempting a full-time course load (luckily spread over two full days and two half-days of class.) Based on what I know so far, that's a bit beyond my limits even at the best I've felt since successful treatment. However, I'm repeating Rituxan soon (hoping before school starts, but the insurance is holding it up... going to be 2 months later than recommended, again...) This is another thing you'll learn to expect and counteract when you can: huge delays and tons of administrative disasters you have to take charge of yourself, when all you need is to just rest, get the treatment that will help, and not be buried in bills while you struggle to even be able to work at all!
I'm so sorry it's not a very appealing welcome to lupus, but I hope my story helps you prepare for a potentially really rough time, take prosctive steps to minimize it, and have hope that you can get through a hellish year and still make your way back to better health and greater ambitions, even if less than they once were. Learning to let go of being and doing everything you had hoped, or at least having to adjust the way your goals dreams take shape and overhauling the means of achieving them, is a major part of lupus. However, that doesn't mean we should tolerate everything that seems to be our lot, since a lot can be done (with miracles of modern medicine, but also our own commitment to balance and self-care) to restore us as much as possible to full function and well-being. Best wishes for you as you start the process, and remember to remain curious and fascinated by it if you can... It's such a burden, but turning it into a challenge of gaining knowledge and insight, self-growth and wisdom to share, is the way I've been able to feel my life is in many ways better than it was before this wracking year and a half. For one, I'm ready for just about anything, as long as I have the resources to get through the flares!
susanjs said:Hi Jazmin,
I'm certainly not a medical expert but I would recommend you call your rheumy. You have so many symptoms that need to be reported! You'll get the hang of this invisible, nasty disease as you progress and will know when you are simply in a flare that you will live through or have symptoms that need to be looked at. I am particularly concerned about the breathing problems - don't take a chance on those! They could side effects of the drugs you are taking and it may be that your prescription(s) need to be adjusted. Please don't wait!!
One of the things I have learned through my journey with Lupus is that I need to take care of myself first. If my intuition or little voice inside of me is raising red flags, then I act. I don't care what the doctor thinks. I happen to have a wonderful rheumy who gets mad at me when I don't contact him...so there you go!
I am so sorry you are experiencing all of these symptoms! It is hard and you will find lots of support here..
Take care,
Susan
Susan
Brynn,
I must tell you, compared to a year ago I can certainly see the improvement in your speech and thoughts. And like you still have days I can't remember my way home. Ah, the joys of lupus. You are a wonderful person and there is definitely someone out there for you that will "get it". The treatment of the lupus symptoms is obviously the right call, and hey it's never too late to hunt down that other doc. If he knew you went to medical school, you must have scored well enough on your MCAT's that you obviously aren't an idiot. I can tell it, just by the way you write your posts.
But, anyway, plateaued or not, we are still going to have "those" days when no matter what we say, we are going to sound like bumbling idiots.
I read a saying somewhere..."Better to be thought a fool, than to open your mouth and remove all doubt". On my bad days, I'd rather just let people guess, lol.
Lots of love,
DeAnne
Faladora said:
Thanks DeAnne! I always remember your replies being so helpful, thoughtful, and better-organized (or at least briefer) than mine, so I would say it's surprising to hear you struggle with explaining yourself... but that's just how lupus is, ain't it? I was there last year too at times, but thankfully less often rather than not. I got super tongue-tied (which for me is more of a confused rambling, all sorts of words but not the ones I mean to say or can use effectively.... quiet altogether is REALLY bad) a few times over the summer, associated with extreme moodiness as well. It's always so hard to tell which factors stem from lupus activity and which ones from my various psychological and psychiatric problems, but in my mind they're all related.
As far as the topic of diagnosis, it was really hard for me to get anyone to believe the neuropsych components of it (other than my second rheumie and Seattle rheumie) since I would be very mentally functional, especially verbally, a lot of the time and during the bad times people just thought I was behaving myself and staying quiet for a change. Or, in the cases over the summer, the boyfriend I had at the time acted like I was intentionally making his life difficult and demanding his help without adequately explaining what I needed from him (duh, I can't think through it, thus I am asking for your help to think through what might help!) When I moved back here to CA we kinda had to go our separate ways anyway, but he still doesn't seem to get it about why I found his response to me to not be "good enough" when he was trying very hard to help as much as he could. Some people just get it, others don't. Glad your hubby is one who does, and I'm sure looking for one!
The neuropsychologist I was referred to by my rheumie actually used his snapshot assessment of my verbal abilities (when is a snapshot ever valid in lupus??) coupled with my complaints about difficulties with cognition/word recall, etc. to label me with somatization disorder layered over all kinds of other psychologist explanations. Luckily my awesome rheumie doesn't buy that and keeps treating the lupus aspects of it and trusting my own motivation and progress at managing my mental health conditions with the psychiatry and therapy I was already having. As far as the neuropsychologist, I wanted to hit him over the head saying of course I have above-average verbal reasoning even while I complain of being impaired... I'm FALADORA, after all, which means talks incessantly, in the 3rd language I speak! Verbal abilities are my major strong suit (hence studying Speech Language Pathology when I bailed on med school), so to have them deteriorate to a point that is noticeable to me may not put me into an objectively "impaired" category! If he could speak Spanish and hear the difference in my ability to speak that on a good moment vs a bad moment, it would be really obvious. Sometimes I'll sound college-educated and catch people from Cuba thinking I'm from Spain, other times I sound like a traveler doing their best or an elementary schooler with a speech impediment. Any time I can't speak English well is when I literally can't string thoughts together, and then people just assume I don't have anything to say. I NEVER have nothing to say, I'm Faladora, everyone! I'm glad you guys get me, because so many people out there, especially my own family, never seem to.
I'll keep you all updated on things I learn in Speech Path that relate to our verbal processing woes!
Brynn/Faladora
whathappensinvegas said:Super reply Faladora,
I am so glad that you are feeling so much better. I remember we were diagnosed about the same time, and like you have sort of plateaued. What my rheumy told me and my husband (according to him because I have such severe memory issues) is that the first year is nearly always just trying to stop the disease from escalating. Like you I am moderate to severe with lupus nephritis on top of it. But truly this time last year couldn't put together a sentence. This site and the sharing of knowledge and experiences has been the best medicine of all.
Hugs,
DeAnne
Faladora said:Wow, what a great way to put this delicate balance of a concern into such clear terms! Thanks, Susan!
For you Jazmin, I agree there is a ton going on worth seeing a doctor for, and I'd like to add that frequent doctor visits early on in your diagnosis are very normal and helpful to the doctors in characterizing your disease (you're right at the beginning, only 6wks in--diagnosis is a bit more of a process than a one-time fact!) For example, at the time of diagnosis, they would have noted some positive labs and characteristic symptoms, but probably not all of the ones that apply to your unique case of lupus. The more they can see it in action, the more definitive the disgnosis becomes, and they can better target your treatment, including increasing it. Perhaps at first your primary complaint was fatigue and joint pain. Plaquenil tends to help with those aspects, and they wouldn't know to treat other areas if you didn't have much to report initially about other issues. Reporting additional symptoms may take your diagnosis category from "mild lupus" to moderate or severe lupus in a variety of specific body systems, which is more urgent to treat with stronger meds, as others have said. Even if it doesn't change the course of waiting out plaquenil's slow motion to results, it's very important to know the different body systems affected, and they can't do anything for you without hearing what's going on. Like some others have said, later on you'll be able to know what fits into a category of lupus-related (especially if each area of activity is discovered and noted while your symptoms are still active now) and what you can do about it. Over time you'll learn what works and doesn't for each (stopping everything to rest is a good catch-all, but so difficult to accomplish in the real world!) Like Susan said, one of the things you'll need to learn is when to contact your doctor (and which type! Most of us have several specialists.) Early on, always err on the side of going in, so they can know how much needs to be done and take care of it as soon as possible to end your initial disgnosable flare.
As for my case, I was diagnosed about a year ago, and though I certainl had past symptoms and full episodes that are now pretty clearly related, what got me finally disgnosed was the sustained activity that built up over 2011 and early 2012. I too thought diagnosis meant I would be back mostly on track, with extra worries to juggle but not sustained heavy burden and risk. I'm pretty much in that zone now, but it took about a year longer than I thought to get there!vThe learning curve is steep, so that means you are very challenged by it but also make a lot of progress over a relatively short time! Of course we're all still on the learning curve, but I am certainly relieved to have made it to the part where it flattens out a bit more. For any nerds out there, what I just described is a logarithmic curve ;) Since I am a big nerd, primarily about biology and health, learning about the disease was fascinating and fun challenge for me. Having to learn the ropes of dealing with it happening to me made it all the more challenging, but very far from fun. Worst of all was the waiting game for treatment that worked to get me back to at least reasonable function with a tolerable symptom load. Since my first rheumie thought my case was milder, we started just plaquenil after a short course of low-dose steroids (medrol dosepak, a spike and quick taper regimen at much lower doses than the old approach with higher IV doses. Those are still needed for severe flares, but mine was in a state of chronic moderately high activity rather than an acute flare. The medrol helped a ton. As soon as I tapered off, symptoms came right back. I informed him of this, but we decided to wait out the plaquenil (I didn't realize at the time how helpful ongoing low-dose steroids might have been!)3 months went by and I was getting worse. I saw a second rheumatologist who agreed my case was more active systemically and also present in one of those tougher-to-quantify areas, in my central nervous system. But, that diagnosis process was a few months in itself, so meanwhile I hit my plaquenil 6-month mark feeling worse than ever! At that point my second rheumie started me on a moderate dose of medrol to take ongoing, and it helped immensely, but it took me months to keep undoing the damage to my wellness as well as work/financial/personal life even after the steroids made a big difference. Oh wait, I'm still struggling to rebuild, 9 more months later! But once I started the steroids I was at least in a phase of recovery and was fairly functional after 2-3 months even though I was still dealing with a lot of symptoms. What made the huge difference was the round of Rituxan I tried in April, which had been rheumie 2's suggestion but got delayed by my parents' strong suggestion to return to my hometown of Seattle to get better (aka dramatic refusal to keep helping me financially to keep putting one foot in front of the other in keeping my life going where I was living in the bay area in the hopes I'd be ready to proceed with grad school in the fall! Seattle ended up being nice in the end, but a 2-month delay in starting that treatment was a really counterproductive part of their plan, to say the least!) In the mean time as I was in transition, I tried CellCept, which put me in the ER for the nausea and vomiting it caused once I tapered up. CellCept is one of the oral ones that doesn't have the fertility risks (I'm 26 and single, but hopeful!), so I was really stressing when that was a total bust, yet all the more satisfied with Rituxan! It has some major potential (but rare) risks, but not really any side effects to speak of (a day and a half sleeping off the flu-like feeling right after infusion, but that's only two or three times a year.) I'm now back in the Bay, working half-time while I get ready to start grad school at the end of the month. When that happens, I'll also be working (even less time, just one day a week) while attempting a full-time course load (luckily spread over two full days and two half-days of class.) Based on what I know so far, that's a bit beyond my limits even at the best I've felt since successful treatment. However, I'm repeating Rituxan soon (hoping before school starts, but the insurance is holding it up... going to be 2 months later than recommended, again...) This is another thing you'll learn to expect and counteract when you can: huge delays and tons of administrative disasters you have to take charge of yourself, when all you need is to just rest, get the treatment that will help, and not be buried in bills while you struggle to even be able to work at all!
I'm so sorry it's not a very appealing welcome to lupus, but I hope my story helps you prepare for a potentially really rough time, take prosctive steps to minimize it, and have hope that you can get through a hellish year and still make your way back to better health and greater ambitions, even if less than they once were. Learning to let go of being and doing everything you had hoped, or at least having to adjust the way your goals dreams take shape and overhauling the means of achieving them, is a major part of lupus. However, that doesn't mean we should tolerate everything that seems to be our lot, since a lot can be done (with miracles of modern medicine, but also our own commitment to balance and self-care) to restore us as much as possible to full function and well-being. Best wishes for you as you start the process, and remember to remain curious and fascinated by it if you can... It's such a burden, but turning it into a challenge of gaining knowledge and insight, self-growth and wisdom to share, is the way I've been able to feel my life is in many ways better than it was before this wracking year and a half. For one, I'm ready for just about anything, as long as I have the resources to get through the flares!
susanjs said:Hi Jazmin,
I'm certainly not a medical expert but I would recommend you call your rheumy. You have so many symptoms that need to be reported! You'll get the hang of this invisible, nasty disease as you progress and will know when you are simply in a flare that you will live through or have symptoms that need to be looked at. I am particularly concerned about the breathing problems - don't take a chance on those! They could side effects of the drugs you are taking and it may be that your prescription(s) need to be adjusted. Please don't wait!!
One of the things I have learned through my journey with Lupus is that I need to take care of myself first. If my intuition or little voice inside of me is raising red flags, then I act. I don't care what the doctor thinks. I happen to have a wonderful rheumy who gets mad at me when I don't contact him...so there you go!
I am so sorry you are experiencing all of these symptoms! It is hard and you will find lots of support here..
Take care,
Susan
Susan
Hello! I was recently diagnosed and started the same meds. almost 3 weeks ago. I'm feeling better. Not so tired, pain is dulled. I can't take any OTC or prescription anti-inflammatories right now. I'm allergic to sulfa, so praying this is enough. I've had no symptoms like you describe, but my stomach troubles are a bit worse. I'd all the doctor and check. Could be a seasonal allergy. I have fall allergies to rag-weed...do you have that where you live?