I have been recently told that I have 'probable' Lupus, and started taking Plaquenil several days ago. What I'm wondering is how do you know if you are in or out of a flare? I'm sure I was having a major flare when my pelvic issues-adhesions, Adenomyosis, and fibroids-started causing me a lot of pain. Then before I knew it I was practically bed ridden and couldn't take care of my family. I saw a lot of doctors and didn't know what was wrong with me, except for the pelvic issues.
Now 2 months post-surgery, I wake up every day feeling horrible, and that's after 8 hours of sleep. I'm still very tired all the time, but the flu-like feeling subsided. I get muscle twitches and headaches, but I don't really know if I'm in a flare. How do you determine that? I'm sure it's different for everyone. I started a journal.
Hi Nicole... Just wondering, why are they calling it probably lupus?? Is your bloodwork inconclusive?? I'm asking because I guess I'm at the same stage although not having the issues that you are at this point. My first set of tests came back that my antibodies were elevated so my dr. sent me to a rhuem dr. to have further testing.
My symptoms are hair loss, skin lesions and rashes, fatigue, etc...The worst being hair loss.
I'm sorry you're experiencing these awful symptoms:( Kim
Actually, my bloodwork is conclusive. The anti-Smith antibody is specific to Lupus. Did you have a positive ANA? Maybe the Rheum. will check for the more specific antibodies.
My doctor said 'probable' because he didn't want to rush into a diagnosis and then have me put on steroids or something. That's what he said. Plus, I only met 3 criteria, and you need 4 for diagnosis. I have noticed hair loss. Does your come out in clumps or something? Mine is just like when I brush it more than normal falls out into the sink. So it's hard to tell for me.
Well, I hope you find a Rhuematologist that you like and they catch it early.
Yes, my ANA came back positive but it wasn't enough testing for him to be sure...Everything is a blurr right now but I remember seeing sjogren's syndrome on the paperwork although I don't have the symptoms of it.
How long have you been losing your hair Nicole? I think out of everything, that is the hardest for me to accept. At first it was clumps but now it's all over. I started taking apple cider vinegar and we'll see if that makes any difference...
I'll have to look up the anti-Smith antibody. Do you have joint pain with that??
It's all so confusing to me right now, but I guess when I get the results back, I'll know how to focus my thoughts. Right now it just seems like there's so many different forms of the disease. Maybe that's why it's so hard to diagnose and treat??
Take good care Nicole and I hope you're feeling ok... Kim
I'm under a excellent Dermo in the UK and i can never knock the man regarding his treatment to myself.
Some Doctor's like to make sure by saying you don't meet the criteria just to cover themselves, Nicole you would'nt be on Plaquenil if you did'nt have Lupus or any autoimmune disease/s besides ANA testing does'nt have to come in positive to have Lupus or any autoimmune disease/s....plus you must always remember this that Lupus itself fluctuates your bloods and if tests come in negative, that reading could be false through Lupus...i had anaemia for a good while but before they could treat it, it took my bloods 6mths to show a positive reading on it.
A flare if you have one wheather it comes with the skin or joint pain can last from several days to 2wks but if it stretches as long as 6wks and over your into a chronic flare.
Loss of hair does happen and i now keep my head skinned short pointless growing it, i've had a bad case of what looks like ringworm but it's actually been psoraisis mimicing it, there's no end of skin condtions which come with it.
I have pain which shoots from one joint to another and which as lodged in my elbow and before i was diagnosed it was treated for tennis elbow...Lupus and autoimmune diseases mimic other problems.
Kim i have sjogrens bad in my system, it causes a dry mouth where it drys your salivia up and you need to drink alot more, dry eyes that feel like grit or sand is in them mine also swell badly at times, i'm now being described Gel to add to my eyes to make false Tears, it also drys your gullet up where food digests and you have to becareful as some food cause severe pain when trying to go down and it stabs pain into your back....it also causes paralization it works from the muscles in the face downwards into the body and also muscle wastage which it's give me...there's alot more to it than just eyes which alot of people think.
Kim apple cider vinegar is good for amny issues but it does cause weight loss and if your thin watch how much you have.
Foggyness of the brain besides fatigue is a main issue with Lupus so you have to learn to pace your daily routine out to help your body plus it thrieves off depression and can make your symptoms feel alot worse.
I noticed the hair loss sometime after the fatigue and everything else started (8 months ago). For me, I still have thick hair, except for my hairline which is thinner than it used to be. The hair loss is just like it was post-pregnancy, and I though maybe I just hadn't shed it all yet.
I have joint pain in one elbow and that's it.
Keep us posted on how your further testing goes.
Nicole
Kim said:
Yes, my ANA came back positive but it wasn't enough testing for him to be sure...Everything is a blurr right now but I remember seeing sjogren's syndrome on the paperwork although I don't have the symptoms of it.
How long have you been losing your hair Nicole? I think out of everything, that is the hardest for me to accept. At first it was clumps but now it's all over. I started taking apple cider vinegar and we'll see if that makes any difference...
I'll have to look up the anti-Smith antibody. Do you have joint pain with that??
It's all so confusing to me right now, but I guess when I get the results back, I'll know how to focus my thoughts. Right now it just seems like there's so many different forms of the disease. Maybe that's why it's so hard to diagnose and treat??
Take good care Nicole and I hope you're feeling ok... Kim
Thank you for your response. I was thinking that the anti-Smith is so specific for Lupus that why wouldn't he just diagnose it. Maybe for insurance purposes, or to cover himself like you said. He said that once I got a Lupus diagnosis every doctor will want to put me on cortosteroids. But he's the only doctor I see for it! Anyway, he spends a lot of time with me, and is the most thorough doctor I've encountered. Every other type of doctor I see raves about him. I'm just glad to be getting treatment! I hope this Plaquenil stuff does something for me.
Nicole
Tez_20 said:
Hello Nicole & Kim,
I'm under a excellent Dermo in the UK and i can never knock the man regarding his treatment to myself.
Some Doctor's like to make sure by saying you don't meet the criteria just to cover themselves, Nicole you would'nt be on Plaquenil if you did'nt have Lupus or any autoimmune disease/s besides ANA testing does'nt have to come in positive to have Lupus or any autoimmune disease/s....plus you must always remember this that Lupus itself fluctuates your bloods and if tests come in negative, that reading could be false through Lupus...i had anaemia for a good while but before they could treat it, it took my bloods 6mths to show a positive reading on it.
A flare if you have one wheather it comes with the skin or joint pain can last from several days to 2wks but if it stretches as long as 6wks and over your into a chronic flare.
Loss of hair does happen and i now keep my head skinned short pointless growing it, i've had a bad case of what looks like ringworm but it's actually been psoraisis mimicing it, there's no end of skin condtions which come with it.
I have pain which shoots from one joint to another and which as lodged in my elbow and before i was diagnosed it was treated for tennis elbow...Lupus and autoimmune diseases mimic other problems.
Kim i have sjogrens bad in my system, it causes a dry mouth where it drys your salivia up and you need to drink alot more, dry eyes that feel like grit or sand is in them mine also swell badly at times, i'm now being described Gel to add to my eyes to make false Tears, it also drys your gullet up where food digests and you have to becareful as some food cause severe pain when trying to go down and it stabs pain into your back....it also causes paralization it works from the muscles in the face downwards into the body and also muscle wastage which it's give me...there's alot more to it than just eyes which alot of people think.
Kim apple cider vinegar is good for amny issues but it does cause weight loss and if your thin watch how much you have.
Foggyness of the brain besides fatigue is a main issue with Lupus so you have to learn to pace your daily routine out to help your body plus it thrieves off depression and can make your symptoms feel alot worse.
Although you get on with him that's all that counts and don't listen to other's but in years of experience i'd say your specialist is covering himself...we all have to look at it like this they're in a profession they wanted and won't see if get armed so they play by the book.
Like i say you don't have to have positive results by a flare alone it can be diagnosed...if he does go into cortosteroids expect to gain weight but i'm saying that years back i was on steriods and went to 18st and mew a few people the same steriod never affected.
Regarding plaquenil i had side affects bad with it but not everyone gets the same affect from a drug and i pulled myself off it as i was taking it during the day amongest my other's but someone told me take it at night not long before going to bed as you'll sleep the side affects off, i adjusted it to night and after a week nothing but plaquenil is mainly for skin disorders and DLE but it does ease the joints also...it's surposed to take 6mths to work it started on me at 3mths plus it's not a steriod med and you also lose weight with the drug.
I wish you all the best Nicole and takecare Love Terri xxx
What side effects with Plaquenil did you have? I had bad headaches for a few days but now I'm not noticing much else. I'm hoping it will help the inflammation causing pelvic pain, and I guess my elbow joint pain. And the waking up feeling awful feeling. Fatigue is the worst thing for me, but I know there's no guarantee it will help that.
Best to you,
Love Nicole
Tez_20 said:
Hello Nicole,
Although you get on with him that's all that counts and don't listen to other's but in years of experience i'd say your specialist is covering himself...we all have to look at it like this they're in a profession they wanted and won't see if get armed so they play by the book.
Like i say you don't have to have positive results by a flare alone it can be diagnosed...if he does go into cortosteroids expect to gain weight but i'm saying that years back i was on steriods and went to 18st and mew a few people the same steriod never affected.
Regarding plaquenil i had side affects bad with it but not everyone gets the same affect from a drug and i pulled myself off it as i was taking it during the day amongest my other's but someone told me take it at night not long before going to bed as you'll sleep the side affects off, i adjusted it to night and after a week nothing but plaquenil is mainly for skin disorders and DLE but it does ease the joints also...it's surposed to take 6mths to work it started on me at 3mths plus it's not a steriod med and you also lose weight with the drug.
I wish you all the best Nicole and takecare Love Terri xxx
i have found that my flares are made worse by certaing foods...like gluten...and made worse by stress...but i don't think i have been flare free since this whole thing started.
it gets hard to change the way you gauge your pain...since i am never pain free i have used other markers to tell how well i am doing.
i am intrested in hearing how each of us rates our pain...and what makes us decided when it is time to worry...
can you let me know how you rate your pain vs well being
Hey sweety. Sorry your feeling so bad. I know the feeling...
So here is how I look at "flares" To me they are when I have to be hospitalized or when I am just feeling very bad like today. Alight I had pain in my lungs and could not sleep to save my life. The constant feeling of tired and the never ending aces in random place, muscle twitches, vision changes, dizziness and light headiness. Thats just because your lupus is active. Active meaning that your lupus is not in remission. When the lupus is active your have all the symptoms. Visible on blood work or not. Thats why they call lupus the invisible disease. A flare is when it completely knocks you off your socks. Like me today. every time I move a joint popps somewhere and breathing... well if I could stop breathing I would because it is soooo painful today. I hope this helps you
The side affects i had was severe nausea, chest pain, very bad panic attacks and if my hubby had to pop out i was on the phone to him to get back, the panic aatacks was making me feeling all enclosed, hot flushes on me more, there was a few more but being over a year and half i can't remember but i did know i was bad but like i said not all drugs affect people the same and some people never feel side affects it's all down to the individual.
I had elbow pain like yourself and was treated with an old GP for tennis elbow, it's seems like your getting what i have pain going through you body lodging in different area's which does cause some doctor's to think otherwise but i've fractured my pelvis twice through seizures and lucky i was never paralized for life but the pain lodges in that then it swells and goes like a sponge affect full of fluid....this your suffering similar to me is when the Lupus is more active.
Nicole i really do hope the plaquenil helps for you as it's not a bad drug once the side affects have carmed down but if you can take it before bed, the side affects you'll hardly feel after a few days....i took mine at 11pm at night.
My pain now is minimal, and I am starting to decrease my pain medication dose. I do think when I'm feeling bad and really tired my pain gets worse. I can't really give you a true number from 1-10 right now because I'm controlling it well, with physical therapy too. I'm wondering if, and hoping that I'm coming out of a bad flare, because last year when things started, my pain was between a 7-10 on a daily basis (pelvic pain from multiple issues). I've had surgery to treat that, and so my biggest issue is fatigue. Headaches have been a problem, and I would say I was probably in a flare and didn't know it when I had a non-responsive headache that brought me to the ER. Pain was a 10 then. So flares and pain levels must correspond.
I'm sorry you are in constant pain-that's so hard! I hope you are able to find something that works.
Nicole
janice said:
dear nicole,
i have found that my flares are made worse by certaing foods...like gluten...and made worse by stress...but i don't think i have been flare free since this whole thing started.
it gets hard to change the way you gauge your pain...since i am never pain free i have used other markers to tell how well i am doing.
i am intrested in hearing how each of us rates our pain...and what makes us decided when it is time to worry...
can you let me know how you rate your pain vs well being
Wow Terri (do you go by Tez, or Terri, or either?)-are you sensitive to medicine in general, or was it Plaq. in particular? I'm taking a low dose-I'm kind of sensitive to medication and sometimes a low dose is better for me. I take an anti-anxiety med for insomnia and anxiety so it's controlled right now. I think that I may have had Lupus for a while, because when I started probs. with insomnia, I felt like something was wrong in my body. It didn't matter what I tried, I would be up all night sometimes, without a reason to be anxious. This was soon after my first daughter was born, and I read that giving birth can bring on Lupus.
Okay, anyway, I got off subject, but yest the elbow thing is interesting. Would it kind of always hurt like you had bruised it, and then hurt more when you lifted something? I don't kwow what arthritis feels like-I just thought I had bumped it and had an extended bruised feeling! The pain for me kind of stays in the same places, but was allover when I had the constant flu feeling/aches (that must be a bad flare for me). Now what travels around is muscle twitching or spasm-ing. It'always somewhere different.
You've had seizures? What did that feel like? Did you know when one was coming? I've had strange neuro stuff happen when stressed. But never a seizure. Do you have to take medication to prevent them?
If that's personal it's okay-It's just like this puzzle has come together for me, and I'm interested to know all the different things people experience.
Thank you for all of your input.
Sending positive and continuous healing energy your way-
Nicole
Tez_20 said:
Hello Nicole,
The side affects i had was severe nausea, chest pain, very bad panic attacks and if my hubby had to pop out i was on the phone to him to get back, the panic aatacks was making me feeling all enclosed, hot flushes on me more, there was a few more but being over a year and half i can't remember but i did know i was bad but like i said not all drugs affect people the same and some people never feel side affects it's all down to the individual.
I had elbow pain like yourself and was treated with an old GP for tennis elbow, it's seems like your getting what i have pain going through you body lodging in different area's which does cause some doctor's to think otherwise but i've fractured my pelvis twice through seizures and lucky i was never paralized for life but the pain lodges in that then it swells and goes like a sponge affect full of fluid....this your suffering similar to me is when the Lupus is more active.
Nicole i really do hope the plaquenil helps for you as it's not a bad drug once the side affects have carmed down but if you can take it before bed, the side affects you'll hardly feel after a few days....i took mine at 11pm at night.
Darn, i just lost my response-maybe i sent it to someone else! getting used to the screens.
anyway, i'm sorry you are feeling bad! i am sending healing energy your way.
that is helpful to know-yes, when it knocks you down or sends you to the hospital that would be a bad flare. i've had mild but scary neuro stuff that sent me to docs but never knew what was going on! recently i've been through a massive flare and hope i'm coming out of it.....
best to you
nicole
sunshinespraypaint said:
Hey sweety. Sorry your feeling so bad. I know the feeling...
So here is how I look at "flares" To me they are when I have to be hospitalized or when I am just feeling very bad like today. Alight I had pain in my lungs and could not sleep to save my life. The constant feeling of tired and the never ending aces in random place, muscle twitches, vision changes, dizziness and light headiness. Thats just because your lupus is active. Active meaning that your lupus is not in remission. When the lupus is active your have all the symptoms. Visible on blood work or not. Thats why they call lupus the invisible disease. A flare is when it completely knocks you off your socks. Like me today. every time I move a joint popps somewhere and breathing... well if I could stop breathing I would because it is soooo painful today. I hope this helps you
Tez is my membership name but my name is actually spelt Terry with a (Y) but i spell it Terri with an (I) to stop confusion over me being a bloke.lol because before i joined the site i've had so many thinking i was a bloke but you can call me either.
I do get reactions to medications not all but it can happen, it's like my neuro she's took me to the highest in Tegretol besides Keppra and as soon as i've reached those limits she's had to drop me down one tablets, as my stomach gets upset besides nausea but i also carry a very addicitve system where it comes to coming off meds, i have to come off them very slowly otherwise pure shakes in my system. When i've been tested with anti-depressants in the past my persoanlity as lifted within 2wks say on 2 tablets then the next week i've gone rock bottom and been to get more...that's part of the addiction my system carries.
Well if lower dosages suite you better keep to that and i do feel for anyone with insomnia i've never had it but my hubby ste does and how he keeps going god knows with the little amount of sleep he gets....you most likely have had it for a while because lupus can cause insomnia besides it coming on naturally...actually if you really look into Lupus alot there's not one thing it does'nt cause besides mimicing also.
What you've just said about your elbow is identical and i had iburophen gel to rub on mine and after a year before i ever started plaquenil it went but it's come back now the lupus is so active, how you'll know what i mean and i hope it does'nt for you is if it hits your other elbow, when moving about....when it's moving about besides you flu like symptoms that's classes as a flare going on and it's the lupus acting very strongly in the system....muscle twitching besides spasms tha can be another flare on it's own because we don't always just have on flare going on several can which happened to me besides skin involved and it went chronic for just over 6wks but i'd also see your specialist about getting your nerves tested as mine was damaged years ago and they tested me twice through my fingers drigging off paulses with a machine and it tests how your nerves react.
I started going into autisums when i was 14 had'nt got a clue what i was doing till my mom pointed things out, it's a trance, then at 18 i came down a flight of stairs all limbs going apparentley they kept me in in hospital for a week, i've got Temporal-lobe epilepsy besdies grandmal and i'm highly drugged now as i used to have 18 seizures or more a day besides dropping into coma's because when they get to bad my heart can't cope....i never used to know when one was due and i was sent to a brain surgeon who told me in times you'll smell things and i do now, it's either stale urine or motion but i don't al always have a seizure on that day it can be 2wks later it's just a warning....i hope to god seizures never start either as they're a nightmare it took years fro me to mentally except it and now this ontop.
Nicole i've had other issues happen with me in 26yrs...which i'd never wish on my worst enemy though doctor's from the start diagnosing me wrong.
You takecare and all my love Terri xxx
Nicole said:
Wow Terri (do you go by Tez, or Terri, or either?)-are you sensitive to medicine in general, or was it Plaq. in particular? I'm taking a low dose-I'm kind of sensitive to medication and sometimes a low dose is better for me. I take an anti-anxiety med for insomnia and anxiety so it's controlled right now. I think that I may have had Lupus for a while, because when I started probs. with insomnia, I felt like something was wrong in my body. It didn't matter what I tried, I would be up all night sometimes, without a reason to be anxious. This was soon after my first daughter was born, and I read that giving birth can bring on Lupus.
Okay, anyway, I got off subject, but yest the elbow thing is interesting. Would it kind of always hurt like you had bruised it, and then hurt more when you lifted something? I don't kwow what arthritis feels like-I just thought I had bumped it and had an extended bruised feeling! The pain for me kind of stays in the same places, but was allover when I had the constant flu feeling/aches (that must be a bad flare for me). Now what travels around is muscle twitching or spasm-ing. It'always somewhere different.
You've had seizures? What did that feel like? Did you know when one was coming? I've had strange neuro stuff happen when stressed. But never a seizure. Do you have to take medication to prevent them?
If that's personal it's okay-It's just like this puzzle has come together for me, and I'm interested to know all the different things people experience.
Thank you for all of your input.
Sending positive and continuous healing energy your way-
Nicole
Tez_20 said:
Hello Nicole,
The side affects i had was severe nausea, chest pain, very bad panic attacks and if my hubby had to pop out i was on the phone to him to get back, the panic aatacks was making me feeling all enclosed, hot flushes on me more, there was a few more but being over a year and half i can't remember but i did know i was bad but like i said not all drugs affect people the same and some people never feel side affects it's all down to the individual.
I had elbow pain like yourself and was treated with an old GP for tennis elbow, it's seems like your getting what i have pain going through you body lodging in different area's which does cause some doctor's to think otherwise but i've fractured my pelvis twice through seizures and lucky i was never paralized for life but the pain lodges in that then it swells and goes like a sponge affect full of fluid....this your suffering similar to me is when the Lupus is more active.
Nicole i really do hope the plaquenil helps for you as it's not a bad drug once the side affects have carmed down but if you can take it before bed, the side affects you'll hardly feel after a few days....i took mine at 11pm at night.
