Hi to all, I hope that you can help me with a couple of things. I've been diagnosed with SLE for about 2 years and have done well with plaquenil. My labs have been normal except for ANA of 350 and double stranded =10 for 3 visits in a row. that's when i was started on plaquenil. In the last 3 months, i've had to be on titrating dose of prednisone 3 times. i'm good for a little while after the prednisone is stopped, then start up with flare symptoms again. My doctor started me on low dosage of methotrexate and i started that last saturday. I'm really discouraged about having these flares when my blood work looks so good and i'm discouraged in general about feeling sick all the time. I get extreme exhaustion, low stamina, sores on hard palate, malaise, joint pain (but not severe), frontal headache constantly. I think part of this is my difficulty accepting a chronic disease, no matter the severity. i feel kind of lost. i'm sure my friends and family are getting sick of hearing about it. if people ask if i'm ok, i just answer yes, because, it's too complicated. any feedback about how you adjusted and how you cope would be appreciated. i'm working full time as a nurse, have missed a lot of work because of this. i'm also worried about that.
Hopefully the methotrexate will help put you on an even keel- then its a bit easier dealing with a chronic illness
I understand how you feel and it’s hard to keep on keeping on when so many days you want to throw in the towel, but there will be better days. Just enjoy the good days and if the methotrexate doesn’t work maybe something else will. I will pray for you.
How long have you been on the Plaquenil? It took me about a month or so before I really noticed a difference. My rheumatologist told me that the lower the dose, the longer it takes to kick in. It helped me with the fatigue, a lot, but I still have my days where I need a 2-3hr nap. I was also placed on Elavil for my constant headaches. It gave me really weird dreams at night, but I chose the dreams over the headaches/migraines. I stopped taking it after a few months and the headaches/migraines were completely gone. I'm sure they'll come back next time I flare up, but for now, I'm glad they're gone even without being on the Elavil. Give the methotrexate some time to kick in. Hopefully you'll notice a difference soon and start feeling a little better.
For coping and adjusting, I needed to arm myself with all the information possible when I was diagnosed. Some people get more worked up and anxious about things when they do that, but I like to know what I'm in for, what to report to doctors, what to expect, and why exactly this illness does what it does. This group has been a great resource for all of that. I also try to take at least 30 minutes of "me time" a day. Time to just relax and rest my body. Sometimes that has to be 30 minutes at night right before bed, but it still helps. A good soak in the tub with some bubbles or Epsom salt and a good book can help with joint pain and help you relax. Listen to your body and go with your gut. Arm yourself with a good doctor and support system. I mostly come to this group to vent about how I'm feeling because I don't want to bug my family with it. Ya know? I also journal when I'm feeling bad and all the emotions I went through with diagnosis. It helps release all the emotions and process everything. Take everything one day at a time. Try to find a few positives in each day. A lot of people have kept calendars to track symptoms and flare-ups to identify their flare triggers and to keep track of their medications and what they've tried to relieve the symptoms. When I had my migraines, I would write what the pain was before medication (that lovely 0-10 scale), what I took and how much, and rated the pain an hour afterward. When I showed up for my very first rheumatologist appointment, he was so happy I had tracked everything for him on a calendar. He copied it and put it in my chart. Stress is a huge trigger for myself and many others which is why I'm big on finding a little time each day to unwind.
I hope you're able to benefit from some of these suggestions and find your own groove with coping and getting adjusted to all of this. Praying the methotrexate and Plaquenil start making a difference for you!
Topamax I have been taken for yrs and my head is under control. I DO NOT miss any dose of them as I have pd the price. 100mg at bed 50mg in morning . Sorry but understand that u dont talk to ppl. As I dont either. Its like they r sick of hear. Well I am sick of living with this alone and keeping it inside so much. It just piles up. Good luck.
What a great question: How do you cope with Lupus? I don't have the answer, but, through trial and error, I can share my methods. I too, worked full time, in a job, I missed a lot of time from work too. Understand, you may have to miss more time than you expect, with body reactions to medication changes and physical pains. So plan ahead. I suggest telling your job with HR present, about your condition, as you qualify for ADA accommodations, which can include a work schedule adjustment. If things get too bad then you can apply for FMLA, but, try the work schedule adjustment first. Then, plan to get social services, snap, I know it is not the best, but, it might be good, when you have one less bill to worry about, especially when medication costs can increase and your appetite. If you have kids, that is best method to ensure, they will not be affected by the reduced income from your absences at work.
I too do the "I'm fine" response, because in the end, its a lot easier then burdening people with problems they don't understand and can't fix. Good Luck.
Thanks to all of you for the support. Ballerina, i've been on plaquenil for almost a couple of years and yes , it helped quite a lot. Your advice for coping by taking one day at a time and the other things you mentioned , i will definitely do that and not worry so much about everything in the future. Luckily, i'm a late onset lupus person, so i'm 61 and have been in my place of work for 25 years. i've talked with my manager because i was applying for FMLA and he said to hold off for now because we could work it out between he and I. i never missed worked before the last couple of years. also, luckily, for all these years i've been paying in for long term disability so that if things got a lot worse i could get that. --unshore, i also thought about HR and a work accommadation, still working that out in my mind. i also developed a nasty cold the am after starting the methotrexate which i know is coincidental but hasn't helped my discouragement this week. i missed monday and tuesday of work. take care. and again thanks,mary
Hi Mary
I was diagnosed with Lupus late in life - at 49. The fatigue is one of the difficult things for me. Also, I thought I was having hot flashes, but I've noticed they've stopped when I started taking my vit D supplements regularly. I don't know if its cause/effect - but they are gone.
I recently was listening to a co-worker talking about crohn's and that she had a difficult time accepting that she had a chronic disease. It is challenging to accept -but be kind to yourself. Give yourself time, and then one day - it is what it is.
Sweetie,
I am sorry that you are having a difficult time. Plaquenil takes a VERY long time to take effect (sometimes 6-8 months) so don't be discouraged if you don't see results right away. This is why many doctors prescribe the Prednisone as well. I have never been on the Metho so not sure of the side effects of that. I am ANA negative so must always look at other labs. This, however is just one of the many blood tests used in deciding your tx plan. I hate to break it to you but fatigue is just one of those things that is part of our disease. Many times Lupans are anemic or suffering from another vitamin deficiency.
I am not a doctor, but you need to be notating everyday your symptoms for that day and anything that may have brought on a "flare". As to your headaches, this is indicative of CNS involvement and definitely should be discussed with your Rheumy.
I started on 70 mg of prednisone and have tapered off to 10...however I am unable to go any lower without just asking for a flare to come and bite me on the butt. Not that I don't still have flares, because I do. I just think I would have more if I were to keep attempting to lower my dosage. At some point we are going to have to find something else and I am currently on CellCept as well, but being ANA Neg means that Benlysta is not an option for me.
The good news is that I read recently about another new medication in clinical trials although for the life of me I can't remember the name.
As I mentioned, please note EVERYTHING as this will help your doctor in your treatment. If he/she is unaware that you are having headaches, they can't be treated. This disease is an equal opportunity pest and no cell is safe.
I hope this was helpful, and I hope you feel better soon. I don't know how long you have been on the Plaquenil, but like you once it started taking effect I started doing much better, but alas, I don't foresee stopping the Prednisone anytime in the near future.
Big hugs,
DeAnne
Hi, it was strangely comforting to read your note. You seem to feel how I feel but I have not been able to put it into words. I was diagnosed with SLE in November and still trying to figure out lots of things. As the bread winner in the family,my biggest worry is keeping my job and our income to pay the mortgage, bills etc. I seem to be doing ok with hydroxychloroquine but find the unpredictability of the days very challenging. I just try to have each day at a time. I make very few forward social plans because I just focus on getting to work and making sure kids are ok.The rest has to give. I like the ballerina8876 advice below about coping. I do think stress and worrying can be a trigger for pain and bad days so I am trying to work out a coping strategy and like this idea of taking out 30 minutes to relax, take a bath or just lie down and clear my mind of stress and worry. I have joined this site and read it a lot but haven’t felt confident to write until now so thank you for giving me the courage. I hope your medication helps you and things settled down xxx
Gooner, it does make you feel better to have someone affirm what you're going through. A big part of lupus is that you look fine so i sometimes find myself in the position of having to convince others, even myself sometimes that i have a chronic illness--even my doctor said last visit, i better test your thyroid because that can also cause fatigue!! ps my thyroid functions are fine--i have never felt this type of debilitating exhaustion. i'm kind of turning into a hermit because of not having energy to call anyone or go anywhere. i have to figure out some way around that. talk to you all later. mary
Hi!!, well having Lupus is very discouraging with the name itself-smile. But you will survive . We all have these problems! Dealing with family is very hard , they don’t understand really what is happening to you at all. Yes it is very difficult for them to relate to the ideal of you won’t be the person they know personally . Everyone has different ways to adjust to change , and explaining how you feel (which they don’t have a clue because Lupus is not common knowledge). In their eyes you are not who they know!!! To see you like this is very disturbing to them. It is up to you to help them as you learn also! The more you get knowledge of Lupus and share with them everything will work out. Once again we all have been at this point. There will be times saying you are okay and there will be many times you will responded some crazy aggressive words toward them , just because Lupus make us crazy ! Now working on your job, that is another subject , and some people really do care but some that really don’t !! Which make you feel frustrated at times , but if you can handle your job , I say to you , "Hang in there for as long as you can !!! If you have not expressed to your boss or supervisor -you should do this as soon as possible ! Let them know you have Lupus , which comes with alot of flares and it affects you in different ways, and you will try as much as possible to maintain your job. Hopefully they will understand -did I say hopefully ?? But you having Lupus is a world by it self, find out articles , pamphlets , take someone with you to doctor visits to sit in when you have appointments also help to end stress moments (this will help that person relate the words from the doctor that can come from their mouth to the rest of the family/friends, it works). Remember we all have /has been at the same point somewhere before-smile. You have to be the one who take control as much as you can , as you know Lupus is something else! Your health is yours alone , NOONE can do that part BUT YOU!! Hope this helps in some way !!! Stay strong , hold on to Faith , don’t stress, relaxing is the key! Come here whenever 24/7/365days at anytime for the mental part, even if you want to vent , read experiences that others have had, even let your family join in with you sometimes here , Living with Lupus family (this also works ). Don’t get over whelmmed , with stress -that make a terrible FLARE come about!!! …Beverly L.
Sorry this is long!!
Thanks for you help and encouragement Beverly. taks care, mary
Beverly L. said:
Hi!!, well having Lupus is very discouraging with the name itself-smile. But you will survive . We all have these problems! Dealing with family is very hard , they don't understand really what is happening to you at all. Yes it is very difficult for them to relate to the ideal of you won't be the person they know personally . Everyone has different ways to adjust to change , and explaining how you feel (which they don't have a clue because Lupus is not common knowledge). In their eyes you are not who they know!!! To see you like this is very disturbing to them. It is up to you to help them as you learn also! The more you get knowledge of Lupus and share with them everything will work out. Once again we all have been at things point. There will be times saying you are okay and there will many times you will responded some crazy aggressive words toward them , just because Lupus make us crazy ! Now working on your job, that is another subject , and people really do care but some that really don't !! Which make you feel frustrated at times , but if you can handle your job , I say to you hang in there for as long as you can !!! If you have not expressed to your boss or supervisor -you should do this as soon as possible ! Let them know you have Lupus , which comes with alot of flares and it affects you in different ways, and you will try as much as possible to maintain your job. Hopefully they will understand -did I say hopefully ?? But you having Lupus is a world by it self, find out articles , pamphlets , take someone with you to doctor visits to sit in when you have appointments also help to end stress moments (this will help that person relate the words from the doctor that can come from their mouth to the rest of the family/friends, it works). Remember we all have /has been at the same point somewhere before-smile. You have to be the one who take control as much as you can , as you know Lupus is something else! Your health is yours alone , NOONE can do that part BUT YOU!! Hope this helps in some way !!!! Stay strong , hold on to Faith , don't stress, relaxing is the key! Come here whenever 24/7/365days at anytime for the mental part, even if you want to vent , read experiences that others have had, even let your family join in with you sometimes here , Living with Lupus family (this also works ). Don't get over whelmmed , with stress -that make a terrible FLARE come about!!!! ...Beverly L.
No problem ! That’s why we are all here for-to help ease the tension and get support from others we don’t have to explain to…Beverly L.
Just take things day by day