Sjogren's Syndrome Support Group
Sjogren's syndrome is an autoimmune disorder in which immune cells attack and destroy the exocrine glands that produce tears and saliva. It also associated with rheumatic disorders such as rheumatoid arthritis, and it is rheumatoid factor positive in 90 percent of cases.
I saw my rheumy last week. He is weaning me off prednisone and I firmly believe that this is worse than being on it!! My muscles ache and I have had a headache since beginning the weaning process.
He said that since the 20mg a day seemed to be doing very little for my joints, instead of increasing the dose he wants me off completely. He gave me a shot of Kenalog in one of my elbows to see if that helped and wants to repeat the process in 5 weeks, but that was horrible and the elbow he injected feels even worse than it did before. UGH!!!
I have also been going to physical therapy twice a week for several weeks and don't notice much improvement in my range of motion. On the days I have therapy I am exhausted and don't want to do anything but sleep.
A while ago he prescribed Vicodin for pain and for a while I refused to take it because of my own fears of addiction and losing my job because of it, but now I heavily rely on it to help me get even a bit of sleep. I still wake in the middle of the night in pain, but I am so groggy that I don't get up and sit in front of the tv all night waiting to fall back to sleep.
I still work full time because right now I don't have much of a choice, but between the brain fog and pain, I am useless. I work 12 hour shifts as a nurse and once I hit about 6 hours I am done. I can't think straight, I am exhausted, and I hurt. I sometimes think I am a danger to my patients but fortunately starting IVs and other clinical duties have become second nature and I don't have to think much when they need to be done. I once used to be able to look at a sick kid and know what was wrong with them and anticipate the course of treatment. Now I look at a kid with head congestion and an ear ache and can't even think of the words to document.
My husband still has a really hard time with my disease and the way it is progressing. One minute he tells me to go on disability because when I am home I am so exhausted I don't want to do anything and other times when I mention it, he tells me if I quite the disease is winning and tells me not to give up.
My kids are paying the ultimate price. I can't do anything with them except sit and watch them play.
I have had it!! I don't know what to do with myself and I feel like I am being torn in different directions. I am trying to save every little penny in anticipation of whats to come but I really don't think I can push myself any further. I wanted so bad to ask my doctor about disability last week, but I chickened out. I am afraid he will yell at me the same way my husband does and tell me I don't need it.
And now, with all the other symtoms, I have even more muscle pain and a headache that won't go away because of the weaning process. I can't function like this much longer.
He said that since the 20mg a day seemed to be doing very little for my joints, instead of increasing the dose he wants me off completely. He gave me a shot of Kenalog in one of my elbows to see if that helped and wants to repeat the process in 5 weeks, but that was horrible and the elbow he injected feels even worse than it did before. UGH!!!
I have also been going to physical therapy twice a week for several weeks and don't notice much improvement in my range of motion. On the days I have therapy I am exhausted and don't want to do anything but sleep.
A while ago he prescribed Vicodin for pain and for a while I refused to take it because of my own fears of addiction and losing my job because of it, but now I heavily rely on it to help me get even a bit of sleep. I still wake in the middle of the night in pain, but I am so groggy that I don't get up and sit in front of the tv all night waiting to fall back to sleep.
I still work full time because right now I don't have much of a choice, but between the brain fog and pain, I am useless. I work 12 hour shifts as a nurse and once I hit about 6 hours I am done. I can't think straight, I am exhausted, and I hurt. I sometimes think I am a danger to my patients but fortunately starting IVs and other clinical duties have become second nature and I don't have to think much when they need to be done. I once used to be able to look at a sick kid and know what was wrong with them and anticipate the course of treatment. Now I look at a kid with head congestion and an ear ache and can't even think of the words to document.
My husband still has a really hard time with my disease and the way it is progressing. One minute he tells me to go on disability because when I am home I am so exhausted I don't want to do anything and other times when I mention it, he tells me if I quite the disease is winning and tells me not to give up.
My kids are paying the ultimate price. I can't do anything with them except sit and watch them play.
I have had it!! I don't know what to do with myself and I feel like I am being torn in different directions. I am trying to save every little penny in anticipation of whats to come but I really don't think I can push myself any further. I wanted so bad to ask my doctor about disability last week, but I chickened out. I am afraid he will yell at me the same way my husband does and tell me I don't need it.
And now, with all the other symtoms, I have even more muscle pain and a headache that won't go away because of the weaning process. I can't function like this much longer.
I wonder if he'd be willing to try methotrexate as you wean down on pred.
And how fast is he going to wean you down from the Prednisone? I urge you to post about weaning from the pred on the lupus board. Lots of the people over there have gone through the weaning process and are able to give you some good advice about it. It takes some a significant amount of time to get off of this medicine. I'd hate for you to wean off too quickly and something bad happen.
Take care and I hope things go well.
I am already on methotrexate. When I was first diagnosed with Lupus in 2004 I was put on Plaquenil and felt fine until after the birth of my third baby almost 5 years ago. Then I started having all these crazy flares, joint pain, extreme fatigue, dry eyes complete with corneal abrasions, dry mouth with dental problems.
I chalked some of it up to having an 8 year old, 6 year old, newborn, working full time, and returning to college. But it just kept getting worse.
Then one day I saw my rheumy and he noticed black streks on my face and legs. Shortly after that I had a toxic reaction to the Plaquenil and was taken off immediately. In turn, he put me on methotrexate and I have been on in since. I take 20mg a week now and really have not noticed a difference.
The Prednisone seemed to help very little. The one thing that did work well was Cymbalta but it is not on my insurance plan and I can't afford it.
Anyways, last week my rheumy told me he wants me off prednisone and told me to start weaning but never told me how he wanted me to do that. I think being that he knows I am a nurse he just assumes I know so I started weaning the way I remember to do it. Slowly!! I was taking 20mg a day and now am taking 20mg every other. Saturday it will be every third day....until I am off.
Slow is much better when you are getting off prednisone. I would have thought he would want you to drop the daily dose slowly down to 5mg and then start skipping a day until you were off it.
It sounds like your options are few if Plaquenil gave you toxic side-effects. What about an increase in the Methotrexate?
I can't help with a note but do want you to know that I'm feeling your frustration and hope that a balance will be achieved sooner than later for your sake!