Please tell me this is not permenant

[terri9967]

I woke during the night to extreme pain in my right hand. Located around entire wrist, top of hand, palm, and fingers. Constant ache with severe sharp pains. Also, unable to use my hand at all. I can open my hand but when I try to close it I can only go half way. Trying to close my hand doesnt cause pain I just cant do it!!! I can use my other hand and force my fingers to close, but I can do it on my own. There is no swelling, but to touch the fatty part of palm where the muscle for the thumb is hurts to touch.

I dont have any pain when I open my fingers but if I try to hold anything with any weight, like a brush, causes extreme pain and I end up dropping it.

I recently had a emg and I do not have carpal tunnel. I did find out I have polymyositis as well as SD and fibro.

I am concerned this is something to do with one of the diseases and will end up permanent!!!

Any help would be wonderful!!!!!

BTW typing with one hand stinks!!!!

Hugssss
Terri

[steve201]

man terri....sorry to hear about that....all that I can suggest is keep the hand warm..call your doc and see if he will put you on prednisone or some other drug that will help reduce the flair...

Steve

[terri9967]

Hi Steve

I am already on steroids and there is no swelling that I can see anyway. I tried heat and ice both during the night and had no luck with either. I hope to be able to see the doc tomorrow

[Cubby]

TERRI: That is how my hands were when they contracted. Since you are reluctant to start AP, have you considered IVIG and Cellcept? Also, I must tell you, the stress in your life is not causing the disease to progress, necessarily, but it sure it aggravating it. I hope you called your doc right away.

[terri9967]

Hi Cubby

I am on Cellcept now, have been for about 3 months now, my doc just increased it to 1000mg in am and 500mg at night.

I had asked about IVIG about 6 months ago and I cant remember why we didnt go with it. I had mentioned to her about AP and she doesnt believe in it. And I can not afford to fly to a doctor that does do it. But I am wondering if my family doc would try me on it? Can you email info I can give him on how the treatment is done? I think he would give it a try, even though it would most likely tick off my RA if I do it, but at this point I really dont care anymore, willing to try anything to stop this from getting any worse!!!

Hugssss
Terri

[steve201]

Terri
minocycline is used at about 200 mgs twice daily...it's a mild ap but seems to be best...I had to switch to tetracycline cuz of severe tanning.....so..now that I've been on tetracycline...I'm way better......so..I'd definitely try it ...it's cheap and even if it doesn't work...it doesn't cost much....and shouldn't have any side affects......


Steve

[jeffn]

Terri - Not good news for sure. Your hands with the exception of swelling appear to be progressing much like mine did. The swelling may be under control due to the prednisone or maybe just different. First off there would appear to be a direct correlation with the progression of your SD and the stress you have been telling us about in recent posts. I won't presume to tell you how to lessen your stress level but it seems that you need to - somehow. Second I would urge you to escalate your treatment before you fingers curve. I had the same issues with finger mobility as you describe but early on I could straighten my fingers out with my other hand, they would go straight but not without help. About eight months after my SD went active the middle and index finger on my left hand became VERY painful and they began to curve. The curvature took place over a ten day period then the process stopped. A month later my right hand did the same thing. This was before I was even DXd so I really was not on any meds at the time except for NSAIDs. Now my hands are in much better shape with less pain and much more mobility BUT my fingers are still curved. If I lay my hands on a table the middle joint is about 3/4 inch off the table, not bad but life would be easier with straight fingers. Try to prevent the curvature if you can.

In regard to AP I know when we corresponded on the old board you said that you preferred not to frequent the RBF board but they have a down loadable info packet for Doctors outlining the AP process. Here www.roadback.org/index.cfm/fuseaction/education.sub/subgroup_ID/30.html Way back when I also spoke with a RBF volunteer in my area and she was able to direct me to an AP doc not too far away. No sales pitch just good info, the decision was mine to make. Barring that if you were interested in AP I would read the Scammell book if you have not already. That way you can go in to your Docs with some info. I did the same thing before seeing my AP Rheumy. When I spoke with my GP about AP he said he would work with me. I don't know if he really believes but he is supportive. I am on 100mg of mino twice a day seven days a week which appears to be common although many that frequent AP docs start out with antibiotics IVs. I did not but if I were start over I might be curious and look into that further. I think my GP figured that with the limited downside of mino it was worth a try and I believe it can be used in conjunction with other "traditional" treatments. So it is not and either/or deal.

I felt so bad and my rheumy at the time had me in a wait and see mode that I felt I needed to try something just for my physical and mental well being. Once I started my treatment program I felt much better mentally knowing I was doing something. If I had not improved with the AP I would definitely have been in the market to escalate my treatment program or change it all together. In my case fortunately so far things seem to have worked out. This is a tough disease and we need to me mobile in our thinking I feel, we just need to be proactive. Be our own best advocate.

Good luck with whatever treatment you chose but do try to lessen your stress level and find something that will address the progression of your SD.

[terri9967]

Thanks Jeff.

I will download the info. Do you know if I will need to stop my other meds like my cellcept or medrol when starting AP?

[jeffn]

Terri - I don't know but let me PM someone and see what they think. In the end it will be up to the docs but let me see what I can find out. Also in regard to the heat and ice for me one or the other or a combination of both did not work - like your situation. As I have noted before when my SD was cranking nothing helped relieve the pain unfortunately. Later when things evened out some of that stuff did help.

[Cubby]

Terri, Do what jeff says. The AP is Minocin or Minocyclene, 100 mg 2 x a day.

I think Steve is taking cellcept with the AP. Is that true Steve?

[terri9967]

Unable to see my specialist till next week. She is at a medical convention somewhere. As you notice its 4am and woke with same pain in right hand again but now also in left!!!! I am not a happy camper right now. I do have to admit the pain is not as severe as it was the first time and I do have a little bit more range of motion. But boy if I miss a pain pill it gets really bad again.

If its Rheumatoid or SD would the pain and lack of motion come and go?

I am going to see my pcp on Wed. He is my only hope to try AP!!! I have seen him for 19 years now and he knows me better then I know myself. He told me last visit when I seen him for pain management that at this point anything that I find I want to try he is for the most part willing to give it a go, other then taking me out back and shooting me. I always joke with him that they treat a injured horse better then humans sometimes. He knows I am not a Hypochondriac and that I hate taking meds, so he doesnt worry that I would bring him treatments just to get meds.

I know I pushed myself to much yesterday. My middle daughter is in process of starting college and we were running from one college to another yesterday to find which college she will be able to afford for registered nursing. Alot of walking campuses and climbing way to many stairs. Came home at 530, fixed dinner and was in bed at 7. We atleast have the grandbabies baptism done and out of the way and we postponed Lauras grad party till the 24th istead of last friday. We are doing a luau style party so lots of food to be made. Anyone have suggestion on cheap luau food that serves alot of people?? lol

Thanks for all the help and support and please keep me in your prayers that I can atleast give AP a try and that it stops atleast some of this!!

Hugssss
Terri

[klw1960]

Terri, It sounds as though the pain is a symptom of the polymyositis. I have had several "roommates" when doing IVIG with polymyositis and it sounds like their symptoms. IVIG is FDA approved for poly. Check into it if possible

[jeffn]

Terri - Would the pain and lack of motion come and go? Good question. Thinking back the progressing lack of range of motion was pretty steady. Becoming less and less able to make a fist and the pain was always bad but some days worse than others. My hand and wrist pain would wake me up at night most nights and some days my range of motion was more effected than others. I tried wrist splints but sometimes they seemed to work and other times not. At this point in my journey I had not been DXd so I really did not know what was happening. I had never experienced any of these symptoms before so after being DXd with SD I wrote it all off as part and parcel of SD. Whatever you want to call it - it hurts!

[terri9967]

Well I am wondering if AP will work reguardless if its SD or polymyositis. What is your knowledge Jeff on what AP works for?

[jeffn]

Terri - A rose by any other name right. Thats what I was trying to get at a little in my previous post. I wrote it all off to the SD perhaps it is other conditions. No docs told me any different but I never really checked into it futher. Bottom line the mino IN MY CASE has helped everything except for my Raynauds, well my feet are better but my hands still seize up in the cold and damp. I still need a good night s sleep (no 4AM for me) but I don't sleep 16 to 18 hours a day anymore. Legs are still not flexible as before SD but much better. I have not had a recurrence of the watermelon stomach and reflux is very rare now so I would say that my stomach has healed up also. I have a post in the AP section that explains where I was and where I am pretty well I think, check that out if you have not already.

I checked my "sources" and there are folks around that have taken mino and cellcept at the same time usually the cellcept for lung involvement. Can't seem to find anyone on the other drug you mentioned. If you search over on RBF the cellcept and mino should come up.