Welcome Carol (Wattsnex) !!!

I copied this post from Wattnsnex (Carol) from another string so everyone can say hello!! Carol . . . I hope you'll tell us more about yourself!! Welcome to the forum! Wattsnex said... My hands, fingers and wrists joint hurt and are stiff to open and close almost constantly, it happens bilaterally ie both sides at the same time. I find it hard to hold a pen, toothbrush, type etc. There is no strength in the muscles when picking up items either, I drop things alot. I use otc anti inflamatory, Advil....sometimes it works good and sometimes I get little or no relief. Then there are days when the pain is almost completely gone and that I can't believe they throb and ache so bad at other times. I attribute it to inflammation. I am on Plaquenil and Cellcept as well. I cannot tolerate prednisone . Carol /quote]

Welcome to the forum Wattsnex. My husband from N.J, Hamilton township, we live in P.A now. I'm sorry you went through all that I hope they can get you on the right track with your meds.I know what those clots feel like I had it on my lungs that was very painfull, I'm just glad I was in the hospital when it happen. If you have qustion or even want to talk this is the place to be. Wish you well. Debbie

Wattsnex said... MJLD, Sorry to hear you are having so much pain, I think I know what you are going through. I too have high anticoagulant antibodies and am on Coumadin for the rest of my life. It is scary the first time (and hopefully the last) you go through the pulmonary embolism. I had one, it will be 2 years this August. Thought I was having a heart attack. I smoked most of my adult life but quit 7 years ago, thank goodness, so I could only think the worst when all this pain and shortness of breath presented itself rather suddenly. The embolism developed into pleurisy, I had an amniocentesis. Then a few months afterwards I had a TIA and that is when I took the Coumadin Therapy very seriously. I have a very good vascular surgeon who pulled me out 2 x's in the last year. I had a stent put in the subclavian artery and had a bypass to the arterial blood supply to the intestine which the time before the surgery I had lost 52#'s and had constant diarhea for 5 months straight, I came close to losing the intestines. Went to 4 Gastro. Drs and not one diagnosed the problem, but the v. surgeon did a doppler and knew right away what was happening. He is doing a Renal Doppler on me at the end of the month. Please keep us informed of your progress. I also have Diabetes which further more adds to the complications. My best wishes for the success of your new book "The Beauty of Pain"; I am looking forward to reading it. God Bless Carol (from NJ) Wattsnex Carol . . . I copied this from the other topic . . . WOW you've had a rough time. As I was telling Judy, you might want to check out Ginny's new topic on Post Traumatic Stress. Some of our members have been through so much. So. . . . your another late blooming Lupan !! Ha haaaaa . . . I don't have clear-cut Lupus . . . (UCTD and possible Chron's), but just started getting treatment in my late 40's. I'm 55 now. I hope you receive a lot of support on this forum. Its been a God-send for me. Blessings!

Hi Carol,

 

Another welcome coming your way!  I think that because your disease process came on so suddenly it would be so understandable that you're very scared and completely shocked.  We can all understand and relate to those feelings you're having.  This is a terrible disease to have and the added support network is definitely needed.  We're always here for you if you need to vent, cry, ask questions, etc.  I hope your day is a good one today.

 

Ginny

Hey Carol, Are you off of prednisone? How long? Did that help you wean from the insulin? or are you still on the same amount? I ask because of a s-i-l who has brittle diabetes from liver disease and the steroids needed to maintain her liver. Just wondering if this improves when you go off the pred. The plaquenil takes about 6 months to fully build in your system. Because it is such a gradual improvement, some don't notice the benefit until it is stopped for some reason. There are previous messages from members who stopped it and found out it really had been helping. I hope you get some relief soon. I don't know much about Cellcept . . . but I hope it really helps. You might start a new topic using a title that would attract those who use Cellcept. Like . . . "Cellcept Questions" Glad you found us! Blessings!

Carol . . . your welcome!! SO sorry the pred affected you so adversely. It is such a good weapon when we need instant results. I hope the CellCept will do well for you! Blessings!

Lynnwood,

Thank you for the reply. I had no idea that CellCept was used for cognitive issues. I believe the purpose I was Rx'd Cellcept was for an immunosuppresant. My dosage was first 1000 then 2000 now. If you don't mind my asking how long did you take it for and why did you go off the CellCept? Did it help for joint/muscle pains?


Carol

Thank you Lynnwood for sharing that information with me.

Carol