I've been diagnosed with SERONEGATIVE RA. Anyone else out there have this? The treatment is the same as it is for Seropositive RA. I'm on prednisone right now and as we are expecting storms tonight, my joints hurt even though I'm on this steroid. (Probably weather related) I've got 2 more weeks of prednisone to go before they put me on whatever jives with my URSO and won't hurt my liver further.
I'm bummed out. Another progressive AI disease. Will immune suppressing drugs invite even more AI's to join the party already camping out in my body?
So, there it is. I know I'm not alone. PBC and RA. Many of you already posted encouraging notes to me. Thanks so much!
I was so happy when that pic (above) was taken this past weekend at an assembly in K.C. The prednisone was working GREAT and I felt like my old self. (Not so right now)
I have lots of questions and I don't see my Rheumatologist again until May 12th. It could be worse I know. I just usually give myself some feel sorry for myself time. Then I will wrap my head around this diagnosis too and get busy fighting it best I can.
Stella
PBC dx 10/10/16
SERONEGATIVE RA dx 4/19/17
Written by
Ktltel
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Thanks but I'm fat! Need to get this weight off my joints. I'm working on it. And if you saw me this minute you'd change your mind. My husband took that Sunday. We had a nice weekend.
Sorry to read of your diagnosis. You have such a positive attitude I am sure you will fight this new diagnosis with the same bravery and tenacity as you have towards PBC. I wish you all the very best you are a beautiful lady inside and out.
Stupid autoimmune diseases!!!! Come on researchers, come on labs, break the dark spell for us! There must be some silly simple clue to it all, despite all those super-complicated symptoms and variations and combinations and blah blah... I really believe that one day they'll just slap their foreheads and say 'damn it, it was THIS little thing all the time, and we've looked at it and looked and never really seen it for what it was!' Yay.. 😕 Soon I hope! In the meantime though...what can one do? You have amazing attitude Stella, allowing a "feel sorry for yourself time" and then pushing it aside and facing the demon - it's so hard to do, but necessary. I hope you'll overcome the pain somehow, on the photo you are shining, such a beautiful portrait! You must get that smile back again! ❤️
I'm trying. Woke up with anxiety today. But, the prednisone is still helping. So, I'm gonna try to let this soak in and like Marysla says on here, just keep moving.
Wow, you have been through it. I worry that the immune suppression drugs enable "other" auto immune diseases to come forward and take hold of us. Do you think that's so?
What RA drugs do you take? I'm thinking they are gonna put me on Plaquenil because of my PBC. It's supposed to be a little better on the liver. I think.
Thank you. I'll keep you posted what they put me on.
I have a friend who years ago started out with fibromyalgia, they put her on immune suppressant drug, I don't remember which one. A year later she had RA too. Then they changed her meds to stronger Immune suppressant drugs and it wasn't long that she got lupus in addition to her RA and Fibro.
It just scares me. We must take these drugs to slow down one disease but in doing so, we have lowered our immunity to other invading AI's.
Thank you. I'm better today. It's sinking in. It helps that I'm "almost" pain free (Prednisone). My right knee won't give up causing me grief. But I can handle that. Don't see the doctor until May 12th. Like I've said, I'm worried about side effects of these RA meds. But, lots of people are on them. My blood work for my PBC came back good. Only Alk-phos up (141). Just hate to take anything to ruin my good liver numbers.
Oh well. How are you feeling?
Don't have hair envy. My hair is falling out. Guess it an AI thing. Maybe even URSO thing. I'm 57. I shouldn't have my hair this long. Honestly I have just too busy and lazy to drive the hour away to town and get a couple of inches cut off! It's far too much work for me to keep up too. Drying, straightening (I have wavy hair), then heat rolling it before brushing is out!! I'm tired just thinking about it.
Thanks for your kind words. Let me know how you are doing too.
Hi kittel I don't think immunosuppressants work like that. You are more prone to more AI things once you've got one. It's a sod but taking the Medes doesn't cause it. But reason I wanted to send a reply - my late mum had Sero neg RA. She had other conditions too, ulcerative colitis being the worst. The RA affected her hands and wrists and she had knee replacements. But after a while it kind of burned out and the hand pain went. She had deafness too, no idea if it was the RA or just AI generally. Her death was due to non-AI problems. Her sister is deaf too, as am I. I have AI things but different from my mum. AIH/AMA neg PBC overlap being the one that brings me here. Take care.
I don't know anything about how this all works. I appreciate any and all feedback on how immunosuppressant drugs work.
When you said that your mom's hands "went", do you mean they got super bad and were useless or that the RA stopped affecting her hands and they got better? That would sure be interesting to know.
Are you currently on immunosuppressant drugs yourself? How do you feel on them and have you acquired any new AI's since you've been on them?
Hello again. Yes, mum's hands improved. Trying to recall dates and things. Probably in her 40s when the RA flared. She had UC in her late 30s. She was on sulphasalizine for that, and it's used for RA too.I think her RA in hands settled after about 5 or 6 years. Early 50s she developed Parkinson's and that was the biggest problem for the rest of her time. With the RA she was able to work full time as an infant teacher. It wasn't easy but she was very determined!
As for me, I am on mycophenolate mofetil. It's my 3rd immunosuppressant as the first two made me very ill. I had one of the very rare effects from it and had to stop very quickly. MMF suits me well. I have had a couple of infections on it but it's okay otherwise. I was on prednisone for not too long. A year max, then I had the immunosuppressants. Been on them 3 years. Plan seems to be to stay on them as my condition has a high risk of relapse, it seems. Other AI conditions include asthma and all year hay fever symptoms (perennial rhinitis), very troublesome dry eyes. lots of joint pain, under active thyroid. Fatigue is a problem, and brain fog. I am on an antidepressant long term too - it's been a problem most of my adulthood, on and off.
No, I've never heard of anything PBC related around here in Kansas as far as seminars etc.
I'm one of Jehovah's Witnesses and we had an assembly in KC last weekend. It was encouraging for me and my husband. Plus, the prednisone kept me pretty close to pain free, a little stiffness and pain from sitting for a few hours but tolerable.
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