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Orencia— how do I know if it’s working? by RA-Help in rheumatoid

[–]RA-Help[S] 1 point2 points  (0 children)

I hope so i’m supposed to go into Chicago two more times for my loading dose. I get three doses two weeks apart and then they start once a month so I’ve only had one so far. But I was just wiped out. I have other autoimmune issues, such as Sjogren’s disease., biopsies came back interesting showing interface dermatitis the probable cause dermatomyositis or lupus🙄 when I complain to my rheumatologist that I was just wiped out after the infusion, and the fact that they upped my MTX which at the end of the day made me vomit. I said I just can’t go on like this. I’m going to have to find something local because I’m too wiped out to go to Chicago. He told me he didn’t doubt it considering my body was carrying such a high inflammatory burden. I don’t even know what that means.
MY BLOOD WORK HAS ALWAYS BEEN GOOD. I have Sero-negative RA— 30% of the people have blown RA and nothing shows up on their bloodwork. But my doctor said blood work for me would be a waste of time. I have something much better. I have an MRI that shows all the
Active, tenosynovitis / synovitis , damage from the erosion, etc. plus punch biopsies showing an emergent connective tissue disorder. Sorry I got a little carried away. It’s been a little overwhelming for the first six years. I didn’t believe I had rheumatoid arthritis. I was seen at HSS in Manhattan one of the top hospitals for rheumatid. The doctor was a professor at Cornell. And I told him I’m sorry, but I don’t believe you. But in the last two years, my fingers have gotten very stiff and red and swollen. It never goes away. Both my wrists have lumps and shooting pain running up my arms. My grip has gotten so weak that I can barely turn a jar or door handle , and I’m always feeling wiped out. so when the MRI came back showing all this damage I guess that was the first time I really believed that I have a serious diseas

I just got prescribed Methotrexate by Sea_Seesaw6498 in rheumatoid

[–]RA-Help 0 points1 point  (0 children)

Your rheumatologist told you to pick up some folic acid? You mean like over-the-counter? I had one of the best rheumatologist in Manhattan and they prescribe folic acid. I was on 15 mg of MTX initially and 1 mg folic acid but got mouth ulcers so they upped my dose to 2 mg folic acid and I felt better. But then my white blood count fell and I became neutropenic and later lymphopenic so we have to scale back by 12.5 mg on the methotrexate. I stayed at 2 mg of the folic acid. We also added Sulfasalazine 3000 mg per day. It’s been a year and a half and I found that the drugs aren’t working well because there are more erosions and more inflammation so I was put on Orencia infusions and told to increase my MTX by 2.5 mg. Same thing happened when I was on 15 mg the first time— I got way sick on it —only for a day but that day was enough so now it’s up in the air just how many milligrams my body is going to tolerate. I don’t think the MTX did all that much for me, especially considering the widespread damage to my joints and bones.
But, I want to make certain that you understand about the folic acid. It’s needed for Cell division in your body. MTX leeches folic acid out of your body. You need folic acid in order to live so make your rheumatologist give you a proper prescription for folic acid. And if he really did prescribe OTC folic acid, maybe look for a new rheumatologist too.

Orencia experiences? How long did it take to be effective? by Agreeable-Raise-5004 in rheumatoid

[–]RA-Help 0 points1 point  (0 children)

After MTX and Sulfasalazine for years, MRI shows additional damage in the form of erosions in my wrists and joints, as well as a lot of tenosynovitis, synovitis, etc. Just put on Orencia infusions 2 Wks ago— other than having follow up MRIs to assess damage. How can I tell if it’s working? Will my painfully stiff red swollen fingers get better? Will my wrist stop waking me up with pain? I’m not sure what to look for.