Rheumatoid arthritis questions

Posted by ellenh @ellenh, Aug 31, 2018

I had a little stiffness in my fingers in the morning. Nothing else, no pain. My doctor took an ANA which was strongly positive and sent me to a rheumatologist who did an anti-CCP. It was over 200. From this she told me I had RA and put me on hydroxychloroquine which made me sick and I discontinued it. Just saw her again six months later, no symptoms. She repeated tests and anti-CCP was higher than before. She wants me to start sulfasalazine. My question is, has anyone been diagnosed with RA who has never been in an active stage, and how imperative is it that you take a DMARD? The meds make me far sicker than the disease so far. I understand why it is recommended - to keep the disease from progressing - but so far I have no signs of RA. Is that even possible??

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claudiag | @claudiag | May 5 12:30pm

I need some advice, but I don't know if this is the way to post it. But here goes. I have had RA for 57years. It started when i was 12. Recently, in the last 10years I have been doing fine. Just dealing with the residual joint damage from earlier. Currently, I am having a nasty flare in several joints. I am a former nurse and have a different kind of "white coat syndrome". I need clear responses from doctors and to not be treated like a novice. I have had poor luck with this recently and have doctor ive seen twice who gets annoyed when I request more in depth answers. She answers as if I'm a newbie. I have come close to telling her I have been dealing with this for longer than she's been alive. (fairly successfully recently). I have an appt tomorrow and dread starting a new med, but i think that might happen. My anxiety and my attitude might make me a difficult patient. I am very disappointed in this flair and need the dr's help but... Any thoughts, please

mcc | @mcc | Nov 19 8:11am

Has anyone tried peptides for rheumatoid arthritis and if so how were your results

Sue, Volunteer Mentor | @sueinmn | Nov 19 10:27am

In reply to @mcc "Has anyone tried peptides for rheumatoid arthritis and if so how were your results" + (show)

@mcc At this point, peptide therapy for RA is in very early stages. Here is a recent article from Science Direct:
https://www.sciencedirect.com/science/article/abs/pii/S0024320522009572
Most studies use injected or IV patient-specific peptides to boost the action of DMARD drugs like methotrexate or leflunomide.

Nothing I have read indicates it is effective, safe or wise to purchase injectable peptides on line for home treatment.

Have you talked to your rheumatologist about seeking a clinical stude of peptides to participate in?

mcc | @mcc | Nov 19 1:58pm

In reply to @sueinmn "@mcc At this point, peptide therapy for RA is in very early stages. Here is a..." + (show)

@sueinmn Thank you for your response. I was on methotrexate for 3 1/2 years but was having too many adverse side effects so my rheumatologist had me add hydroxychloroquine and taper off the methotrexate. It seemed to be working ok until I was completely off the methotrexate but now I’m having more intense flares with additional inflammation of the intestines causing colitis. Within this timeline my rheumatologist has since retired and I’m not able to get into the new one for a few months but I’ve been hearing a lot about BPC157 peptide showing great promise. As far as being safe, I never had any autoimmune issues until a week after my Covid vaccine and within two months of extreme pain, muscle wasting and fatigue I got to the point of not even being able to dress myself (up until that point I was in the gym daily and at 59 years old was able to do as much as men 15 years younger than me). My DR then referred me to a rheumatologist who then put me on high doses of prednisone and added the methotrexate with eventually tapering off the prednisone. Within this timeline I had monthly lab tests with many in the high red which are causing organ damage, bone density scans with a loss of 12% and a muscle mass loss in excess of 70%. All these drugs were FDA approved and considered safe but based on my own experience of going from a healthy 59 year old self employed working man to a 63 year old who had to sell off his business because of not being able to work, I must say I have zero faith in what the FDA says is good or bad for me so I’m willing to try anything at this point to try to get some actual relief including joining any studies on it or doing it on my own.. At this point pretty much all the studies have been one lab rats which have been very promising but it’s now very much known that athletes and celebrities are amongst the people already using these peptides which is why I was wondering if anyone on here has had any experience with them.