Patients Rheumatoid arthritis
Topic of the discussion
Posted on 7/22/18 11:53 PM
Because I have and it's so rare that I can find little on the internet so was wondering if anyone else has it and how you manage it and what knowledge and advice you have.
Beginning of the discussion - 9/3/18Has anyone been diagnosed with palindromic RA? https://www.carenity.co.uk/forum/rheumatoid-arthritis/living-with-rheumatoid-arthritis/has-anyone-been-diagnosed-with-palindromic-ra-2490
Posted on 9/3/18 3:12 PM
Thank you for posting, I hope there are some other members who can share their experiences with you.
Posted on 9/17/18 2:29 PM
I have it but received no info so in the same boat as you, I actually have no idea what it means and am feeling too unwell most days to even research it! not even sure if it's worth claiming PIP with this diagnosis so any more help would be appreciated 😔
Posted on 9/17/18 6:56 PM
@Hidden username Hello sheps,
It would definitely be worth giving your GP a call so they can explain to you what it is.
Posted on 10/15/18 12:49 PM
Thanks very much for the comments. Seems it's quite an enigma! At the moment I'm trying to manage it with diet (very limited or no wheat, gluten, red meat, diary, nightshades or alcohol and oily fish every day) and CBD oil while I wait for the meds to kick in. It's still there but I think it's not as bad as it was before I tried these things.
All the very best to those of you suffering and I hope you get improvements very soon. Xx
Posted on 10/25/18 3:51 PM
Hello there, I was diagnosed 10 years ago with palindromic RA , I was told the tests were Siro positive, what ever that means 🤔 On June 18th this year I was told by yet another of the endless consultants , The RA wasn’t palindromic and the Bio similar drug , I’d been very painfully injecting for nearly a year, in order to get off the steroids wasn’t having any effect against the steroids that I’d been put on short term and have been on for 10 years and they can’t get me off. Feeeew, sorry about that disgruntled outburst. 😘 I’d love to hear from anyone with a similar experience. xx
Posted on 11/12/18 1:00 PM
Posted on 11/13/18 9:34 AM
Thank you, I don’t understand why the many Drs and consultants didn’t know that. Have a great day. x
Posted on 12/6/18 2:35 PM
Hello, has anyone any experience of a drug called Olumiant (baricitinib) they want to put me on it for my RA. Apparently the main side effect is shingles. I`ve read the info they gave me and am not much wiser.i would very much appreciate any information from personal experience. Best wishes Sue