https://www.carenity.co.uk/static/themes-v3/default/images/en/header/rheumatoid-arthritis.jpg

Patients Rheumatoid arthritis

10 answers

149 views

Topic of the discussion

Carenity Member
Posted on

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 - 9/3/18

Has anyone been diagnosed with palindromic RA?
1

Carenity Member • Community manager
Posted on

Hello,

Thank you for posting, I hope there are some other members who can share their experiences with you.

Has anyone been diagnosed with palindromic RA?
Carenity Member
Posted on

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 😔

Has anyone been diagnosed with palindromic RA?
Carenity Member • Community manager
Posted on

@Hidden username Hello sheps,

It would definitely be worth giving your GP a call so they can explain to you what it is.

Has anyone been diagnosed with palindromic RA?
Carenity Member
Posted on

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

Has anyone been diagnosed with palindromic RA?
1

Carenity Member
Posted on

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

Has anyone been diagnosed with palindromic RA?
1

Carenity Member
Posted on
Palendromic rheumatoid comes and goes, it is only supposed to last a few hours to a few days maximum and it causes no long term damage to your joints. If it lasts more than a few days then it's more likely you have RA.
Has anyone been diagnosed with palindromic RA?
Carenity Member • Community manager
Posted on

@Hidden username@Hidden username‍ Thank you both for sharing!

Has anyone been diagnosed with palindromic RA?
1

Carenity Member
Posted on

Thank you, I don’t understand why the many Drs and consultants didn’t know that. Have a great day. x

Has anyone been diagnosed with palindromic RA?
Carenity Member
Posted on

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