Has anyone been diagnosed with palindromic RA?

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Unregistered member

22/07/2018 at 23:53

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.

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JosephineO

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03/09/2018 at 15:12

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JosephineO

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Last activity on 15/07/2024 at 09:21

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989 comments posted | 39 in the Living with rheumatoid arthritis group

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Hello,

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

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Josephine, Community Manager

Has anyone been diagnosed with palindromic RA? https://www.carenity.co.uk/forum/other-discussions/living-with-rheumatoid-arthritis/has-anyone-been-diagnosed-with-palindromic-ra-2490 2018-09-03 15:12:38

Unregistered member

17/09/2018 at 14:29

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 😔

JosephineO

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17/09/2018 at 18:56

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JosephineO

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989 comments posted | 39 in the Living with rheumatoid arthritis group

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@Sheps76 Hello sheps,

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

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Josephine, Community Manager

Unregistered member

Edited on 15/10/2018 at 12:52

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

moosue

25/10/2018 at 15:51

moosue

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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

Twoelles

12/11/2018 at 13:00

Twoelles

Last activity on 08/02/2018 at 02:36

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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.

JosephineO

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12/11/2018 at 15:15

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JosephineO

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@moosue‍ @Twoelles‍ Thank you both for sharing!

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Josephine, Community Manager

moosue

13/11/2018 at 09:34

moosue

Last activity on 02/12/2023 at 11:58

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

moosue

06/12/2018 at 14:35

moosue

Last activity on 02/12/2023 at 11:58

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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

JosephineO

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06/12/2018 at 14:54

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JosephineO

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Last activity on 15/07/2024 at 09:21

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989 comments posted | 39 in the Living with rheumatoid arthritis group

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@moosue Hi moosue,

Here is a very useful link about the medication that could help answer some of your questions.

Hopefully there are some other members who have taken this and can share their personal experiences to you :)

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Josephine, Community Manager

Has anyone been diagnosed with palindromic RA?

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