Discuss Palindromic Rheumatism

PODGE

Hello anyone out there with the above condition?

noddingtonpete

Hello @PODGE and welcome to the Community. We are a friendly and supportive group and I hope that will be your experience as well.

I understand that you want to connect with people to discuss Palindromic Rheumatism. I am sure that others will connect with you to share, but in the meantime you might be interested in the following from our website.

https://www.versusarthritis.org/about-arthritis/conditions/palindromic-rheumatism/#palindromic-rheumatism_zoe%E2%80%99s-story

Hope this helps and once again welcome and I am sure others will be in contact soon.

With very best wishes

Peter (moderator)

Ellen

Good Morning @PODGE welcome to the online Community.

I am presuming you or someone close to you has been diagnosed with Palindromic Rheumatism/Arthritis (PA).

Here are search results for threads about the condition:

https://community.versusarthritis.org/search?query=palindromic&scope=site&source=community

and just in case your diagnosis is recent here is some information:

https://www.versusarthritis.org/news/2021/september/all-about-palindromic-rheumatism/

I am sure you'll find the community really supportive. Now that you've introduced yourself you might like to take a look around the rest of the forum. After 'Say Hello' Living with Arthritis tends to be one of the most popular categories.

Best wishes

Ellen.

PODGE

Thanks to you both !

PODGE

Morning yes recently diagnosed started Hydroxychloroquine but not working well. Having steriods to help until hydrox gets into my system. I have been taking since February?

The pain is relentless some days and frustration not being able to do things is overwhelming.

So any help or tips please send !

I tried hydrotherapy as physiotherapy may be until 18 months to get. My hands/wrists and knees ballooned up ? May be coincidence or heat no one has answers again.

Thanks letting me off load frustrations hopefully someone out their had has same problems?..

Loggiemod

Hello @PODGE feel free to offload, that's one of the things this community is good for. It is a place where people can offload because all of use on here have been through something similar so know what it is like.

PODGE

Thanks going to try and have a plod around RSPB later weather permitted. May loosen me up and clear head fingers crossed xx Tea and biscuits for now

PODGE

Well managed plod with lots of rest breaks findings benches in parks to low now but will had to use them. Very achy stiff afterwards but rested and relaxed mentally retuned tho so a positive hurrah

Wenwoo

Hello Podge,

I was diagnosed in September after not been able to walk for almost a month, I get the swelling in my hands, neck, hips, knees, ankles it just migrates around by body. I was started on Methotrexate and Hydroxychloroquine they also gave me a depo-medrone injection until the oral meds kicked in. There’s very little information online as it’s classified as a rare disease, I do what I can when I can, I also found that exercise increased my flare ups. So glad you enjoyed your plod and as you say take things at your own pace.

PODGE

Morning

Yes plod was good fresh air and nature plus lots of benches to rest,funny find them to low and really have to push up to get off them lol.

Well I am going to hydrotherapy pool this afternoon. Went a few weeks ago with RA Group found heat overwhelming and did swell up but decided to give it a few more tries as apparently beneficial?.?

As flare ups come whenever they like I am trying different things. Mental health after being debilitated for months.

Hope you have a good day!

Wenwoo

Hello Podge,

I was diagnosed in September after not been able to walk for almost a month, I get the swelling in my hands, neck, hips, knees, ankles it just migrates around by body. I was started on Methotrexate and Hydroxychloroquine they also gave me a depo-medrone injection until the oral meds kicked in. There’s very little information online as it’s classified as a rare disease, I do what I can when I can, I also found that exercise increased my flare ups. So glad you enjoyed your plod and as you say take things at your own pace.

PODGE

Morning

I managed 30 minutes in hydrotherapy yesterday. Felt great at time and just after but then up all night in pain may have unconsciously over done it !

I gave up and got out of bed see what today brings :))

Thought I had sent message yesterday brain out of gear with meds lol

Hope you have good day.