Having RA and palindromic rheumatism at the same time

Kass

Hi,

I was diagnosed with RA 2.5 years ago and I've been on a few different DMARDs since. Last summer I developed sudden flare ups that would migrate from one area to another causing inflammation, stiffness, pain and often severe reduction of movement. The flare ups would last a few days and then disappear - just to appear somewhere else. Fatigue would also be my loyal companion. I was really confused and frightened at first as my RA symptoms had never been that severe but soon realised I'm dealing with something additional here. The doctor confirmed my suspicions, so I now have also migrating (palindromic) rheumatism on top of RA. For reference I'm 46 and active and I have a young child so not being able to do normal things I'm used to doing has been a really bitter pill to swallow and I'm still adjusting.
I'm waiting to have new biologic medication as the hydroxychloroquine I was on last, stopped working for me. Meanwhile I was put on Prednisolone to control symptoms which I have had several issues with as well. I have been waiting for 12 weeks for the new meds so pretty frustrated by now but I'm hopeful there's light at the end of the tunnel. I won't go into why the wait has been so long, to put it short it's system/service failure and probably some bad luck on my side.

Just wondering if there is anyone else here with the same combo of conditions as I've never met anyone who would have both. What are your experiences? Thanks for reading.

PJoanne

Hello @Kass

Welcome to the forum, it's lovely to have you here with us.

Here is some info from the VA website about palindromic rheumatism:

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

https://www.versusarthritis.org/about-arthritis/conditions/palindromic-rheumatism/

I'm sure that there will be some answers from the community for this thread soon.😀

Best Joanne

Ari

Hello @Kass don't worry and yeah your hope is what matters even now I am crying who would marry me and will i able to be enough women to the family i get to marry if I married..so the point is having family is so good and comforting

Don't let your hopes go see your baby smile it works wonders on you

I had that in start of my journey like I don't the name when in ra start..the pain it passed from one hand to another for me . previously I had in right then it passed to left hand but now only puffiness is there & all is good now no pain..one food that helped me most is HORSEGRAM DHAL ask your doctor about it ...it done wonder on pain part I don't have pain anymore..it worked wonder indeed

as I am from India so it suited me as it's one of the normal kitchen dhal..but outside india people might not heard of it so ask your doctor and eat

@ari_yora is my insta page i started and planning to post all my tips and comfort I found by following my food and tips so dont hesitate feel free to reach me

I am half your age just 24 I started this journey at 20 so yeah meeting lot of issues which i shouldn't meet still we can crack stay calm and with lots of hope.i am working staying away from home so yeah it includes quiet a tasks for me aswell!

where not easy for us the easy task is uneasy task so the uneasy task is mountain still we holding it..we can do all good like all people stay positive💪🏻❣️🫶🏻✨

WE CAN WE CAN OKAY.LOTS OF LOVE FROM THE PERSON WHO GONE THROUGH PAIN of RA!

TiredWarrior

Hi @Kass

For me it was the other way around

I was first diagnosed with Palindromic rheumatism and then later with seropositive Rheumatoid Arthritis.
I don’t mind the flitting pain as much as I know it will flit to another joint in a few days but fatigue is really difficult to deal with especially trying to pace yourself when having fun 😂.
I have had the conditions for 22years and I still can’t get it right.

I’m on Rituximab and Methotrexate and low dose daily prednisolone. Had to take ill health retirement last year as wasn’t able to work long hours anymore due to fatigue.

I have been a wheelchair user for past 4 years but finally Rituximab seems to be working so I do hydrotherapy every week to build muscle mass and stamina back again.

I hope the biologics are effective for you. Best wishes

Naomi33

Morning @Kass you are not alone 😘

I was diagnosed with Pallindromic RA about two years ago then last year diagnosed with Osteoarthritis so adjusting to new life style was hard and still is as everyday is different.

I have been on Hydroxychloroquine and steroid injections as and when flare ups occur. I was also put on MTX but side effects out weighed results so now awaiting Adalimumbab injections🤞🤞

I try and keep active but can be very limited but attend local walking (talking) group and did what I can when I can. Also art group which again is hit and miss but mixing with like minded people helps as it can be very lonely and frustrating.

Best wishes @Naomi33

Naomi33

FlowerLady

hi all…. I’ve been diagnosed with Seropostive Palindromic migratory RA since I was 36 I was told I could end up in a wheelchair, I’m now 59 almost… I was led to believe this was one illness but after reading here I’m I right in believing the palindromic migratory is separate from RA? I’m on Methotrexate & self inject with Tocilizumab…. I was also told it had a time scale of 36 to 60 this particular strain… so after 60 you can’t get it but obviously if yr got it it’s for life…. It’s so bizarre how you can have excruciating pain for as little as 10 minutes in one joint or muscle only for it to jump to another joint or ligament also mine mirror effect from one side to the other…. The pain & fatigue is exhausting…

Poppyjane

Hi @FlowerLady welcome to the online community

Thank you for your posts in response to other members, it is great when a new member starts off with support for others.

Living for a number of years with a chronic condition is exhausting especially when the pain is so migratory. I expect you have tried lots of different ways of coping with your pain and exhaustion and you will find among the comments here loads of tips for dealing with it too. Sharing our hobbies and skills is a great source of inspiration to others and helps relieve some of the feelings of isolation that we all experience from time to time. Alongside that we are all being encouraged to keep as mobile and flexible as possible so I am attaching a link to the stretching videos which I hope you find helpful.

https://www.versusarthritis.org/news/2021/october/new-stretching-videos-to-help-keep-moving-and-manage-your-arthritis/

It is great to meet you and we hope to hear from you again soon.

Take care

Poppyjane