Palindromic Rheumatism

[Jack631]

I was diagnosed this past year with PR. I have had a couple of painful bouts in my right shoulder, and my hips. I’ve gone to the specialist twice so far. The first was the blood test and the second time he gave me prednisone 2.5 mg if it gets bad. (I haven’t taken any yet). My GP told me my blood test showed thyroid, sugar, cholesterol elevations. I’m not sure if it’s because of the PR. I started taking meds for my thyroid. Second test shows everything is coming down. I’ve also switched to vegan. I don’t know if this is helping but I feel much better. I go to my third Rheumatologist appt on May 3rd. Right now my muscles are feeling weak in my legs. Like I don’t have the strength to stand up. Kind of scary.

I’ve been walking a half mile twice a day. I thought I was getting stronger in my legs. I Istopped since this new symptom started. I’m hoping it’s temporary.

It is scary to not know what’s going on.

[Ribbon2079]

Hi Jack. I was just formerly diagnosed with RA. My doctor told me that my numbers are off the charts. I experience weakness in all parts of my body that are being affected with RA. I notice where I have the most pain, I have the most weakness. I am only on steroids, Advil and Tramadol for extreme times of pain right now but am moving toward general testing to see if I will be able to handle taking the medicine for RA. I have to use crutches more and more now. I am told once I start with the RA drugs, I probably won't need the crutches anymore. I am hearing you though. It is scary when this happens to you....but I am hearing it will get better once you are on the drugs for RA which I assume is similar or the same to PR. (?)

[Jack631 in reply to Ribbon2079]

Thank you for sharing.

Since Palindromic Rheumatism comes and goes the Dr hasn’t put me on any meds yet. I’m hoping for this inflammation to go into remission. I know it’s only hopeful thinking.

[helixhelix]

PR should get better, so hopefully will all be temporary. Your May appointment’s not far off, so should get a view from the rheumatologist as to whether the legs are connected, or something else. The problem is of course that if you stop walking your legs will get weaker, and once you get on that downward spiral it’s so hard to get back up again. So keep moving as much as you can.

[Jack631 in reply to helixhelix]

I don’t think I will ever give up walking (hopefully). I have a pool but it’s freezing right now. I’ve been looking for some kind of wet/dry suit to wear so at least I can swim.

[Ribbon2079 in reply to helixhelix]

Thanks Helixhellx as that was important for me to remember as well.

[MarshaM]

Jack631

I started out diagnosed with PR and then they sent for blood test the numbers were high for RA. I went vegan but pain and inflmation got worse. Since then I've gone Vegan raw and eliminated most processed oils, sugar and bread. Have not had any more PR attacks since the first 2 episodes. RA took over for 7 months when I could barely walk. Finally the RA meds kicked in and was able to function normally. In the last year I have reduced my meds intake and been eating raw vegan mostly as a low inflammatory diet. I think it has helped.

[Jack631 in reply to MarshaM]

Now the raw diet is interesting to me. I am going to look for a group near me so I’m not along. My other half eats only meat. So I need some friends to work with on this new endeavor.

[Lrcjvl]

I would ask for b12, vit d, ferritin/iron levels to be checked when you are at rheum. For those eating vegan b12 is especially important to follow. Inflammation can also cause fatigue.

[Jack631]

Hi Lrcjvl,

I am taking multi vitamins, B-12, D 3, and flax seeds for Omega. It seems like my Rheumatologist is waiting for the other shoe to drop. I’ll try and ask him more questions at my next appt in May.

I’ve been trying to write down different symptoms as they occur to share with the Dr.

Thank you for your reply.

[Ribbon2079 in reply to Jack631]

I have read leaky gut can have a connection to RA as well.

[vonniesims]

I was initially diagnosed with PR , getting pain in odd joints which moved around, never bilateral.

Had no teatment for it, just pain killers for years, the developed RA . The consultant I saw then told me that if it had been treated I may not have developed it, so ask when you go. Good luck !