2nd opinion resulted in mctd

I received my 2nd diagnosis after previously been diagnosed in April 2019 wit pmr. My new diagnosis is a mixed connective tissue disease which is essentially a mix of several things. My symptoms and blood results point more to Sjögrens, lupus, and RA. I recently tapered quickly off prednisone. I continue to have high inflammation levels, but no pmr pain any longer. Mostly pain in bottom of feet now and some weird rashes. It sure felt like pmr initially and thought the dr was when immediate shoulder, hip, and hand pain was relieved. One thing that may be beneficial to people struggling with their diagnosis is that I could get off prednisone and pmr symptoms were gone however inflammation markers are still high. I will start taking DMARDS when I settle on which one. Anyway, I will start bothering the fine folks on the lupus site and let you guys have a break from me. This is such an informative site, I will continue to learn from you guys!

[Hidden]

Hi

I just happened to be awake & saw your post flash up; so you have a diagnosis & at least an opportunity to join another Group, you may well find someone you already know over there 😉

Please keep us in the loop re your progress & when you start your DMARD; l hope you settle on one quickly & make good progress.

Best Wishes & Good Luck 🍀

MrsN

[Hidden]

Hi, so glad you have a better idea of what going on in your body. With luck with effective treatment you will be feeling much better and may even get back to your usual activities. Like mrsN says.... pop back and let us know how you are going. It may help others who are struggling to get a diagnosed. All the best!🌻🤗

[PMRpro Ambassador]

We don't demand that people go just because they aren't "just" PMR - where the problems are similar we're happy to help.

And you don't escape me over on LupusUK - who are a lovely lot by the way - I haunt there too for the things I can help with.

[piglette]

Have they said what could be causing the high inflammation markers? Mine are consistently high and I am just told to increase my pred dose, but it really does not make any difference. I would love to know why they are so high.

[Hidden in reply to piglette]

Well in my case, the doctor used the high inflammation without pmr pain any longer as a piece of the puzzle he put together. He also used lots of information from my 45 viles of blood taken. He seemed like a person that was literally trying to complete a puzzle.

High inflammation is from the autoimmune system attacking itself, I suppose. Like Aunt B and PMR mentioned, there is quite a bit of overlap. For me, Prednisone was the best medication while I was under flare up. And it was quite effective in lowering the pain in the hands, shoulders, and hips. However, the Dr. thinks DMARDs would be more beneficial for me at this point with most of my pain gone. For the long term, he thought it would be better at lowering inflammation and prevent another flare up by taking DMARDs. Keep in mind, everybody has its own puzzle and each is different.

However, like Aunt B mentioned, if another flare up occurs, Prednisone will be utilized.

[PMRpro Ambassador in reply to Hidden]

You mean you have a True Detective on your case! Lucky you!

[Blearyeyed]

You are really lucky that you got this diagnosis so quickly , many people struggle to get this sort of Doctor reaction and comprehensive tests so well done .

You will find that many of your symptoms overlap with PMR , and with the group of possibly connected syndromes you have some medications are the same , hence the positive reaction of your symptoms to Prednisone.

You may find that you will have short courses of Pred in the future for relapses in pain or inflammation.

You may be started on Azathioprine or Methotrexate as part of your treatment too.

Good luck with it , and when you know exactly which of the diseases you have in your

" mix" definitely get linked to those forums , they will be really helpful to you.

Drop back occasionally though and let us know how you are progressing , we will be thinking of you.

[bunnymom]

Wishing you well today 🌞

[Zanthy]

Hi cmarichard71 I am just dropping down to 3.5mg prednisone has taken me 3 years to get to this dose I started at 15mg. A few hicups on the way Got stuck at 6.5mg for some time . From now on I will be going very slowly as advised and hope everything goes well. have just had a heart attack so have to take everything a lot slower. Never sure which is causing the most trouble. Good luck hope all goes well Zanthy

[Hidden in reply to Zanthy]

Good luck to you zanthy! I could not imagine having a heart attack with pmr. Double dose of hell squared