New to vasculitis in 2016. Not my idea of an inner body experience.

[Newkidontheblock]

Vasculitis diagnosis 2016. have had sjogrens for 5 years. In November I started having pain in my hips, thighs and shoulders mild at first but by the third day I could not walk. My husband had to lift me off the couch. With much difficulty I got dressed and we went to the emergency room. After much testing and waiting they came up with poly myalgia rheumatica. My blood pressure was elevated and my pulse was hanging out at about 150. I had so much pain they gave me double the standard dose of tramadol. It had no affect. Then they gave me dilauded. That helped for a short time. They finally gave me 20mg of prednisone and that was the ticket. Inflammatory markers were off the charts. Went home. Continued the prednisone at 15 mg daily. Went from not being able to get off the couch to cleaning my house and shopping for eight hours. Rechecked blood work. Everything back to near normal. Lasted three weeks. All Symptoms returned. Back to the hospital. More blood work. All inflammatory markers taking elevators to top floor again. Some other tests were positive which were concerning Urinalysis came back with flags all over the place. So this is where I am in the grand scheme of things. I will update when the results of the second anca test come back. Ta ta for now 🙃

[piglette]

You sound like you could have PMR (polymyalgia rheumatica) from what you say with the magical result of pred and the non effect of Tramadol. What does sound wrong is trying to continue as you did before you got ill. PMR is very intolerant and you need to change your way of life to accommodate it. Rest is very important. If you overdo things it will flare up and come back and bite you. All the steroids do is reduce the inflammation which you need to keep under control to reduce the pain. They do not cure the PMR. The PMR is always putting up a fight to beat the steroids and when the PMR wins that is when your blood test inflammatory markers can rocket and you are stuck with a flare up.

[v4227]

So sad to read your post but don't feel that you are alone, getting a diagnosis was no easy, several 3 hour trips to the Mayo clinic, brain biopsy, kidney stones, irritating stents, angiograms, endless blood work and now diabetes. 6 months later finally a diagnoses of Central Nervous System Vasculitis, not good but now we know how to treat it and what to watch for.

Your symptoms sound a lot like my daughters but she had muscle loss and her CPK rate was 2000, blood pressure was high, was admitted to hospital where she had a brain bleed, stroke, thunderclap headache the only thing that even touched the pain was the dilauded and a high dose of steroids. She was told it was likely poly myalgia. She was in ICU for 2 weeks. She and I both have RA and this is what they believe brought this condition on. She is off the pain meds and has reduced the prednisone, 2 months of therapy and now she is doing great no symptoms at all. She has to remain aware of any symptoms of stroke and continue the prednisone along with Methotrexate and pray everything stays in remission.

Please keep us updated and maybe we can help each other learn more about this condition.

Good luck to you.

Victoria