@seniormed

Your story has some parallels to my story. I was diagnosed at the age of 32 with reactive arthritis (ReA) which is in the same family as psoriatic arthritis (PsA). You and I would probably have much to talk about.

My "inflammatory arthritis story" is separate from my "PMR story" but the two stories intertwine. I never had any difficulty being diagnosed although my longstanding diagnosis of ReA probably delayed my PMR diagnosis for a few months.

In addition to ReA and PMR there was "premature osteoarthritis" but that was attributed to sports injuries in high school. I was told a knee replacement was needed when I was 25 years old except I had to wait until I was 65 to do a knee replacements.

There was a short delay to being diagnosed with ReA arthritis while a surreal sequence of events unfolded. The events began with an enteric infection following a trip to the Romanian orphanages in the early 1990s. The conditions in those orphanages were deplorable. I came home with nausea, vomiting and diarrhea. My enteric infection resolved quickly so I didn't see a doctor until the impossible to explain back pain began. It was very strange back pain. In my opinon, there was no rational reason for that kind of back pain.

I sought medical treatment for back pain that was excruciating at night but minimal during the day. The medical advice I received was "get a new mattress" and take ibuprofen. The ibuprofen caused GI problems and out of control diarrhea so I got sick again.

One thing led to another until I showed up in the emergency room severely dehydrated and nearly dead if you ask me. I was thinking I had a stroke because, following a prolonged retching spell, one eye was "fixed and dilated." My dilated right eye was reacting normally to retching. It was my left eye that wasn't dilated that was abnormal. The pupil in my left eye was "stuck" and wouldn't dilate.

Fortunately it was my left eye which precipitated a quick diagnosis of reactive arthritis. I had an aggressive form of uveitis which is associated with reactive arthritis. If I didn't have uveitis, I probably would never have been diagnosed. An ophthalmologist gave me a bunch of "little white pills" but he didn't tell me what the pills were. My ophthalmologist only said the pills would help the inflammation inside my eye.

When an internal medicine doctor diagnosed ReA he asked me if a group of medical students could examine me. I had small lesions on my feet, in my mouth and on my privates. The internal medicine doctor wanted the medical students to see all the lesions because they were symptoms of ReA along with uveitis and unexplained back pain.

My treatment for reactive arthritis was sulfasalazine. I had a follow-up visit a week later and announced that I was "cured" because the back pain "went away." My doctor was happy but said sulfasalazine wouldn't have worked that quickly. He was unaware of the little white pills (prednisone) given to me by the ophthalmologist.

Reactive arthritis flares have a way of recurring so the back pain didn't go away and neither did uveitis. Recurring flares of uveitis happened regularly for the next 20 years. The back pain was a problem as well but, all the pain went away when my opthalmologist treated every flare of uveitis with high doses of prednisone. I didn't think I needed any medical doctors.

I was "doing well" because prednisone made everything tolerable ... even trigeminal neuralgia. Mercifully, a neurosurgeon eventually did surgery to finally stop the pain from trigeminal neuralgia from happening.

I always had leftover prednisone to take when I needed it because of the massive amounts of prednisone that my ophthalmologist prescribed for uveitis. I listed my ophthalmologist as my primary care doctor.

After 20 years at the age of 52, I was referred to a rheumatologist because of rapid onset severe shoulder pain while pain and stiffness spread all over my body. I could hardly move and I didn't have any prednisone to take. I thought not having any prednisone to take was the problem!

My PMR diagnosis is another long story. I just want you to know that having PMR, ReA or PsA, uveitis, along with "other things" including osteoarthritis are all possible and can coexist in one person. I would have preferred one diagnosis that explained everything though.

After all the prednisone side effects (too many to mention) are added into the mix with everything else it all leads to a "complicated medical history." Side effects from a long list of additional medications to treat prednisone side effects also contributed more problems and made my entire medical history more complex.

I am doing well currently ... my rheumatologist started me on Actemra about 4 years ago. I got off prednisone after 12 years of PMR treatment.

I still need prednisone occasionally for uveitis flares but I only take a high dose of prednisone intermittently for a month or two for uveitis. I can taper off quickly because my adrenal function is no longer suppressed by long term prednisone.

The only thing currently pending is surgery for severe spinal stenosis caused by "osteoarthritis." I'm convinced the cause of arthritis , whether it be "wear and tear" osteoarthritis or chronic inflammatory arthritis, is hard to distinguish as we get older.

The nice thing is, I don't need anything for pain even though my primary care doctor says Actemra isn't a pain medication. She asks if I'm sure I don't need something else. I have stopped nearly all my other medications that were primarily used to treat prednisone side effects.

By the way, Humira didn't seem to work for me as well as Actemra did.