This site has been great for learning about PMR, and I want to thank all contributors for their time and efforts to share their experiences and wisdom.
I just turned 62 on the 1st of July. Last year at this time I was swimming in the Atlantic Ocean at Southampton, happily body surfing the waves. This year, I can't walk across the sand to perch on my chair.
Last fall on Holloween, I noticed some soreness in my left bicep. I didn't think anything of it. A day or so before, I helped my husband remove the window air conditioners for the season, and thought I merely strained it. Spent the next weekend raking leaves from our yard, and had a little more soreness in the left and new soreness in the right biceps. Again, thought nothing of it. Yard work is hard, and muscle soreness is normal, especially when you're at it in cool October weather. I've had experience with tendonitis before, and really was not concerned when the soreness progressed over the next few days. Taking buses and subways to work often means standing and "straphanging", so I thought what was happening was that I was just wrenching my arms as I hung on, making things worse.
When I woke up the morning after Election Day (gob-smacked by the results), my biceps were burning. After checking my heart rate and convinced I was not having a heart attack, I took a shower, applied Aspercreme (my new body lotion now) took ibuprofen, and took off for work. Doing anything else was not an option as I was heading a major year-end project. Got some relief using alternating hot and cold gel packs, Aspercreme, ibuprofen and a few hot toddies here and there in the evening.
It was 3 weeks later when I started having trouble walking. My legs felt like jelly, and my thighs were getting sore. My hands hurt and were swollen, and I could not make a fist. It hurt to write. It was then I understood that something was really wrong, because tendonitis doesn't migrate. My regular doctor was on vacation until after the New Year, so I went to an Urgent Care center sponsored by my insurer.
A nurse practitioner listened to my syptoms, prescribed 10mg of pred, and scheduled me for an appointment the following week with an attending physician.
I got some relief from the pred within hours. But within a couple of days, though my legs were better, I was having trouble raising my arms. By the time I saw the doctor, I could only raise my elbows to the height of my shoulders unless I was in a hot shower, when I could force my arms to extend over my head. Still couldn't make a fist.
I have to say I feel very lucky that the attending physician that day really knew her stuff, beause she referred me to a rheumy immediately trelling me I had some form of arthritis, and upped the pred to 15 mg. She order a full slate of blood tests and xrays so I would be armed with some information for the rheumy. She called to say all was OK (sugar, cholesterol, D etal.) except for very high inflammation markers and and indication of RF factor, possibly indiciating some form of arthiritis.
I couldn't get a rheumy appointment until the third week in January. In the interim, everything got worse. The burning pain in my arms flew into my hands, and the weakness in my thighs returned and then turned to real pain. It got to the point where I could not sit up to get out of bed. But work I must, so I devised a method of hooking my foot under a dresser drawer to leverege myself up. (I had to remember to leave the drawer open the night before or I'd have to wake my husband to do it for me.) I got to work every day, though I started going in later so I could get a seat on the bus. I was also having trouble with my hands swelling, with the spaces between the joints of my fingers so swollen I couldn't close my hands.
The rheumy diagnosed PMR immediately and upped the pred dose to 20mg split morning and evening, along with Vit D gelcaps and Calcium/D3. I told him I was taking 400mg of ibuprofen every 4-5 hours, and he said I could continue as long as I took all of my meds with food and plenty of water. He wrote orders for new blood tests to be taken a week before my next appointment scheduled for mid-March.
I was feeling great within a week. Almost normal. The weakness had gone, and all that was left was some residual soreness in my bicpes. Annoying but not awful. My hands were less swollen, with some pain in the heels and along the pinky sides, but I was still having trouble making fists because the spaces between the joints of my fingers were still swollen.
The mid-March appointment never happened. A major snow storm kept him on Long Island, a long commute from his practice. He called to say the inflammation markers were down, and ordered another prescription to continue at 20mg. Next available appointment - mid-April. He ordered another set of blood tests and xrays for the next appointment.
By that time my hands were closing (though still couldn't make a fist), I could climb and descend stairs normally again, and even treated him to a little soft shoe dance as a demonstration of recovery.
At that appointment, I was feeling even better. Still a little residual soreness in my biceps, but only noticable when I moved in certain ways. Fingers still swollen. He said that though my xrays were clear of any indication of RA, he suspected LORA, and he wanted to introduce MTX. I said absolutely not. None of my joints were bothering me, or were swollen, or showed any sign of weakness or pain or infelxibility. We argued. I won. I did agree to start tapering the pred since I was getting the hampster cheeks and begining to get the buffalo hump along with pred belly. He told me to go down to 18.50 right away, then down to 15mg after 2 weeks. I did. Big mistake.
Within 2 weeks I had Achilles tendonitis in both legs, both ankles swollen above and below the joints, swelling in a ring below my knees, and the biceps pain back with a double vengence. I went back up to 20mg and stayed there until I saw him again in June.
By then I was again feeling better. I still had tendonitis in the Achilles and swelling above and below the ankles. Blood tests showed all was normal except inflammation makers, which were approaching normal. He said he wanted me to begin the same tapering again, and I said that was going to be too fast. He again wanted me to take MTX and again I refused. Then he offered lufonomide. I refused that, too. I told him that according to my reading and according to my body, I had none of the symptoms of RA, and I had no intention of taking those drugs unless and until he could prove that I had RA. I wasn't going to take that poison to treat a condition or disease I didn't have. He offered Plaqunil, saying it was the mildest of the pred-sparing drugs available, and was very well tolerated. I said write the script, and after I do some research, I'll decide. He said pred is dangerous. I said so is inflammation.
Research on Plaquenil told me that I should see my opthamologist before I started taking it. I've already had cataracts removed from both eyes several years ago, so I want to understand how this medication might effect that. That appointment is next week. I'm starting tapering today to alternate between 19.5 and 20 mg on split doses daily (10 in the am and 9.5 in the evening on new dose days). We'll see how that goes over the next couple of weeks. And we'll see what my opthamologist says about my eyes and Plaquenil. I also don't see how I'm going to manage the gastro-intestinal side effects with a 1.5 hour commute to work in each direction.
The Achilles tendonitis has abated, thank goodness. Still have swelliing in my fingers in the spaces between the joints, so still can't make a fist but my hands are stronger, pain-free and completely flexible. Some swelling above and below the ankles reduces with iced gel packs and returns to almost normal, though swelling comes at the end of the day. There's still some stiffness there, so beach walking is out for a while. I won;t be doing any ocean swimming till the water warms more. It's still under 70 degrees.
So that's my story so far. I hope it isn't too long. Please share your thoughts and your wisdom. I've always been "disgustingly healthy" as my GP describes it, so I'm a babe in the woods when it comes to dealing with these issues.
Wishing you all the best...sunny days and sweet dreams.
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Latest rheumy appointment
Pmr , Rs3pe
New PMR diagnosed today.
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