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Just diagnosed with polymyalgia rheumatica and needing any info

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Rheumatoid Arthritis
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Posted 4/11/2015 1:01 AM (GMT 0)
Just found this forum and interested in talking to other PMR and RA folks and how they coped in the beginning and what tips I can get to help with the side effects of the prednisone. I am currently on 15 milligrams to start and have been given lots of info from the rheumatologist. At this point we are talking 1 year on meds and monitoring all the side effects as we go along.I am 61 and in very good physical shape. I maintain my weight by being a vegetarian and have a trainer in pilates and power walk 4 miles 3-4 days a week. As of late having the unbearable pain I have not been able to do my normal routine. When it got to not being able to move my arms with such pain in shoulders and hips and thighs I immediately got in to the specialist. It was an easy diagnosis. Now a new change...I have had 25 surgeries, many knee replacements, back surgeries and weighed 210lbs after my 7th knee surgery, so the weight gain worries me and I want to be diligent with my routine even with the ravenous hunger I know with prednisone.
Any info would be very much appreciated. I'm a retired surgical nurse so I have background in medical things, if that helps. Thank you for being here for support.
Posted 4/11/2015 3:05 AM (GMT 0)
Hi, I was told recently I had inflammatory polyarthritis. Is that similar to PMR?

I get my predisone in small bursts as needed. I love the feeling of energy it gives me, but hate the "crash" I feel when I go off. It does make me very carb hungry. Since I just got diagnosed with diabetes too, it is double trouble.
Posted 4/12/2015 5:55 AM (GMT 0)
Hi Kia and welcome! There are a lot of meds used to control RA, and 15 mg of prednisone for a long period of time would not be a good thing. My Dr wants me to get as low as I can. Plauquenil seems to work well for many. Did you get blood panels? What was your sedrate? I also stay active and exercise a lot to control my weight. I have had several surgeries to repair stuff as I fall apart, but hey, what else can you do? The worst thing for me is to quit moving. Freeze up fast. Good luck and keep posting!
Beth
Posted 4/19/2015 8:13 PM (GMT 0)
Just thought I would share my experience with PMR. In 2011 I was diagnosed with Pmr as a default because My Ra factor was negative and shad a rapid response to prednisone injection for severe pain stiffness in ER, unable to stand up cuz legs hurt so badly. Sed rate 100.followed up with top rheumy in town who decreased the prednisone and I just got worse. Turns out that a new rheumy told me 20% of people who have RA will test negative RA factor! I didn't show positive for RA factor for another year but was able to begin treatment earlier thanks to the new rheumy. She refused to start methotrexate without being absolutely sure I had RA. I was adopted at 3 days old so didn't know if it ran in family history. Dr ordered DNA test that confirmed the RA ! We are born with it, the mystery is what triggers the onset...RAwarrior info convinced me to begin methotrexate. Thank goodness I did, because it failed, and have Had to go through a lot of meds to try and slow down this destructive disease. Being treated for just PMR was a waste of time.
Posted 4/20/2015 12:48 AM (GMT 0)
seriously- there's a dna test that confirms RA? I am also seronegative yet know I have it and when it presented everyone said that's what it was but since I went from 0% functional to.....I can do just about anything since I have a high tolerance for pain...it is questionable which is very frustrating to me. Currently on prednisone only- dropped on my taper to 5 yesterday and feel pretty crappy. Doctor suggests giving plaquenil a try
Posted 4/20/2015 2:08 AM (GMT 0)
Yes. I seronegative, and without any symptoms in hands, no visible swelling/redness in any joints just a chronically high sed rate rate that made me terribly stiff and my leg muscles hurt so badly I couldn't bear weight on them. I had arthroscopic meniscus surgery on left knee and during PT both legs would judgement just kill me after the slightest exercise. Wasn't too bad during the session, but it was later it was off the hook. My physical therapist wanted me to get on vicodin at 6 weeks after surgery- my surgeon & I agreed to try warm water pt. No one suggested to check.sed rate prior to surgery or after for next 18 months due to no insurance.the RA was just cooking along with no way to discover it. Was also told some people just have elevated sed rates for no real reason anyway. Don't believe that!
Posted 4/20/2015 2:21 AM (GMT 0)
Oh, sorry I didn't answer your question. The genetic RA test has been around for about 10 years now. I had a doc with about 7 years in practice from Washington DC. who had ordered test previously for patients @ Georgetown med center & Walter Reed.
I had become unemployable due to the pain & inability to stand up for more than 5 minutes etc. Being completely without resources I got charity help from the County hospital as a Medically Indigent adult. Thank goodness they paid for the test.
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