RA Diagnosis
Posted , 5 users are following.
Back in March, I woke up one day and could not cross my legs, raise my arms, or stand up and move! I had no idea of what was going on. I went to my GP and was sent to physical therapy. Obviously did not work. About 8 weeks in, I went back to my GP and was diagnosed with polymayalgia rheumatica. After 24 hours of being on 40 mg of prednisone, I had absolutely zero pain. I felt like a new woman! During this time my GP sent me to a rheumatologist, and I explained my pain. He ran my blood work, and my Sed factor was through the roof. Now, by this time I was off the prednisone and the pain was back, although not near as bad as before. He put me on a much lesser dose of prednisone, hydrochoriquine. I felt no relief. I went back and he added 12.5 mil of methedroxate. After 8 weeks, my pain is worse, and I am very frustrated. What concerns me is that I have no joint pain at all. My pain is in my upper legs, and feels like a bad sunburn with some achy feeling. How can this be RA with no joint pain or swelling??? Could someone please try to explain there pain. Is it different for everybody? I have been to my RA three different times, and he just puts me on more meds and tells me it takes time. The last time i say him, I literally fell part and was just sobbing. He wanted to put me on something for the anxiety that I was experiencing due to the RA diagnosis. I declined and told him the only additional medication I want to be on is something that will help with my pain. Before March, when I woke up with this, I walked 5 miles a day and did weight training. Now I cannot take my dog for a walk down to my mailbox without my legs being on fire. Does anyone have any ideas???
Thank you
0 likes, 3 replies
cherylnanny dona3515
Posted
Hi Dona
I'm so sorry that you are in such a bad way. Please be assured that your meds will eventually start to work for you. Polymayalgia is about muscle inflammation I think, rather than joints. This explains the pain in your legs. My Mother suffers with it, but I have RA in my joints. My pain is a burning hot sensation around the affected joints. My Mother however says it feels like her muscles feel like cement and almost seize up. It took 12 months for me to stabilize on the medication. I am on Hydroxychloroquine too, and it works for me. Consider getting something for the anxiety. Amitryptoline was amazing for me to help with sleep etc. I hope this helps. Good Luck x
Gloria814 dona3515
Posted
Hi Dona
sorry to hear that you are still in so much pain. All of us seem to experience it differently and it does take time for the medications to finally work. Did the RA also confirm the diagnosis of poly. rheum. I have seroneg. RA but don't experience any joint swelling, just 1 finger has been swollen on and off. I have a burning sensation in my lower leg and foot. I also have a medication for anxiety that I take on occas--to help with sleep and take a medication --lower dose for depression and help to cope with the diagnosis and sleep. These medications can also help with pain esp the depression meds. You will in time get relief from the medicine it is so frustrating that it takes so long to find the right combination of drugs. But keep persisting to the doctor that the pain is AWFUL and you are not getting effective relief. I hope the medicine finally starts working for you so you can get on with your life
EileenH dona3515
Posted
What you are describing is typical of polymyalgia theumatica - particularly the sudden onset and the response to pred. What dose of pred are you on now? 40mg is actually rather high to start with in PMR. that is a dose usually used for PMR's big sister GCA. However - a lot of rheumies seem to think that PMR is beneath them to diagnose and will do all they can to make it something else. Many people need at least 20mg/day at first until all the inflammation is under control and only then can they start to reduce the dose slowly. Neither hydrochloroquine no methotrexate will do much in PMR although some rheumies use them on the grounds you can get away with a lower dose - but they tend not to work in the early stages and often don't work at all.
This is a link to the front page of the forum on here
https://patient.info/forums/discuss/browse/polymyalgia-rheumatica-and-gca-1708
The third post down is our resources list with a lot of links to information about PMR. My suggestion would be to do your reading and then go back to your GP and discuss it with them - and look for another rheumy if you can. I don't know why people with PMR in the US in particular have such problems finding doctors who listen - but we do see it all the time on the forums.
Good luck - and maybe I'll see you over on the other forum!