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PMR and RA
I am a 53 year old woman. About 7 years ago, I started having hip pain, elbow pain, neck pain, and shoulder pain. I was having trouble sleeping, exercising hurt, and made my legs feel very weak. My PCP sent me to a Rheumatologist. My Sediment level, and CRP were very high, and I had a positive Rheumatoid Factor.
I had multiple radiographs taken, and RA was ruled out. I was then diagnosed with PMR. I was started on Prednisone. The higher dose of Pred helped with some of the pain, but not all of it, and I was still struggling. When I weaned down to 5mg., I stayed on that dose for about 4 years. Still really struggling with pain, and I was worn out.
I ended up moving, and seeing a new Rheumatologist. I was having so much pain that I could hardly function. My Sediment, and CRP were again very elevated, even on the 5 mg of Prednisone.
I had a CT scan of my hips, and spine. I found out I had scoliosis in two places in my back, and degenerative disc disease. I was also diagnosed with RA, taken off Pred, and put on a cancer drug.
I stayed in constant pain, and struggled for a few more months. Per my PCP, I decided to get a second opinion. I went to my 3rd Rheumatologist, and was diagnosed with Fibromyalgia. He took me off all meds, and put me on Cymbalta. He said I did not have PMR, or RA. Again I struggled for months in so much pain, and started having some shortness of breath, and my eyes were staying bloodshot. I went back to see my PCP, My Sediment level, and CRP were very elevated. I also had a Chest CT with dye.
The chest CT was normal. I was put on Doxycycline for a possible Viral infection, and back on a Prednisone pack.
I am currently on 5mg of Prednisone, and 60 mg of Cymbalta. And, in pain.
My PCP sent a referral to Duke, and I have an appointment in March, which is the soonest they can get me in. I am hoping they can give me a diagnosis, and maybe help me with pain relief, so I can live the active life I use to live.
Any suggestions, or advice?
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Once I was started on the prednisone, I just used how I felt each morning along with my daily pain and prednisone dosage to determine if I should lower my dosage. I think I only had the SED rate and CRP done for my annual exam by my PCP but I might have had one done at the 6 month or earlier mark for the first occurrence of PMR. The second time 6 years after remission, it was the PMR pain coming back and confirmed by a SED rate and CRP test that started me back on prednisone and I was tested again at my following annual exam. The PMR last a year and a half the second time around.
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2 ReactionsGood luck at Duke. My crp goes up as my prednisone is tapered down. I am starting methotrexate but it takes 3 months to kick in apparently.
What is considered a high CRP? Mine is around 2
Thank you! I tried methotrexate, and did not have any luck with pain relief. I hope it works for you.
My CRP, and Sed rate go up to, as soon as I start tapering down.
I hope one day they will come up with a cure.
Are sure you are correct. That seems odd even if you were healthy?
I was helped by going on an anti inflammatory diet prescribed by my weight loss physician and I also did aquatic therapy which helped tremendously to keep my joins moving. In water you feel almost no pain. The diet helped me shed 60 ibs and the pain subcided as well. Everyone is different but it doesn't hurt to try new approaches. The point is don't give up.
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2 ReactionsMy PMR symptoms started about 6 years ago. Shoulder pain, neck pain, hip pain, lower back pain…. I am now 53.
I was in excellent health, in great shape, and very active. I now struggle to do anything. And, sports are definitely out. It’s been a struggle to stay positive.
I have been to 3 Rheumatologists, none of which would diagnose me with PMR, due to my age.
I have 6 family members who have, or have had PMR. My Dad being one of them.
I have been on Cymbalta, and Prednisone most of this time, tapering down to 5mg., and still being in pain.
I tried Methotrexate oral, and it made me very sick, and did not give me any pain relief.
I am now seeing a Rheumatologist at Duke University, who switched my Prednisone to Medrol.
I am currently on 6 mg., but some days have to go up to 8mg. I am definitely not pain free, and some days it’s hard to function.
I do feel the Medrol has helped much more, than the Prednisone. And, not as many side effects.
My Rheumatologist wants me to try the injectable Methotrexate, along with the Medrol, in hopes that I can try and get off the Medrol. As, I have been on steroids for 6 years now. And, they have definitely taken a toll on my body. I don’t even like looking in a mirror anymore.
Has anyone had luck with pain relief from the Injectable Methotrexate? Side effects?
I still struggle so much with pain, that I’m hesitant to go off the Medrol.
Thank you.
Hi @kmb181, You'll see here that I moved your post titled PMR to your post PMR and RA since they were closely related and caught us up on your progression with your experience. I added it to the PMR group as you can see so any member that goes to that group will also see your post.
I know @jcaffrey47 and @oldkarl have used injectable Methotrexate.
Do you have any other conditions that may effect the use of the medicine?
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2 ReactionsHi~
I do not have any conditions that I know of currently that the methotrexate would affect.
I am going for a Pet Scan in two weeks though, to make sure nothing else is going on, and to find out if they can see the inflammation. My CRP, and Sediment have been elevated since I started this journey. Even on the steroids.
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1 ReactionMy pain journey began in 2017. I was diagnosed with PMR, and have been on, and off steroids since then. Never pain free, unless on 20mg. As soon as I started tapering, my pain returned. But, it was always my Rheumatologists goal, to get me off the steroids, even if I was in pain. And, no one really listened to me. I was pretty much dismissed.
3 Rheumatologists later, I am seeing a Rheumatologist at Duke Hospital.
She “thinks” I have PMR, with the possibility of something else going on. And, is concerned that some of my pain could be from Degenerative disc disease, or my osteoarthritis.
I started on injectable methotrexate, about 5 months ago. (Inflammation markers have stayed down so far). I am also on 4mg of Medrol. And, recently was put on Celebrex, with the goal being that the Celebrex will help me wean off the Medrol. Anyone tried this with success?
My concern is that my pain level is definitely increasing. And, my legs are very painful, off balance, and weak. Rib cage/ neck pain is definitely up as well.
I’m being sent for an EMG on my legs. Though I’m wondering if there’s a better test to determine why my legs are having these issues?
I have been on steroids for so many years, so I know I have to get off of them. But, for pain, they work the best, even though they are putting havoc on my body.
Hoping the Celebrex will start helping with the pain.
I feel that all these years later, I’m not much better than I was to start with.
Just more broken down.
K