Diagnosed with PMR after back surgery 2.5 years ago. Also had deep vein thrombosis, and again after hip replacement a year ago. Tried Xarelto and Eliquis and both caused intolerable pain and immobility within two days. Had to stay in rehab for 3 weeks after hip surgery to force myself to stay on warfarin (Coumadin). Would be in tears through the night until my morning dose of prednisone would knock down the pain enough to dress for lunch.
Now I have another DVT and cannot have the badly needed second hip replacement. Doctors say I should be on a daily blood thinner for the rest of my life. All I can stand is a quarter dose of Xarelto at bedtime.
Blood thinners put my pain and stiffness right back to before PMR diagnosis. Rheumatologist won't prescribe more than 7.5 mg of pred. Can barely accomplish anything!
Has this happened to anyone else? How did you deal with it?
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The three local rheumatologists I've gone to all think getting off prednisone is more important than the relief it gives to be able to walk and function without overwhelming pain and lead feet. Methotrexate made me feel so bad I had to quit a low demand night-time job. Dr wants me to try leflunomide. I can't consider that until I finish antibiotics for recently discovered chronic Lyme disease and Rocky Mountain spotted fever.
When I was on warfarin 20 mg pred and 10 mg oxycodone would help just enough to change clothes, eat a meal, push through physical therapy, and watch tv until the next warfarin dose. Then I was in agony through the night. Once I got home I quit warfarin to take care of myself, house and animals although that was very risky.
Eliquis and Xarelto are intolerable after a few days. It feels like I would need 100 mg of pred to help.
Are they not considering that Lyme may be the actual cause of your symptoms? It is a differential diagnosis.
But I hope all 3 develop PMR in the future and meet with the disability and pain they are condemning you to. I always want to ask such caring doctors if they would tell an RA patient to stop their DMARD that is allowing a reasonable quality of life. They would be horrified at that idea - but pred is our DMARD.
Have you tried any other anticoagulants? I use Pradaxa with no problems at all.
Why did you have to force yourself to stay on wafarin?
But frankly - a new rheumatologist would be a good start - 7.5mg of pred is blatantly obviously not enough for you and what effect there is is not lasting the full 24 hours. In fact, under the circumstances, I suspect most people would not be able to cope on 7.5mg - the stress of all this is probably causing a major flare in disease activity.
I read about Pradaxa. That was not one of the drugs the hematologist mentioned. He said my only choices were warfarin, Eliquis, Xarelto or enoxaparin. I can't do injections every day nor can I afford it. Pradaxa may not be covered by Medicare but I can check.
I stopped the Xarelto. I'm taking extra vitamin E and C, garlic, omega 3s , and an aspirin. Praying that will work for the third time to get me through this risk of a pulmonary embolism.
Checked out the price of Pradaxa and it would be a quarter of my monthly income. For most seniors on Medicare, the low priced drugs had better work because the new drugs that could be more effective are not a possibility.
I used Xarelto rather than Warfarin. Luckily with no problem. Do you think it is that which is causing you the problems or do you think it could be that you are on too low a dose of steroids?
I think I have both problems. Taking 20 mg pred doesn't ease the reaction to the blood thinner much at all. I have had a head/face ache and sore scalp continuously for 2.5 years. Even when I started on 40 mg those symptoms didnt go away. Rheumatologist says I can't possibly have GCA because it goes away by itself within two years.
I've been to both practices locally. I may have to go back to University of North Carolina Medical Center, but travel would be difficult for several reasons.
Some doctors do talk gibberish, no one told GCA that it should only last two years. 40mg is quite a low dose for GCA. Perhaps you never got it banged on the head.
I understand your dilemma completely..in my case I just had a recent PMR flare-up..the Dr. I was seeing only wanted me on Prednisone for 5 days at 20 mg. then 5 days at 15 mg. and continue that way until stopping.. I have seen a total of 4 Rheumatologists..two of those believed you got PMR once..no flares..I have at this time finally been given pain medication...after suffering since 2007..I am so sorry you have to go through such torment..
It is so disappointing and sad that these doctors show no interest in learning or helping us to find healthier approaches. Just add another drug, come back in three months, and we'll check to see how much damage the new drug is causing!
Are you getting state of the art treatment for Lyme disease? I think it takes a pretty major course of antibiotics. As it is one of the diseases which needs to be ruled out before a diagnosis of PMR I wonder if adequate treatment of the Lyme will help alleviate a lot of your pain symptoms. Fingers crossed.
I'm just completing 45 days of high dose amoxicillin. Was supposed to also take doxycycline, but had allergic reaction, so will be starting Clarithromycin .
Local ER Dr diagnosed PMR and I thank God he figured it out. Verified by specialist at UNC. What do you understand would be current treatment for chronic Lyme? My immunologist said I had a hard time with methotrexate because it knocked my immune system so low it let the Lyme spirochetes take over again.
At my recent visit with the local rheumatologist, she said she doesn't believe I have Lyme and wants a second opinion from infectious disease doc. Tired of going to all these Drs and feeling worse.
Your rheumatologist is questioning the verification by the specialist at UNC? Was it verification of Lyme or PMR? If Lyme I wonder why your rheumatologist questions the specialist?
I think the long dose of antibiotics is what's needed. I don't think initially medics understood how long the treatment needs to be. I wonder what they do at the end of the 45 days to make sure that it's done the trick?
By the way, It is, apparently, a good idea to take some sort of probiotic between your doses of antibiotic. The antibiotic will wipe out the good bugs when the next dose comes along, but you still get a few hours of helpful microbes populating the gut. I don't know if you tolerate dairy, kefir contains more varieties of good bacteria than yoghurt. If you can get hold of a product called Cultured Coconut that is really good. I think they export to the US now, but not countrywide. theculturedcoconut.com/page...
I went to UNC in spring of last year. Just had the blood work that showed Lyme two months ago. I have been drinking kefir and eating yoghurt, and just purchased the top quality brand of probiotics. Love coconut ice cream so will look for a fermented product.
I do think there is a key to my problem having to do with how blood thinners affect small vessel vasculitis in someone very sensitive to chemicals, just can't find someone to help figure it out. My lower back and leg muscles and tendons are tight as guitar strings, so standing, walking, and bending over are terribly painful. But I'm supposed to stay active to heal the DVT and prevent more.
You do have a lot on your plate. The covid situation makes things so much more difficult as it's harder to find just that right person with the expertise and interest in helping figure things out. There is a Lyme Disease community on HealthUnlocked but I noticed there's hardly any activity over there, so wouldn't be much help.
When my right knee was so swollen from osteoarthritis and a minor injury I could hardly walk my physiotherapist gave me some very simple isometric exercises to do which were designed to strengthen the muscles, targeting the ones which support the knee, without strain. It was a start. I feel like I'm not doing anything but with persistence it does help. I wonder if there is some way you can find exercises which will help improve or at least retain your muscle strength without exacerbating the pain? I also now use a small under the desk cycle so I get a mild cardo workout if I pedal hard enough. Apparently this machine can also be used for arm/shoulder therapy as well although I haven't yet tried it. Not saying what I'm doing is right for you, but there may be some way for you to get the exercise you need without having to be in so much distress.
Any chance of seeing a physiotherapist who can help relax those tight muscles and tendons? When I first saw my current physiotherapist she said my back muscles were like bricks, more or less in permanent spasm. She performed "dry needling" to reset the electrical signals, and also a targeted massage. It worked, took two or three sessions targeting different areas of the back. Doing that actually relieved hip pain I'd had, referred from the spine, so bad for a while I thought I'd need a hip replacement. No return of that symptom five years later (and I didn't have OA in my hip, about the only place I don't have it).
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