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I have been diagnosed with PMR a year agoand Just recently RA.

Posted , 16 users are following.

rosie5228531
rosie5228531

I woke up one morning and couldn’t lift my arms abovUnfortunately I was put on 30mg of Prednisone 

1 like, 11 replies

11 Replies

  • rosie5228531
    rosie5228531

    Posted

    I’m a new user and I accidentally hit the wrong button and post it before I was ready as you can see. I apologize. I was going to tell you that I had woken up what warning last February and was not able to remove my gown due to the fact I could not lift my arms. Both arms were sore and tender and I was completely confused about what was going on. That was followed by not being able to turn over in the bed, aching in my hips,  not being able to pull the covers up at night, and finally not be able to hardly walk. Of course I realize something was terribly wrong So I went to my primary care physician who took bloodwork and gave me a high dose of prednisone And my symptoms went away for a short while. When the symptoms return she sent me to a rheumatologist in and bloodwork confirmed the diagnosis of PMR which I had looked up  of course by then on the Internet. He put me on a regimen of 30 mg of prednisone and I was on that for about eight months when I had my first  unexplained break of my T7 vertebrae. Within a month I had that repaired and I sneezed and broke T8 vertebrae. By then I have a diagnosis  of severe osteoporosis. I started waning off of the prednisone but I also broke 29 vertebrae.  All of these were repaired with surgery using kyphoplasty because I was also taking care of to aging parents at the time but if you are now in nursing care. I had three surgeries in three months.  My last surgery was January 23, 2018. I think I have another break from bending down to pick up for sock.  I’m trying to forgo surgery with this break and let it heal on its own by wearing a back brace. I am also on Tymlos shots to repair my bones for 18 minutes daily. I no longer take prednisone. The reason for this  inquiry is that two weeks ago I woke up and could not move my hands. They were so painful that I could not pick up my phone, push the buttons on the microwave, or do anything! I could not find anything in the literature about PMR that mentioned hand pain like this! I made an appointment with a new rheumatologist who did more bloodwork  and it came back that I had RA. My said rate came back at 37. He prescribed me methotrexate.  My Hands didn’t get much better in fact they got worse.   The doctor told me to come in for a shot of steroids which helped some. I could at least open and close my hands and the left-hand was much better but the right still will not close and make a fist. My right hand is worse and is very painful at night especially  keeping me awake and almost in tears. As the day progresses it eases off a lot and I am able to use it somewhat but there is no strength in the hand compared to normal. I have seen on this site that Many of you are having the same problem or one very similar. Any help or advice would be greatly appreciated. I feel I cannot go back on the Prednisone as my bones are so fragile. 
    • Miki680
      Miki680 rosie5228531

      Posted

      So sorry  you are having this pain Rosie. I can certainly sympathize with you as it sounds very similar to what I had when I was first diagnosed with PMR a few months ago. I also had complications with my hands and wrists, but I do think it was more like carpal tunnel than RA.   What has helped me significantly is wearing wrist/hand bands at night that are tight over the wrist and top of the palm. They fit like gloves except the fingers are exposed and they keep the rest area tight during the night when I sleep. They have been very  helpful, and maybe they would help you too. one day ata a time...
    • rosie5228531
      rosie5228531 Miki680

      Posted

      Thank you Miki680!  I don’t know what to do with my hands at night since before this I put them under my head or under my pillow and now I can’t do either one. Since they hurt they are just awkward and I don’t know what to do with them. Last night the pain was extremely bad in my fingers right on down to the tips. Doesn’t seem to be the wrist. 
    • constance.de
      constance.de rosie5228531

      Posted

      Rosie, have you joined the RA and OP forums?  They are more likely to be able to help you than this forum I think.

      Try buying a pair of tight fitting gloves that are a size too small - just a thought!!

      You really are going through it, it will take a lot of personal strength to get through it.

    • mary19068
      mary19068 rosie5228531

      Posted

      Hi rosie5228531

      Sounds as if you have been through a pretty rough time. I found that Voltarol rub in gel is great for pain an inflammation. Try rubbing into your hands as if using hand cream before bed. I found it helped with the osteoarthritis pain in my fingers. The pain relief lasts for 12 hours and you can get it on script from your doctor...hope this helps and hope your parents are doing ok...

    • EileenH
      EileenH rosie5228531

      Posted

      If you have osteoporosis after a relatively short time on pred the first time I think it is probably less the pred than the fact you already had low bone density BEFORE you went on pred. Had you not had a dexascan or been on any medication to correct the low bone density - such as alendronic acid (Fosamax) or another similar drug? At least you are now on Tymlos - it actively builds bone so that should be helpful.

      However - your original doctor obviously doesn't know much about PMR: the usual starting dose for PMR is 15-20mg/day and after 4-6 weeks you then start to taper slowly to find the lowest dose of pred that gives the same result as the starting dose did. Generally, with a careful taper, this is below 10mg/day for most patients. I do wish doctors would admit they don't know and look it up! There is advice and guidance all over the medical literature. No-one with PMR should be left on 30mg pred for months unless they have GCA and even then that is unusual. You can have hand pain in PMR - or due to another condition called RS3PE syndrome which is also found alongside PMR in a lot of patients.

      Did your doctor also not explain that methotrexate can take up to 6 months to start to work in RA? Usually they use oral pred in the meantime to reduce the pain - injections are often a bit hit or miss.

      In another thread on here there is mention of a video teaching you how to bend: " google the "Lost art of bending over - how other cultures spare their spines"" you'll find an excellent little video attached with a lady '"folding like a table. I have now perfected this, its so much better for your spine."

      If warmth helps - would hand wax baths help do you think? It may be worth a try.

       

    • constance.de
      constance.de mary19068

      Posted

      I think I have tried every gel on the market and I have never found one which helped the pain for 5 minutes, let alone 12 hours!
    • Mrs_Hobbles
      Mrs_Hobbles rosie5228531

      Posted

      Hi Rosie, I'm so sorry you're going through all that you have been, sounds like an absolute nightmare! I agree with Miki680 and wonder would the sudden pain in your hands be Carpel Tunnel? I had it in both hands for many years in varying degrees. It started with my second pregnancy and I remember likening the pain to a white pain that extended beyond my fingers, it's was truly herrendous. It was always worse at night and I lost strength etc during the day. From my recollection, there is pain in all the fingers except for one side of the ring finger, I'm oiur to correction. In my case it was brought on by water retention because of the pregnancy, so I wonder have you developed water retention that would coincide with getting the pain! What causes the pain is the muscle across the bottom if your palm pressing down on the nerves that come through your wrist into your hand. A small operation is what will sort it out for you, and I know you probably don't want any more operations but it is hugely successful. The surgeon cuts through this muscle and then sutures only the skin, leaving the muscle to heal itself, which it does by growing, thereby extending the size of it so that when healed it no longer constricts the nerves. I have never looked back since getting mine done and would highly recommend the operation. If it is Carpel Tunnel, there is a solution and at least it's one thing ticked off the list of possibles!! Wishing you all the best and hope you can get it sorted out quickly!

    • mary19068
      mary19068 constance.de

      Posted

      Hi constance.de

      So sorry you cannot find any pain relief. I found Voltarol worked well for me it certainly helped me to get some sleep and pain relief during day. I do hope you can find something that can give you some pain relief.....

    • constance.de
      constance.de mary19068

      Posted

      I find cocodamol helps, but I daren’t take more than 3 (or on REALY bad days - 4) because they are supposed to be addictive.  Mind you, if they help, I really don’t care if I become addicted or not.   At 78 who cares??
  • priscilla23271
    priscilla23271 rosie5228531

    Posted

    I had sudden severe carpal tunnel after being put on blood pressure tablets, one of which was Ramipril, and had to increase my prednisolone from 7.5 to 15, even so it took about 6 months for them to fully recover.  Maybe if you are taking something similar it could be causing carpal tunnel, and as PMR itself can also cause carpal tunnel you are getting a double whammy! .  I was diagnosed as having severe carpal tunnel, with fingers tingling and numb, swelling of my whole hands, pain and stiffness in my fingers which prevented me from making a fist, and it has now almost disappeared, and my Pred dose has tapered to 7, so I am hopeful that it won't come back.  Needless to say I don't take the blood pressure tablets any more. 

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