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PMR return after 7 yrs

Posted , 10 users are following.

BJeanJellyBean
BJeanJellyBean

I was first diagnosed with PMR a little over 6 yrs ago. My initial symptoms were atypical. Although I had extreme fatigue, what brought me to the Dr. was horrible pain in my forearms. Shortly after I had jaw pain. After tons of tests, including a temporal artery biopsy (negative), I was told I had PMR. I was extremely anemic and had lost almost 20 pounds. I was seen by a Rheumatologist and put on prednisone. My treat lasted just 13 months.

Fast forward, over the last couple of months I have been experiencing fatigue and calf pain/ache. I muddled through it as I had been under the stress of losing my father after 5 yrs of caring for him, and dealing with the family trust he set up and his estate. However, calf pain/ache was wearing me down and I had begun to have hip pain that manifested after sitting. None of this even rung a bell with me as being PMR.

At any rate, I went to the doctor last week and he has run a battery of blood tests, and a doppler on my calfs.  Most of the blood tests are back and they rule out Lupus, Lyme, Rheumatoid Arthritis and Anemia. However, my C-Reactive Protein and Sedimentation Rate is over the normal parameters. The CRP is 3x the normal level, my sed rate is only 7 mm over the normal range. I may have lost a few pounds but that is about it.

The Dr. is leaning towards a new PMR flare but hasn't made a diagnosis or treatment plan. I don't have another appointment with him until the 10th of April. 

Now that I've bored you to tears, I'll get to my questions. Have any of you had atypical PMR symptoms? Been diagnosed with PMR without anemia, or a significant weight loss?  Or had a relapse with different symptoms from your initial experience?

I never thought I would actually look forward to taking a steroid, but I just can't stand the fatigue and aches and pains any longer.

I'm at my wits end...... thank God I have a husband that is more than kind and is holding up my end of things here at home. 

 

0 likes, 19 replies

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  • ClaireJG
    ClaireJG BJeanJellyBean

    Posted

    I’ve been told I’ve got atypical PMR because I’m in my mid 50s and my hands are involved, which apparently is unusual in PMR. However, after 20 months of signs and symptoms, they still talk about Lupus and RA, although the tests are all negative. Like Eileen, I’ve got tendonitis, which is improving on pred. The carpal tunnel symptoms are also improving and I no longer need my splints at night. 

    I’ve heard that you can have a relapse of PMR with a different presentation than the original signs and symptoms, but I probably heard that from Eileen. 

    Sorry to hear about your father. That will add to your stress. I’m really pleased you have a supportive husband though. Worth his weight in gold!

    Good luck. 

    • BJeanJellyBean
      BJeanJellyBean ClaireJG

      Posted

      Thanks for your kind words, Claire.  My father was a remarkable man, he was 93 when he left us. My husband transferred back to Michigan when dad could no longer physically care for his home, although he drove up until a year before he passed. I'm grateful for the last 5 years we had with him.

      It must be fairly routine for the doctors to look at things like lupus etc.... because my dr. is covering all that territory as well. So far everything is negative on those things. Thank God.

      I responded very fast to the prednisone the first time around, hopefully you will too. I was lucky in that I had no relapses when reducing the meds either. I'm surprised and baffled by this relapse, it's been so long.  I guess we just have to accept that what Eileen says is true....there just isn't a "cure".

      And yes, my husband is a gem, I'm so very lucky. He's been through this routine before and has jumped back in like a pro. 

      Well Claire, it's a journey isn't it? But I will say it could be worse so in that I'm thankful.

      Best wishes and good luck

    • ClaireJG
      ClaireJG BJeanJellyBean

      Posted

      We never have these special people in our lives for long enough, however old they were when we lost them. You always want them for longer. Your father certainly sounded amazing. 

      Have you been prescribed Prednisolone yet or is your dr still doing tests? If he starts you on steroids, I hope you get a rapid response. 

      Good luck in your continued journey with your husband by your side every step of the way! I’m sure he wouldn’t want it any other way. It sounds like you’ve had a tough time, what with the skin cancer on top of everything else!

      Take care. 

    • BJeanJellyBean
      BJeanJellyBean ClaireJG

      Posted

      Oh Claire you are so kind.  

      I see the doctor next week Tuesday. Don't know if he'll want to do follow up blood tests or not.  Hoping he will start treatment or refer me to a Rheumatologist. I just want to get it started so I can go back to a relatively normal life.  The meds works fast (and well) the last go around, I'm praying for similar results this time.

      The skin cancer is the result of being a "sun child" when I was young. We lived at the beach in the summers. I've had 5 Mohs treatments in the last 15 months.  But to be honest, I am very lucky, the kind of cancer it is once taken care of they do not spread, so it's just an inconvenience. 

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