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Early Diagnosis vs late on outcome

Posted , 13 users are following.

donna60512
donna60512

I have seen so many cases on here of people who were not diagnosed or misdiagnosed and had to wait months or years to get correct diagnoses and proper medication.  So far I have been very lucky.  I do not want to jinx myself here.  I was diagnosed in early May.  I have been pain free for several weeks and am down to 10 mg prednisone and my weekly methotrexate.  I may end up having flares when I further reduce in two weeks.  I will let everyone know then if I do.  Here is my questions????  If a person has been diagnosed early on, has the recovery been much quicker with fewer flares than those who have just gone through hell getting to a correct diagnosis???  Thanks, Donna

1 like, 50 replies

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  • kathy67492
    kathy67492 donna60512

    Posted

    My experience has been that men have a shorter bout with PMR for some reason...?  I have not heard of a correlation between PMR onset and diagnosis being an indicator for how long, or how severe it will be.someone on this forum we is better informed can answer that. Do try to avoid a flare at all cost....takes forever to get straight again!
    • jeanne333
      jeanne333 kathy67492

      Posted

      I think, length of time before diagnosis does have something to do with it. I had it a good year or more before it was diagnosed, and my lack of muscle loss, in that length of time, was quite severe. I lived my normal life, was rather active for 70+, but my muscles kept getting good weaker. The pain and stiffness, started really slowing me down. Finally I mentioned it to one of my doctors, (parathyroid specialst) and she said PMR. One year later, I'm at 19mg pred, and can hardly walk, my muscles do not want to co-operate, and my joints lock up at times. I feel like I'm walking thru flowing water up to my knees, with lead boots on.

    • donna60512
      donna60512 jeanne333

      Posted

      I was struck by the mention of a parathyroid doctor.  I have a friend who was diagnosed with Hashimoto, a disease of the parathyroid.  This diagnosis was just about  the same time that she was diagnosed with PMR.  I have low thyroid which has nothing to do with the parathryoid.  I sure hope you can reduce further on the prednisone.  Good luck!!!  To me it just made sense that the longer a person waits for a diagnosis the less active a person it.  I think as we get older that it is harder to get that activity back if we are sitting around for too long.  That was why I posed the question.  Take care, Donna
    • dea13
      dea13 jeanne333

      Posted

      Sorry to hear you are having trouble walking Jean. I to am having the same trouble, I can walk and stand for about 15 minutes then have to sit, pain goes within minutes and I can do the same again. Mine is in the top hip near the Gluts both sides. It's the only real pain I have at the moment with PMR and GCA ... I have been on 40mg of Pred for about 5 weeks now for the GA. I noticed thats when the trouble walking started, and the chronic pain that comes with it. Just started this week to drop 2.5 0ff the 40mg a day, I have had a little flare, but I will give it more time as it's just been 4 days.

      My Dr wants me down, as I am to have a breast operation for cancer in a few weeks, so I know things will be harder, but I am very lucky the cancer is contained and can be fixed with operation and radiation. Fun times ahead.

      But I do feel your pain, I am the same, my muscles just don't want to move sometimes, so frustrating " I'm 68 .

      Beast of luck, all we can do is hang in there smile  Cheers 

    • jeanne333
      jeanne333 dea13

      Posted

      I'm sorry to hear about the breast cancer, but your attitude seems good, which is a blg help. Both my Aunt 80yrs old and older Sister 62yrs old had breast cancer, and in both it was removed and all was well. My Sister had to have cemo my Aunt, no cemo. As for me, I've had my milk ducts removed (pre cancer left breast) and my other health issues are many, I had a massive infection 20 years ago, which damaged my heart, lungs, kidneys and thyroid, and now my parathyroids, all have gotten worse over time. I've learned to live with my limitations, but this walking is really getting to me. I've been on and off prenisone from 20mg to 40mg for that 20 years, sometimes for 6 months at a time, but usually only 3 months. At no time, till a year ago, did I ever have trouble with pain or stiffness, so in my case it isn't the prednisone. My problem walking got severely worse when my RA wanted me to try Hydroxychloroquine Sulfate -- Plaquenil. I had all top severe side effects, and a very bad PMR flare. l ended up with 2 leaky heart valves and not being able to walk without assistance. Thank God, the walking has gotten better, but I still have a terrible time, can't walk 20 feet without stopping. The PMR, has also effected my breathing, so I'm now on oxygen, so where I go, goes my portable oxegen supplies, my cane, walker or wheelchair. That's the end of my saga, sorry to unload on you, but wanted you to know, that others, feel your pain. We can only keep going, cuz as they say, the alternative is worse.

    • dea13
      dea13 jeanne333

      Posted

      So sorry Jean to hear all you have been through. I am confident that my operation will go well, as I said I was lucky it was found early.

      At the moment we are waiting on a few blood tests because my white cell count went high, ruling out other cancers, they think it's part of the Pred : Now taking 37.5 a day and hope to continue down.

      You didnt upload on me smile I wish you well : Cheers

    • jeanne333
      jeanne333 dea13

      Posted

      Here's to getting all blood count levels down to where the doctors want them. I'm sorry you have to go thru this at this time, living with PMR is bad enough, but this is a double whammy. Just know that we are all pulling for you. *** Kick that Cancer in the Butt ***

  • nellie14381
    nellie14381 donna60512

    Posted

    Hello Donna,

    I'm from US. My first symptoms started in November 2013 from hip pain and with full blown out case in February 2014 - pain all over the body, stuffiness, sleepless nights, weight loss and all other symptoms of PMR. My family physician for some reason did not diagnose me with PMR even my SED was 55 as my hip MRI did show real problem with big front muscle and hip join. I went from orthopedist to orthopedist and was told different diagnosis - few of them told me I need complete hip replacement as I totally lost movement in my hip joint. First RA doctor told me I have arthritis even I told her I have PMR. I diagnosed myself by reading about PMR and symptoms on the web, went to see different RA and he told me I have PMR after first week on 15 mg prednisone.

    I could not take prednisone due to extremely sensitive stomach and complete insomnia and. I was reducing slowly prednisone just after taking it just for 10 days. I remember at 7.5 dose I fell much better with side effect, but decided try something else more natural. All this time after prednisone I was on a supplement based on turmeric and herbs) and my SED rate dropped to almost normal.

    After getting a bit better without prednisone my RA changed his mind and decided I did not have a quick enough improvement on prednisone and I have fibromyalgia. I’m not very convinced, but I still see him every 4 months just for evaluation, and I think I can stop these visits as I do not benefit from them.

    I think I may have both fibromyalgia and PMR. I feel much better when I have a good night sleep and do not seat all day long behind my desk. But I have to work full time to have a medical insurance, and at same time know that I would fill better if I would stay more active and take better care of myself. It’s very hard to do at 63 with full time job and all these health issues. I think PMR and prednisone causing health decline in all other areas – heart, diabetes, multiple tendons issues and etc.

    Sometimes when I have very bad days I think may be try again prednisone and see what effect it would have on me, but my RA back then told me if I won’t to stay on prednisone and will try later again, it will take much longer for me to recover from PMR.

    May be this is correct.

    Regards

    Emis Moderator comment: I have removed product/company names as we do not allow repeated posting of these in the forums. If users wish to exchange these details please use the Private Message service.

    • donna60512
      donna60512 nellie14381

      Posted

      Hi Nellie,  Thank you so much for writing.  I sure hope you get some relief.  It must be really hard to continue working.  I retired when I was 66 and can't imagine what it would have been like to have PMR while still on the job.  I agree about activity.  On the days that I feel lazy, I really think I am not doing my body any good at all.  When I have people around me, I tend to do more and feel better.  I am pain free and have been for a while as I reduce on my prednisone.  I really hate taking prednisone.  Interesting that you mentioned turmeric as I have begun taking 500 mg a day and am hoping that this natural way of reducing the inflammation will help me to lower the prednisone faster.  I have not really had side effects from the prednisone or the methotrexate.  I will reduce to 7.5 mg of prednisone next week.  Sure hoping that the turmeric will help on that.  I wonder if others who have suffered for years might also have fibromyalgia.  It is sure a tricky and fine line to walk.  Good luck to you.  Donna

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