My 80+ mom on her 3rd round of Prednisone in less than a year.

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They think she has fibromyalgia. She is in excruciating pain more so in the evening when she sleeps. This is her 3rd and heaviest round of Prednisone. Starting at (4) 5mg tabs a day for 14 days then decreasing to (3) for 14 days and then 2 a day for 14 days ect til gone and a refill on the bottle. The last time she was on a high dose was only for a week and caused her incredible anxiety, high heart rate (which btw, she has a heart serious condition), diabetic reactions and blurred vision. The symptoms of fibromyalgia always come back within weeks of finishing the Prednisone. Does anyone have any other suggestions? Gabapentin maybe? Any thoughts are appreciated.

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11 Replies

  • Posted

    If your mother has fibromyalgia, prednisone will not have any effect. If the prednisone is working it means she has something else. What are her symptoms? Where is the pain? You could look up polymyalgia rheumatica and see if the symptoms are similar to what she has. The fact that she is getting relief at a fairly low dose, around 20mg, of prednisone could mean it is PMR.  If it is she will need to take prednisone long term not in short bursts.
    • Posted

      Thank you very much for the input. I am trying to learn more. It's a good point that it may be PMR. I didn't know that Prednisone doesn't work for Fibromyalgia. I am going to speak with her doctor tomorrow.

  • Posted

    Does she have weight loss, night sweats and bad stiffness of muscles that getting up in morning is diffucult?
    • Posted

      Yes. Her weight fluctuates, but she has sweats, pain stiffness, fatigue, difficulty holding bladder. She is afraid to bath and only showers because she doesn't think she can lift herself out from the tub, she says she doesn't have the strength and it's very painful.

    • Posted

      She has been a very energetic active woman even at her age. Since last summer that has changed. It came on very fast, within a few weeks.

    • Posted

      Ok, have the Doctor check her for PMR. The problem with Prednisone is that the symptoms get better only until prednisone is being used. As soon, as you stop it, it comes back roaring back, therefore, taper it before stopping.

       

    • Posted

      It is tough to diagnose an older person even for the trained doctors and fibromyalgia is always on top of their list. Autoimmune disease like PMR are rare, but the relief from prednisone gives some clues. 
  • Posted

    Gabapentin is for skin rash related to post herpetic neuralgia/shingles. Does she have this? 
    • Posted

      No she doesn't. Gabapentin was recommended by a few other elderly ladies I know who take it for fibromyalgia with success..They do taper her off of the Prednisone, but within a few weeks to maybe a month the symptoms return. The Prednisone does releive them literally over night, but it is damaging her sight and causing scary diabetic issues.

  • Posted

    I doubt they think they has fibromyalgia - it does NOT respond to pred at all. It is possible that they think she has polymyalgia rheumatica - which DOES respond and in fact pred is the only drug that manages it at present.

    However - it is a chronic illness and cannot be treated the way the pred is being used for your mother. It requires years. Here is a link to all the reading material we have collected on the PMR forum:

    https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

    It may not be the pred that is damaging her sight - there is an associated illness called GCA that causes blindness if untreated.

    But the doctors are causing more trouble by trying to treat her like that - you need a doctor who knows what they are doing. They don't since it really does sound like PMR if she responds so well to pred.

  • Posted

    A few weeks back there was a very interesting and informative discussion here about Prednisolone and how to taper from it. What is evident is that doctors have people come off this very powerful drug far too quickly. The consensus among people who have to take the drug periodically for a variety of reasons is that it has to be done VERY slowly, that one should never reduce by more than 10% of the previous week’s dose. Reducing from 20mg to 15mg, 10mg, 0 is a 25% reduction, a 33% reduction and then 100% reduction.

    While on Prednisolone, the adrenal glands stop producing cortisol naturally and they need to be coaxed into performing their natural function again.  Too fast and the adrenal glands won’t be doing their job - adrenal insufficiency. Many people of ALL ages experience extreme fatigue during this period with debilitating pain in the bones and joints. Factor in your mother’s age and whatever condition she has may be made worse by tapering off the steriods too quickly.

    Another thing that emerged during the discussion was that too fast a reduction can shock the body into a quick return of the initial symptoms.

    It is very well documented that Prednisole can cause problems with the heart, diabetes, bones and eyes. I am very surprised that a doctor is prescribing this drug for fibromyalgia, agree with other contributors that it is used in polymyalgia although the benefits have to be weighed against these other risks.

    Your mother needs a proper diagnosis and it needs to be established exactly which symptoms are related to the condition itself and which relate to the effects of the steroid withdrawal. Please do not underestimate the latter as steroid withdrawal can leave one debilitated and in pain for months and in a very elderly person could seem overwhelming.

    I’m 20 years younger than your mother and have to take Prednisolone periodically for Inflammatory Bowel Disease. I have learned what a wonderful drug this is for controlling symptoms quickly but how awful the side effects and withdrawal period can be. A flare can last a week but the recuperation from the steriods can take three months or more of bone pain and exhaustion.

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