Flareups, how to manage

Posted , 14 users are following.

Hello, hoping some of you can advise me on how to manage flareups. It has been about 2 1/2years now that I have had PMR. I was never on a really high dose of Prednisone, started at 20mg. Whenever I go below 15 even by 1/2mg my symptoms return, so I go back to 15 and in a few days to a week am feeling better.

What I am wondering is when you have a flareup and return to the higher dose how long should you wait before you try to reduce again? I am getting very frustrated at trying to reduce and would just like to stay at 15 as my energy leval is pretty decent and I feel well. However I keep getting the message from my rhematologist , family Dr. and even my pharmacist that I need to be decreasing. That is all right for them to say as they have no idea of how it feels to be unable to function properly.

Thanks

Carol Ann

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  • Posted

    Hi Carol Ann -

    If it makes you feel any better I am in almost exactly the same situation.

    Been dealing with being on steroids for PMR for 2 years now and I am encountering similar challenges as you when I try to reduce. Started at 15mg and am stuck at 12/11 with the same strong suggestions from my Rheumy and pain management specialist although not being pressured by them.

    Anxious to hear the opinions of others.

    Good luck and stay strong.

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    • Posted

      How are you taking your dosage, at one time or splitting it? I have been on about 7.5 daily for 10 days. I take 5 in the morning and 2.5 at night. So far this seems to be working for me, but of course this may be "early days."

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  • Posted

    If the activity of the underlying disease is too high you are unlikely to be able to reduce. Some people only absorb 50% of the oral pred they take - others absorb up to 90%. So you at 15mg could really be getting the effect of only 7.5mg while your neighbour at 8mg is getting the benefit of 7mg. They wouldn't complain about his dose.

    They are being unrealistic - but is the PMR diagnosis absolutely certain? Other things resemble PMR and respond to higher doses of pred - but not to lower ones.

    You are in the USA I assume? They do seem less realistic about PMR - not to mention pretty ignorant about the mechanisms involved.

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    • Posted

      I can understand what you are saying about absorption rates, and the status of the underlying disease. I know that my rheumatologist never mentions anything like that. He is a very nice person, but does not really say much. Do I have PMR for certain? Who knows. For about 1 1/2years I was experiencing problems with extreme fatigue and muscle weakness, to the point where I could hardly sit up by myself or get up off a chair or couch. My family Dr. would put me on Pred. I would improve, he would discontinue it and in a few weeks I was back in asking him to prescribe it again. About a year later they sent me to an endocrinolagist who said that my bloodwork showed that I had an auto immune problem and needed to see a rheumatologist. Since then I have been being treated for PNR, and you are right I do not think they are very knowledgeable about it. I was told it would not last more than 2 years. I am actually in Canada, and am not sure they are any better than the Drs. in the U.S.

      The one question I still have is how long should I wait after a flare up to start trying to decrease again. To me if the underlying status of the disease could still be highly active it would make sense not to decrease for at least 3 months??

      thanks Carol Ann

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    • Posted

      Personally I think that if you are meeting this problem at the same dose over and over, you need at least 2 to 3 months before trying 1/2mg again. Eventually it works for most people.

      However - did they ever do any muscle studies or a creatine kinase blood test? The muscle weakness you describe isn't something that is typical of PMR, unless like many patients, you are using weakness meaning being unable to do something.

      There are several Canadian members on the HealthUnlocked forum - do you use it too? Maybe someone is not too far from you.

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    • Posted

      Thanks, I am going to wait 3 months before trying to reduce again. It will be nice to be able to function better for 3 months.

      I am not sure about the creatine kinase blood test, I did do a 24hr. urine which was for muscle weakness. I do mean being unable to do things, however when not on prednisone my thigh muscles in particular feel like they just will not work.

      I will try the Health Unlocked forum, did not know about it.

      My other question is that even when managing fairly well on Prednisone I am really tired by 1 or 2pm and have to nap. Even though I feel a bit better after napping my energy levals in the evening are poor. I wonder is this the PMR or is it just an age related development. I am 72.

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    • Posted

      Fatigue is a common effect of all autoimmune disorders - this may help you get a handle on it:

      https://healthunlocked.com/pmrgcauk/posts/135650532/fatigue-pacing-spoons-and-a-gorilla...

      Sometimes it is because the antiinflammatory effect of pred isn't lasting the full 24 hours and the symptoms are returning before the next dose is due. That may be managed better by splitting the dose, often 2/3 in the morning, the rest about an hour before the symptoms reappear. It is worth trying.

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  • Posted

    Listen to Eileen. I am trying to reduce also, but am aware that I may have to increase. I'm trying different things like splitting dosage. I am keeping a log so that I can follow progress in a systematic way. To-night I am going out to an event, so I have delayed the 5mg I took yesterday early morning until about 11a.m. - will see how that works. Then, before I go to bed I will take another approx. (I cannot divide pill evenly) I'll take 2.5mg. Good Luck !

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    • Posted

      Thanks, I have tried splitting the doseage and decreasing by only 1/2 mg. It works, but only till I get to 15mg. After that it is not successful.

      Carol Ann

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  • Posted

    It is hard to say, but your initial start /stop treatment may have cause this resistance to reduction. Often people who "yoyo" there dose have hard time tapering. Are you using DSNS )slow taper method when reducing or you are going in one step? If you use slow taper, it may give your body better chance to adjust to new dose.

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    • Posted

      Hi Nick, thanks, I actually have often wondered about that and whether it has just made recovering harder as well. I initially tried just decreasing as per the Drs. instructions, but of course that did not work as much to fast. Then I started the DSNS slow taper and is worked better, but only until I got to 15. We trust our Drs. and mostly that is okay but It was extremely difficult as it took so long to be diagnosed, and even though I did research my symptoms I do not think I ever pulled up PMR.

      Carol Ann

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    • Posted

      Interesting you didn't get PMR as a response to listing your symptoms on the internet. I did the same and came up with PMR, which I'd never heard of before, but when I saw it was treated with steroids I dismissed the idea as I didn't believe I could ever have anything requiring serious medicine like that, and forgot all about it. About a year later a new doctor diagnosed me very quickly, and I've never looked back. Her treatment has been for the most part very good. I, too, am in Canada.

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    • Posted

      Hi, were your symptoms the same or similar to mine? were you seeing a Dr. for the year before you were diagnosed? It took a 1 1/2 to 2 years for me to get a diagnosis and to start proper treatment. I am in Ontario, where are you? Have you been on the Health unlocked forum. This is the first I have heard of it.

      Carol Ann

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    • Posted

      My symptoms were rather classic, I think. I can't remember now (it's been over four years) which symptoms I listed, when researching, probably difficulty standing, stiff neck and shoulders, that sort of thing. I assumed it was just osteoarthritis getting worse and the young doctor I was seeing at the time, my physician of many years having retired, assumed same thing and simply kept prescribing heavy duty painkillers which I didn't take. Eventually she moved out of my area and although she said I could follow her (not all that far) I thought to myself why would I? Which left me without a family doctor. "Fortunately" when I went to seek help from the duty doctor at the practice where I'd been a patient since the 1970s only to be told I wasn't a patient there any more because my doctor had left, I was so desperate I just stood there with tears pouring down my face saying I felt I'd fallen off a cliff. By then I'd lost a lot of weight and thought I was dying. This reaction brought out the best in the receptionist and she got me in with a doctor who agreed to see me right away, and took me on as a patient. She redid tests the other doctor had said had shown nothing, (they did, moderately raised inflammatory markers and low iron) and after that gave me the pred trial and confirmed her diagnosis within a week. I live in Nova Scotia. On healthunlocked I'm HeronNS.

      Quite early on I learned about slow taper plans and my new doctor was from the beginning aware that the patient controls the taper. I followed her instructions to start and then slowed down when I needed to. I was down to 3 mg after one year. But that appears to have been very close to my lowest best dose, around 2-2.5 where I've been for a couple of years now.

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    • Posted

      Oh, and when I think about it I think I had PMR symptoms for well over a year before diagnosis. Unlike some people who seem to get it full blown overnight they built up gradually over time until I was becoming noticeably disabled.

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    • Posted

      I was seeing a doctor at intervals for 5 years before I was diagnosed - I even saw a rheumy and a musculoskeletal specialist (a glorified but in his case not very good physiotherapist!) both of whom missed what it might be. The rheumy even announced it was OA, she could "feel it in my knee" - an x-ray some 13 years later ruled out any sign of OA!! After 14 years of PMR and 9 years of pred I still have PMR.

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    • Posted

      Hi Anhaga,

      Something that you said (wrote?) caught my attention. You mentioned that in your pre-pred blood tests you showed a low iron count. Do you (or anyone else reading this) know if this is one of the symptoms of PMR? I ask this because I was being treated for low iron long before I was diagnosed with PMR. The doctor had me taking a liquid iron supplement which did nothing.

      After the PMR diagnosis and prednisone treatment the low iron count disappeared.

      Also, congrats on getting down to the 2 -2.5 pred level. Im a bit from that at 7.0 mg, using DSNS after one flair.

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    • Posted

      "Most PMR patients have anemia, which is usually mild to moderate. In addition to low red blood cell counts, these people have low blood iron levels — but since they also have normal or high levels of the blood protein ferritin, they are not actually iron deficient. Instead, they have a condition called the anemia of chronic disease, a common but nonspecific reflection of long-standing inflammation anywhere in the body."

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    • Posted

      I had low ferritin for awhile and I also had restless legs a side effect of a long term medication was on. It apparently is common with restless leg syndrome if I remember correctly.

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    • Posted

      I don't think I even know what restless leg syndrome is,, although of course I've heard of it. I probably should not be a vegetarian but should eat red meat!

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    • Posted

      Yes, you have to log in, which means you have to set up an account, which means you have to subscribe. It's only $5 US but ... these piddly charges add up. I'm much more likely to send a few shekels to The Guardian which so far maintains open access but asks if you can help by paying.

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    • Posted

      Oh yes - I saw that when I went back. But it definitely wasn't like that when I found it and I read the entire article...

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    • Posted

      According to the Mayo Clinic :

      "A ferritin test measures the amount of ferritin in your blood. Ferritin is a blood cell protein that contains iron. A ferritin test helps your doctor understand how much iron your body is storing.

      If a ferritin test reveals that your blood ferritin level is lower than normal, it indicates your body's iron stores are low and you have iron deficiency."

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    • Posted

      Yes, but I was referring to the fact that although a PMR patient may have low haemoglobin count their ferritin level is normal so they are not actually iron deficient. But my ferritin was very low. The normal range is rather wide, but I was significantly below the low end of normal when first embarking on PMR/pred journey,

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