How can I tell if PMR has abated
Posted , 10 users are following.
Can anyone who has been through the whole PMR journey tell me how they would describe how they feel/know that the PMR has gone and the pain left is just withdrawal from prednisone as the body adjusts. I was wondering about muscle strength and if that is an indicator ( I have practically none and even lifting a 2 litre milk bottle seems a chore) Also I noticed you mentioned fatigue - is that PMR or a prednisone side effect? I certainly have that if I do the least little thing. I am down to 9mg and the pain isn't too bad - little niggly bits here and there. It seems we can't rely on the blood tests ESR & CRP as I've read other have normal tests but still have PMR - Are there any other indicators one way or another as I don't want to do any more reductions if the underlying syndrome is still there, however I do want to get off prednisone as soon as I can if the PMR is no longer the issue if you can understand my ramblings.
1 like, 13 replies
MrsO-UK_Surrey denise76179
Posted
Both the inflammation of PMR and the steroids can weaken muscle strength and certainly at the 9mg dose I still had difficulty in raising my arms totally upright. What I found helped me enormously was to join a Tai Chi Class and very slowly with each session find that my arms were improving. I also joined a Nordic Walking class which proved to be great exercise for helping to strengthen the muscles of both my arms and my legs. Some people find that swimming can also help.
I was someone whose blood test markers always matched my symptoms so they proved a very useful guide for both myself and my rheumy throughout my treatment.
You haven't said how long you have been on treatment/when diagnosed, but as you are on 9mg at present, it is quite normal to still feel some fatigue. Once you get to 5mg and below, the fatigue should ease. If you take the reductions very slowly and taper in small amounts you should be able to see at what point, if any, the inflammation might still be lurking, and can quickly return to the previous comfortable dose to make sure it doesn't run away with itself. There is no clear indicator to give you as to when PMR has gone into remission, apart from saying that you will just know!
bob73443 denise76179
Posted
I do have a followup question based on Denise's question....
I know that prednisone is not "curing" anything, but is only addressing the inflammatory conditions caused by the PMR. However, I've always wondered whether NOT taking prednisone -- or at least taking too little can extent the duration of the "illness."
In other words, I wonder if I (we) ought to bear a little (or a lot) of pain just to get off the prednisone -- OR are we actually causing a delay in the remission of the PMR?
Thanks,
MrsO-UK_Surrey bob73443
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EileenH bob73443
Posted
I don't see any benefit in suffering just to get off pred. What is certain is that rampant uncontrolled inflammation through the body is a risk factor for some cancers (confirmed to me by a top cancer researcher) and also causes long term damage to the cardiovascular system. I now have atrial fibrillation, the (unrecognised) symptoms started soon after the PMR. The cardiologist here is fairly confident that it was the underlying autoimmune part of the PMR that did the damage to the sinus node. Had I been on pred from the start would that damage not have happened? There is no way of knowing - but everyone with GCA, at least, is at a higher risk of conditions developing later as a result of the damage done to arteries during the illness.
I can't see how it would delay the autoimmune disorder going into remission - but not taking pred is very likely contributing to long term problems. That has to be put against the damage pred can do, most of which can be monitored. For example, pred can cause high BP, GCA (or severe PMR) narrows the arteries - leading to increased BP. It is likely my chest arteries were inflamed, causing raised pressure in the heart - and I do have damage to the heart wall as a result. I had my arm BP checked regularly - it was never concerningly high.
Light MrsO-UK_Surrey
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hope4cure denise76179
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EileenH hope4cure
Posted
This is what the NIH says:
"Corticosteroids also have major effects on the liver, particularly when given long-term and in higher than physiologic doses. Glucocorticoid use can result in hepatic enlargement and steatosis or glycogenosis. Corticosteroids can trigger or worsen nonalcoholic steatohepatitis. Long-term use can also exacerbate chronic viral hepatitis. Importantly, treatment with corticosteroids followed by withdrawal or pulse therapy can cause reactivation of hepatitis B and worsening or de novo induction of autoimmune hepatitis, both of which can be fatal. Finally, high doses of intravenous corticosteroids, largely methylprednisolone, have been associated with acute liver injury which can result in acute liver failure and death. Thus, the hepatic complications of corticosteroids usually represent the worsening or triggering of an underlying liver disease and rarely are the result of drug hepatotoxicity."
The usual dose in PMR is below 10mg, approximately the equivalent amount of cortisol the body secretes itself under normal conditions. When pred is present in the blood the body doesn't produce cortisol - it isn't doubled up.
In GCA, without pred the patient is at risk of irreversable blindness. The doses are higher but mostly not required at a high level for more than several months.
Although other drugs have been tried in PMR there is nothing else that works reliably. Good effects allowing reduction of the pred dose have been found with leflunomide, one of the RA drugs, but it too has potentially far more devastating side effects. Some have been tried and make things worse. Others are used in an attempt to reduce the dose of pred - the evidence so far is that they are unreliable, do not replace pred, merely reduce the dose for a short time and by no means for everybody, just adding to the possible side effects. The bottom line is there are NOT "many other drugs that can help".
It is not helpful to disseminate such inaccurate information which could result in someone refusing pred whilst searching for something that patently does not exist at present and, as a result, losing their sight.
pebbles01 EileenH
Posted
Just wanted to say your are a star for giving us all such wonderful informative information. You have helped me understand this condiition so much better.
I am now going to make sure that I take more rest between working and doing other usual daily activities. If the weakness went I could cope better with the other symptoms.
Thank you.
bob73443 EileenH
Posted
Well, this comment certainly caught my attention -- especially the comment that a 10 MG dosage of pred is the equivalent of what the adrenals produce, and that the adrenals will not add to the 10 MG pred because they only produce when needed -- and therefore we should not be too concerned with liver damage.
On one hand, this made me feel better about my 2 glasses of wine I have with dinner (never more, sometimes less). On the other hand, if a 10 MG dosage of pred is the same as what's produced by the adrenals, then why can't I stop taking the prednisone when I reach the 10 MG dosage and allow the adrenals to start working?
EileenH bob73443
Posted
It is perfectly possible I imagine that the anti-inflammation effect in PMR all happens above 7.5mg (a more accurate figure it is felt) and the problems we have reducing to zero are all concerned with steroid withdrawal. Certainly, many people find getting below 10mg and 7.5mg difficult, with symptoms returning. Do we keep having to go back to 10mg for that reason? The Bristol group keep patients at 10mg for a year - and then reduce fairly steadily to zero. They find that reduces the rate of flares to 1 in 5 instead of 3 in 5 using other reduction schemes. Combine that concept with my very very slow reduction below 10mg and would that reduce flares even further? By that I mean are the problems many experience BELOW 10mg actually almost all steroid withdrawal because the size of the drops are too big? One big PMR/GCA cheese in the UK says it is possible to use steroid injections to bridge the steroid withdrawal problems found in reducing - that, you would assume, would smoothe the downward trend even more than I can do with 1/2 or 1mg drops over 3 or 4 weeks. Each change from old to new dose is a step that the body may object to if it is very sensitive.
A few experts wonder if there is actually an adrenal (or endocrine control) problem in PMR - a few patients need to remain on a very low dose for a very long time, sometimes even for life. As we age the set-up works less well (like lots of bits of the body) and by the time you get to upper 70s about half of people have PMR symptoms. If the autoimmune disorder is attacking adrenal function in some way that could account for that. Autoimmune disorders came in two versions: specific organ disorders like Type 1 diabetes or Graves disease, and generalised disorders that attack several organs or systems. Does PMR have that sort of effect? One difference between GCA and PMR is that the Mayo clinic for example talks about the possibility of a "cure" in GCA whereas in PMR it is a much more long drawn out performance.
People who struggle to get below 10mg and develop flares could of course just be showing that the autoimmune disorder is still active enough to cause a significant amount of inflammation. An intriguing thought Bob - one that hadn't occured to me before.
EileenH denise76179
Posted
It is less a loss of muscle strength but more that the muscles get tired very fast. I couldn't lift anything either - especially something my hand was stretched to hold. Even a tea mug needed 2 hands for safety.
I can only give a very useless reply - I feel different. LizzieEllen says the same - she woke up one morning and simply didn't hurt and had energy.
At bottom we all want to get off pred - even I do although I wouldn't be heartbroken if I was told I needed it for life like Nefret. If it gives us a better quality of life that is fine and she has adrenal problems so definitely needs it.
The whole point of the very slow reduction I propose over and over again is that it makes it easier to distinguish between a return of PMR pain because the autoimmune bit is still active and the very similar pain that is a result of dropping the pred dose too much at a time. If you are only reducing the dose by 1/2mg over a couple of weeks it is almost impossible for pain to be steroid withdrawal. It is only by reducing your pred dose that you can establish that the PMR is gone. The belief on the part of many doctors that "PMR burns out in a couple of years" leads them to force reductions and this then confuses the issue because some people are VERY sensitive to the pred reduction, they have severe pain and in panic the dose is put back up. PMR doesn't necessarily burn out in a couple of years - I had had it for a good 5 years before I ever took a dose of pred. It hadn't burnt out in that time, not even really faded noticeably. No one knows whether the autoimmune process is steady or whether it waxes and wanes - if it waxes and wanes then you might get off pred and then have a relapse soon after. There is no way to tell until someone develops are more specific test for the underlying illness. ESR is so non-specific it is possibly worse than useless - it rises in a whole range of situations and also confuses the issue. I have normal blood results, always have had, and that was why it took so long to diagnose PMR - too many doctors are fixated on the lab results.
All you are doing with the pred is controlling the symptoms to allow you a decent quality of life - and if at any point the side-effects are worse than not taking pred you have to consider stopping it. I had awful problems with one form of pred but there was no real choice, it was the only form normally available here. In retrospect I should have made a bigger fuss but I was new to the system here. For some reason it didn't control the inflammation but there were other things going on too - it could have been that version of pred but I'd also had problems just before with the sort I'd had in the UK so we'll never know. It's all OK now.
However, I think it is fair to say that if you are as fatigued as you seem to be the underlying autoimmune problem is still there. And you probably need to consider resting more. It is amazing the difference that arranging a nap in the afternoon makes to the rest of the day - allowing a more normal evening and even a better night's sleep
denise76179 EileenH
Posted
Love to all
EileenH denise76179
Posted
After 5 years on pred and the gentle deflating of the balloon as I go down the pred I now have wrinkles - which weren't there before! But I probably weigh less than I have for about 7 years - and I've got older in the meantime :-(
Keep on with your reduction - but if you have any wobbles then stop and wait and see. As I keep saying, the Bristol group does 6 weeks each of 15 and 12.5mg and then a year of 10mg. You would be in the first third of that year if you were there. I'm not sure that is essential - but they find it helps long term to reduce flares. Don't force it to get lower - just see where you are. But spending a bit longer at each new dose before the next reduction might not hurt.