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PMR, PREDNISNE

Posted , 8 users are following.

kathy67492
kathy67492

I am travelling and I think I overdid the activity the last few days.

I am, again, up in the night...pain and achiness all over, from my neck down! Is ths from the PMR, or is it something else? I am 19 months into the PMR, taking 7-1/2m prednisone. Should I go to 8m for a day or two to recover?

1 like, 17 replies

17 Replies

  • karen28161
    karen28161 kathy67492

    Posted

    Kathy sorry you are in so much pain on your travels .......my rumy nurse always tells me to up my Prednisalone when we go to the USA ,because it's quiet a bit more active than I am used to when being at home in England ,and she says it is such a shame too be in pain on your holidays ,I usually up pred by 1-2 mg and it really helps xx
    • kathy67492
      kathy67492 karen28161

      Posted

      Sorry...was "kicked out" of my ipad for a minute. I should have upped my dose a few days ago...always afraid to do that, so focused on tapering.

      Thank you for your feedback...really appreciate hearing what others are doing to cope.

  • christine_fay
    christine_fay kathy67492

    Posted

    I also have found that increasing the dose when extra exertion/ activity is on the cards helps prevent going backwards. Each time is less than previous as I am reducing a lot now.... Was down to six but upped to 10 when a big job came in that I could not afford to pass. Back down to eight by reducing one a day. Have done this before three times and it worked was able to get back to near normal dose within a week. It is very obvious when you reach your control level because you wake up in pain if you go below. Also I notice that the. Pain centres that cause the most trouble have gradually moved downwards from shoulders.. To hips to thighs and to legs now. Although all areas are painful if I go below the right dose the worst pains are going lower. I have found great relief from toe pain by wearing little silicone toe caps... Apparently I have been scrunching my toes with the pain and tension making callouses form on the tips... These have now all gone after ten weeks... What a relief !
    • kathy67492
      kathy67492 christine_fay

      Posted

      Very helpful information. I can't remember having the all over pain, usually it is in the PMR spots. I was really thinking something else was going on

      becaude of the all-over pain. Sorry you suffer in the same way sometimes!

      Great news that the toe pain is gone. Thank you.

  • margaret22251
    margaret22251 kathy67492

    Posted

    i too am on holiday, and at this moment i an on 8mg pred, hopefully going to 7.5mg, but for the last 8 weeks my feet are killing me, swollen and hot, but had them xrayed at the hospital so waitng the outcome of that, in the meantime i am making the most of it, i can walk even if it is shuffling and i know i am very lucky compared to some people.

    Have a good day. Magsbiggrin

    • kathy67492
      kathy67492 margaret22251

      Posted

      I can empathize with having your feet xrayed...the pain is that bad, and that weird! It certainly feels like there is real damage going on. It is also true that other people are suffering a lot worse...that is why this forum is so great...keeps things in persoective, but also allows you yo question your own avhes and pains. Thank you.

       

  • MrsO-UK_Surrey
    MrsO-UK_Surrey kathy67492

    Posted

    Hi Kathy, definitely sounds like the inflammation is stirring up, obviously, as you already suspect, caused by overdoing your activites.  Our muscles can be weakened whilst suffering from PMR and can easily rebel when asked to do more than they are capable of at this time.

    ​Also, you are around a dose where your adrenal glands will be trying to get up to speed with their natural cortisol production after having been suppressed by the artificial steroid, and they need all the help they can get to recover, which means taking things even more slowly than before in the reduction routine.  As you reduce the doses at around this level, you can have a shortfall of cortisol in the tank until those adrenals catch up, so definitely not a time to be overdoing things but, if you must, then you are going to need extra Pred to allow you to do so.  Lots of good luck wishes and enjoy the rest of your travels.

    ​If it were me, I would definitely increase the dose now by at least a couple of mgs to try and avoid a full-blown flare which would necessitate returning to an even higher dose.....and not least to avoid upsetting the remainder of your holiday.  Good luck. 

    • kathy67492
      kathy67492 MrsO-UK_Surrey

      Posted

      Good advice. I didnt consider that I coyld flare by overdoing it...I have only flared when trying to reduce. I will go to 9 today...then reduce by 1m a day? It is so strange that the pain can get so bad at night and then, after tossing and turning all night, feels better in the a.m. Such valuable information on this forum...can't imagine muddling thru without it!

      Thank you!

       

    • EileenH
      EileenH kathy67492

      Posted

      Flares can also happen if you do more than usual at the same dose - it's always a case of trying to balance the dose for the amount you need to do. Some people who work might get away with a lower dose if they don't work for example.

      You didn't try reducing at about the same time as you went away did you?

    • kathy67492
      kathy67492 EileenH

      Posted

      No, I had tried a reduction to 7mg from 7-1/2, but abandoned it after a week because of pain. I have been at 7-1/2 for 8 weeks now....afraid to even think of tapering right now until I am "stabilized".  If the one dose of 9mg help then I guess I should go back to 8mg tomorrow...then to 7-1/2 going forward.

      Thanks!

    • EileenH
      EileenH kathy67492

      Posted

      You are NOT tapering relentlessly to zero remember - you are looking for the lowest dose that gives you the same level of relief as you achieved with your starting dose. If you felt well at 8mg and less well at 7.5mg then you need to stick at 8mg for a while. As long as the underlying autoimmune disorder that is the real cause of your PMR is still active you will need some pred since all the pred is doing is managing the symptoms. It has no effect on the autoimmune illness. No-one can say in advance how much you will need, everyone is different and even one person's needs may vary from time to time. That's why you reduce slowly - to find the dose that is right for you. You will be able to reduce when the underlying disease is quiet - you can't force it and there is nothing that will make a deal of difference. 

       

    • kathy67492
      kathy67492 EileenH

      Posted

      Dear Eileen! I have read your wise words so many times about tapering the Prednisone...I should tatoo it on my hand!😊 I really felt better on 8 mg anyway, but I get on this "quest" to reduce the dosage. If, in fact, I do have TA, will it take longer to go into remission?

       

    • EileenH
      EileenH kathy67492

      Posted

      " If, in fact, I do have TA..."

      I don't quite get what you mean. You said before you have PMR - PMR is really a set of symptoms and so is GCA (I assume that is what you meant by TA?). If the symptoms you had originally were PMR it means you do not necessarily have GCA, the same as having GCA doesn't mean you will have PMR symptoms. In some senses they are the same illness, just affecting different areas of the body. GCA is mainly larger arteries, PMR seems to affect the tiny arteries, the microcirculation as it is called. 

      You can have GCA without it ever affecting the temporal artery - which is why the TAB is really fairly meaningless. If it is "positive" it DOES mean 100% you have GCA but it doesn't show WHERE you have it, it can be all over the place in arteries with an elastic component to its wall. The reason for the very high dose in GCA is to try to reduce as quickly as possible any inflammation and reduced blood flow to the optic nerve which is what causes the risk of blindness. Rheumatologists I have spoken to are of the opinion that GCA anywhere else can happily be managed with 20mg over a longer period. When the eyes are affected - you need a high dose immediately because of the risk of irreversible blindness. The inflammation in PMR is a longterm risk - but it isn't as urgent a matter to get it under control and a lower dose of pred reduces the risk of side effects.

      But whichever you have, the underlying autoimmune cause will burn out and go into remission when it wants, nothing you can do can hurry that up. The pred does nothing about that, it manages the inflammation which causes swelling of the vessel walls and reduces blood flow because the lumen (the open centre of a blood vessel) is narrowed, just like waterpipes get furred up in hard water areas. 

      What you are doing with reducing the dose you are on is not with the aim of getting to zero, you are looking for the LOWEST dose that works. It may be 13mg, it may be 3mg, or it may be somewhere in between. But there is no point reducing the dose below that level and going back to being in pain - you might just as well not have bothered starting the process in the first place. You need the dose you need - to quote my GP - and you have to accept at any point that that is the dose for now. I'm currently on 4mg, trying to get to 3mg. I've got to 3mg one day, 4mg the next. I'm sure that is as far as I'm going to manage (again) as I have tiny niggles in the early morning which improve within an hour or two. If they get any worse than they are today I shall go back to 4mg. And I will try in a few months to get to 3mg again. But if I have to stay here for life I will.

  • Jaydy
    Jaydy kathy67492

    Posted

    Hello Kathy. I think that I have fallen into the same trap! Have been seriously overdoing things at the same time as reducing dosage on doctors advice, and now feel quite ill and painful. I wonder if it is OK to take extra preds later in the day having taken 3.5mg first thing in the morning? Pain killers do not help do they. Hope you are feeling better.
    • EileenH
      EileenH Jaydy

      Posted

      If you are going to reduce according to a schedule then it is always a good idea to lie low the week or so around reduction time - that gives your body a chance to adjust to the change better. Reducing the dose at the same time you try to do MORE really isn't a recipe for success!
    • kathy67492
      kathy67492 Jaydy

      Posted

      I have never tried pain killers with the PMR...my rheumy says Tylenol is the only drug I can take, besides vitamins...calcium, vit D, etc. I am doing nothing today, see if I recover. Take care.
    • EileenH
      EileenH Jaydy

      Posted

      No reason why not once - but sticking it out to next day isn't that bad is it? Or do you find your usual dose doesn't last all day? Some patients split their total dose, maybe 2/3 in the morning and the rest in the evening, and find it doesn't affect their sleep and they have no morning stiffness and pain.
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