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Eileen, mrs O et al. help needed!

Posted , 10 users are following.

beev
beev

Hello all.

I've been having stiff shoulders, top of arms especially first thing and at night. Also a little bit top of back of thighs, now today stiff neck. Esr has stayed at 25 since December. Symptoms really since then but been ignoring them! GP said having symptoms wouldn't prolong the problem and to stay on same dose. I'm not sure she's right. Need your advice please.

Currently on 2.5mg every other day. I did increase slightly in December. It's the first time since my reductions that I have definite symptoms. I can bear the discomfort and really don't want to increase especially as daughters wedding in June so don't want to put on weight! But will do as I'm told!

! Thanks, Beev

1 like, 21 replies

21 Replies

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  • pat38625
    pat38625 beev

    Posted

    Hi, I am relatively new to PMR, November last, so I am not experienced as the others, but sorry to hear you are having a time of it.  I am sure the other ladies will be in touch soon.  In the meantime take it easy.  Pat
  • MrsO-UK_Surrey
    MrsO-UK_Surrey beev

    Posted

    Hmm, Beev, putting up with increased symptoms since December is plenty of time for having tested the water as to whether this is just a passing phase or increased inflammation.  The effects from taking 2.5mg every other day may not be lasting long enough in your body to keep your symptoms under control. The difficulty for you, of course, is being unable to take the uncoated tablets in smaller daily doses to keep you covered for longer.

    I think you will need to increase your days on 2.5 for a little while just to see whether you feel any improvement - that would be better than possibly taking the risk of leaving it much longer and then having to go up even higher.

  • EileenH
    EileenH beev

    Posted

    If this is normal sort of "daughter's wedding" then I imagine you are all majorly stressed out? YOu know PMR and stress never mix well.

    If 2.5 on alternate days isn't enough then you are running the risk of a flare growing between now and June. A wedding with PMR is NO fun I can assure you - I was at my worst when my daughter got married, even had to use crutches. 

    If you're worried about weight gain a few months of being REALLY good on a low carb diet will probably achieve the desired effect - I've lost 17kg by that approach.

  • beev
    beev

    Posted

    Thank-you Mrs O and Eileen. I have been out all day and this site wouldn't work on my phone.

    The wedding stress is nothing compared to some of the other stresses in my life, which I won't go into here as it's a public forum!

    So, can you explain this to me please - I know I should probably know already! If I don't reduce the inflammation with pred, does that mean it won't go away on its own??

    My ESR seems to be stable since November/December at 25 (which is higher than it usually is around high teens) so it's not spiralling. I see how it could though. My stiffness is really mainly early mornings - only a bit during the day.

    My GP seemed to think I should monitor it clinically according to symptoms but that it was ok to ride it out and that the fact inflammation was there, that in itself wouldn't affect the course of the disease. However, I believe you 2 know better.

    Also, what dose should I go to if I do increase?

    Thanks

    Beev

    • MrsO-UK_Surrey
      MrsO-UK_Surrey beev

      Posted

      Beev

      "If I don't reduce the inflammation with pred, does that mean it won't go away on its own??"

      If the inflammation is due to PMR, then steroids are the only treatment that controls that inflammation, and the dose needs to be high enough to cope with the level of inflammation circulating at any particular time. Failure to do that  may result in even higher inflammation leaving you at risk of not only PMR but other health problems as well.

      As to what dose you should go to if you increase, again that's difficult when you're on such a lose dose but can only take the coated pills. You could perhaps try adding in another couple of days of the  week at the 2.5 dose and see if that makes a difference.

      You haven't by any chance been doing anything more strenuous than usual in the last couple of months have you that could have caused your present problems?  Now that you mention suffering stress, that could be the culpril.  PMR loves stress - what a shame having got so well and low on the steroids that this should happen now.  Do take care, Beev.

       

  • beev
    beev

    Posted

    Oh and I nearly forgot - my GP looked into the Lodotra and it appears the 1mg tablets are not coated, just slow release. She was happy for me to try them or soluble pred they give to children but she doubted they would be any better for my stomach than the normal Pred 1mg.

    Beev

    • EileenH
      EileenH beev

      Posted

      Sometimes I despair! Lodotra is not slow or sustained release by which I assume she means it is released steadily over a long period - it is delayed release but all the pred is released at the same time after 4 hours. But after 4 hours it is unlikely to be in the stomach. Whatever.

      Taking the pred or not makes no difference as to whether it will go away in its own time. All the pred does is make things more comfortable in the meantime and probably avoids or reduces the risk of some of the long term effects of uncontrolled inflammation in the body such as vascular disease and cancer. I have had PMR for 10+ years, to my knowledge it has never gone away in that time. 5 years were without pred, it didn't go away, 5 years with pred - it hasn't gone away altogether but now 4mg controls it fine. The difference between one dose and the next higher dose is that the higher dose will be more effective. 

      MrsO is right - try taking 2 days pred, 1 day not rather than just alternate days and see what happens. Another alternative for your doctor to consider might be intramuscular injections which also release over a few weeks. You could have those instead or in addition - they have similar side effects except won't irritate your stomach.

    • ptolemy
      ptolemy beev

      Posted

      I don't know where your GP got that information about Lodotra. Lodotra 5 2 and 1 mg are coated with an advanced patented coating developed by the company Skypharma. This coating is important for these tablets to work. Suggest she phone up the medical department of the drug company that produce Lodotra they are very helpful.
  • Mrs.Mac-Canada
    Mrs.Mac-Canada beev

    Posted

    Hi Beev,

    I also think that it would be reasonable to take the 2.5 mg dose more days a week.  At that dose or even a bit higher it shouldn't affect your weight and like Eileen says, watching your carbs can help. If you are under stress it is my experience that you will be especially sensitive to pred dose and you don't want to be feeling poorly for your daughters wedding.

    My understanding is that it is important to control inflammation not only for pain reduction but because it causes so many other medical problems.  Some say that inflammation is the cause of most diseases in some way.

    i hope you are find the dose that works best for you and are feeling better soon.

    Diana

  • beev
    beev

    Posted

    Hello all. Many thanks for all that. I have started the 2.5, 2.5, 0 regime as suggested and we will see.

    Re the Lodotra. In what way would they be better for my stomach than the 1mg Pred? Is it the Pred being released that irritates the stomach or simply an uncoated tablet passing through and potentially sitting in the stomach for a while??

    Despite the Omeprazole I take, my stomach is always very sensitive and on the edge of a massive explosion of heartburn - only have to eat something more fatty or too much alcohol and off it goes.

    Beev

    • EileenH
      EileenH beev

      Posted

      They would be better in that they would have passed through your stomach before breaking up. Ordinary pred breaks up almost immediately in the stomach, is absorbed there and can irritate the lining.

      If you have such a sensitive stomach you're probably better increasing the number of days you use 2.5mg enteric coated pred.

    • beev
      beev EileenH

      Posted

      Yes, that's what I'm doing from today because of the increased inflammation. I was considering the lodotra as a means of reduction hopefully a few months down the line. Do you think that's worth a go?

      Beev

    • EileenH
      EileenH beev

      Posted

      I'd cross that bridge when I got to it! 2.5mg every couple of days is not a lot - and you can reduce it by going to every 3rd, then 4th and so on until you fond the point that doesn't work. But it is a very low dose - if that keeps you symptom-free I'd accept it.
    • beev
      beev EileenH

      Posted

      I was at that point until this happened. Now I've increased to 2.5, 2.5, 0 on 3 day cycle. Before Xmas I had got to 2.5 , 0, 0, 2.5, 0 on 5 day cycle. That is the point at which the drops are about 20% minimum and I could do with 1mg tablets to slow down that last bit. If I ever get to that point again! 2 years ago I got to just 2.5 every 5th day. This time has been harder.

      Beev

  • jennissw
    jennissw beev

    Posted

    I just want to add that our bodies (before pred) naturally made about 7mg, or so I am informed. Apparently you start to lose pred weight at that level.

    I know a couple of people with PMR who are now on 5 a day and the other 2.5 a day and both lost the pred weight and the buffelo hump went too. 

    For the sake of pain and other possible health issues, why not take 2.5 every day for a while.

    I am on the coated but can tolerate 1mg of the uncoated if taken with plenty of food

    • Mrs.Mac-Canada
      Mrs.Mac-Canada jennissw

      Posted

      I was told it may take up to a year once you get to 5mg or so to see a real difference in weight.  I made my way to 5mg but I didn't lose any weight although I did have surgery on my ankle that stopped me from doing any walking etc. For awhile.  I recently had a flare and had to go to 10mg and instantly gained 3lbs.  how long after getting to the lower doses did the weight come off the people you know. 

      Thanks,  Diana

    • EileenH
      EileenH jennissw

      Posted

      It very much depends on the person - I started to lose weight very very slowly at 15mg when I was switched from one sort of steroid to another. Even now at below 5mg I only lose weight noticeably if I cut carbs a lot, eat carbs and my weight stays the same.

      One lady put on a massive amount of weight (7st), though she did have GCA and needed 60mg pred for a while, and lost none until she came off pred altogether. Then it just melted away. 

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