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Low Pred. or No Pred. ??

Posted , 13 users are following.

Juno-Irl-Dub
Juno-Irl-Dub

Hi,  It is now over two and a half years since my PMR diagnosis and starting  the usual Pred. regime. I am now quite well on 3.0mg. and wondering as follows: 

Is there any evidence that staying on a very dose (eg. 2.5mg.), as opposed to reducing slowly (if possible) to zero, would actually be better?  In other words, could a very low " maintenance" dose stave off a recurrence? Maybe this is a daft question, sorry if it is.  Just thinking . . . . J

0 likes, 17 replies

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  • faye______00403
    faye______00403 Juno-Irl-Dub

    Posted

    Absolutely not a daft question.  I've thought of it myself even though I'm

    no where near being off pred.  I asked my doctor once if he had any

    other patients and he doesnt right now but had one that insisted that

    he would take lmg of pred for the rest of his life....not willing to risk

    a relapse.  I have a high school friend that has been off pred twice

    but had to go back on.  I think I would try the lmg to maybe keep

    relapse from happening.

  • pam7653
    pam7653 Juno-Irl-Dub

    Posted

    I'm starting my 3 Rd year of PMR. I was started on 15mg Pred at first. I gradually came down and one year later was at 0mg. I waited a week and felt the PMR coming back. I was told to start again at 15mg and decline again. Because I could still feel twinges of it in my hips I stayed at 5mg for 6 mos. I had a month of horrible stress and hit a flare in late Oct. I was put on a steroid pack for a week (high dose then each day decline) this lasted 5 days. I then went to 10mg and am currently at 7.5mg until January and then I will drop to 5mg and TRY to drop down from there. I'm staying at that 7.5mg for a few weeks in Dec because I just had 2 surgeries in 3 weeks. I wasn't sure how my body would react. So far so good. Personally if I feel the signs I still have PMR ,I would sit where I am comfortable on my Pred and wait out the storm. Trying to get as low as you can.
    • Juno-Irl-Dub
      Juno-Irl-Dub pam7653

      Posted

      That was a bit of a roller coaster Pam but it seems that you're settling down now which is good. There is a thread here somewhere for those who have reached the dizzying heights(?) of zero but I was out walking the dog this afternoon and just thought - is it the best idea?  Good luck to you with your efforts Pam.   J
  • EileenH
    EileenH Juno-Irl-Dub

    Posted

    I've been down to 4mg, I feel better at 5mg - and that is where I'm staying for the winter after discussing it with my (rheumatology trained) GP. It's a low dose and I have no noticeable side effects - and my quality of life here is good. That more important to me than what might perhaps happen in 15 years time. I might be dead by then.

    I know there are rheumatologists who feel that remaining at a very low dose and not rocking the boat is better than repeatedly attemtping to get lower. I suppose it is different if you elect to use the "Dead slow..." approach and really do listen to your body and as soon as it is obvious this isn't going to work you say, no, not yet. But it does amount to the same thing - can I get lower? No, apparently not - so that's fine where I am.

    I'm not the only one who has reservations about the "Zero pred Club" that is quite a popular concept. In a desperation to be a member, some lose sight of the aim: to have the best quality of life possible. I'd far rather have 20 years of pretty good life than 10 years of really rather painful and immobile existence. I've been through both - 5 years of PMR with no pred, and over 6 years of PMR with pred at various evels of success/comfort.  What I have a present is good - and that is fine.

  • pauline36422
    pauline36422 Juno-Irl-Dub

    Posted

    just wondering. if we stay on the low dose. do we still have to continue

    with calceos  and the like. hate chewing them

    • Anhaga
      Anhaga pauline36422

      Posted

      One thing I've learned on this journey is that with aging many of us have to look after our bones anyway.
    • EileenH
      EileenH pauline36422

      Posted

      A study showed that there appears to still be the potential for bone density loss even at low pred doses such as 5mg. However, that said, I don't see how they can say 100% it is the pred that did it. Yes, the people were taking pred at the time - but there is no way of knowing whether they would have been losing bone density anyway. I took pred for nearly 4 years between dexascans, there was to all intents and purposes no change in my bone density (you couldn't compare the scans directly because they were done on different machines). Obviously it didn't affect me at all - and it was on doses over 10mg and up to 20mg the entire time. It isn't inevitable with pred. Unless a dexascan was done right at the start of pred you can't know whether the person wasn't already developing poorer bone density.

      As Anhaga says, once we are post-menopausal we do need to consider even more what is happening to our bones - and unless we are on a good diet and active there is a risk for us all. If you don't like the sort of calcium supplement you are on - ask to try another. There are a few versions, AdCal is another that comes to mind. The one tablet I don't mind is the calcium one - I think mine taste quite nice but I'm not in the UK so it's no use aying what it is! I do know that it comes in a few difference versions - the next most expensive one is said to be easier to dissolve in your mouth, I can't say I noticed enough difference to justify the copay that applies here so I stick with the cheapest.

    • Juno-Irl-Dub
      Juno-Irl-Dub pauline36422

      Posted

      See Eileen's answer below. As I have OP I would need to watch the vitamin d and calcium anyway - low dose or no dose of Pred.   J
  • suesing
    suesing Juno-Irl-Dub

    Posted

    Hi, I've managed to get down to 3mg of Pred' and am feeling pretty good.  My Rheumy team are great and have said that this is now potentially a difficult time and that getting below 3mg's a day can sometimes spark a flare. I'm taking it really slowly now and am being monitored every 3 months.  They haven't suggested staying on a low dose yet, but we'll just have to see how things go. 
    • EileenH
      EileenH suesing

      Posted

      You obviously have a really good rheumy team - hope they stick around!

      I suppose you just have to keep trying a VERY small reduction at a time until it works or you would never know if you could top taking it. A friend on another forum had a really good period last year, she woke up one morning and felt "different" and crept down to zero with no problems. Like me she has rather mixed feelings about making such a big thing about the "success" of getting to zero and didn't say anything for months. Then it came back - and she was back to 10mg. She is now down to 7.5mg again and says she feels so well it is tempting to stick there. 

      She isn't the first person I've come across who got to zero for a few months and the PMR came back and it feels to me that it confirms my suspicion that the activity of the underlying autoimmune disorder cycles - if it is a slow cycle and the low point happens to coincide with us trying a reduction we will get lower or even off pred altogether - only to have to go back up to feel better as it wakes up again. That said, lots of people DO manage to get off pred but patience is a great gift in PMR!

    • Juno-Irl-Dub
      Juno-Irl-Dub EileenH

      Posted

      " She isn't the first person I've come across who got to zero for a few months and the PMR came back . . ."   

      What I'm wondering is - IF your friend had stayed on a' maintenance' dose of, eg. 2.0mg.or 1.5mg., is there any evidence that doing this could have prevented the return of her PMR?  Or, does this condition always exist in cycles - short cycle for your pal, and others much longer interval between stopping Pred. and recurrence?  

      Because I also have OP I'd like to reduce further if I could. BUT if, in managing to stop Pred.quite comfortably, I am MORE likely to have a relapse ( -and have to restart  high doses again and. thereby increase my total Pred. intake), is it worth it?   

      Lord, this is even boring me, please don't feel you have to answer!!  J

    • Juno-Irl-Dub
      Juno-Irl-Dub suesing

      Posted

      Mmmm . .    thanks for that. Have to see my doc. in Jan. and see what she suggests.  I'm guessing it'll be ' off with the Pred.'  !!  Good luck with your efforts.   J
    • EileenH
      EileenH Juno-Irl-Dub

      Posted

      No - not boring and a perfectly reasonable thought. I've no idea to be honest. The US review article I mention quite often reckoned about a quarter get off pred in under 2 years - and they are more likely to relapse than other groups who take longer. About half, they say, get off pred in up to 4 to 6 years and the standard German rheumatology textbook says PMR lasts an average of 5 years, much the same. Which all seems to suggest that the usual length of PMR really is about 5 years (plus or minus). And which makes me wonder why on another forum there is a patient who is on 2mg after 18 months whose rheumy is concerned and wants them to take methotrexate to get off the 2mg since PMR should be over in 18 months! You can imagine what I said!

      But I suppose you have to try reducing - and remain at each step of that final few mgs for a long time to be sure things aren't brewing unseen. The people who have struggled to get off that last bit of pred - not always because of return of particularly PMR symptoms - seem more likely to get another dose soon. The others I know who have had PMR twice went for about 4 or 5 years before it reappeared. I doubt you can predict what will happen either way. But it does pay to be very aware - and if there are any signs to pounce and hit it hard.

    • Juno-Irl-Dub
      Juno-Irl-Dub EileenH

      Posted

      Thanks for that Eileen. Now go and have a stiff drink !!  Well deserved. J
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