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What do i do??

Posted , 8 users are following.

margaret_84727
margaret_84727

I am at the moment on 3mg of pred daily, having come down maybe too quickly from 5mg (gradually over a two month period). I am now having p.m.r. symptoms or steroid withdrawal...and have done for the last month. I am in a quandary as to whether to carry on with 3mg per day and hope it sorts itself out, or whether to increase the dose - and if so, by how much. Do I go straight back to 5 mg or go back to 4mg and see if that works. I realise that I will have to come down slower in the future....I was in a hurry to reduce due to diabetes.

many thanks for any advice, Margaret.

 

0 likes, 14 replies

14 Replies

  • nick67069
    nick67069 margaret_84727

    Posted

    If you have gone too far, as you describe, what I usually do is go for base dose +3-4mg for few days to clear the inflammation and then go back to the last comfortable dose, which for you is 4 -5 mg... Remember, this is not  a  race and going too far too soon will only result in flare. You need what you need.  Steroid withdrawal should not last more then a week and it should get better over time. If not, then the dose is too low and will get worse over time. The sooner you take care of it, the better.
  • EileenH
    EileenH margaret_84727

    Posted

    If you have had symptoms for the last month it is very unlikely to be withdrawal. It starts immediately you change the dose and then slowly improves over the following week or two. Flares (because the pred dose is no longer enough) take a while to appear and mostly then tend to get worse over time.

    It doesn't matter HOW slowly you reduce, nothing will get you past the point you are looking for: the lowest dose that manages your symptoms as well as the starting dose did. This may get lower as time goes on but more often that not it stabilises at a dose for some time. If a 1/2mg drop at this stage causes no discomfort it is a good idea to wait for a couple of months before trying the next - the lower you go, the nearer you are likely to be to that HolyGrail dose because it is rarely zero immediately. 

    Below 5mg you have another conundrum: waiting for your adrenal glands to wake up and reliably top up the dose of pred to the total amount of corticosteroid your body needs to function well. Are you SURE this is PMR-type symptoms? 

    Either way - you probably need to go back to 5mg for a few days to sort it out and maybe then try 4mg for a couple of months. As nick says - it isn't a race. Never has been and never will be. If you try to force a reduction you will eventually end up in the same state you were at the start and having to start over again. What a waste of time and all that effort!

  • ptolemy
    ptolemy margaret_84727

    Posted

    I have learnt from bitter experience that hoping things will get better is a bad choice. Just go back to where you felt comfortable, give it a few weeks and when you feel good try again, perhaps more slowly!
  • kathy61958
    kathy61958 margaret_84727

    Posted

    Oh no😔

     My personal thing is this...If you’re symptoms have returned, your dose is too low. You shouldn’t be in pain. When I start hurting, I go back up the last dose I was comfortable at.  I give that a month and then try again.

      Don’t let the PMR symptoms hover over you.??

  • margaret_84727
    margaret_84727

    Posted

    Thank you so much for your advice, it is really appreciated. I have put the dose back up to five and hubby as read site now and we DID go down too quickly. I was in such a hurry to get off the steroids, with my husband egging me on, to come off steroids due to diabetes....We did go down 1mg a fortnight and didn't think of it as a percentage. I am sure it is pmr Eileen as the old symptoms have reappeared - difficulty getting on and off loo and chairs, holding saucepans, kettles etc as no strength in hands and thigh muscles hurt whilst walking.

    I hope going back up to 5 and starting a slower reduction puts it right!!

    By the way, does anyone else find the tablets difficult to actually get out of their individual wrappers??? My hands do, and the seroxat i'm on is even worse!!!! I have been shown by hub to use a knife today which is slightly easier...!!! just an observation...!

    I feel a bit of a failure today, but I WILL succeed!!!!!!!!!!!!!!!!!!!!!!

    • nick67069
      nick67069 margaret_84727

      Posted

      margaret, having trouble with pills is just another symptom of PMR, due to weakness in hands/finger muscles. Also another comment on your reduction, at this level 10% of the dose is 0.5mg, so what I do is cut the 1mg pills into 0.5mg for reduction. So instead of going from 5 to 4,  you should try 5 -->4.5 reduction using DSNS (gradual) method.

    • EileenH
      EileenH margaret_84727

      Posted

      I don't know how to emphasise this enough Margaret - it doesn't matter HOW slowly you reduce, if the underlying cause of the PMR is still active you will not get below the dose that manages the inflammation. That is what you are looking for - not heading relentlessly to zero. There is no "I will succeed" about it - if willpower were all we needed none of us would be here. PMR calls the shots from start to finish and we have to learn to live with it and work around it.

      Reading this post on another forum may help get your head around it:

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

      Yes, I KNOW you are desperate to get off pred but you have a choice, take enough pred to manage the symptoms or not take enough and get worse than you are at present. There is no halfway house - if there is inflammation left over it will steadily build up to where you are where you were originally. 

      To help the diabetes problem you could cut your carbs more - that also helps.

      If you can't get your tablets out of the packs, speak to the pharmacist who will put then into easier to open bottles. But as nick says - the problems with getting the pills out is typical of PMR affecting your hands. 

    • Anhaga
      Anhaga margaret_84727

      Posted

      The only success we can hope to achieve is to find the right dose of pred to keep us as well as we can be until the disease chooses it's own time to go into remission.  i'm in a bit of the same boat as you, although I really was not rushing anything.  it took me a year to recover to my old best dose after a minor flare last year.  I stayed at that dose for weeks and weeks.  Then I tried the next dose down just one day a week.   Not even using DSNS.  After about three weeks of that I realized I was flaring again!  I was appalled.  But it just tells me that my lowest best dose really is just barely my lowest best dose and maybe instead of one day a week with a .5 reduction I should be having one day a week with a .5 increase?  Hovering between 1.5 and 2 instead of trying 1 and 1.5?  

      As for the pills, do you have to get them in a format where each is individually sealed?  Mine come in a container having been counted and packaged in the container by the dispensing pharmacist.  I even ask for an ordinary cap, not a childproof one, as I find the latter nearly impossible to remove. If I want them individually sealed, like I think some people do espcially if they are on multiple meds and get them packaged that way voluntarily for convenience, I'd have to pay for it.  

    • margaret_84727
      margaret_84727 Anhaga

      Posted

      Hi Anhaga, yes, my tablets all come individually sealed....it can be a right pain, but have roped in hubby to help!!! 3 different kinds of tablets per day, all individual!....so maybe 8 of these things to undo each day!! Never mind, the 5 dose seems better!
  • margaret_84727
    margaret_84727

    Posted

    i realise you are right, Eileen...and have lost two and a half stone from cutting carbs. I am on 5 today and its better, not yet perfect, but will give it a few days to see if I can be back to ideal!!! I think perhaps the colder weather makes you stiffer, too.
    • EileenH
      EileenH margaret_84727

      Posted

      Weather can have a great effect - and some rheumies actually suggest not reducing your dose during the winter!
  • margaret_84727
    margaret_84727

    Posted

    Thank you for your replies. I am now back on 5mg and find I can move, walk and swim again, as well as doing my usual day to day things. I have had my last blood test result and find the HbAc diabetes result, having lost 3 stone,  is now in the normal range, not diabetic or even pre-diabetic....!!!! I am seeing gp on 25th oct...would like to not start reducing till I come back off holiday at end of november, an adventure holiday in Costa Rica that I won (hub is holidaying without me at home, looking after dog) or do you think I ought to start reducing straightaway??? Hub wanted me to reduce after two days on 5 but really can't bear the thought...He's got the results of biopsies etc on Thursday so will know then perhaps whether I can go to Costa Rica or not, obviously his results/treatment come first. it just seems all a bit on top of me at present, though am trying to remain positive, with help of diazepam and paroxeteine!!!!

    • EileenH
      EileenH margaret_84727

      Posted

      That's better!! No - I wouldn't be up for reducing again until after your jolly - lucky you, can I come too? You need to be able to enjoy it and you really do NEED it. So I hope you do get to go.

      5mg is a really low dose - less than your body requires to function properly and so it will still top it up. so if you reduce the pred, your body will add more cortisol. Good doctors stop worrying at this sort of level and you could stick there for a long time without any problems. And when you do start to taper again - 1/2mg at a time and slowly - give it plenty of time in between to be sure it is still enough.

  • margaret_84727
    margaret_84727

    Posted

    Thank you soooo much Eileen! i needed the reassurance!

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