withdrawal & flares

What a journey we PMR/GCA people have! We become so knowledgeable about our condition and although we almost become experts on how the condition affects us as individuals we are sometimes thrown a 'curve ball' to keep us on our toes! I was managing to reduce with the dead slow & stop method without any major problems until getting to the 7 mg mark. While reducing to 6mg I gradually experienced a return to a range of symptoms ( no pain or stiffness but aching among other things ) which seemed to get worse over a few weeks. Cutting a long story short I had no idea in the end if it was a flare or withdrawal as the symptoms were so similar. I had assumed if it was withdrawal symptoms it would start to get better over 2 weeks but it seemed to be getting worse and I was feeling miserable with daily low grade fevers etc so I thought I was having the start of a flare so went back up to taking 7 mg . I had blood tests to see if the markers had increased but they hadn't so I can only assume it was withdrawal symptoms! When I researched the symptoms of Pred withdrawal on line I realized I was probably having withdrawal symptoms. I will be reducing by 1/2 mg from now on so lesson learned! At least I was aware due to the excellent posts from our regular contributors that at the lower doses smaller reductions are sometimes required. Also I knew that 7 mg can often be a sticking point. I am so pleased to have this forum which has armed me with good information, advice and guidance for nearly a year now. Hope everyone has a lovely weekend .

34 Replies

oldestnewest
  • I'm so happy for you that it is withdrawal and not a relapse.

  • Hi

    I am glad you are ok now I only reduce by .5 we are all different .I personally find I am ok for about 2 weeks after I reduce, then have a few weeks where I have a few

    aches and more stiffness which takes a few weeks to settle .

    As you say we learn a lot from this wonderful site

    I am very grateful to everyone who posts and reply as although I may not post or reply a lot I read post and reply's everyday.

    Best Wishes

    Rose

  • That is interesting that two of you are decreasing by .5mg and having success. At the end of last year I tried to get down from 10mg to 9mg but it wasn't to be...the shoulder and arm pains and stiffness returned with a vengeance. Now I am at the end of 2 weeks at 9.5mg and fingers crossed all is ok. I think I will wait another couple of weeks and then try 9mg. However, both my GP and Rheumatologist say this is a waste of time as there is no significant difference in .5mg. I guess I will only know who is right as and when I reduce further, but in any case I feel happier doing it this way.

    Best wishes to all.

    Zhenya

  • Like Charlie1boy, my experience was also that half mg reductions worked at the lower stages for me whereas 1mg didn't - I definitely noticed a difference. Plus, once I was down to .5mg a day, I was told that such a low dose wouldn't be doing anything so I may as well stop altogether. "Why mess with something that works", I asked myself, and it worked all the way to zero Pred and remission! Good luck with your present plan - hope it continues to go smoothly.

  • Hi,

    0.5mg certainly does make a difference - well it certainly does to me! Been reducing this way since 7mg - now at 1.5mg on slow plan!

    As Charlie Boy says, not medical advice, just personal experience. Incidentally my GP's advice is - "do what your body tells you,"

  • Do the GP and rheumy have PMR? Have they ever tried reducing the dose of pred in their own PMR? When they have they can make such comments.

    This approach

    healthunlocked.com/pmrgcauk...

    not only works because the drop is as small as you can make it but you also only ask your body to cope with it for one day at a time at first before increasing the number of days at the new dose gradually.

    It, or something similar, has worked for a lot of people to get them to their lowest ever doses. And now some rheumatologists are trying it out in a clinical study.

  • I got down to 3 mgs, reduced to 2.5, and 2 weeks later experienced the tingling in the top of my head which, as the day went on, started to feel like an elephant was sitting on my head, and a burning sensation. Just like at diagnosis. This was the first flare I'd had in the 2 years since GCA was diagnosed (negative biopsy, but done too late) at which time I started on 60 mgs pred.

    I ended up in A and E that evening, very certain of what this was, even though ESRs taken were normal. I was told by the junior doctor that it didn't make any sense that a half a mg drop could result in a relapse, and as my ESR was good, I was either mistaken about the head symptoms, or I never had GCA in first place. I was told to revert back to my 3 mgs dose to see what happened. Guess what, pain disappeared, so half mg at such a low dose DOES make a difference. I had a new Rheumy see me shortly after, my regular one being on long term sick leave. He told me I had been misdiagnosed, and I was too young to have it (59) and to come off the 3 mgs I was on immediately. I told him a misdiagnosis was always likely, and agreed the head pain experienced initially, which recurred and made me go to A and E that night, may well have been something else. I also told him that having taken 2 years on a cautiously slow reduction, I was not about to throw it all up at 3 mgs, and risk 2 years of blood, sweat and tears!!

    So, 4 months since the flare and having to revert to 3 mgs, I am now down to 2 mgs, with hitherto no problem, and tomorrow am due to drop to 1.5 mgs. That HALF mg matters. Wish me luck.

  • Good Luck!🍀

  • I wish you the best of luck Greig1. I think it's this sort of personal experience that will eventually provide researchers with 'evidence' to inform future treatment plans given by doctors/rheumys despite it being considered anecdotal evidence. I am optimistic that if enough people share their stories on forums like this then researchers and/or the medical profession will take note.

  • Thanks to everyone who has written about their success with .5 mg reductions. It is reassuring to know I am not alone in finding this works, contrary to my GP's and Rheumy's say-so. I have been down to 9.5 from 10 for a month now and, fingers crossed, all okay. Am off on hols for 3 weeks so won't rock the boat by reducing to 9 until I get back.

  • Oh! These medics are soooo annoying! If it works, there must be a difference. It's great that you are listening to your body and not them!

  • Whoops! Who am I to disagree with your GP and Rheumy, but my experience has been that I definitely noticed the difference of a half mg! I struggled at the 10 to 9 mg mark, and only made it finally by following the half mg route. Am now at 7.5mg, but most definitely at not more than a half at a time.

    Good luck.

    Ps: this is NOT medical advice - just my experience.

  • magmapearl, it isn't at all unusual to hit a bit of a brick wall around the lower doses, mainly due to our adrenal glands needing to 'wake up' and get back to producing sufficient levels of natural steroid (cortisol) after having been suppressed by the artificial steroid, Pred. Until they do that we can have a shortfall in our bodies resulting in increasing pain. My 'brick wall' was at the 5mg stage. Then I came across a gentleman in Sweden on another PMR forum who after continually failing to reduce below 5mg hit on the idea of just reducing on a couple of days of the week at first rather than going straight from one dose to another every day. I followed his suggestion but just in half mg decrements as I'd been having such a roller-coaster ride at this stage that I just felt I needed to do it even more slowly, taking the new dose on the first day followed by the old dose for 6 days, then the new dose for 2 days followed by the old dose for 5 days, etc. This proved successful for me all the way to zero Pred. A few years later, there are now a couple of slight variations on this approach and so many people are finding that they work, and I do hope that you, too, will now be successful having decided on just half mg reductions.

  • My Rheumatologist who participates in PMRGCAUK charity work, has encouraged me to use the "dead slow nearly stop" as she and others call it. I did use it till I got to 7mgs then had a flare, so returned to 8mgs. I am going to try doing 0.5mgs every 3-4 weeks, as I need to reduce the dose for the steroid myopathy. I find my head symptoms, the burning temples and tongues pain, increase with the slightest reduction though. Oh why do I have to be so complicated. 😏

  • Hi. My reductions also go to my head as well as neck and shoulders. I cannot as yet get below 17. Just gone back up to 30 for a week will drop then to 20 where I can manage and try again. Only been doing .5 mg. so frustrating !! Glad you are doing better.

  • Hello, I'm Marion, this is my first post.

    I was diagnosed with GCA & PMR April 2015. I never knew such a condition existed. I felt so isolated, confused and scared. I started on 60 mg of Pred, am down to 12.5 now. I log in every day have followed you all since Dec.

    I echo Magmapearl3's comments, I really do appreciate this forum with all advice, guidance and information.

    Thank you...

    Enjoy a lovely weekend.

    Kind regards

    Marion

  • Hi Marion

    I was diagnosed with PMR early November 2015, started at 15mg and now reducing .5mg every two weeks, currently at 11.5mg.

    Like you, I follow daily all the conversations on here and feel I have learned such a lot 😊 from the obvious experts and from the people who have had the condition much longer that me .

    I will be really careful, cautious and a little apprehensive at certain stages as I reduce, simply because of the warnings from all our friends on here.

    No such warnings from our GP !!!

    Hope all goes well for you and for anyone reading xx

  • Thank you Polylinc.

    Take it easy.

    x

  • I love this forum, I have learned so much from you all. Doctors and Ruemys have said to me that .5s are not worth the effort. I believe they are wrong! I've been on Pred since 2003 and I can assure you that this dosage does make a difference, a big difference, when reducing. Perhaps it would be a good idea if (a) they listened, really listened to their patients and (b) they logged on to this forum.

  • A lovely post, 'Pearl', and so encouraging for others. Thank you.

  • Prednisolone doesn't work for me for more than about 12 hours so I split it into 2 doses, morning and late evening. I am gradually coming down and find even 0.5mg is too much as the pred withdrawal symptoms ( migraine, ringing in ears, pain, fatigue night sweats etc. ) appear and continue after the drop. So I have been coming down .25mg and dropping down about every 7 days, I have come down that way 14mg to 10mg since the new year. It is so different for each individual that it is worth trying different ways to come down to see what works best!!

  • Correction, sorry, coming down since mid December!!

  • Hi Kate

    Who is Pearl ? I feel I may have missed a post today ... Not seen Pearl 🤓

  • Hello Polylinc, I hope Kate doesn't mind me replying on her behalf, but she is, no doubt, referring to magmapearl13, the originator of this thread.

  • Thanks Celtic x

  • Hi - it's magmapearl3 - I just called her 'Pearl' for short

  • Thanks Kate

  • Magmapearl3,

    You are so right! I've tapered down to 2mg Medrol (3 Prednisolone) after 2 1/2 years.

    I have a new problem, chronic diarrhea for 4 weeks. Now all of a sudden my PMR pain has shot back up to where it was 2 1/2 years ago. What the heck happened???

    Is the pain due to the chronic diarrhea? Or possibly because I haven't taken Meloxicam which I was taking every other day? I haven't taken it because of the diarrhea, but I also haven't felt I needed it.

    I'm going in for colonoscopy tomorrow and am wondering about increasing the dose to 8mg until tomorrow.

    Any thoughts or suggestions??

  • tiasbear, it's quite possible that the stress to your body of the chronic diarrhea has caused increasing PMR inflammation. If it were me, I would increase the steroids slightly for a few days to see if there is any improvement - the increase will also help to cover you against any stress involved in the colonoscopy tomorrow. Meanwhile, arrowroot biscuits can help with diarrhea. Good luck tomorrow - I hope that whatever the cause of the diarrhoea it can be treated so that you feel better soon.

  • Thank you Celtic. That's exactly what I was thinking. So I increased from actually 1 mg to 4mg every day. I have to take it on an empty stomach which I know isn't good but I can't take the pain. The pain has slightly eased.

  • Fingers crossed for you tisabear.

  • With reference to effectiveness of a .5 mg reduction: I've successfully used this drop to reduce by 1 mg every four to five weeks. I start the taper (so far using four day start/stop rate) by dropping by .5 mg on the new dose days. When I get to the middle of the taper (when you are at two days old dose for the second time) I drop a full mg for a NEW new dose. After that the old dose becomes the "old" new dose and I continue with the taper at a .5 mg difference until fully on new dose, where I stay for about ten days. The advantage of this is that I can continue to reduce at a rather steady rate, but because the change is relatively small it would be possible for me to halt the taper or easily go back up just a very small amount if needed. I can foresee being one of those people who works with 1/4 mg reductions at some point in the maybe quite near future!

  • Thanks for that info. I am at 8mg and have stayed there for 2 weeks now and will continue on that until I feel confident! Slowly does it I think! Best wishes on your journey - one that none of us wishes we were on!

  • Thanks to everyone who contributed to this thread from my original post. I think it demonstrates four things : 1) we are all individuals who need to do what's right for us when it comes to tapering/reducing the dose : 2) that .5 mg reductions are not a

    ' waste of time' or 'make little difference' 3) the medical profession need to listen and learn from those of us who experience the condition first hand and 3) this forum provides valuable support for all of us who are in the process of our individual PMR/GCA journeys It's so heart warming to know we are not alone.

You may also like...