Tapering on Prednisone : Hi All, I would appreciate... - PMRGCAuk

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Tapering on Prednisone

misschris
misschris

Hi All,

I would appreciate if someone can let me know if I am tapering down from Prednisone effectively.

Three weeks ago I had a flare of Polymialgia and my GP put me on 30mg daily for a week and told me to reduce 5mg weekly.

I am now today down to 15mg a day until next Wednesday when I taper again.

I have so far been ok and not had any pains in my body. I think I have moon face as part of side effect which feels like I have fluid retention in my face and my BP has gone up since being on preds, my GP has told me that I need to take BP tablets but am a bit reluctant to take them and see if it changes once am off preds in 3 weeks but scared that I may be at risk of heart attack or stroke if I don’t.

My point is, should I be tapering 5mg a week is that too much or about right?

Chris

14 Replies
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I'm a bit confused as you are intending to be off the Pred in 3 weeks. But if you have PMR you will not be able to come off them. Can you say more about how long you have had PMR and what dose you were on before you got the flare?

misschris
misschris in reply to suzy1959

I was first diagnosed with PMR April 2017 and was put on 30mg of preds and tapered down to 20mg the following month, instructed by haematologist and then tapered monthly until I got to 7mg it was then I struggled tapering 1mg a month, so it took me longer to come off preds altogether which was end of February this year, I went to see Rheumatologistin Feb (refered by my GP) by this time I was taking 1mg of preds and had some aches and pains, she told me it won’t be PMR and told me to stop taking the preds.

PMRpro
PMRproAmbassador

5mg a week is NOT the way to taper in PMR - it is the way pred is used in a lot of other disorders but in PMR the reductions are usually monthly - you aren't normally tapering to zero in PMR, you are doing something called titration which is finding the lowest dose that works as effectively as the higher doses.

However - I'm not quite clear what you mean by "Three weeks ago I had a flare of Polymialgia". You said in March last year you were just off pred - did the stiffness then all clear up and this was a new onset of PMR symptoms 3 weeks ago? Are you aiming to be off pred again in 6 weeks? That is what I was supposed to do the first time I was given pred (the rheumy wouldn't have it was PMR) and within 6 hours of the first dose I was almost pain-free but within 6 hours of missing the first 5mg dose I was worse than I had been before. If this is a return of PMR, a resurgence of disease activity, then a 6 week taper of pred won't stop it, it will be more like last time.

Are you to reduce at this rate to a given point and then slow down? A week at each new dose isn't long enough to know if it is still enough - but equally, I don't understand why the GP started you at 30mg - 20mg would have probably been enough and even trying 15mg would have been a good idea as a start.

misschris
misschris in reply to PMRpro

I never came off the pred until Feb this year, although I had tapered down and thought I was coming off them last year but it never got there.

I became unwell 8th April this year and was told by GP that I had Covid symptoms, not the main symptoms but rash or possible allergy, my body was so painful and could hardly do anything for myself but because of Covid my GP would not see me, my son rang 111 and spoke to clinician who went through my symptoms with me and she said that there was a lot going on with me and felt my pains were down to flare of PMR, she rang my GP who rang me and agreed that it sounds that whatever I was suffering from had triggered my PMR and he put me on 30mg of preds and told me to reduce dose by 5mg a week and now am down to 15mg as I am into my third week.

He hasn’t told me to slow it down at any point and that’s why I have posted on this forum as it took me along time to come off them when I was first diagnosed.

PMRpro
PMRproAmbassador in reply to misschris

If you were taking pred until February and are flaring now - then the greatest likelihood is that the PMR hadn't really gone away entirely but the activity was so low it took a couple of months to build up far enough to cause symptoms. The 111 clinician was right in her assessment - it happens quite a lot.

Your GP, however, has really rather over-egged the pudding and a "short sharp dose" of pred won't send the PMR away, he should have looked for the lowest dose that worked to relieve the symptoms and gone from there. If it were me I'd keep reducing at the 5mg a week down to 5mg and then slow right down, maybe trying 2.5mg for a couple of weeks and see if that is still working. It's a really low dose and you needn't worry about slowly dropping to 2 and 1mg. But at 1mg - I would stop and accept it as a sort of talisman!

misschris
misschris in reply to PMRpro

I thought the dose was a bit high and I did contemplate only taking 10mg but because I was so poorly I thought just do as your told, so I took the 30mg but I am down to 15mg today until next wed and will reduce again and go with how my body is feeling after each reduction but hey it’s really difficult to see a gp today it’s all telephone consultations and I think sometimes you need that 1-1 support.

PMRpro
PMRproAmbassador in reply to misschris

You can have 1-50+ support here!!

Boss302Fan
Boss302Fan in reply to misschris

It’s really sad and frustrating at the same time that IMO you can’t trust doctor’s to provide good guidance. GP’s I can understand, but find it so with Rheumy’s also (based on mine and the experiences of others I read) who I would think would have a better depth of knowledge to work with especially with a multi-doctor practice.

I’ve found better guidance here that I’ve used to get cooperation from my Rheumy and If PMRpro isn’t the most knowledgable she is darn close!

This site is my goto!

misschris
misschris in reply to Boss302Fan

I feel the same too about getting more knowledge from here. I think at this time it is really hard as you can not sit with GP and discuss in detail as you would if face to face.

I am feeling better, I got in the post this morning a blood form to have my bloods tested again, I will do this in tomorrow and will be asking for my results to be printed off so I can see how the changes are to my last test.

Oh Chris, I'm sorry you have been getting what sounds like unhelpful advice and treatment form your doctors!

As PMRpro sys, it seems most likely that you still had a bit of PMR when you stopped the Pred. , even though you were told you didn't have it, and so the inflammation built up again until you were not well at all and needed to go back on the Pred. Now, you will need to be back on it until you don't need it anymore and who knows how long that will be. It is not that uncommon for this to happen. You need to be led by your body and symptoms, not by some ignorant doctor!

misschris
misschris in reply to suzy1959

Suzy I have replied to your post but didn’t use reply to Suzy. The post is the one we’re its starts off I was up the wall.

I was up the wall when I became unwell, I did end up in A&E they also told me I had Covid symptoms, my inflammation was up as well as having an infection in my body, they had to put me on an intravenous drip to bring my heart rate down, it’s been really hard because GP would not see me due to Covid 19 and I felt I neede to talk face to face but that couldn’t happen.

This time tho the preds did not work straight away like they did the first time I was diagnosed, it took about three days for the pains in my bottom part of my body to work again, as for my hands and arms they took another 5 days but they reckon them pains were to do with Covid...it’s been horrendous because you feel your not getting the right treatment.

I find more valuable information on this site than with any physicians. I do like my GP very much, however, he has had little experience with PMR. He leaves me to my own decisions on what to do, as I know best how I feel. After 16 months I am down to 3mg of prednisone. I do not expect miracles in going back to how I was 2 years ago. In the mornings my body feels shattered with aching lower back and stiff, painful legs. As the morning proceeds everything improves. Sometimes I am amazed at how well my legs do while walking in the park. I do not blame all the aches on PMR as I do have osteoarthritis and osteoporosis. My key to assuming the cause is to take some Tylenol. If the pain does lessen then I know it has nothing to do with PMR. I have been on 3mg now for almost 2 months. I was going to try to go down at end of one month, however, with all that is going on with COVID 19 and the anxiety it bring, I am staying at 3mg for a while longer. Good Luck to all ! :)

I think your being wise to keep your dose the same at this time. It took me from April 2017 to Feb 2020 to come off the preds, my GP was not happy that I was taking so long and that’s when they refered me to a rheumatologist, at the end of treatment, she told me to come off them because 1mg won’t be doing much and the little aches and pains I was having would not be to do with PMR.

April 2020 I had a flare, so maybe them little aches and pains I was having was my body’s way of letting me know that I wasn’t quite ready to quit taking the preds in Feb, who knows 🤷‍♀️

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