Tapering from 1mg

[marigoldb]

on Thursday I saw my GP with an issue, then mentioned Iwas still on 1 mg of Prednisolone, could I now come off it. He said yes that’s really a nothing amount stop it!

Well 4 days later this Bank Holiday Monday, waking up I could hardly move, pain ++

I read on line I should, even for Img it has to be a slow stopping. So this morning having read it, took some Prednisolone, still have some 2.5 mg tabs, so feeling so awful took 5mg, and will do 2.5 tomorrow, and then get back to the 1 mg. was really disappointed with the GP’s advice.

[DorsetLady PMRGCAuk volunteer]

hi

Sorry to hear you are having issues following advice from GP -and hope the extra works for you…but do ring surgery tomorrow.

I know you are in a bad place, but please don’t use your name as a post title…

[marigoldb in reply to DorsetLady]

sorry, didn’t know how to do it!

[marigoldb in reply to DorsetLady]

I realise I should have put something like ‘ problem with tapering’.

[DorsetLady PMRGCAuk volunteer in reply to marigoldb]

No probs - but for security reasons we should not enter real names on open forum.

HeronNS has explained how to change title. .

[marigoldb in reply to DorsetLady]

yes sorry about that. I think it’s the first time I have started a post, I usually am just replying to others when it seems relevant. Never too old at 87 to learn!

[DorsetLady PMRGCAuk volunteer in reply to marigoldb]

No, never too old! 😊

[HeronNS]

Go to the edit function in your post and change your post title from a name to something relevant to your question. You just click the little "More" down arrow at the end of your post.

As to your question, I've been in a similar position, although I tapered down myself very slowly from half a mg to zero, using zero as a new dose in a slow taper program. Within six weeks I was back on pred, although still at a low dose around 2, and a few months later had a major flare! It is amazing how much good even 1 or 2 mg can be doing. For PMR it really is more than nothing.

[Suffererc in reply to HeronNS]

I have just started on 1/2mg and with operation looming I am staying on that.

Know what my GP will say , similar to MRS MB . 😊

[HeronNS in reply to Suffererc]

I took 2 mg the morning of another potentially stressful dental appointment. It wasn't so stressful, although I had to be there by 7:55 am which was probably the most stressful aspect. Fortunately morning traffic was mostly heading in the other direction. Felt fine all day, no wobbles, but I did feel really tired after the appointment and a short side trip to the supermarket on the way home, so didn't have a walk, just pottered around home. This morning I went out earlyish for a long walk, feeling really energetic. I'm beginning to think that sometimes it's not a bad idea just to occasionally take a day off from exercise to give the body time to recover from what has gone before. More necessary as the body begins to slow down?

[PMRpro Ambassador]

We do talk a lot about how 1mg can be plenty to keep the inflammation of low activity PMR controlled. The GP probably doesn't realise that - but it is always best to get to zero by using zero as the new dose on one of the slowed tapers we also talk about a lot and take plenty of time getting there. And if the PMR is still active - even then you may not manage to get to zero,

[marigoldb in reply to PMRpro]

Thank you.

[yogabonnie]

oh I feel your pain. I am on half a day and cannot CANNOT go lower. think I will not bother. !

[marigoldb in reply to yogabonnie]

Thank you for your reply, I am going to stay on my 1 mg daily once again, and enjoy hopefully feeling ok, as I did before.

[paintpots]

A year ago I was at 1mg and my doctor told me to stop, on the 2nd day of no pred I had a flare and had to go back to 4mg and have had to taper back down. Now I am going to go very slowly down from 1.5mg to zero over 9 months. My doctor now let's me control my dose as long as I am reducing however slowly.

[Songbird6]

I was told by my Osteoporosis Clinician to stop taking Prednisolone a month after reducing down to 1 mg, as my inflammation levels were normal from my blood tests, she said it was a very low dose. I decided not to do that and have reduced to a half a tablet each day and will reach a month on this by the 4th June, I do not intend to hurry and jeopardise myself to a flare anytime soon! 😔 Just something that got me thinking, was if my inflammation levels are normal, is that not because of the maintenance dose and slow taper, I wonder! I still think that some of medical professionals are ignorant of PMR, which I find very worrying, 🤔 I know that Steroids have been a big reason why I have severe Osteoporosis but I do not want to go back to the start of my journey with PMR after 2 and a half years.Good Luck with your low dosing and recovery 💐

[PMRpro Ambassador in reply to Songbird6]

Your inflammation levels were normal BECAUSE YOU WERE ON ENOUGH PRED - why on earth do they not understand that? It doesn't mean the underlying disease process is gone. And to just tell a long term pred patient to stop suddenly while still on above 1mg is tantamount to booking them a hospital bed! That is plenty to suppress adrenal function and replace it - take it away suddenly and you are at risk of an adrenal crisis which could be life threatening if not recognised and treated immediately. 1mg is probably not too bad but you were only just there

[HeronNS in reply to Songbird6]

You are right. It's best to continue to taper, never to stop suddenly, and I've by now had plenty of experience tapering at allegedly minute doses and can confirm that one mg, or even half a mg. can make an astonishing difference.

[marigoldb in reply to HeronNS]

Thank you HeronNS, for your reply. I am reassured about doing a really slow tapering now, and I’m back on the 1mg and feel ok once again

[HeronNS in reply to marigoldb]

I'm so glad.

[Sollymo]

Wow ! I’m so sorry you’ve had such pain but your post may have helped others . It’s certainly helped me ! I’ve been on 2mgs for several years ( Rheumatologist said that’s fine , discharged me and said it’s up to me when I stop ) . Last year I tried to reduce very , very slowly over months but my dear 98 yr old Mum was unwell and passed away after 6 months of health issues which as you can imagine was very stressful . I decided it was a bad time to try and reduce ! So I’ve just stayed on 2 mgs and wondered if it’s doing anything ( I still get fatigued easily and stressed easily ) . If I decide to reduce you have reinforced the need to taper slowly !! So once again I’m sorry you’ve had the pain but thank you for sharing !

[dancersize2]

I took a year to very slowly taper down from 1mg to zero via 1/2 and 1/4.

[marigoldb in reply to dancersize2]

Thank you for sharing your experience, I’m in no rush to cut down for a while, after that last experience of mine, and as you say, will do it really slowly. I guess my GP knows little about PMR! or that that was the reason I was on the 1mg.

[oscarina]

an abrupt cessation of Pred at 1mg may be no problem for some, but the variable sensitivity of individuals and the level of adrenal recovery as well as several other factors , i.e.- age, comorbid conditions, level of overall health- can make such a quick decrease generate a flare in some. A gp may not be sufficiently cognizant of these variabilities, a rheumy consult would be great if only there were enough of them to go around.

[PMRpro Ambassador in reply to oscarina]

We've had a few stories in the last few weeks where the GPs were being sensible and it was the rheumies who were demanding for instant reductions that were likely to result in trouble!

[PMRnewbie2017]

I'm retired now (pharmacist) and to be honest although I was taught about steroid tapering, the level of knowledge I had was minimal compared to what I've learned from this forum together with my own personal experience. I very much doubt if Drs are taught more than I was. Once we are taking the very low doses, IMHO we are really into Endocrinologist territory but how many of us get that luxury? It would be wonderful if only they would just ask and learn from their patients. I live in hope that one day my GP will take me up on my offer to give a short presentation on PMR - a patient's perspective. I won't hold my breath!

[PMRpro Ambassador in reply to PMRnewbie2017]

We probably ARE in endo territory but unfortunately I think the bigger problem remains a rheumy problem since PMR inflammation can be controlled by as low a dose as 1mg - and they don't understand either aspect. At these low doses BOTH aspects are significant and the only people who get that are the patients and a very small number of really good rheumies!