Tapering prednisone on too much

[Sunshinemaggie9]

I hope someone can give me advice on is in the same boat. Dec2017 diagnosed PMR at emerg. Given 15 mg prednisone and told when I see my dr he will tell me how to taper in about a week. Long story short stayed on 15/day then in feb he was away and I had a flare. Dr filling in put me up to 20. Oh, btw my dr is new

Young, and unfamiliar with all this. He returned in beginning of march and told me to stY on 15 mg for rest of march. Now, that's 3 months of what should have been a few weeks. I'm now at 30 days tapering at 14 mg. had the worst night ever last night...sweats that smelled of chemicals, soaked to the skin, today I'm puffed right up and flushed and upper body swollen. I might feel a bit feverish. Tomorrow I thought I'd now try 13.5 mg. I'm also type 1 diabetic, thyroid probs, and other complications. I don't have a rheumatologist as new dr said he knew what to do......he looked it up. I can't see him till my next monthly appt second week in July. I'm quite worried 😩 I don't know what to do and nobody to guide me. I live in a small town and only this gp is here. Can't even see him. Last time I tapered I had a real difficult time so only did .5 which wasn't bad. I feel I've been on this prednisone too long and too much of it. Can anybody relate to this? I'm so nervous. Thank you so much.

Best of wishes

Maggie x

[SheffieldJane]

My first thought was that you’ve got yourself in a right old state and you feel frightened and doctorless. I think you would qualify as an emergency for a sooner appointment. I guess your system doesn’t like all this Pred and you are getting typical side effects, including the awful fear and nervousness. I have experience many nightmare nights, with sweating, bad dreams and all sorts. My husband snores on while I go through a kind of private hell. The kind of dose you are on won’t hurt you in the long run. Was your taper from 20 mgs or 15 mgs? This process can’t be rushed. Do use one of the tapering programmes recommended on here. Put up with feeling seedy for a few days to see if things settle. You could try 0.5 drops that might suit you better. Get in touch with the surgery and maybe reconsider a Rheumatologist who can advise on the phone. You’re not alone, it’s a weird drug and it can cause all that you describe.

[Sunshinemaggie9 in reply to SheffieldJane]

Thank you but.....no emergency service other than hospital. I really want a rheumatologist but this new dr won't refer me. Also, I don't care how far the specialist is but none here. 2 hours would be the closest and a 3 or 4 month wait. I'm so stressed.

My taper was from 20 to 15......which I did in march/ April and now trying again but stuck at 14 and feeling so poorly. Small town and I've just been researching myself. No medical help unless it's at a monthly appt. if emergency they send to hospital and they're not pleased about that. Yes, I'm in a real tizzy as I'm 70 and nervous about what's going on. I need to taper from 14 but I feel like I'm in a taper with it all, oh, as if I didn't have enough. I was born in Yorkshire but been here in Canada since age 10! Thank you

Regards, Maggie x

[SheffieldJane in reply to Sunshinemaggie9]

Well you are still a Yorkshire lass to me. You need better help until this settles down. That was an awfully steep drop from 20 to 15 it would have made me ill. I crept along reducing at 1 mg a month stopping at the first sign of trouble. I was diagnosed in March 2016 and like many of us, think I had it longer. I got to 7 mgs and stuck but am bracing myself for a tiny drop of 0.5 when I am over my recent rock concert exertions.

[Sunshinemaggie9 in reply to SheffieldJane]

Yes it did make me very ill and today I'll do 13.5 mg. and hope for the best. I am very sensitive to this perhaps due to all the other hotmones and insulin etc. I wish I had a rheumatologist to guide me. It was a matter of here's the pills do your best. Thank you

Maggie...God bless x

[PMRpro Ambassador in reply to Sunshinemaggie9]

That is appalling - and in the UK I would file a complaint to the practice manager at the very least. But the system is so different.

[PMRpro Ambassador]

"I feel I've been on this prednisone too long and too much of it"

Absolutely not if what you have is PMR. This is not an acute illness that you take a short course of pred and stop it after a relatively quick reduction plan. I'm sorry if I am bringing upsetting news but PMR lasts at least 2 years and for much that time you may need something in the range 5-10mg. On average it lasts 5.9 years - so 3 months at 15mg is perfectly normal and OK.

In this paper you will find a recommended reduction plan from a top UK rheumatologist and his team:

rcpe.ac.uk/sites/default/fi...

It's in as a box on page 4. He would have had you at the starting dose of 15mg that he usually uses (20mg if 15 isn't enough) for 6 weeks, then reduced it by 2.5mg for another 6 weeks - and obviously if you had started at 20mg after 3 months you'd only just be at 15mg. He finds this leads to fewer flares - which are common in the first year, especially if the doctor tries to reduce the dose too quickly. On the forum many of us have found that reducing in small steps makes it easier - some people are very sensitive to the change in dose and then suffer steroid withdrawal rheumatism. It starts as soon as you change the dose and then improves over the following few days. A flare of the symptoms usually takes a few days to appear and then gets worse day by day. This helps to know when to try to stick it out and when to go back to the last dose.

You aren't reducing the dose to zero straight away - you are looking for the lowest dose that gives the same result as the starting dose achieved. And you may not be entirely free from pain - but you should have achieved better than a 70% improvement.

I do know that being in Canada can make it difficult to get specialist help but honestly, your doctor does sound as if he has some idea of what he is doing. Perhaps you could take the paper I have given you the link for - it was written for GPs to help them manage PMR patients on their own when specialist help is not easily accessible. It isn't unusual for GPs to manage patients in the UK.

So stop worrying - you are doing fine. Your Type 1 diabetes and thyroid problems do complicate the picture though so I'm surprised your GP won't see you more often as he should really be keeping a close eye on your diabetes as pred can increase the BS levels. Or do you have a diabetes clinic/nurse?

Where in Canada are you?

[Sunshinemaggie9 in reply to PMRpro]

Thank you PMR pro. I'm in Ontario . Born in Yorkshire and been here for 60 years! Today I'll drop to 13.5 and if I suffer I'll go back up? It seems 15 is the dose that gives me the results of starting dose. However, that isn't tapering. Tapering or not I still have weird symptoms but no pain. Hunchback, moon face and literally no sleep....oh and those rancid nightly sweats and daily flushes . I dread going down by even .5 . Gp says it's psychological!!!!! I'm trying to manage my insulin although after a 4 month wait I did see an endocrinologist last week. He was surprised I wasn't seeing a specialist for the PMR....thank you again, it's all helping me. I'm just so afraid as I don't have knowledge of this. Diabetes at 40 then this at 70. I also wonder about GCA..you are very knowledgeable. I'm full of anxiety which is making matters worse. Sincere blessings ,

Maggie....still a Yorkshire lass

[PMRpro Ambassador in reply to Sunshinemaggie9]

I agree with the endocrinologist that you need a rheumy - you are a complex patient and that is, more often than not, beyond the average GP and especially when they can't offer more than monthly face to face checks.

Does your system allow the endo to cross refer you to a rheumatologist? It used to happen in the UK but, unfortunately, no longer.

And frankly - I hope your GP gets PMR when he is older and discovers for himself that, whatever PMR is and it is many things, it is not psychological.

[Jgyles in reply to Sunshinemaggie9]

Hi Sunshinemaggie9. I am in Small town Ontario as well and getting good care from my GP and Rhemetologist. I hope you can get to see someone, but I am playing the same game. tapering and tring to keep the symptoms in control. From 15mg, my Rhem wants be to drop 2.5mg for 2 weeks and then another 2.5mg for another two weeks, until I get to 10mg, then 1mg per 2 weeks. This is my second time trying to taper, hopefully not too fast- which I am worried about.

[PMRpro Ambassador in reply to Jgyles]

That is VERY fast - it would be fine if "your" dose turned out to be under 5mg - but it rarely is! More usual and more likely to succeed would be a month at each dose...

However - all the best!

[DorsetLady PMRGCAuk volunteer]

Hi Maggie,

This might give you a bit more information about your illness and treatment, as you haven't received much help from your doctor.

I think we all feel bewildered early days, so that is why this forum is a godsend, please keep coming back for reassurance.

healthunlocked.com/pmrgcauk...

If you are having trouble with tapering this may also help

healthunlocked.com/pmrgcauk...

[Sunshinemaggie9 in reply to DorsetLady]

Thank you so much, I'm scared and bewildered without any medical help. I'll keep coming back. This is a fantastic site, thank you so much. I do have a bit of trouble navigating it though, I'm going to drop by only .5 today even though I waited 6 weeks last time but I need to be off this prednisone. If I get sick I'll go back to 14' gp says it's all psychological!!!!!

Blessings

Maggie

[DorsetLady PMRGCAuk volunteer in reply to Sunshinemaggie9]

Best I not comment about your GP - could get myself into trouble 😳. Mind you it won’t be the first time, and undoubtedly not the last either. 😏

[twinkleyt]

I was taking 5mg daily of pred for 5.5 weeks on my own decision to try if it worked on my sciatica and COPD and leg muscle pains which having no MRI was unsure if related. GP put me on 30 mg of codeine which did nothing to help.

On the Pred I had miraculous improvement and got my life back. But was met with great fury by the nurse who had prescribed me the pred for a COPD flare only and not for pain and she stopped the prescription immediately. No tapering off.

I decided to manage it myself, I had read that sometimes one day on and one off is tried, so did that but didn't work out so halved the 5mg into 2.5. When I had only 3 x5mg left I stopped altogether to see what would happen.

I was OK for a week but over did the gardening and next day was in agony with sciatic pain, ankle pain in the night, thigh pain just walking.

I took one of my remaining 3x 5mg yesterday and instant relief within an hour but avoided the gardening.

Today, I am OK at the moment- still no more screaming sciatica or other hip/leg pains.

I am considering paying for a private Rheumatolgist if the agony returns without the Pred.

I was taking it for 5.5 weeks and only 5mg daily,

I am keeping the last 2 safe for emergencies

[PMRpro Ambassador in reply to twinkleyt]

What a very unpleasant and IMHO unprofessional nurse - she should have been asking why 5mg of pred (a VERY low dose) was doing what 30mg codeine (a potentially addictive drug) didn't.

No hope your GP might provide the needful?

[twinkleyt in reply to PMRpro]

Afraid not. My best bet is to be referred to a rheumatologist by my Lung specialist next month. There is a back story with my nurse being antagonistic towards me but only she knows why.

[PMRpro Ambassador in reply to twinkleyt]

All the more reason to complain and establish why. Not acceptable at all.

[twinkleyt in reply to PMRpro]

Her reason was that I had not used the medication as prescribed.

I was meant to take 8 tablets of 5mg daily for 1 week, plus ABs - Ciprofloxacin- for 5 days if I had a bad flare up of COPD.

Instead I took 1 x 5mg daily and as I had no chesty cough did not take any ABs.

She was angry that I had disobeyed her instructions and self medicated.

[PMRpro Ambassador in reply to twinkleyt]

Anger was not the appropriate response - re-education might have been