Confused about when to taper in relation to symptoms

[Rosebud17]

I was impressed with the initial response to 15 mgm prednisolone which eased my symptoms within 3 days. The response was about 70% improvement in the pain in the arms/ shoulders (the right arm much better than the left) and 95% improvement in the thighs and buttocks. My GP encouraged a taper to 12.5 after a month, and ever since the arms have really improved but the disease seems to have progressed with pain in neck and lower back. I am aware my au fait GP wants me to taper to 10 mgm in a weeks time but in relation to what I read on this forum this doesn’t seem to be a sensible thing to do. Is it usual for pain to manifest itself in different areas after making initial gains in this way? Help and guidance needed please

[PMRpro Ambassador]

It certainly isn't very sensible and I suspect your GP should either have started you on 20mg or left you at 15mg for longer, However - I do have to ask what YOU have done to help or hinder things. Have you gone back to normal activity levels? If you haven't - one possibility is that it was caught fairly early on and maybe the disease activity has increased since. Another is that the neck and low back pain is due to myofascial pain syndrome which is often found alongside PMR and in some ways is part of it but doesn't respond as well to moderate dose pred as the basic PMR does.

[Rosebud17 in reply to PMRpro]

No I haven’t gone back to normal activity levels, not even half. The tiredness is awful and frequent rests are needed after any activity. I cooked an Easter Sunday meal for my supportive daughter and her husband as a thank you for all their help but today I’ve been exhausted. I’m certainly realising my limitations! I had wondered if the neck and back pain was something different

[PMRpro Ambassador in reply to Rosebud17]

It could be, as I suggested - might be worth asking for a physio appointment and see if they can help. But I wouldn't reduce any further yet and see if it gets any worse - in which case the doctor needs to have a rethink, in case it isn't "just" PMR.

[Rosebud17 in reply to PMRpro]

I’ve been doing the stretching exercises suggested by PMRGCAuk for the last couple of days and they certainly seem to have helped the neck and back. It’s taken 3 weeks to calm down after that last taper …..I shall taper more slowly next time sticking to the 10% guide. Thanks for you help

[DorsetLady PMRGCAuk volunteer]

Short answer to your post title…

If you have symptoms you don’t taper… but you need to know why you still have symptoms… the most usual answers are-

Not high enough dose initially or not long enough on initial dose,

Too fast taper,

You have done too much for the dose you are on

.. and as PMRpro has explained there are other factors.

No,it’s nonsense to reduce, but unless your GP is aware of all these variables, he’s likely to push you to.reuce, so you need a frank conversation.

[Rosebud17 in reply to DorsetLady]

Frank conversation on the cards next Monday. Thanks for your help

[DorsetLady PMRGCAuk volunteer in reply to Rosebud17]

👍

[Polygolfer]

I would request an urgent referral to a Rheumatologist. For people on the lighter scale of PMR (controlled with 20mg or less) I was explained that in the UK the NHS attempts a faster tapering down. This is the hope that was caused the immune malfunction was a perfect storm of adverse conditions that will go away faster than a chronic condition… I had a similar pattern to yours and as soon as we knew the fast taper did not work (failed on the last reduction from 5mg to zero) I got an immediate referral and was very competently treated and managed by an NHS Rheumatologist. I am currently steroid free for over three months. Not totally pain free or fully recovered yet but leading a normal life with a lots of exercising etc.

[PMRpro Ambassador in reply to Polygolfer]

I have no idea who told you that - but it isn't generally true. It will be a personal predilection on the part of a particular doctor.

[Polygolfer in reply to PMRpro]

In the UK the GP is your natural port of call if you need medical assistance. For short term issue they will likely treat you themselves, for long term or even chronic and more complex conditions they refer you to a specialist, or you can always ask for that referral if you fit the right conditions. Most people in the UK use and depend on the brilliant doctors and nurses of the NHS for medical help and for many it works just fine.

[PMRpro Ambassador in reply to Polygolfer]

Please don't patronise me - my entire family including me have worked in the NHS all our lives.

[Polygolfer in reply to PMRpro]

The NHS is great and bashing it does not serve any purpose.

[DorsetLady PMRGCAuk volunteer in reply to Polygolfer]

Re this reply to PMRpro, the old adage applies -

“don’t try and teach your grandmother how to suck eggs’

[Polygolfer in reply to DorsetLady]

Good one… I guess it depends on the grandmother!

[Croft9232 in reply to Polygolfer]

I find your posts and comments are unhelpful and that you are ill informed regarding PMR.

[Polygolfer in reply to Croft9232]

I respect your opinion, you should respect mine

[Bcol in reply to Polygolfer]

I'm not sure where that explanation came from, it's not one I ve ever come across before. I have been treated by my excellent GP/s since I started with PMR and when I look at a large number of posts on this forum I'm a) very pleased that I've never seen a Rheumy and b) that this forum has/does exist to help and guide in when/if we have problems or questions.

[Polygolfer in reply to Bcol]

Good for you! Not all GP’s have Rheumatologist expertise but if you believe yours has then stick to that! It’s always a choice we have!

[Viveka in reply to Polygolfer]

Hi Polygolfer, I've noticed that you respond to posts advising people to see a rheumatologist. In an ideal world that would be the case and there would be little need for this forum beyond mutual support. I'm glad you've had a good experience and are feeling well, but as you obviously read the posts regularly you'll realise that this is very far from the norm. The forum is awash with people who have received unhelpful advice from rheumatologists and GPs. I have been shocked to see multiple first hand accounts of the inadequacy of rheumatologists. No one is infallible, but filtered through our experts, the forum provides a perspective based on the experience of hundreds of people with PMR and GCA. So yes people with PMR should see their GP or even a rheumy but unfortunately they need to balance the information they receive with the wisdom of people who have undertaken an in depth study of the condition combined with lived-experience. It has been a lifeline for many of us trying to understand the conditions, me included.

[Polygolfer in reply to Viveka]

I’d like to think the forum does not (or cannot) replace doctors, it complements them which is a healthy good reason for it to exist!

[Bcol in reply to Polygolfer]

If you read this forum regularly you will see that at the bottom of each page it states very clearly that this forum does not replace the medical profession.

"Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked."

Posts, where relevant, clearly state that advice/appointments should be received from the relevant medical professional whether it be GP, Rheumy or other.

Yes, there are those of us who who regulate their own doses of Pred, but that is done with the full knowledge and agreement with their GP.

PMR is an ailment which affects people in very different ways and for most lasts significantly longer than two years. A set, laid down in stone, method of treating it is not going to work for many/most. Sadly there are some GP's and Rheumy's who do not understand both PMR and the long term use of steroids, for which in this country there is no alternative. The guidelines doctors have, are just that "guidelines" that need to be adjusted to the needs of each individual.

This forum with its expertise and long, very long, in some cases experience enables its users to have an informed debate/chat with their medical practitioner, which hopefully, leads to a happier outcome for all.

[Polygolfer in reply to Bcol]

Yes, I am very aware of all the disclaimers etc and pleased you reiterated all that because steroids are a very serious drug that carries significant potential downsides and at the same time offers great relief so it’s always a double edged sword to use them hence why most doctors will try to wean you off them as quickly as possible

[Bcol in reply to Polygolfer]

The problem comes when their "as quickly as possible" is not always relevant to the needs of controlling the inflammation that causes PMR.

[DorsetLady PMRGCAuk volunteer in reply to Polygolfer]

As   Bcol has said this forum does not replace medical advice, and we remind people of that.. all we do is make suggestions regarding their illness based on our personal experience and what has been proven to work for others.

In an ideal world, we wouldn’t need to, but as we know that isn’t the case [even more so since 2020] - difficulty in getting appointments [particularly specialists], different variations of PMR, individual reactions to medication etc. One size definitely doesn’t fit all, and unfortunately many doctors think it does.

Looking at your profile, you appear to have had a relatively easy relationship with your PMR, plus good support from your medical team and you should be thankful for that, but please don’t assume it’s the same for everyone. If it was, this forum wouldn’t be required.

We do not spend all our time bashing the NHS as you seem to imply, if you read as many posts as some of us, you would realise there is a lot of praise for NHS… but when patients cannot get support from their medical team and are at a very low point they know they can come on here for an informed albeit non-medical opinion. ..and yes if necessary a whinge.

We are here to help other members, not to judge nor preach… and we do respect other’s opinions.

[Polygolfer in reply to DorsetLady]

Yes, I agree you always have been an excellent moderator/contributor!

[DorsetLady PMRGCAuk volunteer in reply to Polygolfer]

Thanks but I’m not a moderator- a contributor and ex patient..

[Missus835]

Sounds like too fast and too large a taper. I say this because my rheumy, who according to my GP, wants to control my taper at 2.5 mg per week. Hence, I find myself in a flare. Pain much as you describe, including hips. My CRP (a blood inflammation marker) has been steadily rising since December. I was supposed to drop to 10 mg. (from 11) last night, but went up to 16 instead. So upped by 5 mg. As I told my GP, you will not change it, but I can. I will remain at 16 for a few days. Then back to 12 mg. where I seemed okay. Then I'll try the Dead Slow tapering plan which is in the FAQS. We have to get any built up inflammation cleared out - again, before tapering. Hope you get some answers and cooperation from your medical team.

[Rosebud17 in reply to Missus835]

Thank you Missus835. Have taken on board the slow tapering advice and will stick to the 10% on the next taper from 12.5.

[AtopicGuy]

There's no approx. age or other relevant information in your profile. However, I see from your previous posts that your blood tests (including CRP and ESR) were normal prior to trying prednisolone. Are they still normal? Your strong and rapid response to 15mg/dy is a good indicator that your condition is autoimmune, but PMR is not the only one.