My ongoing battle

[maxgarry]

Hi everyone, I am continuing my battle on 2 fronts still. Firstly with my symptoms and secondly with my GP.

I have been tapering down my Prednisolone by 1mg every 1-2 months, as advised by a Rheumatologist, from 15mg. With each decrease there has been an increase in pain and fatigue. Despite persevering and continuing to reduce to 4mg I have found it impossible to tolerate any more pain and exhaustion. It has become virtually impossible to stand for more than a couple of minutes without the need to sit down again, due to the exhaustion and severe pain and stiffness particularly in my knees and ankles. So much so that, in desperation, I decided the only way to find out the answer was to increase my Prednisolone. For the last 3 days I have taken 20mg and amazingly most of the exhaustion has gone and my pain/stiffness has greatly improved. Coincidence or not?

The other battle has been to be able to discuss my situation with a GP. It has been very difficult under current circumstances to get through to a receptionist and when successful there are no available appointments.

The only advice given over many months has been to "get off" steroids as quickly as possible. Being able to convince a GP that steroids help my quality of life and the benefits far outweigh the side effects is proving very difficult. Furthermore, being able to obtain the necessary amount of Prednisolone will no doubt price even more difficult.

Any thoughts or advice would be much appreciated.

Thanks

[PMRpro Ambassador]

What sort of result did you have with the starting dose of 15mg? When you reduced - at what dose did the pain return? How long were you on 15mg before starting to reduce? Was the 15mg result as good as the 20mg now?

You are never reducing relentlessly to zero - you are tapering slowly to find the lowest dose that manages the symptoms as well as the starting dose did - so it is important to be as well as possible BEFORE starting to reduce. You are NOT aiming to get off pred asap - if that was the idea ask them why did you get pred in the first place? PMR is a chronic condition and the pred is only there to combat the inflamamtion and so provide symptom-relief. It isn't a cure, it is a management strategy to allow a decent quality of life until the underlying autoimmune disorder that causes it burns out and goes into remission - and that is something that only happens for about 1 in 3 patients in 2 years or less. The rest of us take longer, much longer for about half. Doctors seem to either not know or to forget that.

[maxgarry in reply to PMRpro]

When I was first diagnosed in March '17 I started on 30mg. I have been up and down between times, but on reflection it seems that 20mg is the correct dose. Anything below and my symptoms increase

[PMRpro Ambassador in reply to maxgarry]

Then you really need to be referred back to the rheumy because with PMR the inability to reduce below that sort of level suggests either something else is going on or it isn't PMR at all. You should be investigated for other possible answers. That may include LVV (large vessel arteritis) or GCA - but there is something.

[maxgarry in reply to PMRpro]

Hi, just an update. I have spoken to my GP this morning who insists that I do not increase my steroids from my current dose of 4mg. When asked what I should do about the extreme fatigue and pain he reaffirms the need to come off steroids, especially under the current circumstances.

Seems like it's ok to live the life of a zombie as long as I don't take steroids!

[PMRpro Ambassador in reply to maxgarry]

I despair. I really do. Stop your pred at present and you will be ending up in A&E with an adrenal crisis - which can, ultimately, lead to a very long rest if you are unlucky. If you are at 4mg then there is no reason at all to rush off - if by "current circumstances" he means Covid-19. You can't change your history of pred or your illness and THOSE are the critical points, not the small dose of pred you are on today.

Haven't you got the choice of a better doc?

[maxgarry in reply to PMRpro]

There appears to be no other choice. It is virtually impossible to speak to a doctor and when you can there is no choice. Whoever is available at the time. I believe there is a test to see if my own production has started once down below 5mg. Is that correct? Nothing has been offered or suggested.

[PMRpro Ambassador in reply to maxgarry]

Not that it HAS started but whether it is CAPABLE of starting up again. You need to be down to under 3mg before it is possible to have a better idea if it IS doing so. If you stick where you are for long enough the fatigue should improve if your adrenal function is recovering. One top PMR rheumy in the UK likes to keep patients at 5mg for up to 9 months before continuing the reduction - seems to make the rest of the journey easier.

[Suffererc in reply to maxgarry]

I really detest that attitude at surgeries that any Dr will do when you phone. I always insist on the same Dr and usually lucky or I wait and phone again. Multiple Dr consultations usually end up with different ways of treatment? My Dr isn' t brilliant with PMR but she is reasonable and usually says you know best.

[tangocharlie in reply to maxgarry]

See my post about everything to do with adrenals, it explains adrenal insufficiency and what to do if you think you have it

[tangocharlie in reply to maxgarry]

And yet the world expert in PMR, Sarah Mackie is advising people who get infections and Covid to increase their Pred dose. There is so much confusion amongst doctors as to what to do.

[PMRpro Ambassador in reply to tangocharlie]

They aren't thinking it through. The pain clinic lady here told me they started using methyl pred quite early in the epidemic - it is perfectly possible that pred has some protective effect if you DO get it.

[Hildalew in reply to maxgarry]

I am a Pred user (for PMR) since October 2018. My tapering has gone fine, with just one or two tricky moments around 10mg and 8 mg. I was lucky to come across this forum before I embarked on the taper 'timetable' that I had been given by the rheumy and so have been able to taper without any episodes of substantial pain.

Could it just be that 20 mg is your ideal dose at the moment - but that maybe you need to give it a bit longer to do its stuff than you have in the past, before you start to taper/ reduce.

Your account of how, in the past, every reduction has meant an increase in pain , distressed me. That is really not how it is supposed to be! And if there is PMR pain it is certainly not time to reduce further.

Good luck with your GP/rheumy.

[DorsetLady PMRGCAuk volunteer]

Hi

“Coincidence or not?” Most definitely not!

If your GP is of no help is there any way you can speak to Rheumatology dept to get advice. Not sure if you’re still under their auspices or been “sent back” to GP to treat. Well it’s obvious he can’t - if his attitude is to get off steroids asap.

I would stay at 20mg for a couple more days at least whilst you try and contact Rheumy. The issue then is what dose to drop back down to - as it seems from what you say, your PMR has never really been fully under control.

Failling getting advice from Rheumy is there another more sensible GP you can talk to?

[maxgarry in reply to DorsetLady]

It would appear at present that there is no chance of requesting an alternative GP. I am beginning to think that my GP's opinion is that I do not have PMR, hence the reason for dispensing with Pred. I don't know how PMR is diagnosed. At first diagnosis I had the classic symptoms, but blood tests were normal. I was prescribed 30mg and within 36 hours a remarkable improvement. Despite having the same recurring symptoms, more prominent on reduction, I don't know how a diagnosis is made. No other treatment has been offered or suggested.

[PMRpro Ambassador in reply to maxgarry]

Diagnosis is on the basis of clinical history (signs and symptoms) and response to moderate dose pred. Up to 20% of patients have blood markers that are within normal range - although that doesn't mean they aren't raised for the patient.

If you can persuade them to do it, a PET-CT scan is a good diagnostic tool but once the patient is on pred it is less conclusive, even 10mg/day pred is enough to blunt the emissions marking the inflamamtion.

[maxgarry in reply to PMRpro]

Advice please. I have had 3 days at 20mg, then 2 days at 15mg. I need to get back to my previous level of 4mg asap. Is it ok to drop back to that level immediately, or should I take a slower approach?

Thanks for help

[PMRpro Ambassador in reply to maxgarry]

You could in theory yes - but as DL feels as well I suspect, I really don't think you should go back to the 4mg. You got into the realm of not enough a long time ago. Go back to 4mg now and within days you will be the same as you were before. Why do you NEED to get back to a dose that obviously wasn't enough to manage the inflammation? Where did the pain start to reappear as you reduced? That is as low as you should be going for now and then reduce very slowly and in small steps - NOT ignoring the symptoms returning this time though.

[maxgarry in reply to PMRpro]

Thanks for quick reply. I am unable to continue at a higher dose as my GPs won't issue a prescription for more than 4mg per day. I seem to have run out of options.

[PMRpro Ambassador in reply to maxgarry]

No option of a different GP who listens to the patient/treats the patient not the text book or numbers?

That is where I would be starting - I learnt my lesson there having had PMR for 5 years and finally finding the practice expert rather late. And a return to a rheumy is the next step. If you could afford it - even privately.

[DorsetLady PMRGCAuk volunteer in reply to maxgarry]

PMRpro has replied- so I do not need to add.

[SnazzyD]

Apart from PMR you also have to think about adrenal function at these low levels. If your adrenal system is not working reliably after the higher doses for so long, you’ll feel pretty rough and the exhaustion can be profound. Ask your GP for a Synacthen test for when you are below 5mg to see if your adrenal glands can function or even a morning cortisol level. Some docs do seem to forget this important aspect when they try to hurry people off Pred.

[Mazxstitch]

I saw a posting on here a few days ago by PMRpro "dead slow and nearly stop reduction plan". I started on it yesterday. I'll try anything to stop yo-yoing with the Prednisolone.

[PMRpro Ambassador in reply to Mazxstitch]

I don't know why it should be so, but I think avoiding flares and the subsequent difficulty controlling things again is absolutely crucial.. Especially in patients who weren't diagnosed quickly. It still may not be a speedy journey but it should be smoother.

[Mazxstitch in reply to PMRpro]

My pain started Christmas day 2018, only diagnosed as PMR on 1st April 2019. I am so tired of pain.

[PMRpro Ambassador in reply to Mazxstitch]

4 months isn't bad! Try 5 years ...

[Mazxstitch in reply to PMRpro]

I don't find your reply sympathetic or encouraging.

[Iwillwin123 in reply to Mazxstitch]

My friend ..... do not feel so I can assure you that PMRpro and most others here , are always encouraging and sympathetic and always ready with sincere inputs. I believe PMRpro was just expressing a wry opinion ...... You and us , we are all in the same boat and all friends here. I am sure you feel the same mostly. In any case it is ok to be annoyed ,upset and angry here too ,once in a while ..... we all do that too here and others are there to help us through that as well

I do hope your pain goes away. It must be terrible to face constant pain ..... but believe me it WILL get better sooner than later. Hang in there !

Cheers !

[Mazxstitch in reply to Iwillwin123]

I expect an answer from someone who is an admin or ambassador on any site to be posting a more supportive response than that was given.

[Whippetygirl in reply to Mazxstitch]

And we all need a sense of humour to get us through this very unpleasant illness

[Mazxstitch in reply to Whippetygirl]

Positive support is more helpful

[Whippetygirl in reply to Mazxstitch]

The reply from PMR pro was very tongue in cheek, please do not be offended.

[Mazxstitch in reply to Whippetygirl]

I am offended

[Whippetygirl in reply to Mazxstitch]

Please calm down and not take offence when non was intended. The People on this forum are all volunteers with a vast knowledge of our conditions, without them we would all be in a dreadful mess, me included.

[Mazxstitch in reply to Whippetygirl]

Why are you so intent on defending PMRpro? She hasn't bothered to clarify her response, why should you feel obliged to.

[Whippetygirl in reply to Mazxstitch]

Because I have a lot of respect for her, please let this drop. I can assure you that the people on this forum are here for you 24hrs a day, you will never feel alone.

[Mazxstitch in reply to Whippetygirl]

If you stop rubbing salt in the wound that would help

[tangocharlie]

Many of us have had to battle with such attitudes based either on arrogance or ignorance. Although to be fair, GP have been given conflicting advice on steroids under Covid and also as a GP friend told me recently, Drs are terrified of prescribing Pred because if people don't managed the side effects eg diabetes, blood pressure etc the can be dangerous drugs. One solution could be to print some of the papers on here, for example the BSR EULAR guidelines which although it suggests a taper of 1mg per month also recognises that every case is different and doctors have to be flexible, some people need more and relapses are common. Your GP can't argue with the world experts in PMR. The info for Doctors and from NICE all says the same. rheumatology.org/Portals/0/...

[tangocharlie]

I think the way forward is to lodge a dispute with your GP and ask for a referral to a rheumatologist to investigate if it is something more than PMR. I would scare the GP into action by saying you are worried about developing GCA because of your symptoms and that should frighten and jolt them into doing something. If you're in England you could also ask your GP to contact an enlightened rheumatologist such as Dr Mackie in Leeds or Dr Dasgupta in Southend as it is pot luck around the country whether you get a rheumatologist who knows anything about PMR or not.