PMR symptoms and Steroid sensitivity and withdrawal

[Dresdenplate]

I updated my profile a couple of weeks ago as I am feeling that the PMR recovery plan is not working. I had about 10 days at the beginning of my 15 mg start on prednisolone of feeling that the pain was controlled. After that I experienced a low level of the previous discomfort. I was not advised about how I should feel and how much pain to accept during the treatment period. I assumed this was normal during recovery and after 3 weeks tried the recommended drop to 12.5mg. This suddenly seemed to increase the discomfort so I went up to 14 for a few days then down to 13.5. The symptoms of the steroid sensitivity increased causing a feeling of getting worse not better. The rheumatologist encouraged dropping the dose gradually and agreed that slowly was best, although the GP wanted me to hurry it up. I continued to have PMR pains but persevered with the reduction going down by halves and trying the slow taper advice from HU. The worst steroid symptoms eased but I continue to feel more pain as I reduce. and stayed on 9 mg for two weeks.

The GP recommended that I got down to 8 mg and that the pain was just my muscles getting used to being used again. I know what exercised muscles feel like and it is very different from the PMR pain. I hadn't done anything different but was becoming less able to do actions comfortably. An e mail to the rheumatologist returned a message saying carry on as directed until a telephone appointment. I called them back and eventually spoke to someone who said ' was I having a flare! ' I don’t think a flare would be a continuous deterioration and increased pain so I thought it probably wasn’t. I am waiting for a reply from the rheumatologist.

I have increased my dose to 10 mg for last few days, I am worried about the increase in steroid symptoms but the pain is slightly better but the increased fatigue is still difficult to deal with, not so much to do with sleep but feeling of very weak muscles leading to slow walking and not wanting to do much physical activity.

It is difficult to believe that the NHS cannot help me to feel a bit better. The GP ignores and doesn’t advise on treating any symptoms by just saying that the steroids are causing all this and to reduce as suggested.

I know you all have given advice on treating flares but I am worried about the steroid sensitivity if I go up to the original dose again. So although I am asking for advice and sharing this dilemma I am feeling extremely frustrated and fed up after 6 months of pain and discomfort.

[DorsetLady PMRGCAuk volunteer]

Hi,

Maybe have a look through a couple of links so you can understand your illness a bit better -

general info -

healthunlocked.com/pmrgcauk...

this re dealing with a flare -

healthunlocked.com/pmrgcauk...

Would say your original dose was either not quite enough, or you weren't on it long enough - and unfortunately that is quite common.

Your rheumy gave you good advice about reducing more slowly, and they are the experts, so really your GP shouldn't be intervening and rushing you down. In fact I'd be inclined to try and see another one within the surgery if you can...

Until you get better advice I would be inclined to go up to 12.5 or 13mg and follow the flare protocol - and then you may be able to drop back drop back to 10mg [no lower at the moment] - and hope that will be enough..

After that - only 1mg every 4-8 weeks... or 0.5mg a month... but only if you feeling okay.

.. and please let us know what rheumy says... and there is always someone around to help, so please ask..

[Dresdenplate in reply to DorsetLady]

Hi. Thank you for your advice. I have just written a detailed reply and now it’s disappeared. I don’t know if you can see the replies I have sent to the others. I wary again in the morning.

[DorsetLady PMRGCAuk volunteer in reply to Dresdenplate]

Yes, I can see all your replies…

[SnazzyD]

Hello. The whole story has the feel that you were not on high enough a dose from the start and not held at the start dose for long enough. How doctors can be sooo sure that anyone’s muscle pain is from underuse or PMR, I don’t know, especially when they have a PMR pattern to them. You are only 6 months down the line and a “continuous deterioration” as you reduce is screaming a flare if you do have PMR. Your Pred dose is not enough to mop up the inflammation that your condition is putting out.

Steroids aren’t pleasant and I don’t think it helps that people aren’t told quite how rough they can feel normally from top to bottom. Even my dose of 60mg for GCA didn’t come with a warning and it was implied that I would carry on as normal. The unprepared patient thinks it is out of the ordinary and therefore wrong and that they are disproportionately sensitive. The distress is communicated to the doctor who then reduces faster. It is a familiar story. Doctors who blame Pred for all a patient’s ills that don’t clear up as the dose drops need to question what they are doing.

A quick reduction and yo-yo’ing can set up withdrawal symptoms (not PMR) that can make one feel rubbish. Once under 10mg the patient can then feel the effects of low adrenal function that is made worse by a fast withdrawal. Really they should at least keep to a pace that is in keeping with the patient’s ability to regain cortisol production. If PMR is not totally controlled too it becomes a mess and you don’t know what is what. Do go to the FAQ’s on this page and under A read about adrenals which is essential reading for single digit Pred takers. It may explain some of your problems.

The good doctors listen to the patient and think critically about what is in front of them and then work with the patient. Do you have an alternative GP?

Regards your eyes, one thing to know about Pred is that it can affect your focus, especially change from one distance to another. As your dose changes in either direction this effect changes too and my optician warned me that my glasses might not work properly until I was on very low Pred. He was right. I was not warned about this by the doctors.

I’ve gabbled on enough and there is more to say but no doubt others will cover it better than me.

[Dresdenplate in reply to SnazzyD]

Thank you for your reply. I am not sure if you can see my replies to the others. I will comment again in the morning.

[Orange_2022 in reply to SnazzyD]

Excellent explanation. Spot on!

[Oh-my in reply to SnazzyD]

The only thing I would add on withdrawal is that some people are more sensitive to changes in dosage of Pred than others. Right from the very start I have only been able reduce slowly at half or quarter a mg drop and it’s been and still is uncomfortable every time. As long as it all settles down then all is good for the next drop.

[PMRpro Ambassador]

"I don’t think a flare would be a continuous deterioration and increased pain"

But that is EXACTLY what a flare is when you overshoot the dose you need (the lowest effective dose) and don't rectify it as soon as possible. The dose is no longer enough to clear out the daily dose of inflammation and over time it builds up like a dripping tap will fill a bucket sooner or later. What do YOU think a flare is?

I would say you were never on enough pred for you - you have to clear out all the built up inflammation in the soft tissues and only then can to reduce the daily dose to find exactly the dose that is equal to the amount of inflammation being created, And 10mg is not enough.

There is no virtue being on too low a dose - it has to be enough or the bucket fills up and overflows and that is what is happening now.

Many doctors don't understand PMR but you also have to do your bit. You have to buy the ticket to play the game - the Helpline said you were having a flare but you didn't think you were. I think all of us would agree - you are flaring, you need more pred, and until you accept that you will be stuck where you are now.

Pred is your friend, not something to be scared of and reject. But you have to use it properly, effectively.

[Dresdenplate in reply to PMRpro]

Thank you for your reply. The help line person at the hospital asked me if was having a flare. I don’t think he was qualified to diagnose me but suggested that I sent an e mail to the consultant. The definition of a flare sounded to me like a return or increase of symptoms after a few days of reducing steroids. As my symptoms have never gone away except the first ten days I was convinced by the GP that I needed to push through this stage of reducing and she also said to stop reading too much into other peoples comments. I told her about HU but she didn’t seem interested. The other GPs in the practice that I have seen with 'on the day ' appointments seem to go along the same path or guidelines. My concern about going up on the dose is that I will get the heart pounding and lack of sleep again.

Snazzy D has described my visual symptoms perfectly but no doctor even the rheumatologist could understand what I meant when I described this problem or could say that it was something to do with PMR or steroids so I have been constantly worried that it is something else that needs a diagnosis

I am happy to accept that it takes a long time to reduce the pred I just worry about the symptoms coming back if I add a lot to the dose which were difficult to live with .

I will change my trust in the information from the NHS

[DorsetLady PMRGCAuk volunteer in reply to Dresdenplate]

It is sometimes difficult to tell the differ between steroid withdrawal, and a flare which is why I wrote the post to explain -second link I sent you.

As your pains haven been controlled [apart from initially] then you haven’t been at the correct dose to do that… had you been, you shouldn’t have had them.

As for GP, I’ll refrain from comments… other than to say most people on here know a lot more these illnesses that she does.. and this forum is supported by the charity.. it’s not just a random bunch of people having a chat.

Yes they do follow guidelines, as does the Rheumy dept, but they are just that - guidelines- and they do need to be adapted for individual patients when necessary.

[Dresdenplate in reply to DorsetLady]

Thank you. I’m just about to down the higher dose and try and forget about all the wasted time , onwards and upwards I hope.

[DorsetLady PMRGCAuk volunteer in reply to Dresdenplate]

Good hope it works.. please let us know.

[piglette]

It does sound like you may have a GP who talks a lot of drivel about PMR. Remember they have never had it so do not have a clue how painful it can be. Saying that there are some good, understanding doctors around too. You need to be careful not to bounce up and down on different doses. You need to just reduce slowly and surely and if you have extra pain stop reducing and even increase for a week or two to hit the pain on the head. The others have offered some good advice.

[Dresdenplate in reply to piglette]

Thank you for your reply. I’m not sure how to reply to all three of you but I am taking the advice on board and feel very frustrated that I have wasted 6 months not being on the correct dose.

I’ll reply to the others as well

[piglette in reply to Dresdenplate]

I had the same problem when first diagnosed. I had gone to a rheumatologist privately as my GP kept saying I had a virus. The rheumatologist insisted that I reduce at a rate of knots. I did not know any better and was in absolute agony. I then found a different GP who was brilliant.

[PMRpro Ambassador in reply to Dresdenplate]

Whenever you reply to anyone, DL and I will see it as well as the person you replied to so never worry about that!

[ChrisBeeLoop]

Oh you poor thing, you sound very lost and alone. All the advice you have received in the earlier replies is good and strong and valid. It seems that a lot of GPs and rheumatologists have very little understanding of this disease. I would echo the point that you shouldn’t be afraid of the steroids. They have a job to do controlling the inflammation so let them run. You might also find, like I have , that they deal with other niggles like eczema and minor toothache. Has your GP given you regular blood tests, specifically CRP which if you are lucky will give you an indication of the underlying level of inflammation? And has anyone talked to you about an anti-inflammatory diet? Try reducing your sugar and carbohydrate intake and increase calcium through milk, cheese and yoghurt to mitigate the impact of the steroids on your bone density. But don’t cut the sugar and carbs too suddenly!Finally, I can understand you feel depressed and alone but there are plenty of us out here in this forum and also on Facebook who can offer support.

[Dresdenplate in reply to ChrisBeeLoop]

Thank you for your reply, and advice. It’s all very helpful