Some advice needed please

[mamma1027]

Hi dear friends, looking for a little advice. I have been tapering as per my gp's instructions and yesterday was my third day on 15mg down from 20mg. Started to feel a little niggle in my neck yesterday afternoon, and an ache in my left thigh. By about 1a.m this morning I had the good ol' bilateral pain and slight stiffness in shoulders, biceps, hips and thighs. Now it's my understanding that this can be expected from time to time as you taper, so I want to persevere with the 15mg and not go back up to 20mg if I can avoid it. My question is how long, in your wisdom, should I give it to see if it settles back down? I only ask because I am going away for a short break next Monday for five nights so want to be as 'fit' as possible (hahaha).

[PMRpro Ambassador]

If pain starts quickly after a reduction and improves over the next couple of weeks it was probably steroid withdrawal, if it takes a bit of time and then gets steadily worse then it is more likely that the dose is too low for you at the moment to control the symptoms.

However - PMR and pred doesn't work the same way as most things and pred - you cannot do a fast taper. No reduction should be more than 10% of the current dose and many people can't even manage that. To reduce from 20 to 15 in one go is daft - it's a 25% drop.

If you are trying a reduction in a drop overnight, so to say, it is also a good idea to keep a very low profile for a week or so after the reduction to give your body a chance. Never reduce when you have something energetic planned you can't avoid or when going on holiday And many of us feel a 1mg at a time drop, spread over weeks works far better - and so now do a few doctors - info if you are interested.

How long had you been on 20mg? Because that is also relevant.

[mamma1027 in reply to PMRpro]

Hi PMRpro, I've been on 20mg three weeks

[PMRpro Ambassador in reply to mamma1027]

Hmm - I hope your GP isn't setting you off on a fast taper. You really need about 4-6 weeks at the starting dose to get the inflammation fully under control before starting to look for the lowest dose that controls the symptoms. The pred hasn't cured anything, it never will, it is just suppressing the inflammation to let you live a decent life until the underlying autoimmune disorder burns itself out and goes into remission. Unfortunately many GPs don't appear to be aware of that.

This paper explains a good approach though some of us think an even slower reduction is better and a few doctors are also coming round to our way of thinking:

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

If you can't get to your GP I would suggest trying 17.5mg first to bridge the gap between 20 and 15 - you'll have 5mg tablets and you should be able to get a pill cutter at any pharmacy to make it easier. A group of us have advocated 1mg drops, spread over weeks, and it works well - mostly avoiding pain returning and saving you wondering whether it is the drop or the PMR.

I'll send you my version of you like.

[mamma1027 in reply to PMRpro]

When I was initially diagnosed on 10th April, the gp put me on 30mg (double the recommended dose I have since found out) and had me on an 18 day taper to zero! Three doctors later, the gp I'm seeing at the moment is more aware of the recommended regime, hence wanting to get me down to 15mg and to keep it at that for several weeks, but he is still sceptical as to whether I have pmr due to my age and blood results, this despute having had duch a good response to pred. I'm at the surgery for my third blood test tomorrow (all have been negative so far) but will not be able to see the gp as he is away. You just sometimes feel like you're banging your head against a brick wall

[PMRpro Ambassador in reply to mamma1027]

How old are you then? I was 51 when mine started and I have NEVER had abnormal blood results. However, I responded to 15mg pred in 6 hours - I could walk down and up stairs without stomping one step at a time. That was enough for the enlightened GP to agree PMR was most likely. Some people simply never develop an acute phase response (the posh name for the ESR and CRP being raised).

I have said for a long time the name is wrong - and at least one medic doing major research in PMR agrees with me. PMR is the name for the symptoms, the clinical picture and is not the underlying cause, there are several of them, some nastier than others and the job is NOT to look repeatedly for ESR/CRP to be raised but to rule out all the other options. If it isn't cancer, vit D deficiency, an obvious arthritis with positive bloods (they are almost never positive in PMR) then try a pred sandwich - a week of vit C, a week of 15/20mg pred, a week of vit C. If the symptoms reduce noticeably on starting pred and then return over a similar period when you stop it you can say that, without doubt, this is a pred-responsive form of PMR. Job done, you have a diagnosis, you have ruled out other nasties and your patient can get back to life with fewer complications and less pain until the autoimmune cause dies down - and they are also at a reduced (but not excluded) risk of developing GCA.

I really fail to understand why they get their knickers in such a knot about a patient who is pain that responds to pred at that level. If you needed higher doses for a long time then I do get the problem - but starting with a moderate dose and then reducing steadily in VERY small steps until the lowest dose is found works for the majority of people who have tried it. Some even get straight off pred in a couple of years by doing that. Which suggests to me that the primary problem is this approach with big changes of dose: never mind looking at expensive fancy drugs that the GP will say are too expensive, use the pred optimally. But thus far NO ONE has done that - until a load of older ladies came up with the idea from observing a patient population and their experiences and using common sense. A Swedish gentleman started it to get below 3mg after failing x times. We believe using it from the outset is also very helpful.

My brick wall was the rheumy - PMR wasn't sexy enough for him to direct his attention to it. He wanted it to be some other inflammatory arthritis, wouldn't listen to my diary of response to pred, and I was to take sulphasalzine - luckily I was about to move to Italy and the rheumy here was happy enough it was PMR so I've never had much of a problem since. And by going 1mg at a time over 4 or 5 weeks I have got to 5mg after always failing to get under 9mg. I'm working on 5 down to 4 at the moment - but the weather keeps changing and rain always makes me stiff! Is it the weather or is the 4mg??????

[mamma1027 in reply to PMRpro]

Hello again PMRpro. I've just turned 49. I'd been having stiffness on and off for several months when I look back, but having fibromyalgia already I just thought I was having an increase in symptoms of that. It was when I woke in the middle of the night back at the beginning of April feeling like I was literally seizing up that I knew something else was going on. Went to the docs, he thought it was a fibro flare, so put me on ibuprofen but wanted bloods done. Went back a week later, saw a different doc who, when I described my symptoms, decided to go by those instead of the blood results, and started me on the 30mgs of pred, tapering by 5mg every three days to zero. Went for a follow up a week later and saw my named gp who dismissed pmr out of hand as I have fibro (something up until that point she had always questioned me on everytime I saw her, and everytime I told her I was diagnosed by a rheumatologist) and it wasn't until I burst into tears, emphasizing the fact that my symptoms had improved on the pred that she relented and kept me on them, but with an even faster taper of 5mg redcution every two days!!! She also sent me for more bloods. One week later saw the gp who made the initial diagnosis, he put me back on to 30mgs for another week then reduce by 5mg every 7 days. When I went for my next follow up I saw the first gp who had thought I was having a fibro flare. He is keeping an open mind as to the pmr diagnosis saying he couldn't say I do or don't have it (even though I had such a good response to the pred???) and is referring me to a rheumatologist. His thought process is that the 30mgs was far to high a dose to start, hence getting it down to 15mgs and taking it from there. I took a copy of the recommended tapering regime with me that you had previously pointed me to, but he didn't even look at it as he says he is very aware of pmr and its treatment. What I think I am finding with every gp I have seen, including the one who diagnosed me in the first place is that a) they are not used to seeing patients with this disease who are under 70 and b) they seem clueless when it comes to the dosage and length of time for treatment. I'm just hoping that when I eventually get to see the rheumatologist he is willing to treat the symptoms and not just go by whether I tick the boxes. I should be seeing the same one who diagnosed my fibromyalgia - just hope that doesn't cloud his judgement. Hey-ho, I'm sure I'll get there in the end

[PMRpro Ambassador in reply to mamma1027]

Pred doesn't do anything in fibro - it is one way of distinguishing them. I do hope you get a broadminded rheumy - mine here in Italy was fine though more interested in practising his English! My GP worked in rheumatology and she is brilliant. How arrogant - the paper is from someone who has forgotten more about PMR than most GPs have ever known!

Before PMR was plumped for I suspect many GPs would have suggested fibro for me too - quite a few pain points overlapped and it wouldn't have been unreasonable although I didn't have enough pain points really - but I did have others!

I do hope it all settles down and your GPs become a bit more empathetic!

[mamma1027 in reply to PMRpro]

I have argued this with two of the gp's - pred would not affect fibro. I wish they'd get off their high horse and do a little bit of research. If we, the patients, can find out so much information on the internet, and valid information at that, then why can't they? Ah well, we shall see what happens. There's a waiting time of roughly 26 weeks to see a rheumy at the moment, so when I do get to eventually see him I'm hoping the evidence of my pred response will go a long way. Just got to hope that the gp doesn't let me down in the meantime. God bless xx

[PMRpro Ambassador in reply to mamma1027]

Except if you are still on pred there won't be much in the way of symptoms to display will there? Yup - with you all the way there! Good luck.

[Celtic PMRGCAuk volunteer]

Hello mamma1027

You're right in saying that there can be sometimes be recurring pain for a few days following a reduction in dose. However that pain usually starts almost immediately and after a week or so tends to disappear again - it is just what we term steroid withdrawal pain. If the dose proves to be insufficient then a real flare can occur but tends to start a week or so following the reduction.

You don't say ow long you were at 20mg, but not remaining on the starting dose for long enough can also be a factor.

If I am correct in understanding that you have reduced from 20 to 15 in one fell swoop, then that can induce a flare. If you had reduced by a smaller amount, to say 17.5mg, then you probably would have been more successful. If I were you, I would quickly increase the dose back to 17.5 and see if the pain improves. If not then it will mean returning to 20mg. It is always preferable not to make any reductions in dose just before a holiday as travelling in itself can be stressful to our bodies.

I do hope the increase helps and you will soon feel better again.

[piglette]

My rheumatologist did the same. I started on 20mg and then three weeks later he wanted me down to 15mg, it was a total disaster in my case and has taken over three months of upping and downing. I was totally naive about everything at the time. During that time I found this board and tried PMRPro's slow reduction which worked really wel and ignored the rheumatologist. In fact if I had done it initially it would actually have been faster.

[mamma1027 in reply to piglette]

I think it's high time the 'experts' started to listen, and I mean REALLY listen, to us patients.