Conundrum

[HeronNS]

So last night I woke up with a headache. I got up, took three extra strength aspirin with lots of water and a little yoghurt and went back to bed. This morning I still have the headache, a boring annoying one, but I do not have any PMRlike stiffness/discomfort. Is what I now experience pretty much around the clock not PMR any more, just old age and osteoarthritis, and should I bite the bullet and carry on with a slow taper? Because surely if the aspirin dose wasn't enough to cure the headache it wouldn't have been enough to deal with PMR?

[DorsetLady PMRGCAuk volunteer]

Hi,

Aspirin won’t do anything for PMR - and if it didn’t do anything for headache, then I’d be a bit concerned. If it was OA related I’d had thought it would have helped - if only a little.

I’m sure you’ve considered it, but could you have done anything yesterday to bring on the headache?

Personally I wouldn’t taper any further until the headache is sorted- it could be the harbinger of something PMR related - I do hope not - but just monitor yourself for a few days.

At times it is very difficult to distinguish between PMR, OA and age related pains!

Might be wise just to get inflammation markers tested to see if there’s any change.

Please keep us up to date.

[HeronNS in reply to DorsetLady]

I get headaches, have done so since about the age of nine, so this doesn't concern me - that's not the question. The question is whether PMR would have responded so well to a moderate dose of aspirin? Yes, I ate something with food colouring in it, and the weather has been changing - both things bring on headaches and I nearly always find that I need more than one dose of aspirin to deal with a headache, which I'm about to take now, or maybe Tylenol.

[DorsetLady PMRGCAuk volunteer in reply to HeronNS]

See opening line - re Aspirin and PMR.

[HeronNS in reply to DorsetLady]

Yes, this is what I thought. So whenever I try to taper now I get an increase in pain and after a few days I step back from the taper, but maybe instead of increasing pred I should experiment and see if an analgesic deals with that increase.... Of course I will not carry on with the alternatives even if they help, they are also very bad for us, but just to see what happens.

[DorsetLady PMRGCAuk volunteer in reply to HeronNS]

Kate says in her book that paracetamol helped with her steroid withdrawal pains. Just as a matter of interest are you using a slow taper - either DSNS or mine? Those should really stop any withdrawal problems, and therefore no additional pain relief required.

[HeronNS in reply to DorsetLady]

I've used dsns since I was at 10 mg in 2015! Have been stalled at 2.5 for months. I was as low as 1.5 about 20 months ago I think. Then flared because I should not have tried to get lower then and have never been able to get back down there. I also think the flare and subsequent increase in dose did a number on my adrenal recovery so I really would like to take less pred if I can. Think I'll see how things go this week.

I always found even when not diagnosed that taking painkillers for headaches did seem to have a slight effect on PMR, enough that I noticed the difference but not enough for me to think it worth risking the side effects of either aspirin or acetaminophen, let alone the Celebrex my then doctor kept prescribing.

[DorsetLady PMRGCAuk volunteer in reply to HeronNS]

TBH 2.5mg is a very low dose- and I doubt it’s doing you much harm - in fact less than the other medications you mention. Perhaps you just need to stick at that for the time being- and accept that is what your body needs.

I know we all want to reduce Pred and eventually be off it altogether, but if a very small dose is holding things together - then maybe it’s wise to stick with the devil you know!

[HeronNS in reply to DorsetLady]

I know what you mean, but I've had more trouble with fatigue since that episode and I really would like to nudge the adrenals.... I'm very careful with medication. This would be more in the nature of an experiment to see what happens, not intending to substitute anything for pred I may still need. After all, if aspirin helps then it's likely it's not PMR which I feel!

[Sandradsn]

I woke in the night with a headache last week,even the pillow hurt it.It lasted for 2 whole days,I took paracetamol and they didn't make any difference.I had slowly tapered pred by 0.5 ,whether it was that who knows😝.! I'm fine now.

[HeronNS in reply to Sandradsn]

I get headaches and the question really is about whether PMR would respond so well to a headache-dose level of aspirin, or is it only the inevitable discomforts of old age, including osteoarthritis? I which case I should feel more comfortable about tapering.

[PMRpro Ambassador in reply to HeronNS]

Personally I doubt it. But who knows.

[SheffieldJane]

Oh dear! That is a conundrum! I have PMR and some form of headache most days. I also have cervical spondylosis which maybe a factor.

You haven’t been varnishing floors or some such activity. Sometimes we miss the ordinary with this disease. If it doesn’t clear soon I would talk to my GP. You may even be getting a cold. Halt the taper and watch and wait I think. Cool flannels, tiger balm?

[HeronNS in reply to SheffieldJane]

I did learn last spring that the headaches I was waking up with then were almost certainly caused by too little salt, I know I've posted about that a few times. But last night I suspect I reacted to a delicious cookie which had been iced with pink icing. I often can trace a headache to having ingested food colouring and I really knew better, but I thought it would be all right. In fact my first three (recognized) migraine headaches all occurred after drinking an ice cream soda. An ice cream float never caused the same reaction, but after the third soda I saw the pattern and never had another one. The soda I think had a liberal squirt of food dye in it, maybe other ingredients too, whereas a float was simply a scoop of vanilla ice cream in a glass of 7-up. Oh, those were the days! But to this day I avoid flavoured coffees and teas and even apple juice, because I suspect them all.

[Megams in reply to HeronNS]

~Oh yes, food colouring absolutely a "no no" for migraines - not worth the pain despite how yummy & enticing iced cookie looks.

If I ever make it to Heaven I want to feast continuously on icecream & carrot cake smothered in thick frosting

[Maisie1958]

Hello HeronNS -no advice sadly but thank you for asking this question. I think I was diagnosed with PMR around the same time as you and I admit I don’t tend to take any aspirin or paracetamol when reducing-but maybe I should rather than stopping my taper or increasing the prednisolone. Mind you I usually get night sweats and fatigue as an early warning of a flare rather than pain and I presumed paracetamol wouldn’t help with the tiredness-it didn’t in the early days but then the Pred didn’t do much for that either. Sorry that’s a bit garbled.

Maybe I need to rethink and not assume it’s always PMR rather than the years going by?

Thank you and for the responses x

[PMRnewbie2017]

Dear heronNS. You are posting something I have been observing for a few months now. I was going to wait a bit longer before sharing my experiences but perhaps now would be a good time to share.

I "feel" as if my illness has burned itself out. This is quick (Diag PMR GCA Nov 2017). My symptoms have always followed my ESR and CRP readings which are, and have been 10 and less than 5 respectively for the past 12 months. I am now on 5mg Pred. I taper slowly and judge if I am going to speed up the reduction in dose. Whenever I reduce (even if it's only by 0.5mg) I get very stiff muscles, shoulders and hips for about three days and then it improves. In the early days I thought this might be a flare. I now know different as I have learned that a few doses of ibuprofen or paracetamol cure the discomfort and stiffness immediately.

Chatting to my Rheumy we agreed that it is very hard to distinguish between a flare and steroid induced muscle pain and myopathy. If analgesics stop the pain and stiffness it is not the PMR, because that is mediated by IL6. Generally speaking pain is mediated by different cytokines, thromboxanes and prostaglandins. (I am making this as simple as I can!!)

For me, now that I'm not fuelled by higher doses of Pred, all my old aches and pains from playing lots of sport and falling off horses are resurfacing. Plus I'm now 61 so I accept I'm not as flexible as I once was and yes, I tire more easily. That's normal, and if you knew what I do in a day you'd say "I'm not surprised".

I can't give you an answer because I've learned we are all so different, but this is what I've discovered about me and the way the illness affects me.

[HeronNS in reply to PMRnewbie2017]

Thanks for this. One thing I've found on these sites is a reluctance to encourage people to continue tapering even in this sort of situation, and in fact the dead slow method was designed to avoid the steroid withdrawal - but it doesn't address the reappearance of old aches and pains or even the development of new ones, which one should not rely on pred to control. I took 2 mg again today, no extra analgesic, and will simply go day by day according to my symptoms. So far I feel no different than I have for months, no better, no worse. So we shall see....

[PMRnewbie2017 in reply to HeronNS]

I agree. I've done it myself in the past and increased my pred because I thought my illness was not controlled. Another interesting thing my Rheumy said was the illness is put into remission fairly quickly by the steroids. It just takes a long time to get off the steroids which is why they keep pushing us and that's where the 2 year statement comes from. Now everything is relative and until IL 6 levels can be measured we can only rely on symptoms and I think this is where it becomes difficult. I loved the ache free body that came with pred. I felt young again and so flexible! Sadly reality is somewhat different.

[PMRpro Ambassador in reply to PMRnewbie2017]

Well he is wrong - all the pred does is relieve the symptoms by combatting the inflammation that is being created. It does nothing to the underlying autoimmune cause of the problem. It is perfectly possible to measure IL-6 levels but even they are not foolproof since some people with imaging-proven PMR don't have raised IL-6 levels.

[HeronNS in reply to PMRnewbie2017]

Well the last few times I've attempted a taper I've found I reacted badly to even one lowered dose. So I would go back to the previous dose (only .5 mg difference) and wait until I felt ready to try a taper again, often several weeks. It was just happenstance which made me think perhaps I just needed a little help to get over the hump and continuation of a dead slow taper might work. So that's what I'm trying. I'd really like PMR to be in remission but sad experience over the past two years has made me super cautious.

[PMRpro Ambassador in reply to HeronNS]

I do find it takes at least 3 challenges with the new dose for my body to get the idea - it always has done. And you are low enough for it to be a significant % change now.

[altywhite]

Hi Heron, I used to get regular headaches pre GCA and I feel like they are resurfacing as I try to get down to 5.5mg. Mine are definitely not the GCA headache, just a dull horrible thing, which does respond to 1G paracetamol and 200mg Ibuprofen with a bit of good old yogurt and usually about 3am!!! I'm actually also putting mine down to a virus that has been hanging around for far too long, or I'm testing a theory that it might be chocolate related....I really hope not!!!! Or maybe I'll just try and change my pillow!!. Hope it all settles down.

[HeronNS in reply to altywhite]

Thank you. With another change in the weather the headache went away. Although I had a touch of the Deathly Fatigue this morning and when I went for my walk wondered if I'd be able to make it home - walking on snow is surprisingly hard! I never noticed before just how difficult it is. Sign of age or just PMR/pred?

[altywhite in reply to HeronNS]

Ah, the dreaded DF!!! The snow thing may be a bit of both...we really don't get enough of it here to make walking that difficult!! It must have been the DF this time! Glad the headache went away though.