Feeling rough

Hi all,

Not posted for a little while but not sure what to do right now.

I've been gradually reducing pred from 20mg in February & reduced fine without any issues to 11mg. I did a slow reduction to 10mg over a month ago with a little discomfort but nothing too bad or that I couldn't handle & seemed to settle ok and my doctor advised me not to reduce any further, to have another blood test and see him again in a month so I've been doing just that. The last couple of days have been awful, pain has returned in back of head, across shoulders and in my hips & thighs, incredible hot flashes & extreme sweating with that awful fatigue & tiredness flooding over me.

I feel so frustrated as things had been going relatively smoothly & this hasn't coincided with any reduction of pred! Does anybody out there know why this could be happening at all?

Pam

24 Replies

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  • Hi Pam, it certainly sounds as though your inflammation is flaring and you need to increase your dose back up to get it under control again. Although you have been lucky to manage to reduce from 20mgs down to 11mgs without any problems thus far, that doesn't mean that the inflammation caused by PMR has gone away. It simply means that the steroids have been controlling it at the higher doses, but that you have gone beyond the dose that is needed to keep the inflammation under control.

    Although I can understand how disappointing this is for you, it is quite common to experience such flares in the first 12-18 months of treatment. Your symptoms sound quite severe and could need a hike of about 5mgs to feel an improvement, and the sooner the better to avoid having to go even higher. You may be lucky and find that increasing to just 12.5mg in the first instance could prove successful. I do hope so.

  • Hi Celtic & thank you for your quick response.

    Should I bump up the dose now or do I need to run it past my GP first do you think? I've been on 10mg now for about 7 weeks but only been feeling like this for a couple of days which seems strange, I thought I'd know if I'd dropped too far within a couple of weeks of a reduction? This is one irritating, annoying & painful illness & I so wish I was more patient than I am as I know many of you have had to be incredibly tolerant over years rather than months. I feel a learning curve coming on 😫

  • Pam, sometimes it is possible to experience worsening symptoms when some flu-type virus or infection is lurking, but your symptoms do sound severe, and if you feel that they are similar to the pain that you felt at diagnosis then it does seem more likely to point to a flare, if my experience is anything to go by. Increasing the dose should provide you with an answer fairly quickly.

  • Then that is what I shall do as yes, the symptoms are all the same as at diagnosis although not quite so severe as they were then.........thank you.......what would we do without this forum?!

  • Good luck, and do let us know how you get on.

  • I will do.......and thanks again

  • Hi Pam , been listening in on this subject , I am in a similar position I am on 14mg at the moment , I started on 20mg and tapered 2mg a month , then 1mg a month to 14mg , since 14 I have had hip pain , groin pain , backache, not like at first but enough to really grind me down , also my headaches are worse, I am seeing a Rheumy for the first time next Thursday, not sure whether to go up a couple of Mg or wait and see what the Rheumy thinks ? Celtic always gives good advise , with my Rheumy appointment coming up I'm not sure what to do .

  • Needless to say for others looking in who know me - I would suggest you have a few sessions of Bowen therapy which is something that a lot of people on all the forums who have had similar problems in hips, groin and back have found very helpful.

    Two things commonly occur alongside PMR: myofascial pain syndrome and piriformis syndrome. They both can cause pain in the same area, both can be helped with Bowen. Another possibility causing hip and groin pain in particular is trochanteric bursitis (bursitis can be part of PMR) - that responds well to local steroid injections, Bowen may help but it is aimed at muscle problems rather than bursitis. All of them will improve, sometimes even appear to have gone, while on higher doses of oral pred, returning as the dose reduces. Treating them separately often means you can get away with a lower dose of oral pred.

  • I had my first Bowen yesterday. Certainly felt light spirited last night and always sleep well. However this morning I felt dreadful..all muscles screaming, tight throat and chest, nausea,headache which is not normal and zero energy. I also have two broken femurs which doesn't help and the legs were more painful than usual. Is this a normal reaction to Bowen? I really do want to give it a go as I have heard such good results. My next session is booked for Wednesday.

  • I wouldn't say it was a normal reaction but it could happen. Did you drink plenty of water after the session? Are you able to walk? My therapist always suggests a gentle walk in the fresh air.

    Do contact the therapist and tell them about your reaction - they may have done far too much for YOU. My therapist is always very reticent about doing more in case I react too much. Maybe you are very sensitive - I have never reacted badly but perhaps I am a bit tough!

    I wonder if anyone else has had such an extreme reaction - you did tell them all about your history didn't you?

  • I am the same as you after Bowen and feel dreadful the following morning. I can only assume its the pain of healing as it rapidly goes away followed by much improvement each day after. I accept it now and still continue having Bowen as it definitely helps me overall.

  • Thanks for that PMRpro very enlightening , I will have to read up on Bowen therapy, I increased my pred by 1mg today and 70% of the pain has died down .i have my first Rhuemy app on Thursday so think I will stay on 15 till I see him and take it from there, thanks again for the info.

  • I was reflecting on it last night. What can happen is that the cytokines that are present in the muscles and causing some of the localised pain due to trigger spots are released into the blood stream - and effectively lead to a bit of a PMR flare as they flood through the body. Once they are out of the system you feel better again - hence the instruction to drink plenty after the session.

    In proper PMR the cytokines are being released every morning which is why you need a daily dose of pred to combat the new lot of morning pain and stiffness. With the Bowen they are released, washed out and are gone until the next session.

  • I find anaerobic exercise is fine weights bit of body conditioning . Soon as I train aerobic I am wiped out stamina is terrible I was the proverbial fit as a butchers dog till April 2015, so frustring . Can you explain why the anaerobic exercise doesn't bother me or cause excessive muscle fatigue . Your thoughts ?

  • Because aerobic exercise by definition requires oxygen and the harder the exercise the more oxygen the muscles require. In PMR the blood flow to the muscles is slowed because the arteries are narrowed by the inflammation. The muscles aren't getting enough oxygen from the reduced blood flow and get tired more easily.

    You will find that if you do a small amount of exercise and build it up very gradually you will be able to do more - just like any training.

    Anaerobic exercise doesn't need oxygen in the same way - it uses what is stored in the muscles. Do enough and you'll run out of that too.

  • Hi Gaz227 and Pam.. I am in same situation. Tapered fine to 10mg then dropped to 9mg. Within about 4 days I felt so bad, my CRP went up and Dr said go back up to 10mg. When on lower doses even a 1mg drop is too harsh for some of us. Through this forum I was sent two tapering programmes. From PMRGCAUK Northeast. These are slow and gentle and mix up old and new dose. I have stabilised now on 10mg and about to start the "Tortoise not Hare" taper.

  • I have been told to not drop more than half an mg at a time below 10mg and I should be OK.

  • I have made a small increase from 14 to 15 but my pain has already reduced by 70%, amazing such a small amount can make such a difference , seeing my Rheumy (first time ) Thursday so will stay there till then 😀.

  • Thank you all

    I do understand the tapering problems & the tiny steps getting down, what is confusing me most is that I have been fine on 10mg for the past 7 weeks & it's a few days ago that this started rearing it's ugly head again, it would have made sense had I been lowering my dose at the time or even recently and I just wondered if anyone else had experienced this?

  • Pam,

    It's as Celtic said, you can bumble along quite nicely at a certain level, which is obviously what you were doing at 10mg, but that dose was probably only just enough to keep the inflammation at bay. Obviously something has triggered it, who knows what! It may sort itself out, but you may have to go up to 11 or 12, stay on the new dose until you feel ok again, and then I would suggest you drop by 0.5mg and use a slow tapering plan.

    I know it's disheartening, but to get low you have to go slow! Good luck

  • Thank you Dorset lady

    I am not the most patient of people which I know will have to change, I have followed advice & gone up by just 2mg this morning & shall stay there until I next see my doctor in two weeks....... Bloods on Monday so I'll see what they say too. Goodness knows what I'd do without this group!

    Have a good weekend all

  • Well - I'm going to mention the elephant in the room no-one else has mentioned.

    Your description of what you are feeling again after so long at 10mg suggests to me that the underlying autoimmune disorder is in full flow again after a relatively quiet period that has allowed you to reduce to 10mg. One in 6 people with PMR go on to develop full blown GCA - and what you are saying could fit with that I'm afraid. You need to keep a close eye on the ESR/CRP levels to be sure the inflammation isn't getting away. Doctor on Monday? Especially if the couple of mg doesn't achieve much.

  • That is exactly what was worrying me as it seemed odd.......thank you for the heads up & I shall ring first thing Monday morning before going to get bloods done. I feel so fed up but I know I'm not alone in that, not looking forward to a busy day at work tomorrow but can't afford not to! Caught between the devil & the deep blue sea yet again

    Thanks again

  • As an idea get bloods done Monday and make Dr appointment Tuesday, then they will have latest ESR/CRP it will hopefully make it clearer what's going on. Good luck...

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