How can I recognise a flare during a reduction of my Prednisolone dose?

[SheffieldJane]

I am particularly interested in early symptoms that warn of an impending flare. My Rheumatologist has given me a programme of reduction from 15 mgs. For one month I am to alternate between 12.5 and 15 mgs, then one month at 12.5. Then the same process with 10mgs and 12.5. When I am on 10 mg I am to drop by 1 mg each month.

He diagnosed me with Fibromyalgia in addition to PMR at the same appointment. Some evenings I could cry because I feel so ill and over-wrought and some nights are nightmarish with physical discomfort and well nightmares and frequent waking. I am not however, experiencing much actual pain, my stamina for walking and getting through a day seems quite good, although if I overdo it, the next day is a write off. When I was first diagnosed with PMR I couldn't lift my arms above my head, get out of bed unassisted and the pain was sharp, getting about was a trial. I don't want to go back there. I am wondering if my feelings of being unwell are Fibromyalgia or Prednisolone? How will I know whether to press on with this reduction. I don't think the Rheumatologist imagined that I would do anything other than what he told me to do. What's left of me will see him again in 4 months. What is a flare like? ( Be graphic). Thanks.

[polkadotcom]

To me it is a recurrence of typical (for you) PMR pains which build slowly and then bite. I've always thought it's like a bush fire - unless it's stamped out completely there will be hotspots which will overheat and burst into flame at some point.

Any help? I can try again.

[SheffieldJane in reply to polkadotcom]

Thanks that is helpful. If the rheumatologist hadn't clouded the symptom picture with Fibromyalgia which seems to be a disorder of pain perception and fatigue, hypersensitivity, bowel and bladder symptoms. This effectively gags me about PMR and needing Steroids. I felt wonderful for 6 weeks on Prednisolone, (20mgs) it only took 48 hours to make me pain free and mobile. It's kind of hard to interpret what is happening now. It's like having a permanent virus. I am sure I would recognise the acute PMR symptoms though but maybe not the hot spots stage argh!

[PMRpro Ambassador]

I think it is rather difficult to say since your rheumy thinks you have fibro too - I'd be interested to know why mind you! I had overlaps before I worked out what I had that could have directed the diagnosis in either direction. However, 6 hours after my first dose of 15mg of pred most of the pain and all the stiffness were gone. The remaining pain was bursitis I now realise - also part of the PMR. What wasn't bursitis was due to myofascial pain syndrome - and it too has trigger points which coincide with some of the fibro trigger points.

Did he not try a higher dose? It is possible you just need a bit more to get round the remaining pain which COULD be also due to the PMR and the most recent recommendations for management of PMR suggest going up to 25mg/day if it is needed but not over 30mg. Other than finding a lot of fibro-type pain is left at a higher dose I don't see how he can be so sure you have both - although those who have both do say they are different in character.

A flare while reducing is a return of the symptoms the pred dealt with at the outset and you are looking for the lowest dose that will give you that same result you got with the starting dose. On the other hand - if you aren't on enough to start with, that could mean a fair bit of discomfort.

No chance of a second opinion I suppose?

[SheffieldJane]

Thank you for this. I see that I am going to have to do a lot more research on these conditions. The Fibro diagnosis was not very satisfactory really, maybe just a mopping up of symptoms that didn't fit PMR. I got the Prednisolone miracle though, the only sure thing in all of this. Then the medics make you feel irresponsible for taking it. The Rheumatologist said that it makes everything better, which made me feel like a junkie. Then of course they push the Aldenronic Acid that I know would make me lose the will to live, at the risk of sounding over- dramatic.

Sorry to vent, just fed up of feeling rough and not knowing what to do for the best.

[PMRpro Ambassador in reply to SheffieldJane]

Bah - pred doesn't make everything better - I wish I knew why they think that. It simply isn't true - and it DOESN'T help fibro pain.

I know rheumies who say that too so it isn't just my opinion.

What symptoms didn't "fit" with PMR? There are certainly bladder problems for many people in PMR. What do you mean by hypersensitivity? If it is pain then I couldn't bear anyone to touch certain muscles or my feet, shins and the back of above my ankles, having my BP taken was excruciatingly painful and very often clothes hurt my skin, just like the feeling you get in flu. Everyone is a bit different - and I suspect there is a bowel component for many, I had an allergy problem that started at about the same time which a local coeliac specialist was sure was what is commonly known as leaky gut syndrome and that can manifest in various ways.

I am really well managed - and I still have days when I reel rubbish. Lots of people with PMR don't feel "well" for a very long time - the underlying autoimmune disorder continues while the pred manages the symptoms and IT make you feel unwell too.

What to do now? Get a referral to Sarah Mackie and her team at Chapel Allerton - they are people I would trust to get it right.

And of course you should vent - I would in your position.

[SheffieldJane in reply to PMRpro]

Well that has stiffened my back bone in a good way. Many thanks PMRpro. The hypersensitivity to touch is exactly as you describe. Can you tell me a little more about Sarah Mackie?

[PMRpro Ambassador in reply to SheffieldJane]

medhealth.leeds.ac.uk/profi...

pmrgca.co.uk/content/pmr-re... (about half way down the page)

The department is at Chapel Allerton hospital and Sarah works there and in the Wellcome building at St James's Leeds for the research side. She actively does research herself and most patients with PMR who go to her are invited to participate if they wish.

She is one of just a few consultants in the UK I would choose to go to myself. The other works with her in her OMERACT work (mentioned in the article on the pmrgcauk website). And it is my privilege to be part of that work as a patient research partner - which probably means I wouldn't be able to have them as my doctors...

[SheffieldJane in reply to PMRpro]

Thank you for taking the trouble to do this. I would love to see this woman!

[tangocharlie in reply to PMRpro]

I see her and she's great, though she has a loooooong waiting list. More chance of getting an appointment with her at Otley. She now tells me the PMR (if I ever had it, as I've only been seeing her this year) is now gone. I'm trying to reduce the steroids but as soon as I went below 7.5 mg, even at 7 and now trying to get to 6.5 I've got very stiff again especially hips neck shoulders and feet. I was down to 5mg two years ago but could hardly walk when reduced to 4.5 so ended up going back up to 7.5 which worked. She says to keep going whatever and it's withdrawal pains. I thought it might be a flare but I'm guessing she knows better than I do. Four years on steroids have taken their toll and I want rid of my flabby tummy and face so if she says it's OK I'll go with it. She wants me to switch to Sulfasalazine as she's convinced the pains are due to arthritis, not PMR. I had a very bad reaction to Mtx so am reluctant, but if it'll help me get off steroids I'll give it a go. My ideal choice would just be to get off steroids but am finding it hard to function below the 7.5 level.

[HeronNS in reply to PMRpro]

Thanks for this post PMRpro. Although it's not sunny and upbeat for some reason it's what I needed to hear today.

[miss-philosopher]

Maybe you could try and up the dose of pred a few days to se if it makes you feel better. If not then just go back to the old dose.

[SheffieldJane]

Thank you miss-philosopher, what I am experiencing is tolerable and I am able to function. Perhaps a true feeling of wellness is not possible with Fibro ( no cure or treatment) . Just don't want PMR to become really bad again. I want to get off Prednisolone to get side effects and medics off my back.

[Doralouise77]

I have recently been given a diagnosis of fibro as well , to add to the PMR and GCA, when I started having new symptoms. Who knows? It really doesn't matter because I'm not taking any more meds which aren't guaranteed to help anyway. Also recent x-rays have shown OA pretty well all over. So.....it's a mixed bag sometimes that we have to manage the best we can and having a label doesn't always help. I'm learning that a 'true feeling of wellness' as you say is very doubtfully possible for me anymore but hopefully I can adjust to this new level of 'wellness'. I was not aware of the bowel and bladder issues, which is something else I am experiencing to a distressing degree at times. What next?!?!?! All the best.

Cheers

[PMRpro Ambassador in reply to Doralouise77]

Are you by any chance on omeprazole to go with the pred? That can cause appalling bowel effects - one lady couldn't leave the house! Bladder issues are common with PMR as well.

I wonder how many doctors fall back onto fibro as a get out for many of the effects that are actually due to PMR butt they are unaware of the link?

[Doralouise77 in reply to PMRpro]

I was initially but had my GP switch to Ranitidine some time ago. I'm certainly with the lady who couldn't leave the house and am very concerned and distressed about the bowel issue. I haven't heard anyone else talk about it. My GP just shrugs her shoulders as usual, in other words, it's related to aging or chronic illness or Pred or whatever ....I did think maybe it was related to the Pred i.e. general loss of muscle tone.

[PMRpro Ambassador in reply to Doralouise77]

I think you need to go back and be firm - have you been checked for anything else? PMR can be a symptoms of many things - including cancer, to mention the elephant in the room. I would not accept any doctor accepting such a problem with just a shrug - the distress alone should be a concern of hers. If she won't help - appeal to another member of the practice.

Ranitidine can ALSO cause diarrhoea. What other medications are you on? Alendronic acid can also cause it - and when you are on a cocktail of drugs they can interact in ways that aren't listed anyway.

[Doralouise77 in reply to PMRpro]

I have a diagnosis of colonic inertia of the bowel which is a motility problem and am very prone to obstruction so am plagued by constipation rather than the opposite. For that diagnosis I was looked at inside/out, upside/down by the best of the best and everything is perfectly healthy. The problem with control seems to coincide with the high dose of Pred. Anyway, my GP has been shrugging her shoulders about a lot of things for a long time (and I certainly don't accept that either!) but for the moment let it go because she had just told me that she's retiring thank goodness! but unfortunately that also puts me into the difficult job of doctor hunting. It's very difficult here to just 'switch doctors' as I see so often suggested. It must be nice to be able to do so. We struggle with a shortage especially in the small rural areas where I live and the wait list can be up to a year.

[PMRpro Ambassador in reply to Doralouise77]

Oh yes - well aware of that. But there are usually other people in the practice (supposed to be in the UK since Harold Shipman) and it is your right to see any of them, whatever they may try to tell you.

No doubt the shrugging had a little something to do with "winding down to retiral"..

[SheffieldJane]

Doralouise77 Glad to meet you! I do sometimes feel ridiculously happy though. Life is all about contrasts.thank you for your wise words. I expect that I was just throwing myself at the bars of the cage, rather than enjoying the view. Go well!