Backward steps!

Hi

Last time I posted had been without pred for 8 weeks after 3 years of dead slow reduction and was hoping some morning aches were not the onset of a flare. Disappointingly 2 weeks later came the familiar upper arm pain with restricted movement. I resumed with pred and was surprised that a mere1mg was sufficient. Another 2 months on and I am experiencing same upper arm problems mornings. Reluctantly Intend to increase by 0.5. Is it mistake to use "Dead slow "increments or Is it advisable to go on back to a higher dose? How long should I wait before attempting to reduce again?

13 Replies

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  • What you are looking for is the lowest dose that manages the daily emission of cytokines that is the cause of the inflammation and pain/stiffness in PMR. I think of it as a dripping tap into a bucket and if you had a pretty empty bucket when you stopped the pred altogether it would take a while to fill up and spill over. It's disappointing - but if 2mg is enough to keep it where it is, it is a VERY low dose. There are doctors who will tell you it can't be doing anything - but there are plenty like you who discovered they were fine at 1mg but not at zero.

    I am increasingly convinced that the activity of the underlying cause of PMR cycles - and you may get off pred at a low point of its activity only for it to increase again sooner or later. That may be what is happening now - but I can't see any point really in using more pred than you need. It does nothing for the actual disease, just the symptoms.

    Did your ESR/CRP ever tell you anything? Have you had them checked?

  • Thank you so much for some needed reassurance and your insight. I am one of the awkward few who never had raised Esp if when almost totally immobilised at onset. Pred fortunately worked really well for me and I have more or less self managed via repeat prescription facility and all the information learned from everyone here. Both my previous and current health centre seem to function almost totally with temporary registrars,impossible to see same person twice or anyone with experience of PMR.My main setbacks were 2 nasty episodes of myofascial pain syndrome. I only recognise what they were through this forum, GP and physio assumed trapped nerve

    Because my journey has been mostly good And I was so careful with reduction I was perhaps a little too optimistic on reaching zero Am happy to remain on a low dose if it keeps me active and really appreciate the advice and support of members here

    Just a little note on triggers of PMR .Mine definitely arose during a period of extreme stress in my life

  • It is a pest when we don't behave like the rest isn't it - I resented my rheumy here ordering ESR/CRP tests because we have to pay the cost of any blood tests we don't get an exemption for, PMR doesn't appear on any lists and mine has never got out of single figures so it was useless. Hence the 5 years hiatus before it was recognised.

    Strangely, although I didn't have myofascial pain syndrome as a noticeable extra at the start, it was MPS that figured front of stage in each of my flares. Now I get quite antsy when the first signs of MPS appear...

  • PMRpro,

    You mentioned above that prednisone does nothing for the actual disease just for the symptoms. So does that mean if polymyalgia rheumatica is going to continue to progress that the prednisone will not actually stop the progression of the disease? If so then the only point in trading the misery that comes with prednisone side effects for the misery that comes with PMR is what? Just asking because I have had such bad side effects with prednisones in the past that I don't know if it's worth taking it while I am miserable with my pain as well.

  • I had 5 years of PMR without pred - nothing I have had with pred has ever made me feel I wanted to stop it and go back there! And I have had some delightful pred side effects when I was on Medrol: massive weight gain, hair and skin that went mad and a BEAUTIFUL black beard. Very fetching! Switching to a different form of corticosteroid has dealt with all those - but nevertheless, I love my pred!

    I don't know whether you can say PMR progresses or not - although the stiffness and pain can and do build up and you can get to a pretty unpleasant state. Some people with unmanaged PMR end up immobile: Celtic on this forum was pretty much confined to bed when she wasn't diagnosed and required ambulance transport to get to hospital appointments. It resolved after a year or so and then returned some time later - but as GCA. Mine wasn't that bad originally but it required a lot of lifestyle changes, if I couldn't drive there and park within 50m I couldn't go. Pred has changed all that.

    And certainly, if you are going to develop GCA the dose that manages PMR often is not enough to prevent GCA - whatever some doctors will try to tell you. However - some experts feel that there is a higher risk of developing GCA if you have PMR and it is not treated at all. That is disputed but for some people who have GCA affecting arteries other than in their head, the PMR dose will often manage it. The risk and need for high dose pred is when the GCA is putting vision at risk.

    As an addition, not taking pred leaves the inflammation rampant in your body. That increases your risk of developing various cardiovascular diseases and even some cancers. If nothing else, the right dose of pred reduces that risk to some extent. That isn't my theory by the way - it was the opinion of a top German cancer expert.

    I suppose it has to depend on how miserable the pred makes you - what are your side effects?

  • In the past when I took prednisone the side effects were irritability muscle weakness and I always felt like I was catching a cold. The problem with the side effects if I'm still working and being emotionally unstable could definitely cause me to lose my job. Plus I'm pre-diabetic and I'm afraid prednisone might push me over that cliff. it seems like a lot of the people on here are on Prednisone but still have pain and problems functioning so it doesn't seem like it makes a huge difference. When I took it before even though it was not high dose I still had pain and some stiffness so I probably just needed a higher dose. I've got 3 different diagnoses and only one rheumatologist thanks it's PMR. another thinks its fibromialgia and another thinks it's hypersensitivity syndrome. I guess if I take some serious prednisone and that's all the problem then that definitely points to PMR

  • I too find it interesting that so many people still seem to be suffering even with sometimes moderate to high doses of pred for months. Does that mean, perhaps, that there's more going on? Certainly I don't feel as terrific as I did when starting out at 15, and the general malaise I've felt for several months hasn't helped. But there's no way I'd go back to pre-pred days when I was losing my ability to drive, even, because I couldn't turn my head enough to look out the back window, for example. Or took half an hour to get up from the floor when I ventured to do my back exercises. Or had to plan every move in order to get out of bed or climb out of the bathtub. No, I'll reluctantly accept some muscle weakness and fatigue in exchange for being able to move and get about without pain, and at my current low dose the more serious side effects seem to have gone.

    But, jwb43, are there not some other steroids which people can take instead of prednisone, hydrocortisone for example? I understand it's not as convenient but apparently it does work and maybe spares the patient some of the side effects prednisone causes?

  • It is beginning to be thought by a few experts that there are different versions of PMR - that probably align with the time we spend on pred: a short sharp 2-year version, a longer one, up to about 6 years and a potentially lifetime form.

    And as I say - everyone is different in how they respond to various forms of corticosteroid - potentially they are all the same, the only real difference is how long their antiinflammatory effect lasts. It's the patient who is different.

  • If pred works to reduce the pain significantly - it ISN'T fibromyalgia. That is easy enough to rule out! I am pretty much pain-free - but not everyone is. You may also have what I call add-ons - myofascial pain sybdrome, trochanteric bursitis or piriformis syndrome, I'm sure there are others. They are very often found alongside PMR but don't respond to the oral pred as well as PMR does. Deal with them more directly and the PMR often appears to improve a lot.

    The potential side effects of corticosteroids are much the same - how YOU will react to various ones may vary. I was great on both the forms of prednisolone I was on, I'm great on the form of prednisone I'm on currently. Medrol (methyl prednisolone) was awful - it didn't work even at 20mg and caused awful side effects I didn't have with the others. I could feel it was different in some way after a couple of days, long before the beard and weight gain appeared!

  • Very good info. Thanks. I have never tried any thing other than methylprednisone. So I guess I could try the regular prednisones. Also I did not know you were still taking steroids I thought your PMR was cured?

  • Me? Cured? No such luck - and pred doesn't cure PMR, it just manages the symptoms. There is no cure for PMR. I've had PMR for 12 years, I have been on pred for over 7 years. I feel well, I have a normal life - being on pred doesn't bother me in the least!

  • You are one of the blessed ones since pred does not give you a lot of other problems to deal with. I have heard that 75% go into remission after pred for 2-6 years.

  • Probably from me! I'm part of the other 25% though it seems!

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