PMRproAmbassador5 years ago

Symptoms always trump blood markers - up to 20% of patients never have raised blood values at all and a lot of people find they don't go up when they are still on pred even when the symptoms return. No-one knows why, it is just so.

There is no virtue in taking too little pred to manage your symptoms - you need to have a benefit to outweight any downsides of pred, which are far fewer at this sort of dose than a lot of doctors think! Nor is it a good idea to try to tough it out - all that happens then is that the dripping tap of inflammation builds up until you have a good-going flare and need a lot higher dose to get it under control. The pred hasn't cured anything - it is just manageing the daily dose of new inflammation so you have fewer symptoms until the underlying autoimmune cause of the symptoms we call PMR burns out and goes into remission.

RedMaple in reply to PMRpro5 years ago

Hi PMRpro, thank you very much for your reply. You answered the question that my specialist didn't answer. I will pay more attention to the pain instead of the blood test results.

By the way, I read your post about the almost non-existing side effect of pred. It really eased my mind. I decide to take enough pred as long as it needs to get my inflammation under control. Thanks.

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DorsetLadyPMRGCAuk volunteer5 years ago

Hi RedMaple...and welcome

Firstly I would say that as you are only about 8 months in then your PMR is still active, so you may well have gone below the actual level of Pred you need on a day to day basis.

As you know you are given a larger amount at outset to really dampen down the built up inflammation, then you need to reduce to find the level you actually require. Go too fast and you may go below that figure, that sounds like your situation.

In all reductions you should really go by how you feel, but also noting the blood results (these can sometimes linger behind symptoms so are not always a 100% reliable but just a guide). Plus your bloods should be around the normal range, that means the Pred is keeping the inflammation under control, it doesn’t mean your PMR is cured, it’s not.

I always stayed at each dose for about 4 weeks and then reduced if no symptoms. I know many plans says stay at a dose for two weeks, but I don’t think that’s really long enough, it can that be that long before symptoms of a flare show.

At 8mg you are entering the level where your own adrenal glands need to think about working again, and many find that a difficult time.

Sometimes it’s difficult to know what is steroid withdrawal pain, and what is a flare, but I would say if you have pains straight after a reduce for a few days then it’s withdrawal, it the pains come a week or so after a reduction then it’s your PMR and you need to increase.

Personally I would go back to 10mg for a week or so, get pain free and then maybe reduce more slowly in future. 1mg, or even 1/2mg a time. There’s no rush....the minimum time for PMR is 2 years, for most it’s nearer 3-4 years.

Have a read of this it may help,

healthunlocked.com/pmrgcauk...

RedMaple in reply to DorsetLady5 years ago

Hi Dorset, thank you very much. Before, I had no idea what is the difference between withdraw pain and PMR pain. My pains kicked in not at the first few days into my 8 mg, but getting worse up to today the third week after decreasing from 9 mg. I am considering to take one dose of 15 mg, then settle down at 10 mg for at least 2 weeks. If the pain disappears, I will reduce by 1 mg every 4 weeks. As you indicated 8 mg is a critical point, I may have to stay at 9 mg longer (8 weeks?) and do the 0.5 mg steps.

Many thanks.

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DorsetLadyPMRGCAuk volunteer in reply to RedMaple5 years ago

Yes,

Do what suits you! But as I said there is no rush. PMR will stay as long as it wants, not what the doctors want, nor me, nor you! And all the time you have PMR you need the correct level for you.

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PMRproAmbassador in reply to RedMaple5 years ago

When it takes a few days or even more to appear and then steadily worsens - it is a flare. If it happens quickly and then improves over the following day - probably steroid withdrawal.

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RedMaple in reply to PMRpro5 years ago

Thanks, PMRpro.

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Hollyseden5 years ago

I've found this thread interesting. I'm also tapering between 10 + 9 using Dorset Lady's schedule. Into 3rd week and have been having shoulder pains often and hip pain occasionally. For now I don't know whether to blame steroid withdrawal or flare or just this blinking really cold weather and snow etc. For now, I'm continuing with taper, using a heatpad on my shoulders and sometimes taking cocodamol. Hoping it's just the cold weather to blame. Fingers crossed. Happy and healthier New Year folks 😊

DorsetLadyPMRGCAuk volunteer in reply to Hollyseden5 years ago

Hi Hollyseden

If you have a stutter on my plan you can always repeat the previous week - for example week 2 again, or even go back to week 1.

As you say it could be weather etc, but as I said to RedMaple there is no rush- and an extra week now may save more later on!

Take care.

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JulieR25 years ago

Hi there I am sure you will get lots of evidence based advice from lots of people. For me I have always had some stiffness as I reduced. Sometimes I have had to go up a mg. I am now down to 4mg. Bloods normal throughout but I still feel like I have done a gym workout every morning when I wake up before I get going and take my prednisolone. I am 52 was diagnosed feb 2017 and have not suffered nearly as much as some. My weight went up but that was due to too many holidays and eating I am trying to fight that one now.

As everyone will say it’s not a race and I just go up one mg if things get too much and reduce from there. But everyone is different. So I always go on how I feel as I have to live and function! Good luck!

RedMaple in reply to JulieR25 years ago

One thing not too typical for a PMR is that I don't have obvious morning stiffness, although sitting with the same position for long enough (~30 minutes) I will fill a bit stiffness which goes away after a few minutes moving around.

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Nagswoman5 years ago

I have been reducing by 0.5mg per month for a year now, rather than the 1mg that you are tapering. I get pains for a few days but by the middle of the month I am OK. I have been on 5mg since 1st Jan. This month is slightly different. I got the early in the month pains as usual, which went, but for the past 3 days I have more pain than normal. Since the 18th. I am 19 months into preds now. It is worth doing the 0.5mg monthly taper. I expect I am now at my "level". Do I go to 4.5mg next week? Do I stick at 5mg?

RedMaple in reply to Nagswoman5 years ago

I am with this forum for just a few days. From what I read, it seems pred is to control the accumulation of the inflammations while the recovery is total by your body, independently. So, I think the tapering process is only for you to avoid taking too much pred. In my opinion, when you reach the right pred dose, even a 0.5 mg tapering might be too much if your body is not ready. Please comment if this is wrong.

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PMRproAmbassador in reply to Nagswoman5 years ago

If you have returning pain that could be PMR - do not reduce any further at present and you may need to go back. The early in the month pains are steroid withdrawal, even at such a small step, it is still 10% of your current dose now. These pains are possibly, even probably, a flare as there has been time for the inflammation to build up to a level where you notice it. If you reduce again it will flare properly - and, as I say, it sounds as if the "lowest dose that managed the symptoms as well as the starting dose" was 5.5mg. Even 1/2mg too low is enough to let in a flare eventually - the dripping tap of inflammation will fill the bucket and it will still overflow. It just takes longer to get there.

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Hidden5 years ago

For me it is usually obvious whether its pred withdrawal or one raising it's head because dose too low. Right Shoulder pain next day for 2 to. 5 days withdrawal. Leg and thigh pains in week 2 PMR. I am sure everyone different but good to recognise your own responses. When I first reduced I panicked when shoulder hurt and stopped taper. Tried again a week later same again. Took plunge and waited and tolerated pain and it went. I write things down with my daily insulin details so I can track it effectively. That said I find I can only drop by 0.5mg but happy to do so. Doing stop every third week at the moment. 🌻

powerwalk in reply to Hidden5 years ago

I'll try keep this short - has a doctor said that your leg pains are due to PMR? I ask because I have severe leg pains - which go away with the pred - when I was off it for a few weeks - on Consultants instructions - the came back really severe (along with the arm pains) - but no acknowledement is made from my GP or Consultant that the PMR is the cuase. They insist its fibromyalgia - but then look blankly when I tell them the Pred makes the pain go away (Pred is not supposed to work on Fibro). And it did from the very beginning of my treatment with Pred. Just wondering if a doc has actually confirmed that your pain i the legs is PMR?

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Hidden in reply to powerwalk5 years ago

Yes but they focussed more on shoulder and arms. Just seen a different rheumy an hour ago who accepted my.thigh pain is PMR and is my sign that I have reduced too quickly. Ithink for me the test was pred treated it. I really think you need new GP. They seem to ignore symptoms. Maybe letter to practice manager saying you feel symptoms are being ignored..especially when pred worked. I still have my fibromyalgia tender points. At the end of the day pred doesn't treat fibro.

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powerwalk in reply to Hidden5 years ago

Wow - how can they all differ soooo much!!!! Its like Russian roulette! Thank you.

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Hidden in reply to powerwalk5 years ago

I don't know. He was brilliant this morning. Said to go as slow as I want tapering. Discussed low carb diet and I said how this group share that mantra. Couldn't believe it!!

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Hidden in reply to powerwalk5 years ago

Even red top newspapers report pmr causes unbearable leg pain!!

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powerwalk in reply to Hidden5 years ago

good lord! Could explain a lot of my issues. Thank you.

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PMRproAmbassador in reply to powerwalk5 years ago

The worst pain I had was thigh claudication when I tried to use the cross-trainer in the gym for more than about 30 secs! Where any doctor gets the idea from that PMR doesn't affect legs is beyond me! Or that BOTH hips and shoulders must be involved - everyone presents a bit differently but the one common factor is: a moderate dose of pred improves the pain and removes the stiffness.

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RedMaple in reply to Hidden5 years ago

I wonder if one takes smaller enough steps, say 0.25 mg, will there still be the withdraw effect? I bought a scale with a resolution of 0.01 gram for less than $10. My 1 mg tablet is about 0.06 g. So a 0.25 mg step is achievable.

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Hidden in reply to RedMaple5 years ago

I am sure it would help people who struggle. In fact I think someone on the forum has spoken of doing .25mg. I would certainly try it if I start to struggle at .5mg.

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PMRproAmbassador in reply to RedMaple5 years ago

That's the idea of the slow reduction plans - to allow small overall steps down by spreading a reduction steps over several days. The first day you feel a bit yuk, but the next day you are back to the previous dose and, according to a few people, after a few challenges your body feels better at the new dose than the old one.

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