To cut a long story short, I've been off Pred for over a year, but every now and then, like when I need to walk a lot, go on holiday etc, I take a short dose of 5-7.5 Pred a day for about a week. My GP is happy with that. Now the rheumatologist is suggesting taking a low dose of 2.5 constantly instead. The trouble is, this doesn't really have any effect on the level of inflammation, but disrupts my sleep and causes weight gain even at that low level. I find only 5 or above has any real effect on stiffness, hip pain and mobility. So I don't know what to do for the best. I don't want to take 5 all the time. I've had PMR for over 6 years and the pain and stiffnes is nowhere near as bad as when I first started, but I still have stiff hips and shoulders, especially in the morning, struggle with fatigue and my chest is tight, like there is a tight band around me. Again, 5 Pred or up and my chest is fine and I'm less tired. I've tried taking a low dose and following the Blood Sugar Diet but still put on weight rapidly, which is so disappointing when I managed to lose nearly 2 stone when I came off the Pred. So, is there any benefit to taking a low dose of Pred if it doesn't seem to be doing anything useful and also makes me put on weight and not sleep? I can manage fairly well without Pred, apart from the fatigue and not being able to walk as far as I would be able to if I took Pred. Surely the PMR must be nearly over no after 6.5 years anyway? I don't want to go back up to 5 as I had so many problems getting off steroids last time with the adrenals not working. This is such a difficult decision.
Is 2.5 Pred worth taking?: To cut a long story... - PMRGCAuk
"is there any benefit to taking a low dose of Pred if it doesn't seem to be doing anything useful and also makes me put on weight and not sleep?"
Not really. But if you have a way that works for you that is a similar sort of amount, keep doing it. How long does it take for the symptoms to return after a week at 5mg?
"Surely the PMR must be nearly over no after 6.5 years anyway?"
Not necessarily - mine is still there after 14 years and 9 years of pred...
Oh dear, that's a long time to have PMR. I asked my rheumy (currently the lovely Dr Dass at Chapel Allerton, Leeds) how much longer it's going to go on for, given the median age is about 5-6 years, and he said there is no way of knowing. He said it might be possible that if you get it when you're young it's stronger (I was 51). When I take a short dose of Pred then stop, I am tired and have to rest for a week or so, probably because I overdo it whilst on Pred! I can get about and just about manage without Pred but get tired and fatigued easily and have very stiff shoulders and hips, especially in the morning when I wake up. It's nowhere near as bad as it was in the beginning though. Without Pred I can walk for about 30-45 mins, on 5 mg or more of Pred I can walk for hours . Thanks for your advice, I agree with you, if there is no benefit to taking 2.5 and there are side effects even with a low dose why bother. I once read on here you should never try and get off steroids in winter - I definitely feel worse now than in summer and it's a long 6 months til I get to feel the sun on my bones again. Thanks again PMRpro
Have you tried alternate days of something between 2.5 and 5mg? And cutting carbs drastically to help with the weight gain? Other than being overweight I have no problems I know of - but I couldn't face being back where I was pre-pred so I accept the excess weight having got rid of 35lbs with low carb. I was also 51 when it first started - and I would agree with DrD
Yes re the diet, am keeping to really low carbs, cut out the beige (bread, potatoes, pasta, rice) and totally eliminated sugar. I lost nearly 2 stone over 6 months doing that when I came off Preds but it all goes on again quick even at low doses, I must be very sensitive to steroids. I used to have the classic moon face too but that's nearly gone. Not thought of varying the dose, maybe alternate days of 5 might work. I've tried other low doses eg 3, 3.5 and 4 but only 5 or over seems to do anything useful. I guess I have to find what works for me, experiment. Which is worse, insomnia or fatigue?
I am on 1 mg here in the states. My moon face is gone. After much medical research I learned about allergies and inflammation. I found out from a top allergist that allergies can play a role in an elevated ESR which causes our inflammation. I found out from blood tests that I am gluten intolerant - off the charts, so now I eat gluten free. Thus far my stomach is starting to flatten, less puffiness. I eat organic chicken, veggies, grass fed beef and fruits. I stay away from processed foods. These steroids wrack havoc on us but help with pain. We are in a catch 22. And for some time taking them I just could not sleep. Now I take an eye dropper dose of CBD oil every night and I sleep. Rub it right into an achy muscle too. Helps. Even on 1 mg I still get a few twinges of pain but I know I will have to come off of it eventually and see how I do without it. Not there yet. I hope you do well 🙏🏻
Interesting what you say about allergies. I now get bad reactions to sugar, nuts, blue cheese, soy sauce, white wine, even grapes. My face, neck and chest flare up and I have to take anti-histamines quick. I'm wondering if it has anything to do with histamines as all these things are high in histamines, but then so is avocado and that doesn't cause me problems. I'm trying to do an elimination diet to find out more about what triggers things. Gluten seems to be OK, though I have pretty much cut it out as I'm trying to keeps carbs low to lose weight. Dairy not really a problem, i can take milk but not strong cheeses. All this has come on since coming off steroids, or may have been masked while on steroids. Very odd. I've had tests for coeliac and RAST and they all came back clear. In a book I'm reading about autoimmune diseases, food reactions are common. Your regimen is pretty much like the Autoimmune Protocol or AIP diet, I'm trying to do that but frequently fall off the waggon. Thanks for your help.
Try avoiding sugars. I get aches from sugar. I use Stevia and the gluten free for me is working well. Try keeping a journal. Mark down foods that cause painful reactions too.
Funny you should say that. I've been keeping a detailed food and symptoms diary and the penny has dropped. I think I have a histamine intolerance and possibly Mast cell activation syndrome (MCAS). Am now trying a histamine elimination diet for a month or so and will see what happens. I think I'm finally on to something that might help. Unfortunately that includes eliminating all alcohol and even tea, and living on a basic diet of chicken fish and vegetables for a while. It'll be worth it to see if my theory is right. As steroids are a mast cell stabisier, it would explain why I feel so much better when on steroids. Watch this space ....
PMRpro - say it isn’t so....that the younger you are at the onset of disease, the stronger the PMR is, and the longer it takes to go into remission??
I was 55 when symptoms emerged. 😢
Have you tried taking a few mgs in the middle of the night so it is on board before the inflammatory dump. There are quite a few people here who find themselves to be much less stiff in the morning when they get ahead of the stiffness. Maybe 2.5 would be enough taken at that time?
I don’t understand this article in depth, but I do know that Rayos made a big difference for me. This was from 2016. Just found it now. rheumatologynetwork.com/rhe...
PMR is associated with elevated IL6 levels, and responds much like RA to Delayed Release Pred.....Rayos in USA or Lodotra in the UK.
Or any other sort of pred...
Any other sort of Pred? Please clarify? Do you mean they all do about the same thing? Do you mean all can be taken with a timing that allows the Pred to be at max effectiveness in the early morning hours, before the cytokines dump.?Did you mean that any sort of Pred will work for both PMR and RA? Just confused. I think the answer is "all of the above" but if I'm wrong, would want to know.
The majority of PMR patients do get off pred in up to about 6 years - so even older patients do too.
Corticosteroids, however they come, are powerful antiinflammatory medications. The only difference between Rayos and ordinary prednisolone, prednisone or methyl prednisolone is that you take it before bed and it doesn't release until 4 hours later - a major convenience factor. Plain pred can be taken at 2am and reaches its peak in the blood at the right time - and some people do wake in the night to take their dose. Others take it if they wake in the night to go to the toilet. Others take it before bed and it still works well for morning stiffness, yet others split their dose and take a smaller amount late in the day so the effect carries over to the next morning and then they take the bulk of their dose. Rayos isn't available in the UK on the NHS because of the cost and in the US the manufacturers price is astronomical so some insurers won't cover it - and then people have to be inventive.
Hmmmmm....I’m one of those that deals with morning stiffness and take uncoated pred between 4-6am (when I’m up to use the bathroom). I also split my dose for awhile trying to find the best way to take it given my symptoms.
Perhaps I should ask my GP for Rayos next time I get my prescription filled. It would save me sucking back a formerly frozen yoghurt tube that had long since thawed (yuck), to have something in my stomach with my pred dose. Sometimes if I sleep through, I have a tougher time of it that day, so taking my dose at bedtime would be ideal!
My only worry is that I don’t get full 24 relief from one dose...more like 16-18 hours or so. Would hate to become achy at suppertime. With my current dosing schedule I start feeling aches around 9 or 10pm (which I can live with).
Thanks so much again for all of these discussions. I learn so much, and this helps me manage my condition optimally.
I don't THINK Rayos is available on the health service in Canada - it isn't in the UK or Austria. It's available online - at about US$2.50 per 5mg tablet.
Cost of Rayos in the US is around $90 per tab [1, 2 ,5 mg].
"Rayos Prices. This Rayos price guide is based on using the Drugs.com discount card which is accepted at most U.S. pharmacies. The cost for Rayos oral delayed release tablet 1 mg is around $2,629 for a supply of 30 tablets, depending on the pharmacy you visit."
At certified Canadian pharms Rayos equivalent from India $17 per tab.
"Generic Prednisone DR 5mg
Generic Alternative of Rayos 5mg
Source Country: India
Shipped From: India
What is a Generic?
30 tablets - $499.00 USD
Thank you for the useful info. What is IL6 please?
Does pred have effect on OA?? I’ve had OA long before PMR. Maybe it’s lingering PMR or just old age..in my case it’s confusing and I don’t want to take pred if it’s notPMR...But right now, with me it still is I’m sure...only a little over a year down to 8mgs with a few bad days here and there...
Thanks for an interesting and very relevant Post. I think you've nailed the perennial Dilemma around 'Lowest Practicable Pred dosage vs. Tolerable Pain / Stiffness Balance' that many of Us Lot grapple with (me included..). I can relate...!
This is only my (I stress non-expert) opinion: but from what you say it seems that even after a year of being generally (q.) 'off-Pred', you still need a Pred top-up to cope with anticipated additional exertion / 'Adrenal load' - of what ever kind.
Your GP (and of course you) might be happy with your 'Increase-on-Anticipated-Demand Pred strategy, and then return to Pred Club Zero' - until the next time around. But, and from experience, I would put my money on your Rheumy's advice to maintain a steady, consistent lower-to-medium-level (and gently decreasing, DSNS style) Pred dosage regimen (in your case, from 2.5 to 5mgpd - or whatever feels about-right symptoms-wise?) that ameliorates the potentially nasty effects of Pred 'Yo-yo-ing': i.e. dis-proportionately and rapid high increases and / or reductions that can trigger uncomfortable side-effects both ways.
And.. bear in mind that there is also the possibility (even if remote) of triggering a Life Threating Adrenal Crisis if you get the equation wrong when dropping to Zero from even a low-ish 2.5 - 5 mgpd Pred TOO quickly - even if you feel fine before doing so. At lower levels of Pred (e.g. < 5mgpd) this is still a possibility.
Also, from how you describe your (dare I say, persisting ?) PMR symptoms of Pain, Stiffness and the DF (Deathly Fatigue), you still have PMR lurking about - like it or not. As you say (sorry..!) (q.): "I can manage fairly well without Pred, apart from the fatigue and not being able to walk as far as I would be able to if I took Pred". Surely, isn't this evidence enough that your Pred dosage management strategy isn't working effectively in your current PMR context? That said, I have been there and got the T shirt too...
I think the best 'Bottom Line' for many of Us PMR (and especially GCA) Lot in deciding what's the 'Correct Pred Dosage to Effectively Manage our Symptoms at the same time as wanting to Get Off the Preds' is to Err-on-the Side of 'Slowly-Does-It' - and not to rock the PMR / Pred 'Boat'. Ultimately, with these complicated types of AI illnesses, it's often a Trade-Off between one set of symptoms and another - for better or worse. But my money's on Slow and Steady. Been there and got the T shirt... ;-).
And, finally (?).. maybe a part of the PMR / Pred Dilemma is also about Psychologically coming to terms with the fact that we have had, and most probably still (despite joining Pred Club Zero?) may have a lurking, major Auto Immune Illness that, either way, and even with the best treatment, it could still have a significant impact on our day to day Life. Yes, a sobering thought, I know. But my view is: 'things could be far worse'. Just look around is at what's going on in the News..?
I hope this helps. Please let us know how you get on, and try to keep Positive in the meantime.
Mark you are amazing. I love your post. I’m very impressed at the clear way you explain it all. I’m very glad you did because I would have said the exact opposite of what you said and now I’m glad I didn’t xxxxx
Ohh, thanks Linda ;-). That said, and to agree with PMRpro, we're all different and there's no absolute Rule on Pred tapering - just guidelines to hopefully minimise the effects of reducing by too much / too fast or (more significant) ditching the Preds suddenly...
Except she is already dong the "as required" approach which suggests her adrenal function is fine. Repeated short courses will have little effect.
In many ways it is better than I had - you CAN live with unmanaged PMR and it does vary from week to week as I know from my 5 years with it. It comes down to what makes you happy - quality of life includes a lot of things and what is important for me may not be part of your considerations,
A great post!😀 I was able to read it all and understand it. Not often possible for this poor old 79 year old.😂
Thanks Constance :-). Well, although no expert, I do try to chuck in my considered opinion based on good old Experience after nearly 4 years on the PMR ride (or is it Roller Coaster..?), not forgetting all I've learned from You Lot here :-D. Anyway, 79 isn't 'old' - just a number
I’m only 79 half the time - the rest is 29, 39, 49, etc etc depending on the PMR.😀 💥🍾🍸🍷
Thanks for your ideas, and as others have said a very clear explanation. I did have a serious adrenal crisis when I came off steroids nearly 2 years ago now, and had to have emergency injections and hydrocortisone for a few months, which is one of the reasons I don't want to go back up to 5 Pred as it was so hard to get below that level. My crisis happened even going very slowly from 5 to 4.5 to 4 over 2 months. The trouble now is a low dose ie anything below 5 doesn't seem to do anything useful, and what's more makes me put on weight. I've tried taking them at night but then I wake up and need the loo about 3 am. I asked about slow release steroids but they're not available on the NHS. It's interesting what you say about other AI illnesses lurking which I think were masked by the steroids, I've now got everything from varicose eczema to food allergies and swollen saliva glands on top of the PMR. From what I have read these are all manifestations of autoimmunity.
I would stick with what you have found effective for you. I never thought of using it like that.
It might not work for everybody. I take a short dose of around 5mg for up to a week or 10 days, for things like to go on holiday where I know I'll need to do a lot of walking around, or when the fatigue is just overwhelming if I've been overdoing things. My GP says that's absolutely fine, it's the sort of thing they prescribe for somebody with say bad asthma.
Jane, I think you've got it in one: i.e. all of Us Lot have differing health circumstances. So, (and with sensible guidance in context - either from this forum and / or with the advice of a good Medic), anyone's approach to a Pred management strategy at any particular time should be carefully considered before implementing it...
Hi - I agree with Mark that this is an interesting post which raises some significant interrelated issues/questions such as:
*When or if can we say we are entirely 'free' of PMR/GCA ? ;
*If we need to keep taking Pred indefinitely is this because our adrenals aren't 'working' (at all or 'adequately'), or is this about PMR/GCA (or'new' or 'other') incremental or continued disease activity ?;
*Considering research and posts (from this forum and others) about the possible consequences of using (even low levels) of Pred over many years ;
*Is our (current) 'quality of life' the most important thing to consider ?:
Lots of other implications of course so totally agree tangocharlie certainly a 'difficult decision'.
Really good questions, particularly the first one. My understanding was that PMR eventually burns out but I don't know if that is always true. Anyone on here 'PMR free'?
Hi TC. I was going to say stuff like, you know your body etc and do what works. UNTIL I read Mark’s excellent post which raises very important points I had not considered. Good luck. Sorry to be no help though xxxxx
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