Forgive me if I've brought this up before but after my rheumatologist advised me that there are little or no side effects when on 7.5mg prednisolone providing one takes the right precautions - Calcium, Vit D supplements and healthy eating habits e.g. low or no sugar, low or no carbs, etc. I thought I would seek additional advice here. I've been on 7.5mg for 3 years, but now trying a slow taper for the second time in a year to 6.25mg and then to 5mg (can only get 5mg tablets in Cyprus so they have to be cut). The first time I tapered resulted in a flare, not a bad one but enough to send me back up to 7.5mg where I felt much better. In fact I have felt so much better during the last three years compared to the previous 5 years, when I think PMR was slowly creeping up on me. I've just turned 80 and I'm more active than most of my acquaintances of the same age or even younger. I know this is likely due to the steroids but may also be genetic as my mother was very active before being diagnosed with PMR. and may have remained so had her steroid dosages been managed a lot better.
My question is this: Are there any folk in this support group who are still on a low dose of pred after, say, 5 years, with no obvious side effects? I'd like to try to get down to 5mg and remain on that dose indefinitely providing I feel good, I want to continue to have a decent quality of life and I don't relish going through a lot of discomfort just to taper off pred. For the record I haven't got cataracts, don't have any debilitating aches or pains except sit bone pain (ischial bursitis) which I'm trying to manage through stretching exercises. My blood test results, taken every 2 months, are consistently good.
Thanks for reading, and I hope I've made some sense!
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Pr0jection
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I have had PMR for heading for 19 years and have been on pred for well over 14 of them. It took me over 4 years to get reliably below 10mg, had a massive flare when I had to switch from prednisolone to methyl prednisolone which lasted until I was switched again to the delayed release form of prednisone called Lodotra/Rayos. After a couple of years I managed to get to 5mg but had another massive flare which sent me back to above 10mg. Just before Covid my husband became very ill and I was sole carer, our family are in the UK, I live in Italy. In the nearly 2 years up to his death I needed at least 15mg to be able to function and a few months after his death I had another flare which sent me up to 19mg. Then my rheumy put me on Actemra - since then I have got to 5mg but it has taken 15 months. He said initially he doesn't expect me to get below 5mg - I will try and see what happens with regard to adrenal function. But I'm not prepared to suffer on a low dose!
I have no sign of diabetes, osteoporosis or anything else they tell you is inevitable. I have never taken bisphosphonates for bone "protection". I gained weight with PMR and later with methyl prednisolone but NOT with prednisolone or prednisone - in fact, I lost 35lbs/16kg after stopping the methyl pred but while on 10-15mg pred. My skin was thinned on the high doses - since getting down below 8mg again it has improved no end.
There are many patients who remain on a low dose of pred for years - especially here in Europe where they seem to have far less fear of low dose pred. My rheumy has told me he has quite a few patients who have been on pred for a long time but at a much lower dose than I have needed. Pred is a powerful drug, it has adverse effects - but most of them can be mitigated when you know how and a low dose over a long period that gives you a decent quality of life is perfectly acceptable IMHO.
Thanks so much PMRpro. I was hoping you'd tell me your story because you've occasionally referred to the fact that you've been on pred for several years. I've more or less decided to continue with this slow tapering to 6.25mg for the foreseeable future. If I continue to feel well then I'll attempt the same tapering schedule to 5mg. If I manage this, and feel well on 5mg I'll stop for a while and see how I go. Thanks again....
Never feel under pressure to taper - at any stage.
Do you have compounding chemists in Cyprus? The pharmacy in the village will take a large prescription of high dose tablets and grind them and make up any dose you require in capsules. They did it for my husband for warfarin for a few years as he could manage his INR with a dose he couldn't achieve easily with the 5mg tablets he got here. Worth asking around.
I am also residing in Cyprus and like you I have decided to stay with my current dosage level of 5mg . I have no side effects other than thinning skin on my forearms . A number of times I have managed to taper down to 2.5mg then relapsed and I cannot see the logic of continually attempting to wean of pred when it seems to have very few adverse effects . There appears to be no investigations into the long term side effects of pred at 5mg or lower . I have now been on 5mg for the last six months , I was diagnosed with PMR in October, 2019 and have had very little contact with any health professionals in that time . Before I came out to Cyprus I saw a rheumatologist who was fixated on me going on to MTX and taking numerous medications to offset the many side effects - she was not pleased when I refused this medication.
Hello Hampit54, thank you for taking the time to reply. I was diagnosed in August 2020. I live just outside Paphos where there are currently only two rheumatologists. I've seen both and decided to stay with Dr A. I see him every two months for blood tests and check-up. So far so good. Only once has he tried to get me to reduce from 7.5mg to 5mg which is really too big a drop in one go. He's backed off now. If I get to 5mg over a longish period of time with a slow taper and stay on that dose feeling well, then that's what I'll do. Just for the record my rheumy won't recommend MTX, which I'm happy about. You're right, there does appear to be very little investigation into the long term use of low dose pred. Thanks again....
Hi, I was started on 40 mg pred January 2016. After 2 years I was down around 5mg. I have never been able to get below 3.0/2.5mg without a serious flare starting. Right now I am at 3.5mg and feeling pretty good. My bone scan is better than 5 years ago, I have no aches, walk 5-7 miles a day and have not gained weight. The only other medication I take is a low dose blood pressure medicine. My endocrinologist says my adrenal glands look good. I turned down actemra and bone meds.
I thank you for starting this thread because I also wanted to know who is accepting the low dose and decent quality of life and maybe not struggling constantly to reduce. I have scoured the internet and there is little information on chronic GCA. I don’t fit their 1960’s textbook version and there is little research being done. My diagnosis now says chronic adrenal insufficiency, probably to justify my pred usage to Medicare. So be it.
Many thanks for taking the time to respond. You're right that there's too little information on long term low dosage use. Things don't seem to have moved on much since my mother had PMR in the 1970's/80's.
Seems to me that if your bone density tests come back okay, your sugar levels are normal, and your heart and lungs are working well, if something’s not broken why fix it?
My rheumatologist (who seems better than most) says that putting myself at risk for a serious flare up is more dangerous than the side effects I have (hand tremor, 10 extra pounds, a little shortness of breath); that prednisone is often less effective the 2nd time around.
I have been on prednisolone for 7 years now starting at 70mg for GCA. Always struggled with the tapering even doing it slowly - when after 3 years I got to 7mg I suffered from adrenal insufficiency even though 7 should be ample to compensate. Sent to see Endocrinologist did all the tests inevitably minimum adrenal function - have been monitored by him now for 3 years. I eventually tapered to 5mg felt terrible but stuck at it for 18 months - eventually advised to go back up to 6 as he was quite happy for me to stay at that dose if I felt well & allowed me to lead some sort of normal life. So here I am, now 78 - yes I have bad osteoporosis but that’s not just due to steroids, have had 2 Zoledronic acid infusions for that, I can walk for at least an hour exercising my dogs & am still pretty slim.
Hi Pr0jection. I have PMR and GCA and am currently just on my first day at 2.5mg. My rheumy is very keen for me to get off pred within the 2 year window!
However I recently had contact with an old work colleague (we were both teachers) who told me he has had PMR for 10 years. He can't get below 5mg pred without his symptoms returning, so his GP is happy for him to stay permanently at that dose. He is 75 and able to function normally as a gardener for several people in his village.
There seem to be a lot of health professionals that want you off pred asap. I've heard about the 2 year window frequently. Thanks for replying, and good luck...
Hi. I've had GCA for ten years now, and successfully reduced to 5mg daily about three years ago. Since then, I've tried at least ten times to reduce further; on each occasion, I get down to 3.5mg before symptoms return and I have to go back to 5mg. I have concluded that there's not much point in trying again, so am resigned to staying on 5mg permanently. I'm 81, so it may not be necessarily all that long......
I should add that I'm lucky in not having any particular side effects.
I don't have PMR/GCA, PROjection, but I have been on Pred for Spondyloarthropathy for two years. My rheumy says that I will probably be on pred for life, and as long as I can stay at or below 5mg he doesn't have a problem with it. I have thin skin, gained 11 pounds, horrible hair, some low mood problems. I'm trying to get lower, but I can live with things as they are. Good luck!
I have been on pred for 5+ years and managed to reduce from 20 down to 9mgs in the first 18 months or so. But then I got stuck at 9mgs for 2 years. In those 2 years I tried to lower my pred by .5 using a very slow taper, multiple times, which would result in a flare and my having to go back up again. It got to the point where my GP could predict when I was going to flare because my monthly bloodwork would show increasing inflammation (CRP).
Although 9mg isn’t “bad” per se in the grand scheme of things, it wasn’t considered a low dose to remain at for long-term and therefore my GP and myself decided I would see a rheumatologist (of my choosing) to explore my options moving forward.
Last year I reluctantly decided to try Methotrexate as a steroid sparer. It worked helping me reduce down to 6mg the only complication being I got sick with everything going last winter. Since then I’ve lowered my MTX dose and fingers crossed I’ll have a better winter. My rheumy is open to my stopping MTX if fallout is worse than the benefits, but because it is working that would very likely mean upping my pred dose.
In my mind I’d just like to make it down to 5mg, and should I get there I’ve discussed staying there for awhile (a suggestion I’ve heard from others who said it helped with adrenals slowly coming back to life). The thing is though that I will likely have to stay on the MTX as well to remain there. I’ll be asking my rheumy today about long term low dose pred paired with long-term MTX. The original plan was to try and get off the pred altogether with the help of MTX, and then end the MTX.
I did taper extremely slowly to zero in 2020, but obviously I wasn't ready for zero as I needed to restart pred after a few weeks and developing mild symptoms. About six months after that when I was on about 3 mg I had a major flare and needed doses higher than any since my first year. No more than 10, briefly, but struggled to get below 8 and then 7. I believe that all along I must have been metabolizing pred very well and possibly others with less complete use of the drug would need more. However in the intervening years I finally got back to my old 2 mg, and currently am working towards 1/2 mg (from 1). Have been on pred since mid 2015, with exception of those few weeks in 2020, and most of that time at a dose below 5 (2 was lowest best dose for a long time). At this point it seems to be adrenal issues which slow me down, as there are no perceptible PMR symptoms. Also, any side effects I experienced were gone by the time I was securely below 5 (remember, I metabolize pred particularly well, others may find 5 is beneficial with no side effects).
It is puzzling that 1 mg tablets aren't available in your country. Is there a possibility of getting pediatric doses if you can't get your own lower dose pills compounded?
Not so puzzling really: their health system is very small and 1mg tablets are not commonly used anywhere, Even here in Italy most tablets are 5mg, Lodotra comes with 1mg doses but not normal pred as it is relatively expensive even for a healthcare system with a large population. Pill cutters are de rigeur for many drugs. If you want to have odd doses here, the pharmacies offer a service which isn't horrendously expensive - and it is tax deductible!
Cutting a 5 is fine for 2.5. I did that as we don't have 2.5 tablets, but as I was on doses below 2.5 for literally years it would have been a nightmare with only 5 mg. And it's not like Cyprus is in the middle of nowhere! Probably more expensive to service Australian outback or Canadian north. And isn't prednisone one of the most prescribed medications in the world?
Well it is - in the middle of the Med! It is more remote than Malta and the supply chain is problematic there,
Most of the uses for pred don't need the sort of tapering WE bang on about - and that is why there is such a problem getting doctors to understand. And then that means no demand - and no demand means you can't find it.
My rheumy says that it's cheaper to get 5mg than 1mg tablets. I can get 1mg and 2.5mg in northern Cyprus but bringing them over the crossing could present problems. I'll carry on with cutting the pill into quarters until I reach 5mg. Not the best solution I agree but thankfully they can be cut quite easily.
Assuming you mean have I ever asked or tried getting them from the North, yes I have and I did bring some back after one visit but it's not something I would consider doing on a regular basis. You can't get them sent to the south either.
No, it's all to do with the ongoing issues between north and south Cyprus. The pharmacists in the north are just as professional as those in the south but there are strict rules on what you can or cannot take over the crossings.
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