Everything follows from the starting-dose?

[Mayadill]

Found this from Pro in an earlier thread:

Personally I think that paper by Cimmino has led to a LOT of problems in managing PMR. Before it was done the common starting dose was 30mg and patients cleared out the inflammation and then were often able to taper fairly steadily and with few problems

(10) Starting dose of 12.5mg too low for PMR? - PMRGCAuk (healthunlocked.com)#

I am bar the odd hiccup pain and symptom free. I don’t think that’s because I’m sprinkled with fairy-dust, or even just lucky, I think that’s because my PMR was walloped at the start, that some people were never given a high enough starting-dose for long enough to render them asymptomatic.

I think I’ve seen here some people never get much above 70% relief but a search on 70% produced mainly people saying they were 70 and I didn’t find it. I have found a couple of examples where, after incomplete response to 15 mg, wise doctors increased the starting-dose to 20 mg, but, as we all know, not all doctors are wise. So, as per the runes, you’ve been on 15 mg for a week and achieved greater than 70% relief, so diagnosis of PMR has been made, so you’re continued on 15 mg for a further two weeks then reduced to 12.5 mg, and possibly caught in a hideous self-perpetuating cycle where you never have quite enough Pred and think PMR must mean misery.

I was started on 20 mg. So far as the pain went, pretty much magic bullet, but it took a lot longer to be able to stand properly and walk. I remember in hospital, surrounded by physios, I did manage to haul myself to my feet and even totter briefly around the ward with a frame, but nonetheless when after about 5-7 days on Pred I was transferred to a care-home hoists were involved; standing up wasn’t a trick I could repeat to order. Some genius had the idea of fetching my rollator from home and two weeks after arriving I proudly wheeled myself to the door to leave. So that’s about two weeks on 20 mg to restore basic physical normality, though still of course knackered.

So I got home with my bag of drugs and read that I was to reduce after four weeks and let us say I took that literally. Having only just got better it did not strike me that I’d been on Pred for three weeks and ought to reduce next week. I cheerfully stayed at 20 for a further four weeks. After that totally symptom-free until hit the wall at 10 mg.

Interestingly Quick and Kirwan say: “Higher relapse rates seem associated with too high a dose of glucocorticoids initially” quick.pdf (rcpe.ac.uk)

But as I’ve said before I don’t regard what happened to me at 10 mg as ‘relapse’ as in increase in disease activity, but simply as having gone to too low a dose for an unchanged level of disease activity.

[cycli]

sounds a reasonable and rational summary. Getting from where we are now to where we want to be is the real challenge. Even if we moderate our expectations it is still totally dependent on being able to get pred. down to a minimal level and getting off all the accompanying drugs. That's dependent on the inflammation being under control and the disease on its way to burning out.If only there were some reliable way to test that we would all be happy.

[PMRpro Ambassador in reply to cycli]

That would require a crystal ball - like predicting the car that is running fine will implode in 5 1/2 months time ...

[cycli in reply to PMRpro]

I realise this but it would be good wouldn't it? More research maybe and a whole lot of hope. 18years is a long innings and I know that if anyone can advise us it is you.

[PMRpro Ambassador in reply to cycli]

Never really strikes me as such - it just is ...

[cycli in reply to PMRpro]

not everyone has your patience and staying power. Much appreciated

[PMRpro Ambassador]

I suspect the Q&K comment may be because doctors start too high and then try to rush tapering - and confuse steroid withdrawal pain and returning PMR. I have seen a lot of patients who were told to go back to the start because they were told to reduce 5mg at a time and flared as a result. There needs to be a low threshold for going back to the previous dose if it doesn't work.

[Mayadill in reply to PMRpro]

I was reducing at 2.5 mg. With the 10 mg wall, not knowing any better, I put myself back to 20 to solve the problem, then told GP, saw Consultant, by which time down again to 17.5. The phrase 'awful disease' or similar crops up here quite a bit. Think my post also comes from that. I don't find it in the least awful and that is not because I have a benign fluffy version. It's solely because it's kept - I keep it - controlled. I have no interest whatever in experiencing anything anywhere near what I experienced at onset

[PMRpro Ambassador in reply to Mayadill]

Yup, me too. I've had it a long time, I had a bad patch when I moved here and had to switch corticosteroid which didn't suit but once I was switched to the one I'm on now it was fine again. Other things have been far worse! But I need what I need - and luckily here my doctors are all about QOL and no heroics,

[Mayadill in reply to PMRpro]

Exactly, exactly. Obviously there's a lot in play here about people's expectations of pain and whether it should be tolerated, ideas of 'toughing it out', on both sides of the doctor's desk. After a repulsive experience I was symptom and pain free and that's how I intend to stay, no faffing about. I suspect my threshold for tapering is higher than some people's. This is of course partly because no-one's on my back about it, including me. If it doesn't work pretty much seamlessly try again later. So I suppose it could be argued I'm always on very slightly more than the minimum I need but since the dose drops seamlessly that is absolutely fine by me. Maybe nearing the very end I shall need fractions of 1 mg, but for the moment I really cannot be faffed.

[DorsetLady PMRGCAuk volunteer]

From personal view (and GCA not PMR) I think my starting dose and first 10weeks on Pred certainly “walloped” my GCA.

For obvious reasons starting dose was 80mg for 2 weeks, then 8 weeks at 60mg.

Another reason I always say was being allowed to reduce in a sensible manner - varying from shortest time on Pred 2 weeks (55mg) mainly 3 or 4 weeks and longest being on 15mg for 6 weeks the Christmas after losing hubby.

Once I got into single figures, it again varied between 4-6 weeks at each dose, with a couple of longer period when either visiting NZ or other social occurrences.

Just for info, my original high doses where overseen by Consultant Ophthalmologist (diagnosed by his registrar in A&E after sight loss) - and once he was happy I was referred back to GP… changed surgeries at about the 18/20 month mark… but both were of the thinking it was a joint decision on reducing .

One appointment with rheumatologist at 9 months - who didn’t consider I needed to be under his care…

[123-go in reply to DorsetLady]

Must have been the whip and chariot that was the decider! 🫣

[DorsetLady PMRGCAuk volunteer in reply to 123-go]

Could’ve been!

[Mayadill in reply to DorsetLady]

I'm not the only one here, I think, but certainly an example of a patient 'in the wild', as opposed to under medical instruction. I have absorbed the various Guidelines as exactly, as only that, not rules. If the PMR won't play, the PMR rules. Thus as above, back up to 20, down 2.5 at a time per month, fine, fine, 10 fine, and there I stayed for around a year until further reducing worked at the approved 1 mg/month. Down to 5, vaccine garbage interfering, now 8 going on 7. Doctors? I saw one of those once. Dec 2020 was the last time I saw any doctor. I have blood tests every 2 months, which have included an HbA1C. Everything normal. I have slightly prickly views about that too, along the lines of improperly controlled inflammation rampaging around increases the possibility of other things being upset.

[Charlie1boy]

Hi,

From my personal experience, I would have to agree with you.

My start dose was 20mg for three days, then upped to thirty mg by my GP to clear out the inflammation. After three weeks I did then taper. I was left very much to make my own decisions, for which I had considerable help from the Forum. I certainly took my time, and got to zero last October after seven and a half years. The majority of that time I was on less than five mg!

I never tapered if my body didn’t tell me it was ok, and, as a consequence of this ( in my opinion), I never experienced a flare.

I never once saw a Rheumatologist, and remained under the care of my General Practice, who basically left me alone. I was always able to refer back to them if needs be.

[Bcol]

Morning all. Back to usual here with the weather - wet. Anyway, I can totally go along with this. When first diagnosed, after being carried into hospital because I was in such agony in every joint, I was started on 15mg, after a few days my own doctor bumped that to 30mg for a week, then 25mg for a week and then 20mg, he was very much of the school, hit it hard at the beginning and get it under full control, and I started a tapering regime from there downwards. Very quickly found this wonderful forum. After the first few weeks of getting under things control this disease, nor it's medication, hasn't really affected my life. I do have a tapering plan but it's flexible and I don't reduce if I don't feel its right. I have excellent GP's who are very happy to allow me to control my medication, put me under no pressure but are always there for me, even right through Covid, if I need them. My only real buffer was when I got to 12mg but a quick increase back to 14mg sorted that. In PMR terms I'm down to 1.5mg but I am experimenting on finding what level of Pred I need to kill off the CTS. Suspect I'll be settling on 5mg and doing a really, really slow taper. (all with docs consent). I do feel very lucky, compared to many on the forum but do believe that my high starting dose has been very benificial.

[Sandmason in reply to Bcol]

Coming down from a month of 20mg in 7 months, I am on my second week of 12mg, and not loving it! I'm also on my own, my new GP won't treat me for PMR further until I see a rheumatologist, which is impossible in my area. I'm stubbornly pushing through this 12mg week, but back up to 14 would feel like failure.

My husband is a semi retired primary care doctor and I can get whatever meds I actually need through him. I don't want to lock horns with my new GP but when she told me to drop from 20 to 15, I refused, knowing what happens if I forget a 5mg dose. 20 was terrible too if I took all 20 in the morning, the 3am flare where I can't get out of my recliner.

I think we all end up managing this condition by ourselves.

[PMRpro Ambassador in reply to Sandmason]

So how does she intend to deal with it? You can't just stop pred suddenly after this time. Sounds like someone without the training to do her job - PMR is regarded generally as a disorder for GP management, There must be another doctor in the practice? Or maybe even another practice? I know it is hard these days.

[200751]

I concur with you all in regard to starting high. For my suspected PMR I started at 80mgs for 4 days and it changed my life in just a couple of days - such relief. It was prescribed by a French GP whilst I was travelling. I reduced to 30mgs in a relatively short period of time but found I had to hold there for a number of months. Since then I have been able to gradually reduce to my present level of 5mgs over a period of 1 year. I am contemplating my next step to 4mgs but I am a little apprehensive. Each time I reduce I feel it takes my body about a week to adjust to the lower dosage i.e. I get a bit of niggling wrist or neck aching or something similar. Your forum has made me very aware of the need to reduce slowly and I am very appreciative of this. I know my GP and Specialist would have been pushing for me to reduce faster. Thank you so much to you all. I tend to be a reader rather than a commenter.

[Mayadill in reply to 200751]

Interesting you just hung on in there at 30 mg until the PMR had calmed down after which all fine.

I looked up how the French treat PMR and it is rather different, more flexible and therefore quite possibly saner.

La dose initiale est d’environ 0,2 à 0,3 mg/kg/ jour. En France, la prednisone est le plus souvent prescrite. La dose initiale de prednisone est ajustée selon l’intensité des douleurs, de l’inflammation initiale, le poids et la présence d’autres maladies déjà connues chez le patient.

The starting dose is approximately 0.2 to 0.3 mg/kg/day. In France, prednisone is most often prescribed. The initial dose of prednisone is adjusted according to the intensity of pain, initial inflammation, weight and the presence of other diseases already known in the patient.

Though I still don't see where the French doctor got 80 mg from

Don't think I weighed a lot by the time I was reclining on my bed of pain in hosp, but maybe 73 kg, which would give a dose of 21.9 mg which would have been entirely fine.

[PMRpro Ambassador in reply to Mayadill]

There may have been indicators of GCA?

I feel mainland Europe is far less paranoid about pred and more pragmatic about QOL than the UK seems to have become.

[Mayadill in reply to PMRpro]

Didn't think of that.

Yes, that struck me, and that paranoia feeds through to some of us patients. What also strikes me, the Brit system is so one size fits all and so many of people's problems come from that. It's like the whole mind-set behind it is describing something that will influence the course of the disease, like an antibiotic Scary thought of the day: some doctors possibly actually believing that.

[PMRpro Ambassador in reply to Mayadill]

Exactly.

[Nightingales]

It’s an interesting discussion, one which has come to haunt me lately. I was definitely one who thought that prednisolone was my life saver. I have been on it for 8 years with three flares at 3, 9, and 8 mg. I am now back at 15. I asked my dr why I couldn’t stay at 15 as I felt good, yes, a little well controlled DM2, and cataracts. I got the stern lecture and prescribed Leflunomide. I don’t like the anti pred movement and the Devils Tic Tacs point of view. Secretly, when a question came up about natural methods I thought to myself that they will eventually end up on Pred. Well, I have just had an urgent total hip replacement for Avascular necrosis and warned I will likely need the other hip, knees and maybe shoulder if I stay on steroids. I now have tendinitis from the Leflunomide. Next choice is Methotrexate. So, maybe a relaxed viewpoint is not so good. Certainly not for me. I need a hurry up and allow the biologics for PMR in the UK.

[Mayadill in reply to Nightingales]

Hi there. But you've had side-effects and with them other medications and I haven't. I don't think I'd be so relaxed if I had and particularly if I were on another serious drug for something else, whether or not a side-effect. I should maybe add to complete the picture that I'm pharmacologically incredibly basic. Pred is totally all I take, no AA, no PPI, no other prescription or OTC meds.

[Nightingales in reply to Mayadill]

You are right and that’s great for you. I was just commenting generally. It was just such an unwelcome surprise for me.

[Mayadill in reply to Nightingales]

Yes of course, it must have been a really horrid surprise. Take care x

[200751]

Thanks Mayadill for looking up the French info. Yes I’m not sure how he worked out 80mg - my weight was 95kgs at the time but I have managed to bring it back by 10% by cutting out red meat, all sugar and less bread and carbs and dairy. He prescribed prednisone 4x20mg for 4 days, 3x20mg for 3days, 2x20mg for 2 days then 1x20mg from then. I was flying back to Australia and was uncomfortable on just the 20mg so he upped it to 30mg. My inflammation markers have reduced to 1, according to my specialist, over the 12 months since this PMR diagnosis. This has enabled me to reduce slowly to my present level of 5mg. At the same time I have reduced the hydroxychloroquine from 400 mg per day down to 50 mg per day. I am not sure what the hydroxychloroquine is for but I don’t think it is doing much so I will cut it out altogether and just work with the prednisolone. Just be way of a diversion to the discussion has anyone tried using an inferred sauna as a form of therapy? I use one daily for about 45minutes and I believe it helps my condition greatly.

[200751 in reply to 200751]

Sorry infrared sauna (can’t spell)

[rearea in reply to 200751]

I have tried an infrared sauna but it seems my reaction is hot flashes and / or body becoming very hot throughout the day or night after use. Diagnosed with PMR May 2022. I am on 20 mg. Prednisone right now.to treat a flare which began after over activity and feeling so good at the taper of 16 mg. Somewhat reluctant to begin the infrared sauna but asked my rheumatologist and ophthalmologist ( treatment for sclera malicia with biologic and methotrexate)which is auto immune disease) Both MD’s stated it shouldn’t be a problem. My eyes are heat sensitive and wondering if my whole body is too. Just using it @100 degrees F for 10 minutes. Thinking of waiting till my Prednisone dose is lower to use it more frequently. Wondering if heat related weather and or sauna affects us related to how much prednisone we are on.

[PMRpro Ambassador in reply to 200751]

"My inflammation markers have reduced to 1, according to my specialist"

Because the MEDICATION is enough to control the inflammation - the body needs enough inflammation for long enough to trigger the liver to produce the proteins that raise the markers. It doesn't mean any more than that, I despair at the lack of awareness of many doctors in this respect,

Hydroxychloroquine is thought by some doctors to work as a steroid sparer - making a lower dose of the steroid have the same effect as a higher dose on its own. Like all the DMARDs (methotrexate and leflunomide for example) it appears to work for a small cohort of patients but each does not work for everyone. There is someone on the forum who was switched to it and does fine.

[200751 in reply to PMRpro]

Thank you PMRpro. I learn more each day and mainly from this forum. What you say makes sense - the Rheumatologist did not mention this to me.