Prednisone reduction

Yes my doctor suggested the 1 mg weekly reduction, with instructions to stop at the dose I was at if I felt symptoms returning - thing is, I think the symptoms were not noticeable until I'd gone past the point where I should have paused.  I have been learning so much from this forum! I think my doctor is going to be very reasonable, I just want to have as much info as possible before I see her in a few days.  I will stay at 10 mg until my appointment.  Thanks for advice.

I think at the beginning doctors try and get us down quickly just in case the dose is too high for us. I know someone with PMR who went from 15mg to 10mg in his first week on pred with no problem. His GP was horrified. It then took him three years to get off pred.

Ask about a Dexascan when you see your GP. Steroids can cause bone density loss. Also ask about having regular blood tests. Include vit D as that is sometimes forgotten. 

I am scheduled for a bone density scan in about three weeks and have been kind of freaking out over the possibility of osteoporosis and all the other nasty potential side effects.  Going for lots of walks and doing my exercises faithfully.  But I think I need to rest more, too.  I have had an awful lot of stress in my life the last couple of years, and the PMR must have started last year when I returned to work after recovering from a broken leg, only I didn't know what the pain signified and my first doctor was useless.  I will ask about the blood tests and the vitamin D, although I have been careful with calcium and vitamin D suppplements for many years, increasing my calcium intake as soon as I started on the pred.  Thanks for your advice.

The first time I was on pred I had 2 weeks of 15mg followed by 2 weeks of 10mg - I was fine. The course stopped after another 2 weeks at 5mg - I'd felt pretty good but within 24 hours I was worse than before. I got to 10mg again but never below 9mg for 3 years. Then a different form of pred that didn't work for me allowed in a massive flare. After 3 years now I'm down to 4mg and am fine.

Anhaga - don't panic about osteoporosis. It may or may not happen. My bone density didn't change at all in 3+ years on doses above 10mg. Others I know have had GCA and the very high doses of pred - no bone density change even though they did not take any bone protection, even calcium and vit D. Others already had osteoporosis or very near before pred. Remember - osteopenia is NOT osteoporosis. i am osteopeneic, I don't need any treatment though.

You MUST learn to pace yourself and too much exercise makes you even more tired - a moderate amount is the answer. Moderate exercie with rests to recover will help the PMR symptoms and probably the fatigue. But not overdoing it.

And don't take too much calcium - that will cause other problems.

Thanks.  I think I am being careful with the calcium.  I went from the minimum dose of calcium citrate to the maximum recommended per day, no more.  It is a formula that comes with the other chemicals needed to absorb it.  If my bone density test is good I plan to cut back a little, having read that the road to osteoporosis starts in the first month of pred - probably because the dosage is highest then.  I have learned my lesson about the activity - wish I'd had all this information three months ago.  The doctors ought to have an information sheet to give out so that people at least know that they need to look after themselves.  Painfree does not equal cure, although I thought it did!  

That's what the support groups in the UK tend to do. They supply info, especially the northeast of England group who have written a book for patients but the first edition is almost gone! We do our best through the forums but it does take an immense amount of time because we answer the same questions over and over again. At least I don't have to look things up nowadays!

Don't cut the calcium back whatever your bone density turns out as - pred makes us excrete more calcium than normal, the supplement is to make sure there is plenty available to keep bone building going. I'd say the first 3 months, not jsut one, but it depends on the person - some people manage to develop osteoporosis even without ever taking any pred!

Thanks.  This is all very helpful.  I was told my results, but at that time they didn't mean anything to me.  I was told that had I not had such acute and long lasting symptoms they would have been considered nearly within the normal range.  I have been taking Vitamin D3 supplements for several years, as well a upping my calcium intake both from food and supplements since my diagnosis.  I take no other meds.

Thank you.  I didn't want to mess with my dosages any more until seeing my doctor, and that is why I wanted a lot of info so I didn't end up with the yo yo effect!  Except for this I have been very healthy.  I had lost a great deal of weight, which is a symptom of PMR, and that is what triggered my visit to the doctor who diagnosed me; earlier visits to another GP had resulted only in painkiller prescriptions (which I didn't fill, wondering why the particular drug was still on the market) and (in this instance useless) physio referrals.  

Do I gather from your reply to lodger that your ESR and CRP were normal-ish? One in five patients with PMR or GCA never have raised blood levels - they indicate inflammation being present in the body. My ESR has never been out of single figures even when I couldn't move with the pain and stiffness. Normal is regarded these days as up to 20, a few years ago 35 was still felt to be acceptable for women of our age. Mine reached the dizzy heights of 7! But a lot of doctors are unaware of that - not just GPs but also rheumatologists who you'd think might know better.

I will take notes next week.  From reading what others say on this forum I gather that I was lucky to have lost weight, but when my friends started remarking that I looked like a refugee from a famine-ridden country I figured I should take it more seriously.  However I am not in a hurry to put it back on as it may appear where I least want it.    Looking for that "dead slow" discussion but haven't found it yet.

Anhaga, your symptoms and response to the tapering of the Prednisone is pretty much "textbook", and wise of you to have noticed that you simply had to give your tapering-off a rebound to a higher dosage.

You are doing very well.  Your overall situation, given that you experienced a very unfortunate delay in beginning your treatment, is quite like mine. You are now about 14 months(?) into your condition, so your autoimmune recovery is well along already!  I also had to "bump" my dosage when tapering off at 1mg/month, and have finally dropped from my "finally stabilized" 6mg to 5mg and am waiting for this dosage to also stabilize to where I will be considering my next reduction in perhaps a couple of months.

I have had pmr for 20 months now, 17 months in treatment.  I endure a level of symptoms I would say hardly affects the later 3/4 of my day at all.

The [two] things that I watch out for, as I estimate when my next reduction should occur, are 1) symptoms of early-afternoon fatigue and 2) aggravation of arthritic symptoms in my thumb joints.  This it what it has come down to, and I don't want to have that arthritic problem lingering later on.

Good luck with establishing a dosage that you can live comfortably with!

And do wish me luck in being able to finally taper off completely as well.

Thank you for your encouragement.  I am pleased to hear that your symptoms are being well managed and hope your recovery continues.  It has been amazing to discover this forum.  I went online in the middle of the night when I knew I had to do something about the returning symptoms and learned that so many people had the same experience, it was not a failure on my part.  

Visit the North East site and use the Contact US on the Blue Banner line, send an email, headed Reduction Plans and both of them will be sent to you.  They are free of charge.

A lot of us lose weight before being diagnosed, it is a symptom of PMR. Pred often sees to it that we put it on again though! I looked like a ghost before being diagnosed. 

Electronic documents?  I live in Nova Scotia so they might not send by snail mail.

Electronic documents  via email. In either word, pdf or whatever you require.

Been doing my reading. And have sent off for the documents. Thank you so much.  

I don't think you can say "You are now about 14 months(?) into your condition, so your autoimmune recovery is well along already". If PMR were a fixed term contract yes you could - but it isn't. No-one knows or can know whether there is any improvement in the autoimmune problems - it is exactly the same as with rheumatoid arthritis or lupus. Even when the thing has gone into remission it is not necessarily a permanent situation and it can flare again at any time, especially if you become badly stressed again - in any shape or form, physical or mental. I have had PMR for more than 10 years. Yes, for 5 years it was there and not recognised so not treated. But after over 6 years on pred there is no real sign that it has gone. I live very well on less than 5mg - but I have no desperation to get off pred. I also know people who were diagnosed quite quickly who have also taken years to get off pred - or who have had a second dose.

You HAVE to remember that pred is not a "treatment" in the sense of achieving a cure, it is a crutch to manage the symptoms until the natural remission arrives. Pred has no known effect on the autoimmune part of the disease, it just achieves a chemically induced remission state in terms of symptoms but not in terms of the cause of the problem. It is similar to using insulin to manage diabetes - with many of the same pitfalls when you think about it. Very simplistically: too much carbohydrate will require more medication - to some extent in PMR too much exercise will require more pred. 

"dead slow" is here:

https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

together wil links to all the things that provide info that we feel are valid and reliable.

Any unexplained weight loss requires investigation - it is one of the signs of cancer somewhere but all too often it is too late by that stage. There is a selection of things that need to be ruled out before a diagnosis of PMR is made - it includes cancer.

Thanks for the more generally-applicable information, you're right that pmr just isn't all that predictable.

I noted similarity between Anhaga's and my own sort of treatment timetable, in particular that the time prior to a diagnosis and treatment left me at a weight that was about as low as could still leave me healthy and looking healthy.  I'm lucky that it didn't go further, noting that my very effective pred treatment hasn't put any of the weight back on, which is odd since I have by now added back some muscle.

I had been assuming that Anhaga's prescribed rapid rate of taper might have been because of her physician's expectation that some degree of recovery would likely be in effect already, after a full year. Or maybe it was intended to more rapidly establish her quantitative dosage requirement at that time. Isn't that sort of how the initial dosage tapering is intended to work?  I know, not all doctors seem to have such a great (or even adequate) understanding of pmr so as to be expected to make reasoned prescriptions. My doctor wanted me on Plaquenil, and for all I know, that is sort of the case-by-case experimentation that passes for reasoned treatment for pmr. I disregarded his recommendation.

I questioned the rate of taper that I was prescribed, and so "tested it" by tapering a bit faster than the 1mg per month. That did get me down to the 5mg range in a somewhat shorter time, but of course pmr was far from being done with me.

With the exception of specific things like pushing a heavy vacuum cleaner with one arm and already-sore shoulder, I found that extensive amounts of not-painful exercise seemed to be helping my condition as I initially tapered from 15 to about 6mg pred.  Very hard to track how the sliding dosage rate played with the exercise and symptoms, but I again felt improvement when I began doing strenuous lawn mowing on this hilly terrain. Yes, I found it possible to overdo it. I think I payed the price first with my feet and also the shoulder from vacuuming one-handed as I mentioned. But I also did quite a bit of daily intense cycling here in the hills and actually never noticed any over-stress conditions from that, which honestly surprised me quite a bit.

I feel almost lucky to have narrowed down the effects of too low a dosage of pred on my thumb joint, on my level of fatigue and on my most very recent symptom area, my ribcage.

I can only wonder how many different actual triggers that there are for pmr (possibly infinite?), with each possibly having it's own unique time frame of symptoms and treatment.

Thanks, Eileen for explaning how each patient has to make decisions based on what is now becoming known, and also based on one's individual timetable of symptoms.

A fundamental problem is that pred is normally used by GPs for a different form of inflammation - more often than not that caused by an infection. Once the infection is dealt with then the need for the pred is greatly reduced, often gone altogether so you reduce the dose fairly quickly - it isn't a good idea to take pred when you don't need it.

Often they then fail to understand that in PMR you are dealing with a new focus of inflammation on a daily basis: every morning the body sheds substances called cytokines which then cause a new increase in inflammation. It's the difference between turning off the dripping tap that is filling the bucket and emptying it out without doing anything about the tap - both will stop the bucket overflowing but the second has to be done again and again.

So, believing that the inital dose of pred has stopped the inflammation permanently - the symptoms have gone, the ESR and CRP levels are back to normal so that means (they think) that the illness is in remission - they reduce the pred far more quickly than is helpful. The symptoms are in a "drug induced remission" , not full natural remission, a very different thing.

Yes, often you CAN reduce faster than the doctors suggest but you must do it in small steps so you can identify the dose you still need. The dose they don't expect you to need. Go in big steps and you overshoot and the symptoms return as a result - so they panic, thinking it isn't PMR after all. The option is another inflammatory arthritis so they want to use other drugs. Sometimes it is another arthritis and the patient improves on a DMARD - so then they think this will help with other patients whose PMR is "refractory", it doesn't go away in the time frame the doctor is fixated upon.

I suspect the "rapid taper" is simply the standard treatment here (Nova Scotia).  The doctor did tell me if I noticed symptoms that I should stop at the dosage I was on until I was better again.  I have learned from this forum that one week, especially at these relatively low doses, is not enough time to become aware of the effects of a reduction.  So I am going, with the GP's blessing, to start on the dead slow method.  I think I will start where I am now, 10 mg, and not raise it first as I have felt pretty well for several days.  I'm not going to start until some time next week, so will have been at 10 mg for about three weeks by then.