Any recommendations as I continue my journey down the prednisone ladder?

Bones, joints and muscles
1

Hi Folks. I’ve been reading your forum for weeks now and truly appreciate all the advice and support you share. I decided it was time to stop being a voyeur and join in. I live in a small community of about 5000 in the Northwest Territories, Canada. We have no permanent Doctors, only locum physicians and occasional Specialist Physician clinics.

Here’s my story…I have had bilateral pain and stiffness in both legs for over 10 years. After walking or standing for an hour or 2 my legs got very heavy, getting in and out of a car was difficult and stairs just plain painful. After seeing many doctors and specialists over the years with no answer I simply preserved. In mid-January my right wrist flared up with pain and swelling. A locum doctor advised it was likely arthritis. A week later, my right knee and leg gave out on me. In mid-February, both my shoulders went. I saw another locum doctor and was diagnosed with strained rotator cuffs issues and advised that the knee was likely arthritis. I was given a booster shot of some anti-inflammatory, a strong anti-inflammatory prescription, and a muscle relaxant. None of the medication helped much at all. Exactly a week later my entire upper body went! Shoulders and upper arms were useless!! I decided to make an appointment with a Nurse Practitioner, a permanent resident of Hay River. No more locum doctors! Best move I could have made. He listened to my horror story, order x-rays of shoulders and knees; increased the strength of the anti-inflammatory meds; and added Tylenol 3 to the mix. The Tylenol helped with the pain, but symptoms persisted. By early March I couldn’t do anything, including lie down in bed. My upper arm muscles and right knee/leg would scream in pain. Then the other knee/leg started going on me. That’s when I started sleeping in my lounge chair. I actually managed to get 5 or 6 hours of sleep. Rather than drag the story out too much longer; over the next 2 weeks I saw the NP on a regular basis. We both agreed whole-heartedly that it was not arthritis! (X-rays showed minor arthritis in shoulders and knees) My body was working against me. All my inflammation markers were through the roof. NP consulted throughout the process with the physiotherapist whom I started seeing, and an out of town specialist. In mid-March I got the news that PMR was suspected. I started that day at a dose of 20 mg of prednisone. It seemed to help initially: however, symptoms returned in full force 3 days later. Dosage was increased to 25 mg. Three days later I had a complete melt down…the day before my 65th Birthday! I couldn’t stand to get out my sleeping chair. I didn’t have enough strength in my arms or legs! Fortunately, my NP called the same day to advise that I had and appointment scheduled in Yellowknife (nearest location of a specialist) 2 days later. Further, the specialist advised to up the Prednisone dosage to 40 mg. As much as I hated to, I upped the meds as suggested in the early afternoon. I was able to sleep in my own bed that night! My 65th arrived. I had slept in my bed comfortably all night and was able to get up with everything moving fine!! Happy Birthday to me! I saw the specialist in YK the next day. He was positive on the PMR diagnosis AND confirmed that leg issues I had been having for 10 years were the start of the problem. After 2 weeks I began tapering down in 5 mg drops. The recommendation was to drop 5 mg every 2 weeks until I reach 15 mg; then taper by 2.5 per month until 10; then monthly by 1 g. I’m now at 25 mg. A few symptoms returned the last 5 mg drop; however, they seem to be fading after 10 days. I’m scheduled to drop another 5 in a few days and am fearful of a further, more aggressive return of symptoms. Thanks to all that I’ve read on this forum, I’m considering a drop of 2.5 and waiting 3 weeks before dropping again, if all goes well. My NP supports whatever choice I make.

Comments and observations welcomed.

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Hello Jean and a big welcome.  Phew!  You've had a rough time pre-diagnosis, and I, and many others, will know exactly what you've been going through but thank goodness you've finally been diagnosed and are in a better place.

If some symptoms returned after the last 5mg drop but improved again after 10 days then that could be due to steroid-withdrawal pain.  However, I think you're wise to try a lower reduction next time just in case you've reached a dose where the inflammation needs longer for the steroids to maintain control at this particular dose.

You mentioned that your "inflammation markers were through the roof" pre-steroids, so do have repeat blood tests to ensure that the those markers are still heading in the right direction.  The latest advice circulating is to go by your symptoms and not your markers, but I had very high markers at diagnosis and repeat tests proved a wonderful guide for me as to whether to reduce or not.  I was never completely pain-free down through the doses - just a few very lucky people achieve that - and I found that relying on the blood test results proved very helpful for me and my rheumy.

AlI the best and I do hope it's onwards and upwards for you now.

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Welcome Jean - and what a horrible journey to get some treatment! I imagine you needed such a high dose to get a result because you had been left so long with nothing effective to combat the inflammation.

The reducing is the next problem. Now I KNOW that the normal use of pred means you can reduce like that for many patients down to about 25mg, that's fair enough, but in PMR you are not looking at having wiped up a load of inflammation and then get the patient off pred. The PMR is the name for the symptoms caused by an underlying autoimmune disorder that is causing a large vessel vasculitis. It is still active. There are doctors who would have you believe that PMR is a self-limiting illness that burns itself out in a couple of years. Yeah - well you and I would have our hands up to say "No way Jose!" - I'd had it for a mere 5 years pre pred.

Basically, on 5 years of experience at this game, I think their plan is not too bad - but it has been said for a long time that reductions shouldn't be more than 10%. You are already at the stage where 10% is 2.5mg so I really wouldn't try another 5mg drop. The trouble is that the body can become dependent on the circulating pred very quickly and doesn't take kindly to having it taken away. And whatever it is you have, the symptoms of steroid withdrawal are very similar to the symptoms of your original illness - so you don't know whether it is a case of withdrawal or the underlying illness causing the symptoms to reappear because the dose is too low to control them. The pred has no effect at all on the underlying illness, it is allowing you to manage the symptoms until the autoimmune bit dies down and goes into remission. That you had symptoms that went away in 10 days suggests that was withdrawal - a return of the PMR symptoms because the dose is too low tends to get worse as time goes on and that didn't happen. The trouble is, if the pain is too bad you tend to have a knee jerk reaction and go back to the previous dose - which if course works because your body has got what it wants: the old dose of pred.

Over a few years we have found that reducing in tiny steps really does help avoid such confusion and, since you are looking for the lowest dose that controls the symptoms, the small steps help you settle on the right dose more easily as well. So we've been suggesting 1mg drops for some time and it has meant quite a few patients managed to reduce far further than they had done before. 

Then we started to consider that maybe going even slower might work even better. A gentleman from Sweden had worked out a pattern spreading the drop over several days, not just going from, say, 4mg to 3mg overnight - every time he tried that he had a return of pain. His scheme worked and he finally got off pred 5 years ago - and has never needed it again. So several of us tried it at higher doses - and it worked like a dream there too! I used a variation to drop 1mg at a time over a few weeks each time and got from 10mg , where I had always got stuck before, to 5mg where I am at present.

A few ladies started using it at 15mg and have reduced at 1mg a month steadily, finishing one and starting immediately with the next. A consultant in the northeast of England is using one version for all his patients - he's delighted with the results so far. It isn't slower to go in such small steps if you don't end up returning to a higher dose because you are in pain - because then you have probably taken more pred rather than less.

After all that, since you had one or the other problem last ime, I would definitely only try a 2.5mg drop next time. If that is OK then another 2.5mg drop may also probably work. But from 20mg I would slow down a bit - 1mg every 2 weeks might be fine. And I'd also not go from 20 every day to 19 evey day - I'd have a week at least alternating old/new before taking the plunge. You've done so well so far it would be a shame to risk it all. 

I'm putting in a link to another post on this site which has several links in it. One is a paper about diagnosing and managing PMR and GCA, aimed at GPs and which, if he hasn't already seen it, should be of interest to your NP. Kirwan and co reduce faster than we like - they get a 1 in 5 flare rate rather than a 3 in 5 flare rate - but the boss is hearing what we say about improving the reduction patterns. No one has really looked at it in the past - we as patients are offering our experiences in one of the research groups and they are listening to us. Instead of trying all the fancy drugs at massive cost to see if they help we think it is time to improve the simple and cheap option we have that we know works - pred. 

I'm sure you'll find the other links interesting too - the first is an accurate, medically checked info site for you and your NP to get more ideas from and the second is a link to another forum where we work more like a real life support group - exchanging day to day experiences, have a paddy about PMR and pred and look at holiday/pet/garden photos. And above all, have a laugh.

Hope this helps - and I'm looking forward to hearing what you decide to try and how you get on.

Eileen

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And here's the link: https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316

It should appear immediately - it's within the site and was approved but I never know what's happening since they revamped the site again!

I do wish there was an "edit" facility - grrr!

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Thank you MrsO.  I am on routine monthly blood tests, and others are ordered when needed. My markers have been fine since mid-March. NP has advised that it's all about managing symptoms and tapering at this point. I am very fortunate to be relatively pain free.  Because my legs were a problem for so many years I was not very active.  Now that I have legs again I can't stop moving!  As I result I actually lost wieight and I'm doing my best to keep that weight off.  I haven't avoided other side effets though.  Have a happy moon face, thicker neck and mid-rift, tingling feet, weak bladder, etc....but no pain!  I also have a fabulous sense of euphoria.  I've pretty much decided to wait one more week longer than scheduled and drop by only 2.5 this time. 

 

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Thanks EileenH.  I have read an incredible number of the histories and posts on the forum and truly understand the need for caution.  I plan to take it one step at a time, or should I say "one taper at a time", and will stick to the 10% rule.  As quickly as I would like to rid myself of side effects, I do not want to be bouncing back and forth.  My NP is on top of things. I'm schedled for an eye exam and bone scan in the next few weeks.  Monitoring BP and have had to increase meds there.  I've always taken vitamin D and calcium and have doubled those on a daily basis.  I will be starting Alendronate in the next week to help prevent bone loss.  I'll definitely check out the links and share with the NP.  There is very little info and supprt for PMR in Canada.  My MP could find no data on Lodotra.  I shared what I could find on the topic with him.  It was recently approved for distribution in the States under the name Rayos.  Thanks again.

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Hi again EileenH.  The link worked fine and I've actually connected to it before and been to the various site!  You've all been helping me for weeks without knowing it! 

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Hi jean wow what a time you've had my sympathy and heart go

out to you I cannot give you any advise as I am being advised by eileenH and mrsO who have been very helpful but what I can do is to let you know that if you want to scream and shout with someone I'm your girl well 65 year old girl but still I'm here for you take care xx

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Hello again Jean.  Why not hold off on the Alendronate this week until you've had the DEXA scan? Unless the scan shows that you already have thinning of the bones, then you would just be adding in another drug with it's possible risk of nasty side effects unnecessarily.  Your Calcium plus Vit D should be fine.  I started off on high dose steroids at 40mg without the oft automatic addition of Alendronic Acid, and due to an oversight I wasn't given Calcium plus Vit D either, but my bones remained fine.  I made sure I stuck to a calcium-rich diet throughout.  

10

Yes - I'm with MrsO on waiting for the moment with the AA. A couple of weeks isn't going to make any difference and the dexascan may indicate you don't need AA for some time. It's not an innocent little M&M either and could mess up your reduction by introducing other effects. The latest recommendations are not to use it prophylactically and it shouldn't be taken for more than 5 years absolute maximum before taking a break so using it at apoint where  you don't need it is a bit silly.

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I actually discussed holding off on the Alendronate with the NP earlier this week.  He recommended that I think about starting it anyway.  Regardless of the results of the scan I should take it to protect my bones in the coming months.  The symposium article that was on one of the links you recommended promoted/argued that a slow tapering of prednisone is ok when patients are supported by medication to protect heart and bone health, aong other things.  I do hate the thought of yet another medication with side affects to worry about and will definitely think long and hard before starting it.

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You should have been given caclium and vit D right from the start and that is all I and MrsO have ever taken. I refused the AA - and my GP agreed with me. MrsO was quite ill with the AA.

It has now been realised that bone density is not 100% indicative of fracture risk - and we do know people who were on AA for years and then had serious problems. Dentists are very reluctant to do many things on patients taking AA and one orthopod asked one lady why she was taking AA and she explained the rationale on the part of the rheumies - he wasn't particularly impressed! 

You're on a borderline I suppose - up to 65 the Br Society of Rheumatologists say do a dexascan but if that is OK calcium and vit D is adequate.

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Thanks so much Eileen.  I will defiitley hold off!!

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Eileen, it wasn't me who was ill with AA as it was never prescribed for me - lucky escape!  Neither was calcium plus Vit D - the GP thought the rheumy had put me on it and vice versa!  You might perhaps be thinking of the adverse effects I had with the PPIs and had to stop them almost as soon as they started?

Post-steroids, I took a course of Vit D and am on my second course now some 18 months later.  

15

Oooops - sorry! Someone we know was told never to take ANY bisphosphonates ever after her adverse reaction - that'll annoy me now until I remember!

However - it does also show that it is possible to survive on pred without calcium doesn't it!

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Absolutely no need for apologies, Eileen - it's only me after all!lol  Anyway, considering the trillions of people you help with all your advice, I think those little grey cells of your's deserve a big pat on the back!

Yes, surviving Pred without Calcichew or the like proved possible for me - in any case that particular oversight on the part of the rheumy/GP could also have proved a lucky escape when I learned that the extra calcium supplement may well have further harmed my kidney function, because I'm in no doubt that they would have failed to watch my calcium levels.  However, I did ensure I ate plenty of calcium-rich foods.

Do hope you've got better weather over there - very cold wind here and continuous rain for the last few days - the heating is back on! xxx

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It's disgusting today - we've had wind for the last week or so too, and that is unusual, and now it's raing again. We have had a few nice days in between though, sort of 20+ which was hot when the sun was out - but when it wasn't and the wind was blowing it was less comfortable. Today? 13C and rain :-(

We're patiently waiting for a forecast to suggest it won't rain too much to go away with the camper. Or not so patiently...

18

 whats up with this site, i have chimed in several times that i have discovered an ayurvedic med from India that completely knocks out my pmr and the info is not even posted all i hear about is prednisone and other steroids, hello , anyone interested, Robert.

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You haven't actually said that you have got PMR and if you have you have my greatest sympathy it is a terrible thing to have and so painful 

I came onto this site for support and back up from fellow PMR sufferers and they have been absolutely great in their help and support so if you post again to this let the other PMR sufferers know what is the matter with you and see if they can point you in the right direction for help and advise 

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Hello Robert, it sound sounds as though you've had problems getting in touch but you're here now so welcome.

I'm sorry to hear you've been diagnosed with PMR, but the reason you"only hear about"prednisone and other steroids" is simply because steroids are the only tried and test treatment available to reduce the inflammation of this illness and most importantly to reduce the chance of contracting GCA with its risk to eyesight.  If you have found something that, as you say, "knocks out pmr", then it probably isn't PMR.  Perhaps you could give us more details, ie when diagnosed, blood test results, symptoms etc.