Hi - would love input. My Rheumatologist has decided that I should decrease my Pred by 2.5mg per week until I reach 10mg. (So from 20 to 10 in four weeks) and then go down 1mg per month. I am so pleased to be tapering down but am so nervous as well.
Does 2.5mg per week seem reasonable?
My DEXA scan also showed good hip bone density but osteopenia in spine (which shocked me) and he wants me to consider taking Alendronic Acid a Biphosphonate drug whilst on Pred. Any thoughts? I do take Vitamin D, magnesium, Boron and Vitamin A.
Thank you.
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Slosh
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The first taper from 20 to 17.5 should be okay, although it's already over the maximum 10% reduction which is recommended. After that it really is too much. Some people are fine at that level reducing once a week. I was able to reduce 1 mg per week from 15 (my starting dose I'd been on for 5 weeks) until 10. The next reduction to 9 mg was too soon. But I'd been reducing by only 1 mg per week, and you are expected to reduce by 2.5 per week even after 15 mg. And I read about a lot of people who find a weekly reduction too much even at the higher levels, so it really comes down to how YOU feel. A sensible doctor will allow a patient to set their own pace because the whole point of taking pred is to reduce pain and if it stops doing that then the purpose is lost. We'll all say - the slower the better and the lower the slower!
Re the bone density. It's no longer best practice to prescribe AA for low bone mass aka osteopenia. Even mild osteoporosis can be overcome through diet, exercise and supplements. I recommend you tell your doctor you would like to hold off on the OP meds while you do your best to maintain your bone density with the natural methods. To your supplements you should consider adding Vitamin K2. Weight bearing exercise is really important - walking, Nordic walking, tai chi, perhaps wearing a weighted walking vest. Actual weight lifting can be pretty hard on PMR muscles, but it doesn't take much to challenge the bones to make more bone. The whole idea is to overcome the bone-thinning effects of prednisone and I think that can be done. I've had two consecutive annual DXA scans. The first one showed osteopenia and AA was recommended because of the pred. I refused of course, and although my dose was over the bone-affecting level of 5 mg for more than half the intervening year nevertheless I was able to improve my t-score and they are no longer recommending drugs! There's been a recent study published which indicates there's a lot more damage done to bones by AA than previously thought.
Hi HeronNS - thank you so much! Not comfortable about AA - will take your advice although as for weight bearing exercise I do walk a fair bit - but gave dodgy knees and they hurt even more since Pred.
I do take K2 thanks.,
As for tapering he did say to see how it goes and contact him if need be.,
I was doing a lot of walking after I started pred, that's when I started the 10,000 steps thing. Nevertheless there was still an effect on my bones. But a friend alerted me to things like Nordic walking, and taking Vitamin K2, and that got me started doing a lot more reading and finding a better calcium supplement at the organics food store - one which contains calcium hydroxyapatite which I read is better absorbed by people on pred. Calcium citrate would also be a reasonable choice. I've since learned tai chi and I get some alternative treatment from a physiotherapist, but it's not widely available in the UK or Europe, low intensity light therapy, (bioflexlaser.com/about-us/) which apparently lowers cytokine activity and thus helps with the inflammation. I have found it helpful in getting me to a low dose and the ability to maintain that low dose (currently 2 mg). If you're having knee problems can you get some physio for that, something to strengthen the supporting muscles and also maybe have your gait checked in case you are inadvertently doing something else to hurt them? I used to have knee problems but when you mentioned it just now I realized I haven't had any knee problems for ages, certainly not since I started regular physio and some new exercises she gave me to keep my spine straight, as well as the other things I started after the bone thinning diagnosis. The main reason for fractures is falling, so it benefits us to learn ways to improve balance and maintain body strength, so tai chi is good for that. Lots of people on here seem to like pilates, and there are also some forms of yoga which are not too hard on the PMR body.
Thank you. I absolutely believe in low level light (laser therapy) and have just looked at what it would cost. My problem now is that I am running out of money - I havnt worked for 4 months and font think I will be able to until maybe May - I hope. I am a 'live in Carer' - which can be quite demanding. I am doing Aqua Physio at the moment to get strength and mobility back. All self funded.
Oh that does make things much harder for you. I get my light therapy from a physiotherapist, and this is partly covered by our health plan, which is helpful. I think there is a lot you can do without spending much money. Others will concur that rest is very important for healing PMR. For every period of activity, try to get at least an equal amount of rest. For my part I've found I must actively avoid stress and I really believe that it was a tsunami of stressful events which led to PMR. I also find that, living in a cold climate, it's good to stay cosy warm, and this was never an issue for me before, when I was younger and more hale! I even think getting really warm for a while can be almost as good as a session with the laser lights.
I can relate on all counts HeronNS / Slosh - especially avoiding stressful situations (if that's possible?!) and keeping the body / brain 'warm' - even when you feel that you shouldn't need to. Yes, it takes some adjustments in our attitude to Life's every-day physical and emotional challenges. But, maybe, that's the lesson we all have to learn as we get older - PMR or otherwise?
With PMR and similar chronic illnesses, the body's physiological 'balance' is especially disrupted - and physical and mental / emotional Rest are crucial in the coping / recovery equation. That's my take on things if it helps..
As I always say here, try to keep smiling on the Journey of PMR. It can help in all sorts of ways
Thanks yes - I may have even over done it today as I don't feel great - but have also been very bad about my diet the last in the last week. I have a IR blanket - not sure yet if it helps.
Personally think reducing every week is too quick. It hardly gives you the time to know whether each dose is controlling the inflammation. It can take anything upto a fortnight to confirm each dose is okay. If you continue reducing without knowing each reduction has the inflammation under control, you are in danger of going past YOUR optimum level of Pred required. The result of that is a flare, and a subsequent increase in Pred - that is not the aim of the game!
As HeronNS says you are also decreasing more than the maximum 10% recommended, which again leaves you open to problems.
Would suggest you discuss with a Rheumy and come to a more sensible reduction plan - you may be one of the lucky people who can achieve, but from all the knowledge I've gleaned over the last 7 years I doubt it!
My intention wasn't to worry, but give you a realistic view.
I think your Rheumy's view is over optimistic, and if you follow it, you may end up with a longer journey with PMR than necessary, and also a feeling of failure because you haven't been able to achieve what he's suggested.
If he's told you to contact him if you have problems, then maybe he's not expecting it to be as easy as he thinks, or perhaps he's more open minded, and willing to follow your lead, I would hope it's the latter!
On the topic of steroid tapering, here's my best shot from personal experience and all I've learned from the experts on this forum (take a bow, 'experts' - you know who you are! ):
Your Rheumy, like many GPs, probably has the best of intentions in encouraging you to taper as fast as possible. As you might know, long-term Prednisolone / steroid medication for PMR brings its own set of challenges and side effects which can be pretty awful too. It's a Catch-22: does your life effectively stop due to the crippling symptoms of PMR without them, or do you 'swallow the pill' (excuse the medical metaphor) and at least have some quality of life with them? Everyone ultimately has this choice. It seems that a very small minority of PMR suffers can either cope without the steroids or reduce them relatively quickly (as recommended by your Rheumy) without a nasty reaction. But this seems to a VERY small minority - for most of us it's a long, frustrating haul.
I think the main issue here is around your Rheumy's advised speed and degree of steroid reductions (as usual!), in your own health context. Yes, he / she probably has a sound theoretical 'plan' for reduction. But, as Heron NS says, YOU are ultimately the best judge of how effective a tapering gradient is - based on your reaction to it. Everyone is different, and there is no One-Size-Fits-All approach to steroid tapering.
Again, I agree with HeronNS. Such a great / fast reduction (and in periodic step-downs as opposed to a gentle, progressive taper) is far more likely to lead to withdrawal symptoms, not to mention failing to deal with inevitable flares / cycling in the condition itself, and other external factors (e.g. stress etc.) which can de-rail even the best of tapering plans.
As many will report here, too much and / or too fast with Pred tapering usually sets you back to (or worse than) Square One - with the need to over-correct the daily dosage just to get the symptoms (pain, stiffness, fatigue) back under control - which can take several days. So, the theoretically 'quicker' plan for now is usually slower in the long term. I've been there, and got the T shirt! Reminds me of the story of the Hare and the Tortoise...
Maybe you could diplomatically mention the above to your Rheumy (to avoid upstaging him / her with your knowledge gained here)? If he / she is sensible they will let you decide what's best for you and support you in the process, not fight you over it. Mine did when I showed him my 'Escalator' plan (an inadvertent equivalent to DSNS). He trusted me to 'know what's best for me' and actually advised my GP accordingly. Result!
As for AA (or not..), I'm on a learning curve with this topic too!
Hope this helps. Keep your chin up in the meantime, and remember: 'Knowledge is Power'.. just be sure that your 'knowledge' is sound ;-).
After 8 years of being on the forums - frankly, no! Has your rheumy discussed this with the PMR? Has he told it this is what he is intending doing and it WILL comply? It has its own rules...
All you can do is try and down to 15 should be too bad, you haven't been on pred very long so steroid withdrawal shouldn't be too much pf a problem I hope. Heron and DL have said the rest. After 15mg I would insist on going slower, not weekly, every 2 weeks at most. Preferably 1mg at a time. If it doesn't work without you feeling bad - say no.
I would not take AA - especially with the findings that are coming out at present. Not until I really needed it. Do you know what your t-score is for the spine? I also have osteopenia of the spine - I have osteopenia of the hip if it comes to that, but the reading are absolutely commensurate with those for others my age. And they were this level before pred and haven't changed significantly in 7 years of pred. The rheumy I saw for something else this week got all "I have to consider whether you need something". So I told her to save herself the time and effort because NOTHING would persuade me to take AA - especially after last week's reports.
For various reasons I'm beginning to think that the two things which have been helping me the most are the exercise (Nordic walking and weighted vest) and adding Vitamin K2 to my supplements.
I have been on since 2018, long before PMR & GCA diagnosed because of lots of title fractures here and there and diagnosed with osteoporosis. Recently had pneumonia, coughed forcefully last Thursday, the pain in my back was excruciating and I heard something click. Because of pain, visited an osteopath, twice, she sent me to the GP, she thought I may have fractured my spine, the GP thinks I have severe muscle spasm. GP says continue AA as very important, continue. I must admit,
Slosh, tapering off 2.5 mg a week is far too soon and far too much. I would taper off only. 5 MG every month. I was diagnosed with polymyalgia rheumatica 4 yrs. ago and I learned the longer you stay on a dose the better. When you get down to 5 MG l would stay on it for at least 2 months. Good luck
Can I offer a counter experience from those you have had already though the advice of taking things slowly and listening to your body rather than anyone else is exactly the right thing. I would appear to so far have been one of the lucky ones. 72 years old and had GCA & PMR confirmed at the end of August last year. Started on 40 mg for 4 weeks and then came down by 5 a week to 20. Despite my age I still work as a retail consultant in Europe which means traveling and intense 2 week periods of work followed by longer relaxed times back in th UK. After the 5 mg reductions I was due to do 2.5 per week for the next 4 weeks but the first was due at the start of 2 weeks in Moscow so I stuck at 20 for an extra 2 weeks after listening to the advice on the forum. I then came down by the 2.5 per week to 10 but again with a pause at 15 because of another trip (not wanting to reduce on the first day away). I then went to 1mg reductins for 4 weeks at a time and am now in my third week at 7, though again I have always had a pause if i have been on a trip (once to the USA & twice to Switzerland so far this year).
It has not been without its problems - issues round my eyes, regular dull headache and sweating even if just walking through an airport terminal in a polo shirt and I come back from a trip very tired and fall asleep at the drop of a hat (or is that just my age!). But I have had no return to any of those terrible symptoms of this time last year and the swollen arteries (not veins as PMRPRO corrected me about last year!) have now gone. I am off back to Moscow on Monday and will be due to go to 6mg a week later but will delay until I am back.
Methetraxate was added into the mix at the beginning of November and maybe that is helping the absorbtion of the corticosteroids.
So there is evidence that the faster regime can work (even if only a sample of one) and I am more than ready to pause or switch to a slower regime if that is what my body tells me whatever the medical advice is because the totally persuasive advice from the body of experiential advice on this forum is that you have to take things steadily if you are going to manage the symptoms
Oh wow Retailmonkey - you have a busy life at 72! Thank you - Yes that is re--assuring. What else do you do to support your health - e.g. diet, exercise etc.
I've always been very active - played rugby league professionslly and runa sub 3 hour marathon - but have bone on bone arthritis on the inside of both knees and was recommended for partial knee replacements 4 years ago. Was instructed to stop running but keep persuading the consultant that I can live with it to delay the inevitable as long as possible (we review once a year and keep inching closer). So now I walk at least 4k every day (with some up to 10 and cycle (though I have to admit to being a fair weather cyclist which means that during the winter it is on an indoor bike)
With regard to diet I have always been on the chunky side (given my rugby background) and so had to watch my weight so have always eaten what would be called a healthy diet (little red meat, lots of fish and vegetables) but inevitably put on a little weight with the corticosteroids. However through this forum I discovered the 5/2 diet (normal eating on 5 days and virtual fasting on the other two) and Jason Fung's book - The Obesity Code.
The main thing i have learn't through the fantastic advice on this forum is that there is no cure at the moment and so all you can do is manage the condition. So managing is all about having a plan, monitoring its effectiveness and responding to events - the best advice I have had along with always being positive and optimistic
There has been at least one study (and no, I haven't the ref) that running after a joint replacement doesn't wear them out faster! It was German I think - they tell you to go back to what you were doing before. Other than parachuting I believe.
You have been exceptionally lucky - and you are right, you are a sample of one! After 8 years on the forums (all 3 of them) - most people come a cropper when they are told to reduce quickly.
I haven't had the joints replaced yet but maybe I should and can start running again!!
I will keep the forum informed of how I progress but am totally expecting my luck to run out at some stage and hope that it isn't a case of the longer you go the harder you fall
Yes it is good to get a different perspective on the GCA/PMR/Pred journey. It's not something we read very often, but I suspect that's because people with little or no problems have no need for a forum like this. Why would they, if everything goes according to plan?
Despite the fact that pre-diagnosis my life was a mess, and starting at 80mg, my actual reduction of Pred, apart from some side effects, has been relatively problem free. Won't say completely, but no flares! Like you, have stayed at certain levels at different times, mainly around bereavement, flights, holidays etc. Whether that is due to the fact that I reduced comparatively slowly or not I cannot say. All I can say is, it worked for me and after 4 and half years I'm now Pred free (6 months).
Long may your reduction plan remain on track, and please keep us informed, particularly you are now getting to another pivotal point when your adrenal glands should kick back in.
Yes I think I have been very lucky and have been waiting for some sort of flare which I think must happen at some stage. I did thingk that it had happend a few weeks ago but it turned out to be a significant problem with my sinuses leading to nearly as intense a headach as when the PMRGCA was at it's peak pre-diagnosis (saw a trainee GP at my surgery who was moving from working in heart surgery. She had never come accross the problem, quickly researched it and gave me the most thorough examination and review I have had for a long time, even took my blood test samples into the hospital on her way home to get a quick response)
I am very concious of the adrenal gland kick in and am watching things closely. In some ways i think the moscow trip might be a good thing as the problems I have to deal with overthere certainly get you working as does dealing with a team of people who are almost young enough to be my grandchildren!!
Grandchildren can be great...but, on the other hand!
It's not a given that you will have a flare, I didn't. My ESR markers did go high at one point, and my GP and Ophthamologist panicked a bit and raised my Pred although I didn't have any symptoms.
In retrospect I know it was down to stress alone, when my late hubby was very ill.
Must admit I only fly when going on holiday, and it is a bit of a hassle, but when I went to NZ to see daughter I pushed the boat out (mixed metaphors!) and went Business, bit pricey, but worth it - had GCA& arthritis at the time, but arrived refreshed. Have saved up enough again and off for Christmas/New Year coming!
No you don't with PMR or GCA, but if you do, you can always request assistance. Most airport/airlines are very good. And much to my surprise when I went by train from Bournemouth to Manchester last Christmas so are the train companies!
First time, I was a bit reticent about requesting assistance thinking I was a bit of a fraud, but with arthritic knee and shoulder now I do it as a matter of course.
So don't let PMR or GCA stop you doing things, you just need to spend a bit more time on the planning side of things.
Interesting to hear your story Retailmonkey. You seem to be doing well and I think the main point is to let the symptoms be your guide, at whatever speed the tapering.
As for the international travel, I'm in a similar line of work to you and have regularly travelled across Europe for 20-odd years for consultancy assignments. If it's any consolation, I was starting to find even short haul flights tiring (physically and mentally) - effectively a day's travel time even for a direct 2-3 hour flight when you add in all the packing, prep and local transfers at each end. And, it's work / business! It probably sounds glamorous to those who only ever fly on holiday, but when you've spent endless hours of your life waiting at airport security, checking-in and doing those long treks to / from departure lounges and arrivals the novelty wears off a bit!
I think you have a point about age too. At the best of times, international travel and logistics are tiring. With PMR and having just turned 60, I have less of an appetite for it now that airports are more 'edgy' places to be, security-wise.
As I write this I remember a disastrous trip from Heathrow to Dusseldorf to deliver 3 days' management training a few years ago when, after a major security scare, my anticipated end-to-end journey time of about 5 hours morphed into 23 hours, arriving at 03.30 in Dusseldorf. And just for good measure, my hold baggage (with suit, materials etc) went missing (retrieved from Turin 2 weeks later!). I arrived at my client's offices at 08.00 dressed in casual gear, looking and feeling like I'd been dragged through a hedge backwards - and with no training presentation - Yikes! After explaining what had happened to my eager, international English speaking managers (from 6 different countries), we all got stuck-in and more or less improvised for 3 days with just flip charts, various props and a lot of fun in between the serious stuff of 'Management and Motivation'. Funnily enough, despite the logistics nightmare it turned out to be one of my most enjoyable and successful assignments ever. Happy Days!
Enjoy Moscow and don't forget to pack plenty of tabs (in your cabin baggage, of course..)
Our presentations ALWAYS are taken in hand luggage - at least in the form of A4 sheets but these days it is relatively easy with memory sticks! We also email a copy to ourselves...
We don't ravel for "business" as such, just to medical/scientific meetings. But I find flying totally and utterly boring! Have done since my very first flight umpty-tump years ago.
Presenting technical / research data etc effectively is very important to get 'right' at formal meetings with many audiences. I've had the privilege of running lots of Presentation Skills training courses both in the Corporate and Public Sectors for many years and could write a book about the hazards of getting the content and / or style wrong!
In my type of work (behavioural / influencing / soft skills), the intriguing thing was that when I realised that my training 'materials' (Powerpoint presentation etc) were irretrievably lost, I actually found it quite liberating. Why? Because I could just use my knowledge, experience and audience skills - 'winning Hearts and Minds' - to facilitate the event spontaneously and get a result, regardless!
Happy Days.. and I agree with you about the flying - especially in the current times
Mine always goes with me on my laptop too but I file everything in "Dropbox" which means that all my electronics are updated at the sametime and everything is available via any computer, anywhere, anytime which you don't need to worry about it. Like MB I am not a fan of PowerPoint especially when it is used as a script and read. If I have to use it I try to work with the 10/20/30 rule - 10 slides, 20 point wording and 30 minutes presentation. Luckily it is not too great a part of what I do.
In a way PMRGCA has made me more relaxed about it as it has taught me to take things steadily and listen more to the reactions just as you have to do with the condition
I have always been able to take or leave flying over the 55 years I have been doing it from my first £5 pound student flight from Dusseldorf to a Luton airport which was then just 2 wooden huts or my 24 hour flight to Buenos Aries on a Comet which stopped at Paris, Madrid, Dakar, Receife and Rio before getting there and we had to get off at each of those places whilst they refuelled the plane. How things have changed!!
Hello Retailmonkey. You are so fortunate to be able to still work at 72 with PMR/GCA. When I came to the UK 17 years ago, it was my intention to work, as a live-in carer until age 70. At age 58, GCA attacked me, when on duty. My life changed overnight. I haven't been able to return to any work, as other health issues set in, shortly after. Good on you, and with all the travelling. You are blessed indeed!
Slosh, just a note about vitamin D and calcium. I took an over-the-counter multivitamin and mineral supplement for the first 9 months after diagnosis of PMR, because my GP didn't prescribe any. Then I had a blood test to check vitamin D level and it was low, so now I'm being prescribed a tablet containing calcium and vitamin D and am having a MEGAdose of vitamin D for 2 months to top up my level. Ask your GP to check your blood vitamin D, as you don't want your bones to worsen while you're on pred.
The others have said it all about the tapering, but just to say that I took 19 weeks to reduce from 15mg to 10mg, which was probably much too slow, but faster than my GP wanted!! (He wanted me on 15 for 3 months, then 13 for 3months....) We read here about so many different 'regimes', but in the end, it's down to us and our symptoms.
Hi Slosh, Just to add to the others' comments, I think RetailMonkey's experience really highlights how individual we all are in our reactions to the condition and the pred. I have come across a couple of people who have had a very steady progress through the illness, always going in the right direction, and getting completely free of the condition after about 2 years. But, it's clear from this forum that many, if not most, of us are not so lucky.
I am fairly early into PMR (suffering about a year but only diagnosed and started on pred about 6 months ago), and initially I agreed to follow my GP's "rheumatology based guidelines" for reducing at 2.5mg steps from 15mg to 10mg. It was too fast for me and when I reached 10mg I had a flare and had to go right back to my starting dose of 15mg. My dismay and sense of futility at being back where I started were so strong that I will now only go at a really slow pace - possibly slower that I might actually have to, as for me the need to feel I'm at least going in the right direction is really important. So, symptoms are king - listen to what your body is telling you! I'm now just down to 11.5mg and able to feel more cheerful about how I'm managing things.
As for alendronic acid, its benefits seem to be increasingly questioned (when set against its possible drawbacks), and I'm amazed that it isn't standard procedure to arrange to test bone density before prescribing this drug. I had to ask for one, so that I could make a more informed decision. When my results were found to be very good, my GP still wanted me to take AA as it's impossible to know what damage the pred might be doing and another scan would be 1-2 years away, but I decided to go down the route of alternative ways of strengthening my bones and take my chances on a good outcome.
Thank you so much for your input. I have not started tapering yet as I only saw my Rheumy yesterday. Since yesterday I have also not been feeling great. Not sure if it's my thyroid (as that has gone sightless overactive) or that I started a new prescription last week (and they were a different brand?) or that I over did it at Aqua Physio and have been so bad about my diet in the last week! So probably a combination of all the above. Feel some of the previous symptoms and a bit flu-ish. A bit of a wake up call!
Sounds like it might be helpful to let things settle for a few days - plenty of rest,some gentle exercised, balanced diet etc., to see if things improve - and whether the flu-ish feeling is a cold/flu coming on (you never know - and certainly when I've been laid up with a cold I've felt the need to increase my pred dose just very slightly, so for me definitely not a time to reduce!). I find it's very easy to overdo things on days I'm feeling good and even a very little overdoing pays me back the following couple of days.
If you can get yourself more comfortable by slowing down, when you then begin reducing, you will have a sort of baseline. What I've gathered from the advice on this forum is only reduce when you are feeling ok enough.
A dexascan is recommended in the BSR guidelines for all patients under 65 (as stupid an age guideline as "over 50" is for the age at which you can develop PMR or GCA. But we won't go there...
I have had PMR for 2.5 years and am currently on 5 MG per day which seems to be the level which keeps the pain at manageable levels for me. For you to go from 10 to 20 so quickly does seem odd. My experience was to go from 20 to 15 as you have by reducing 2.5 until I got to 15 mg but I changed every 2 weeks not every week. Then I stayed on 15 mg for 1 month and reduced by 1 mg each month to 10 mg per day. From there the reduction was 1/2 MG each month until I got to 5MG, where I am now.
When I first was diagnosed I tapered much faster and got from 20 to 3 mg in 9 months, only to have a big flare which caused me to have to eventually go back to 15 mg and start a slow tapering from there. I think everyone is different. I think you have to find the level of pred where your symptoms stay manageable. I tried to go below 5 mg and started to get shoulder and neck pain at 3 mg. I went back up to 5 mg and I feel better. Also the bad side effects from the prednisone don't seem to be as much in play on 5 mg as on higher doses so I feel better about staying on it.
When I was on 10 MG or more my blood sugar was spiking causing medication induced diabetes. That is now gone on the 5 MG dose.
Take it slow. In my opinion, you will be better off in the long run.
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