Unable to reduce Pred. Any ideas?: I'm having real... - PMRGCAuk

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Unable to reduce Pred. Any ideas?

Cycling_bloke
Cycling_bloke
89 Replies

I'm having real difficulty reducing my Pred dosage below 8mg. Any ideas?

I started with PMR in December 2017 after a cycling accident, though it wasn't diagnosed for 3 months. I started on 25mg of pred and got down to 12.5mg without problem. But from that point on it's been extremely difficult to reduce. I've been on 8mg for the last 7 months and all attempts to go lower have failed. Even at 8mg I have plenty of symptoms.

I'm 61 years old and I'm extremely fit. I ride a bike 300 miles a week. I race bikes for fun, so a lot of the 300 miles is undertaken in excess of 20mph. My rheumatologist has not suggested reducing the volume or intensity of training.

As a matter of interest, before I started on Pred. I was extremely thin. After taking pred I lost even more weight. My body fat fell well below 5%!

I'd like to get the pred dosage lower as it is affecting my training. I'm losing muscle mass and it is affecting my racing. Any ideas?

89 Replies
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cranberryt

It may be you are just doing too much. Unfortunately the prednisone can make us feel like we can do it all but if the disease is still active, that is not necessarily the case. Have you tried the slow taper method of lowering by 0.5 only 2 days a week? Then 3 days a week, etc.

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Cycling_bloke

I vary my dosage every day by 1mg or so depending on how I feel e.g. 7, 7, 8, 7, 8, 8, etc. I failed every time to get below 8mg.

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Poopadoop
PoopadoopAmbassador
in reply to Cycling_bloke

I am afraid that is the wrong way to do it you will end up with steroid withdrawal symptoms all the time. Some people mistake these for PMR and increase so withdrawal goes ...you drop comes back.anf you may feel worse on higher days.

Your body is obviously protesting at the 1mg being there some days and not others then back. Have a look at the pinned post for a proper taper that's proven to work. There are a choice. Stick at 8mg for at least 2 weeks then try a 0.5 taper using DorsetLady's simple taper or the dead slow nearly stop. When you get down to 7.5mg, stay for a couple of weeks. If you get pain in first 2-5 days it's probably steroid withdrawal...OTC painkillers will help. If that clears and 2 weeks of feeling ok at 7.5, then start a new 0.5mg slow taper again - if their are symptoms stay there and see how it goes. Get worse, back up. To 8mg. The body won't miss the 0.5mg drop that is gently introduced rather than just jumping around everyday. There don't really work like that effectively. I would also suggest that you do gentle exercise during the first week that you have fully dropped by 0.5mg. say try yoga and Pilates to lengthen and strengthen the muscles via gentle stretching and some gentle walking to stretch all your leg muscles. Given the miles and intensity you mentioned I can imagine what you consider light work!

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cranberryt

That was going to be my suggestion as well. Go slower! Smaller drops. And I know you don’t want to give up the training or slow down but consider it. I was working out regularly, building muscle and getting strong and healthy when this disease hit me. I gave it up until my pain was controlled and now I have altered my workouts to what my body allows me to tolerate. Some days that is nothing. And I am not even close to the weights I could lift before. I just have to let my body dictate what it can handle right now. And hopefully when I get to remission, I can get back to where I was. Hopefully you can find that right balance for you.

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Poopadoop
PoopadoopAmbassador
in reply to cranberryt

I think that's the point. Recognising what the pain is, how to manage it and ensure you aren't damaging yourself.

I t made me think of mark Cavendish the cyclist who had Epstein Barr. Tried to get back into full training but instead of weeks it took months. Some might argue years to recover!

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Cycling_bloke

My tapering is extremely slow - zero milligrams in 8 months.

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DadCue

If you read what people post on this forum it is more like 8 mg over 8 years. I understand what you are saying and I practiced the "depends how I feel method of tapering" as well. It did seem very slow but I wasn't very successful. I can't guarantee that the DSNS method will shorten the time either but it may control your symptoms better.

I used to enjoy distance cycling and had the attitude of "embrace the adversity ... full speed ahead". My outcome isn't ideal after 10 years of PMR. I feel that PMR, prednisone or possiby something else has taken a heavy toll on my body.

There is a 500 mile "fun" ride that attracts 15,000 bicycle riders annually in July that I used to enjoy. I did it every five years and the last time was 2010 ... a year or two after PMR was diagnosed. I missed going in 2015 but still entertain the the thought of doing it in 2020 at age 65. First, I have to build up my exercise endurance to more that 5 minutes.

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Cycling_bloke

I don't vary the dosage depending on how I feel. I vary it between 7 and 8mg depending on how I feel. My pharmacy doesn't seem able to supply 2.5mg tablets in spite of me asking repeatedly. As a result I only have 5 and 1mg tablets. My rheumatologist has confirmed varying by such a tiny amount is unimportant.

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PMRpro
PMRproModerator
in reply to Cycling_bloke

Any self-respecting pharmacy will sell a pill cutter. That works too.

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DadCue

Sorry, I misunderstood. In that case, I don't know what to recommend. Seems like what you are doing isn't so bad. I didn't get much guidance the entire 10 years after being diagnosed with PMR. For 15 years prior to PMR, I was on and off prednisone more times than I care to admit and I thought I was very skilled. Each time was a relatively high dose (30 mg and up) and tapered off over 1 to 3 months. I never had any difficulty tapering off. Long term use at relatively small doses of 20 mg or less made tapering off extremely challenging.

I'm not sure about the intense cycling. My rides were joy rides compared to yours. What forced me to stop was more likely caused by pred. It began with dangerously high blood pressure which caused left ventricular hypertrophy. Then a year or so later a massive bilateral pulmonary embolism happened which was called "unprovoked" --- whatever that means.

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Cycling_bloke

Thanks for the reply.

I've tried that approach as well. No matter how I try to reduce it almost always ends the same. I've tried all sorts of OTC pain killers without effect. There is no way I'm reducing too quickly! I've managed zero milligrams in 12 months.

I do 2 -3 hours of stretching every day,plus 1 hour gentle swimming.

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PMRpro
PMRproModerator
in reply to Cycling_bloke

BUT - the whole point is that you were never reducing relentlessly to zero. You are tapering the dose slowly to find the lowest dose that is enought to give the same level of relief from symptoms as the starting dose did. That you appear to have done.

It is a technique called titration and is used for many drugs - but mostly going up. In the case of pred it is going down to give good relief quickly and then find a longer term dose afterwards. Pred does nothing to the autoimmune disease process, it is managing the symptoms to allow a decent quality of life while the a/i disorder chugs on in the background, creating inflammation every day which is mopped up by the pred. The a/i disorder may last for a couple of years, very occasionally less, but the median duration of pred management is just under 6 years - albeit that for quite a lot of that time you are at a dose in single figures as you are.

There are top experts in the field who suspect that extreme exercise can be the final tipping point to develop an autoimmune disorder and that overdoing it during the illness may prolong it. You will get lower - just not yet.

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Cycling_bloke

Yes, this is the conclusion I have come to. I'm pretty sure the PMR was triggered by a crash I had on black ice in December 2017. The PMR symptoms started immeditaely after that, though I didn't know what it was at first I don't think the PMR was caused by hard exercise.

I suspect I've been trying to reduce too quickly - not on a daily basis as some people have suggested but over a period of months. When I got to 9mg I should probably have paused, but I carried on down to 8mg, then tried to get to 7.5 for month after month.

I've taken it back to 10mg for August and will keep it at that level for a couple of months beforre attempting 9.5mg.

What I don't want to do is stop cycling, as some people have suggested, in the hope that the condition improves. I tried taking it easier for three months last year and it had no effect whatsoever. If anything I feel much better after riding hard, than riding easy. My PMR symptoms feel worst of all if I don't ride.

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PMRpro
PMRproModerator
in reply to Cycling_bloke

It is a fundamental choice: take enough pred to do what you can do or reduce the level of activity to get to a lower level of pred. You can't have both.

PMR has no single cause. It is a culmination of insults to the immune system where eventually one final straw breaks the camel's back and it goes haywire. You cannot say that it wasn't the extreme exercise, you cannot know and there have been studies which suggest that athletes have impaired immune systems, particularly immediately post heavy exercise periods. It may not have been but no-one can say for sure either way. As a scientist I keep an open mind.

What I can say is that you should be grateful you have had a relatively easy ride thus far. Skinnyjonny of this forum was a firefighter and training for high altitude climbs (Nepal) and marathons when PMR struck and put him in a wheelchair. It took him about 18 months of VERY gentle rehab to be able to do a 5km run. He is about to do another high altitude climb - it will come back but patience is the key.

healthunlocked.com/user/ski...

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Poopadoop
PoopadoopAmbassador

My view would be to have a rest from intense training for a while - speaking from experience and not as a medical Dr who hasn't had PMR (and probably hasn't done such heavy cycling - I have but a few years ago - Pyrenees and massive central as well as UK)). It's not the pred that's the problem. You aren't allowing your body to rest and recover from a serious auto immune condition that is a vasculitis. That means your muscle fibres don't get to repair if you keep tearing them, especially in an "ageing" body which has a wonky immune system. The best way to reduce pred is to stop putting so much pressure on your muscles that are struggling to repair themselves.

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Cycling_bloke

At the end of tyhe racing season last year I had three months of much easier riding. I did no hard sessions at all. It didn't make any difference. I just couldn't reduce without the symptoms coming back. I'm reluctant to reduce my training as my rheumatologist hasn't recommended it

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Poopadoop
PoopadoopAmbassador
in reply to Cycling_bloke

You asked for ideas I gave you mine. Please bear in mind that the median length of treatment for PMR is 5.9yrs you MAY have a way to go sadly.

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Cycling_bloke

I suspect you may be right. I can't see myself getting over this in the next couple of years. Most of the reputable medical websites I've seen suggest 2-3 years.

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Christophene

This is just a statistic: but average length of time is 6 years, 3 months.

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Cycling_bloke

Where does this statistic come from? Most of the reputable medical websites suggest 2-3 years. I've never seen any which suggest such a high figures as the average.

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Poopadoop
PoopadoopAmbassador
in reply to Cycling_bloke

It comes from a study by rheumatologist and partners who has been an advocate for PMR patients and worked with the condition for years. Sadly he retired last year. The is one of the research articles that mentions 6years of treated PMR. That's treated. For those of us that went undiagnosed the overall time to remission is more that that for PMR in total.

practicalpainmanagement.com...

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Cycling_bloke

Thanks for the link. It looks like the dosage I'm on is not too far above the average, so I'll just have to be patient.

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DadCue
DadCue
in reply to Christophene

"Median" time taking prednisone ... might not be the best statistic to measure how long PMR lasts.

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PMRpro
PMRproModerator
in reply to DadCue

Possibly not - but the real figure of how long one needs pred for is more useful.

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Maisie1958

Hi I did find the reduction from 9mg to 8mg prednisolone daily the hardest though I’ve now been messing around between 2mg to zero for the last couple of years. I’m the same age & thought I was reasonably fit but couldn’t possibly do the exercise you are doing even 4 years on, not sure many even “healthy” folk our vintage could do what you do now! Good on you doing what you obviously enjoy but I have the feeling PMR isn’t particularly pleased with your regime, you are certainly very disciplined, but maybe just a bit too hard on yourself? I found the less I did-physically and mentally-the easier the reductions, but everyone is different.

I do enjoy hearing how well people do with their passions, gives me hope, thank you. All the best.

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Cycling_bloke

At the end of the racing season last year I had three months of much easier riding. I did no hard sessions at all. It didn't make any difference. I just couldn't reduce without the symptoms coming back. I'm reluctant to reduce my training as my rheumatologist hasn't recommended it

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Maisie1958

I’m sure you’ll get more replies but certainly from 9-7 mg Pred daily I had to do extremely slow reductions of 0.5mg as cranberryt suggested rather than the larger 1mg or more I had managed earlier.That did seem to help a lot though seemed to take forever. Atb.

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Cycling_bloke

I've reduced 0 milligrams in 12 months so I don't think I could go any slower. I've tried all sorts of different methods all of which are very slow. All that happens is that the symptoms just build up over a period of a few weeks until I'm very stiff and sore.

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Maisie1958

To be fair I know that feeling-I thinkI should be in Club Zero after all this time but symptoms always return after a few weeks off Pred but certainly being comfortable at 1mg daily is nicer than just being reasonable at above 8mg of prednisolone. Side effects much less.

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DorsetLady
DorsetLadyPMRGCAuk volunteer
in reply to Cycling_bloke

Hi

Despite what everyone has said, you don’t seem to recognise the fundamental point they are trying to make.

IF you have PMR you are working your body too hard - never mind what the Rheumy might say.

As an elite athlete pre PMR you’ll SHOULD be able to get through it easier than most, but you need to appreciate you have a serious systemic illness that lasts as long as it wants - not necessarily the 2years that some doctors and sites continue to quote, although the more enlightened ones are now quoting nearer 6 years.

However long it may take, you need to take the correct dose AND allow your body to rest and recuperate. From what I have read you are doing neither, nor are you taking into account that you are around the level that your adrenals need to start working again.

Unfortunately until and unless you follow a steady slow tapering plan - not varying it daily as you see fit - and adjust your activity level - I fear you will remain in the same situation.

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PMRpro
PMRproModerator
in reply to Cycling_bloke

You can repeat that mantra as often as you like to us - we are saying to you, you are doing too much if your aim is reduce the pred dose. Believe me, we want to tell you something else, we want you to get off pred just as much as we would all like to get off pred. It doesn't work like that though. Your rheumy has neither had PMR (unless he is very unusual) nor done such a level of sport. He has little idea.

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Marilyn1959

Hi Cycling_bloke. I am and have never been fit, but am like you stuck on similar level of 7mgs (almost a year now!) I am in awe that you are physically able to do your exercise regimes when in comparison I have difficulty walking 30 metres! If your current levels are working for you why rock the boat?

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Cycling_bloke

Pred. produces muscle wastage, and I'm definitely suffering from that. That's why I'm keen to get off it.

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Marilyn1959

So it is the pred that causes the muscle wastage not the PMR? Can now understand your angst.

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Poopadoop
PoopadoopAmbassador
in reply to Marilyn1959

See below

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Poopadoop
PoopadoopAmbassador
in reply to Cycling_bloke

It is not JUST pred.

PMR can

"In some rare cases, (cause) permanent muscle weakness, degeneration and loss (atrophy) of muscle mass, and disability may occur."

If you are exercising and finding muscle loss even on low dose of pred then it may well be PMR.

rarediseases.org/rare-disea...

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Christophene

As has been said many times here before, there is no rhyme or reason to the way each individual feels with tapering. Your taper has brought you close to the amount of cortisol your adrenals make on its own daily naturally. That seems to be a sticking point for many of us. I don't know why except that your own adrenals are not up and cycling yet. And they may not be for a long time.

I agree with the others; you are doing way too much for this condition. We always want to think we can return to our PMR state , but it doesn't work that way. A similar thing happened to me recently; I felt ready, after almost 3 years since diagnosis, to start physical therapy. I have always been a diligent exerciser most of my life and was in good shape. So I thought PT may be a good way to ease back in to exercising at the gym which I enjoyed very much.

I was so wrong. After 5 or 6 sessions, I was back to Square One, and stopped on advice of this group. I realized that the therapists had never even heard of PMR. And they did not know what to do with me.

I understand that cycling has been a very important part of your life. Likely, your rheumatologist wasn't paying careful attention to the degree of your physical activity or just didn't know any better. You cannot force a taper down to a level you think will help your cycling. Tapering doesn't work that way.

I think a mind reset is the only idea that will work. You are losing weight and have noticed muscle wasting. That is not what you want, is it? This is not a disease you are in control of, nor is steroid tapering. It controls you, not the other way around.

You are going to have to lighten up on the cycling, or stop it altogether, and possibly raise your dose of Prednisone. This is not what you want to hear, I know. I would say you might do well to look for other interests besides cycling. Understanding that you are not in control of either the disease, or the speed of your taper is probably the best idea to start.

Like it or not, it is what it is. You are risking your overall health for the long run by continuing as you have been. And it will really catch up with you. As cranberryt mentioned, sometimes Prednisone can make us feel invincible, but it doesn't last. Calming down is the best idea; you can't beat PMR; it will beat you first. Sorry.

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Cycling_bloke

My rheumatologist is aware of the volume and intensity of cycling I do as I have raised the issue with her several times. She has never suggested I reduce either the volume or intensity.

Pred. doesn't make me feel invincible - quite the opposite. Pred. is reducing my muscle mass and power.

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Christophene

You are certainly not a typical PMR sufferer. Maybe you have been misdiagnosed?

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Cycling_bloke

I have all the classic PMR symptoms which respond to pred. very quickly.

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SheffieldJane

My main thought is the muscle weakness that we experience with PMR and in particular Prednisalone. It maybe that you are going to have to backtrack and embark on a programme of strengthening individual muscle groups, rather than pushing your body, so extremely and so quickly. You cannot force your recovery, I suspect you have been driving your body too fast, too soon. Perhaps a good Physiotherapist or coach would be useful now.

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Cycling_bloke

Thanks for your reply.

I don't thin k I need to strengthen individual muscle groups. I have muscles in places where most people don't even have places! I'm 61 and look like a very muscular 25 year old.

I'm not pushing my body too quickly. I didn't have a break from cycling when I got PMR. I just carried on through it. I can ride hard without any problem. The only problem I have is with reducing the pred.

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Longtimer

I feel myself coming out in a sweat reading what you are able to do...but you can`t complain about the Pred or PMR if you want to continue with what is normal for you in cycling.....I have never in 7 years of PMR read on here anyone that can do so much!.....do less of your normal and maybe you will be able to lower. With experience I can tell you, Rheumatologists don`t know it all trust me!....Hope that hasn`t sounded harsh...but you have a chronic illness that wants to be listened to....

Good Luck...

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SheffieldJane

Because of pain?

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Christophene

Seems like you asked for ideas, but are resistant to all. I apologise, but I think it needed to be said.

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Cycling_bloke

I'm open to ideas as long as they are scientifically based. That's why I trust my rheumatologist. If someone pointed me to an academic journal article which had investigated the link between extreme exercise and PMR I would read it - but I haven't been able to find one.

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nickm001

you do realize that whatever you are doing cannot go forever. Our body have a way to "ground" us to reality. You have serious autoimmune illness and have to accept the reality. Combination of pred and intense exercise will result in muscle wastage. Prednisone changes protein metabolism and prevents muscle repair, which are damaged after intense training. You basically never recover and continuing "AS IS" will destroy your cycling future. You have to accept that you are ill and make a decision to do change things.

One bright point in all this is that medium intensity, recovery type exercise blocks negative effects of pred and helps muscle recovery. You need to change your training to be just like in off season and concentrate on recovery rides, and then after you feel better, try to reduce pred dose. Missing one season may be a small price to pay in a long run.

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Cycling_bloke

Yes, thanks for the advice. This is what I did at the end of last season - nothing but recovery rides for three months. It didn't help. I still couldn't reduce. I may well try it again this year, as the racing season is now coming to a close.

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nickm001

also get a pill cutter and try 0.5mg step - 8-->7.5 and see if it works better

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Cycling_bloke

I've been alternating daily betwen 7 and 8mg in order to average out at 7.5mg. My pharmacy used to supply 2.5mg tablets but doesn't seem to be able to get hold of them any longer. I'll get a pill cutter as you suggest.

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Rimmy

You sound like a very determined person but clearly what you are doing is not working. It is difficut for most of us to imagine that kind of really intensive exercise regime - which sounds like you are training for the Olympics !! While in some ways I admire your dedication you know the old saying about doing the same thing over and over but expecting 'different results'. If the 8mg dose is not sufficient to deal with your inflammation levels - quite simply you are not taking enough. I have to say although you might 'look' in your 20s you are not and your body will tell you that regardless. And yes muscle mass can certainly be affected by Pred so it is important as you would know to keep an eye on diet - especially protein levels as you do sound rather thin. As others have suggested here you should perhaps slow down a bit - and allow some recovery time between these bouts of intensive exercise - and quite honestly forget about any Pred reduction until you have no remaining PMR pain. Thing is none of us want the side effects of Pred but we take it because on balance it is better for us than the alternative and you do still obviously 'have' PMR .....

Best wishes

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Cycling_bloke
Cycling_bloke
in reply to Rimmy

I eat extremely well - probably at least twice as much as a "normal" person, and all of it high quality food,

I had wondered about how much one should put up with PMR symptoms when trying to reduce. I've been trying to force the reduction by ignoring the discomfort. I've been giving up once I have trouble getting in and out of the car. Bizarrely a 70m bike ride is rather easier than putting on my socks as the exercise loosens things up.

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Rimmy
Rimmy
in reply to Cycling_bloke

Some people clearly put up with lots of symptoms even before seeing a doctor and then many do for even longer as diagnoses can be relatively 'slow' . Obviously what any individual can tolerate is clearly up to them but it is important to remember there is some evidence that untreated or inadequately treated PMR can morph into GCA.

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Cycling_bloke
Cycling_bloke
in reply to Rimmy

Thanks for the reply. Yes I was aware of the CGA issue. I've decided to stop trying to reduce for a few months and see what happens. My attempts to reduce almost always fail anyway, so why infliect the discomfort on myself.

I suspect my rheumatologist will want to put me on methotrexate if I can't reduce further. I've been very keen to avoid it because of the side effects, but that may be the route to go down.

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Rimmy
Rimmy
in reply to Cycling_bloke

I Think you have now answered your own question re Pred and 'discomfort' - your conclusion is shared by I think 'most' of us here. Methotrexate is another issue - worth doing a keyword 'search' on this forum to read what others here have said about it.

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PMRpro
PMRproModerator
in reply to Cycling_bloke

You CANNOT force a reduction - all the pred is doing is keeping the inflammation under control. Too little pred, there is a bit of inflammation left over and, like a dripping tap, eventually the buck et filled up and overflows. The result is the state you were in at the start and you have the choice of continuing like that or taking pred.

I'm sorry of you think we aren't scientific enough - but my explanations over the years have been based on my scientific knowledge as a physiology graduate and life-long involvment in medical science, including being married to a world-leader in the vascular field and oxygen transport. No, I can't give you papers to read - and some of the knowledge I have gleaned over the years would be chinese you the average rheumatologist. They DON'T know it all unfortunately.

Everyone's experience of methotrexate is different but mine was of overwhelming fatigue that stopped me even walking more than a few hundred yards. It isn't an answer either, it doesn't replace pred nor does it shorten the disease - and I'd suspect your problems are as much the continuing disease process as anything else. And frankly - since you are at a physiological dose of pred, I'd be very wary of adding mtx. It's long term side effects may be worse than those of a couple of mg less of pred which is what most people manage on mtx.

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Cycling_bloke

Many thanks for the reply. The side effects are exactly why I've been highly resistant to taking methotrexate so far.

As you've worked out I've been trying to force the pred. dosage lower over a period of months. I did so in the hope that my adrenals would eventually start to produce enough cortisol to offset the reduction in pred.

As I've said previously, the reduction was incredibly slow, but was probably still too quick. Perhaps after every successful monthly reduction of 0.5mg, I should hold it at the level for a few months.

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Hidden
Hidden

Just try something different... just don’t do a damn thing for two weeks and see how your body reacts. You may be pleasantly surprised. I know when I stopped for two weeks I was skeptical. But my problem was that my body was staying agitated from the pmr and would never recover. You need to find your base as to which will not inflict pmr pain. Once you find the base, slowly started adding exercise back. And only change one thing at a time so you can understand what is inflicting the pain.

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Scilly

Hi - the only suggestion as mentioned to another post was to come down very slowly. So try 8mg then 7 mg, then 8mg on alternate days for a month. then for a whole month take 7 mg. Then the following month do the same 7 - 6 - 7 - 6 and so on. Then try a whole month on 6mg. And then repeat the same principle. I found by this method it does work and I am now down to 2mg but of course it all depends on personal circumstances.

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Cycling_bloke

I've tried all sorts of ways of getting from 8 to 7mg - all very slow. They've all failed. I actually managed 7mg from June to July. However, by early August I was suffering from quite severe symptoms, so gave up yet again.

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Linny3

That tells me your pmr is very alive and active and needs to be taken seriously. I feel pretty good until I get the bright idea to exercise. The same day i exercise I flare. I was in pretty good shape and had an exercise program most of my life until PMR struck. I can't get below 13mg and have tried all year. I am taking the methotrexate but it is not working and the side effects will probably cause me to stop taking it. Have been on it for 4 months and still can't taper the pred.

Good luck with the taper.

Lin

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Cycling_bloke

It sounds like I'm doing rather well compared with you. I have no issues after hard training. I can do a moderately hard 130m ride with no problems the next day, or a very hard ride of 60m. If anything I feel much better after hard rides, and worse if I don't ride at all.

I'll try and avoid the methotrexate at all costs.

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Daffodilia

May be you need more rest to help PMR? I have reduced from 40 mg to 6 mg Pred since Oct but now have some bad pain and stiffness - seems usual as get to low dose

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Polymialgia

That’s an incredibly fast taper, I’m not surprised you are now in pain , you only taper when pain free and would suggest you need to go back up to a level where you were symptom free and start again very, very slowly. It’s taken me over 2 years to get to that level but I haven’t had any pain or discomfort or flares

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borednow

I am really at a loss to recommend anything else to help you. You asked for ideas and seem to have rejected the lot! Maybe just need to remember that we all are sufferers of PMR on this site and know of what we speak and, more to the point, understand your problems. I started May 2017 on 20mg, now down to 1.5mg using the DSNS method and am in no hurry to reduce further as all symptoms under control (written with fingers crossed). I can't remember the last time I was on a cycle!! I wish you well.

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Cycling_bloke

Yes I appreciate what you are saying about other sufferers on this site. I have tried taking it easy, for 3 months in fact, but it didn't work. All that happened was I lost fitness, which is the very thing I'm trying to avoid.

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borednow

What about going back to where all was last OK - 12.5mg? Then when your body is ready (i.e. not necessarily your mind!!), start reducing again but very very slowly using DSNS method. Maybe worth a try? You might feel you're going backwards but sometimes we have to reverse before going forward? And in the meantime, be kind to yourself.

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Cycling_bloke

Sounds like a good idea. To be honest, it's what I'm trying now. All my attempts to get below 8mg have failed, so in August I've gone back up to 10mg to get things under control. I'll keep it at that level for a couple of months, then try and reduce by 0.5mg per month. My rheumatologist won't be very happy when I next see her!

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Poopadoop
PoopadoopAmbassador
in reply to Cycling_bloke

Perhap your version of taking it easy is not PMR's version of taking it easy. As cmarichard71 says take 2 weeks complete rest and see what happens. Oh and make sure you include some weight bearing exercise for bone health.

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Cycling_bloke

I've done weight training for 40 years. Before PMR I could squat 100kg.

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Poopadoop
PoopadoopAmbassador
in reply to Cycling_bloke

I will shut up....I could do 80kg as a woman.....dismiss me again(!)....you seem unwilling to actually make a significant change in your lifestyle to aid recovery from a serious illness. So there's nothing anyone can suggest that seems to make a difference; Science, experience, research. What was it Einstein said....

I wish you luck!

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Cycling_bloke

80kg is very impressive!

If you could point me to a scientific paper examining the link between extreme exercise and PMR, I would read it.

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Poopadoop
PoopadoopAmbassador
in reply to Cycling_bloke

If you have the funding I will do the research. It is a condition that doesn't get much funding. People think research just gets done. It doesn't, you need lots of cash and people and access. In a condition that primarily effects women and the elderly it not very high on the list.

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DorsetLady
DorsetLadyPMRGCAuk volunteer
in reply to Poopadoop

Obviously anecdotal evidence from patients who have years of experience is total rubbish and should be totally dismissed!

One wonders, why ask a question and then completely diss the responses!

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Poopadoop
PoopadoopAmbassador
in reply to DorsetLady

Exactly how I feel. I trust people here to look out for my welfare and other members welfare. I have learnt more from everyone who ever contributed here than my Dr and rheumy combined. In fact the comparison is useless as it's not in the same ball park!

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clieder

I'd suggest you ask your rheumatologist to review this post and its responses and comment. You are going in circles and repeating yourself no matter to what extent these experienced patients restate the facts of this illness and its treatment from our perspective. If you want a professional opinion, you are in the wrong place. This is simply real life.

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Cross-stitcher

If you are coming up to 3 months of easier recovery cycling, have you thought about trying one of the fasting regimes such as 16:8 or 5:2? You can still take on the same total amount of protein, good fats, dairy and veg, but you either "starve" for 16 hours each day eating all your meals within an 8-hour window, or you eat well for 5 days and then eat a very low-calorie diet for 2 days each week. There are other programmes out there as well. There is some research that suggests that starving helps the immune system to "re-set" itself, and anecdotal evidence from the likes of Jennie Murry who says that following several 3-day fasts over a period of a few months has "cured" a long-term auto-immune condition she had. I suggest Googling for more info. It's the only thing no-one has so far mentioned in this thread. I myself basically follow a 16:8 regime, as I don't have breakfast (except unsweetened coffee) and eat all my calories between 1.00 and 9.00 pm. And I seem to be finding it easy to taper so far...………... currently at 8.5mg and absolutely no stiffness or pain at all.

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Cycling_bloke

I'll take a look into it. Thanks for the advice, as I hadn't heard of your suggestion.

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Cross-stitcher

There's a post here which might be of interest. As an aside, I find I can take my Pred at 2.00 am with nothing more than a half glass of water - no food or yoghurt - and I have no gastric effects at all.

healthunlocked.com/pmrgcauk...

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Whippetygirl

Having read all the comments on here your arrogance is astounding, you must be a nightmare to live with.

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Stravaman

Hi, I've raced since I was 14 (71 now). I've ridden TTs, road, grass track and MTB and road enduros and hold a batch of STRAVA age related KoMs, Also a lifelong recreational bodybuilder and 20 years as a personal trainer.

Two questions : 1) Have you got a TUE for using cortosteroids - you could face problems otherwise in any UCI / UK racing sacntioned event.

2) More importantly : why are you so obsessed with maintaining your fitness level at the cost of your health.

We've all had periods of the bike through illness or accident. Follow the Pro's example and focus on recovery before training again. Look at Cav, Chaves and Froome.

It's real simple -a) listen to experience of the many good people here, b) stop the training (maybe sit on the turbo to keep the legs loose - not even level 1 and for minimal periods c) reduce steadily using DSNS d) let go of the worry of not training and just enjoy the Vuelta!

Me : diagnosed mid 2017, now on 3mgs via DSNS and .5mg reductions since 10mgs. No flares or problems and I'll worry about training when my body will allow it! All my bikes are safe in the garage untill then and in the meanwhile I'll keep on enjoying Cycling Weekly and Eurosport HD

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Poopadoop
PoopadoopAmbassador
in reply to Stravaman

There may not be anyone left to win the vuelta...great ride by the Spanish kom a couple of days ago. I am still buzzing from De gendt's fabulous ride in the tour for a stage win. I just have a problem with Carlton Kirby and Sean Kelly. Knowledgeable but they have no full stops in their commentary! The grand tours always cheer me up despite the fact I can no longer cycle due to balance and power issues. Hopefully I will be able to afford an electric trike and enjoy the riding again. Though I was always a tourer covered in tents and paniers. My idol growing up Beryl Burton who used to ride past the end of my village street quite frequently. I also had a room in the house of Barry obans dad's common law wife in the 70s.

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Stravaman
Stravaman
in reply to Poopadoop

Absolutely love the Grand Tours (and the Classics) CK often guesses about tactics, Sean though is always spot on as befits someone with his palmares. He has always been a hero of mine along with Beryl. When I was 15 she came on one of our winter clubruns - such an honour and a great lady!

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Poopadoop
PoopadoopAmbassador
in reply to Stravaman

Wow re BB. The closest I got was standing at the side of the road waving many times as she was either on a training ride or returning from a race. Of course she always rode home from competitions, none of these team coaches. I suspect she would be as successful as Marianna Vos if she cycled now.

Did the PMR stop your cycling in its tracks or did you slowly come to realise it didn't really help your recovery to keep pushing yourself? I think it would be interesting for other athletes to hear your story, if you can bear it! Sometimes other keen cyclists or runner get a bit stuck in the mentality that they can't stop training. It would be good for them to know life goes on and hopefully you get back to it prioritising health.

It's many years now since I was able to participate in rigorous exercise or just doing a fun Sunday ride round the Yorkshire dales or North York Moors. I lost my balance and body spatial awareness and kept falling off at junctions. I hated riding without being clipped in in someway, and the clips were my downfall. It was embarrassing in the middle of paris stopping and just falling sideways onto the tarmac. 😂😂😂 Fortunately the paniers stopped too much injury.

I know one day you will get those bikes out again. And if you have to have a bit of electric support, even the great Brian Robinson used one.

road.cc/content/news/99743-...

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Stravaman
Stravaman
in reply to Poopadoop

Thanks Poopadoop. I come from an era of riding out to events carrying my racing wheels strapped to the front of the bike and changing clothes by the roadside. But, I'd still take a team bus now if it were available.

I had to stop riding about 3 months before the dx, mainly 'cos I couldn't get my leg over the top tube and didn't know how I'd dismount with any safety. My STRAVA diary shows I was occasionally experiencing lightheadedness and mild arm pain when training, for some months earlier. In a typical cyclist way I just stopped relaxed and focused for 30secs and it went. I now realise that this wasn't milld TIA as I thought but the first serious signs of vascular inflammation (as I now realise were the regular headaches I had dispatched with NSAIDs for years.)

No riding since then apart from a spin around the block last year on the Colnago to reassure myself I could still ride. Didn't do any more as I'm very aware that the muscular and cardiovascular efficiency of a trained cyclist means I could put a lot of load on the body without realising it.

I've stopped having the fatique that came often earlier on in recovery but still maintain a disciplined regimen of relaxation and low exertion. I'm very fortunate in having the loving care of my wife who fully understands this illness and has been firm whenever I have a hint of Superman behaviour.

Also I'm big'n ugly so don't get any pressure from anyone to do more than I'm prepared to - I just say calmly that I've a chronic autoimmune disease and won't be able to do whatever it is they're suggesting and have never had any probs.

Yep, as you know Poopadoop, survival is about calm acceptance, following the best practice of others who've been there and living each day as fully as I'm able.

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Poopadoop
PoopadoopAmbassador
in reply to Stravaman

I think you are right. Calm acceptance is key. It can be hard to get to but it's achieveable isn't it. When I read people's experiences and symptoms I realise that I had PMR for a year or more before I finally went to the doctor's.

I think your muscle memory from 14 will definitely be available when you get back on the bike. But it is scary when you think the muscles don't get their fair share of blood so can't cope with that load even if it feels like the lactic is just hitting you sometimes. That's how the PMR feels if I overdo it. Like doing a day on road like the peak District ,(near me), when there's no real flat bits....it's either up or down. If I go upstairs on bad days it's like lactic acid.

Thanks for that Stravaman. Hopefully people can learn from your experience too. I said on another thread that to do the things I want to do, I have put work into resting. Resting is as important as staying active. Chapeau!

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Poopadoop
PoopadoopAmbassador
in reply to Stravaman

Queen stage at the vuelta...

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Stravaman
Stravaman
in reply to Poopadoop

Absolutely, got it on now 😀

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Stravaman

PS: a TUE will be no use as oral corticosteroids are only allowable for out - of - competition testing, not in competition testing. So as pred is a continuous medication you could be sanctioned under WADA rules any time you race whilst still on pred!

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