DorsetLadyPMRGCAuk volunteer

Hi Mike,

Welcome to the club!

Can't answer about the jerking muscles I'm afraid, but I'm pretty sure there was discussion about this a few week ago, so I'm sure there will be plenty of responses with advice.

However, I would suggest that your reduction from 20mg to 5mg within 9 or 10 months is very quick. That might indicate that your inflammation has not been controlled properly. It was at 20mg, and probably down to about 10mg, but that seems to be a sticking point for lots of people. Trouble is, if you reduce too quickly, it easy to miss the level at which the inflammation gets out of control. If you still get pains at 10mg that may indicate it's not quite enough, might just be your borderline. If you stay at 10mg for a bit longer and see if pains recede, then don't be in a rush to reduce - try a slow plan rather than an overnight drop, and if necessary go 0.5mg a time. If you're still getting pain, then you may need to go up to say 12mg.

I know this is probably not what you want to hear, but unfortunately PMR takes as long as it takes, all we can do is try and get to the lowest dose of Pred that controls the inflammation. One good bit of news though - men do generally seem to recover quicker than ladies.

Hope you get some answers on your jerking muscles. Take care.

mike4 in reply to DorsetLady

Hi, Thanks for your reply and all the info, the problem seems to be finding the lowest dose of Pred which will keep the pain at bay, the thing that worries me is the side effects of the Pred and perhaps the reduction has been too quick, i will contact my rheumatologist and see what she thinks.

Mike.

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PMRproAmbassador

I get the occasional twitch - but not enough to get particularly worried about it. In the early days of PMR it was an eye tic, now it can be my hand but it isn't regular by any means.

I assume you mean Nov 14 not 15? Nevertheless, I agree with DL - you have almost certainly reduced too fast and missed your "end point": you aren't heading relentlessly to zero, you are looking for the lowest dose that gives the same result as that first dose did.

There is/was a man on the forum who was a fire-fighter when his PMR developed - while he was training for a marathon I think - and he was in a wheelchair! He was back to running in about 16 months if I remember rightly. Use the Search box at the top right to look for SkinnyJonny and a list of posts from/about him will come up.

There are quite a few cyclists on the various PMRGCA forums - mostly men, so you are definitely not alone!

mike4 in reply to PMRpro

HI PMRpro, good to hear from someone who has has muscle jerks my general situation is much improved with a year on Pred the pains I have in my legs is generally bearable. It is the muscle jerking that is worrying,

Mike

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PMRproAmbassador in reply to mike4

What irritates me more than the twitches are the sensations of electric shocks which tend to precede a wave of heat all over.

It just so happens, by the way, that I've just had a day or twitches in my right bicep - and they have disappeared again!

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Gaz227

Hi Mike , I experience twitching in my muscles more noticeably at night when I am lay in bed . For the first few months when diagnosed I couldn't hardly do any form of exercise which was devastating for me as I am a martial arts instructor . I am down to 8 mg from 20mg and teaching again although I do get a lot more soreness in my muscles than I used to but I was told by my Rhuemy and GP if I can exercise keep it up so I have with a vengeance , you will soon be back on that bike incidentally how old are you , I am 55, which I was told at the time was young to get PMR especially in men , but after a few months on this site you realise it's not that uncommon . Stay positive 😀👍

mike4 in reply to Gaz227

Hi, Thanks for your reply very interested to hear of your twitching muscles in bed at night, this is how mine starts and I know that my right arm muscles will give problems the next day.

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Maureengibson

Hi Mike, I wrote a post recently about my twitching muscles. Mines are mainly my arms and shoulders. It appears mines are due to partly the prednisolone but mainly another tablet I take for GCA head pains, called Pregabalin. I was relieved to find a number of people with similar experiences. I do agree with others that you seem to have reduced too fast. For many between 7-10 are sticking points. I have been on Pred 3 years and I am at 7.5mgs

mike4 in reply to Maureengibson

Hi, encouraging to hear that your twitching muscles is due to the prednisolone as it is rather worrying to think that it may be the early stages of parkinsons! Everyone thinks that I have reduced too quickly so perhaps I ought to see my GP again to sortie out.

Mike.

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paulst955

Hi Mike if you are still having pain I'm afraid you need more prednisolone 10mg a day is obviously not enough. I stated on 20mg a day 3 1/2 years ago aged 61 and have been up and down several times following doctors advice to reduce to quickly. I am now back at 9mg a day and intend to reduce very very slowing 1/2mg at a time if I feel aching pain I will stay at a dose that does not cause pain then try reducing later fed up with doctors telling me to reduce its me in pain not them. Have done lots of research online cannot find any evidence of long term damage by pred in doses below 10mg a day. If anyone knows of long term damage on low dose please tell us.

mike4 in reply to paulst955

Hi, Thanks for your reply compared to you its obvious that I am reducing the Pred too quickly, but it must take a while to find the level at which the pain is reduced, and I am worried about the horrible side effects of Pred I know of two people who are now diabetic as a result of Pred.

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mike4 in reply to paulst955

Hi, Thanks for your reply interested to hear that doses below 10mg/day don't appear to cause long term damage, as this is what bugs me. Will have to see someone about a new daily dose.

Mike

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cdenoncourt in reply to mike4

My rheumatologist told me that if I could eventually get down to 5mg. and then had to maintain that the rest of my life he would not be worried about side effects at that level.

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PMRproAmbassador in reply to cdenoncourt

As runrig says, it is the cumulative dose that they worry about - but you can temper that a bit by taking the EXCESS over physiological dose. Physiological dose is the amount the body would naturally produce - in this case, cortisol which is essential for life. Once you get to 7.5mg pred that is regarded as physiological (more or less) and that is where your body has to start making some cortisol itself so even if you reduce the dose a bit, your body will make a bit too to keep the level of corticosteroid in the body stable.

However - there haven't REALLY been any studies as to the real long term effects of low dose pred. They tell us consistently that if you are on pred you will develop osteoporosis - no ifs or buts. But people develop osteoporosis when not on pred and others are on pred for years, even at high doses, and their bone density remains stable. I think that they saw patients on pred who had osteoporosis and assumed it was the pred - unless you did a dexascan before the pred you can't know, it may have already been present. That wasn't possible before 1994 when the dexascanner was invented. There had been no change in my bone density in 4 years of over 10mg pred/day, well over some of the time, and I'm not the only person on the forums. But doctors learn things at a certain stage of their training and it sticks - and they pass it on, perpetuating what may be a myth.

There is some evidence that pred speeds up the ageing process - yes, people become osteoporitic or pre-diabetic when on pred but it may have happened anyway at some point. The risk of the diabetes part can certainly be reduced by cutting processed carbs from your diet when on pred.

Not taking enough pred is pointless - either you take enough for comfort and be able to have a decent QOL or it isn't worth it really. You have to have the benefits to balance out the disadvantages. Not taking pred or not enough pred leaves you in pain and probably fairly immobile. Which increases the risk of depression and osteoporosis - both risks with pred too.

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mike4 in reply to PMRpro

HI, Tanks once again for all of the background info, you have certainly done a lotos research all very interesting. I find that while on 7.5mg/day of Pred, some days the pain is bad and then another like today the pain is much reduced, perhaps an indication that I am approaching the level at which I am controlling PMR may try 10mg/day and see whay results.

Mike.

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Maureengibson in reply to paulst955

My understanding is it is the cumulative dose that increases risk of side effects. I am taking part in a study looking at steroids and the impact they have on your muscles, and physical activity. They hope to develop markers to monitor and measure steroid side effects.

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HeronNS in reply to Maureengibson

No doubt having to take pred is dealing with the devil. Wandering through the internet a day or so ago I found a site devoted to describing "rare" diseases. PMR is listed, which surprised me as I didn't think it could be "rare". It's elsewhere described as "relatively common". But the incidence of the disease in the US is fewer than half a million people, whereas fibromyalgia (not on the rare diseases site) claims about six million. Is its relative rarity, plus the fact that it doesn't kill one (although it can make a sufferer wish they were dead!) the reason so little has yet been discovered about PMR? Or because it is a "geriatric" ailment?

rarediseases.org/rare-disea...

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PMRproAmbassador in reply to HeronNS

It probably is rare if you look at the entire population, all ages and all races - though not as rare as GCA. PMR is the most common inflammatory arthritis/vasculitis in the over 65 population in the UK and other countries with a Scandinavian heritage. It is, however, rarely found in people with Asian or African ancestry - though rare doesn't mean never!

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HeronNS in reply to PMRpro

The US figures probably reflect the relatively high "hispanic", asian and african populations then, which I think together make up close to 50% of their population.

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autrainriver

Hi Mike, before I was diagnosed one of the symptoms I had was leg tremors which occurred particularly in the early morning hours in both legs. The muscles would contract and let loose in waves. My legs would literally hop in while I was in bed. I was prescribed gabapentin which seemed to help the leg tremors. However, once on prednisone and off the gabapentin the leg tremors have gone. I have a really odd sensation of warmth in my legs now that comes and goes that seems unexplainable. The rheumatologist suggests it is from the PMR and/or prednisone and to see what happens. The legs in general since this onset had felt different, not painful or stiff like they were. I was scheduled for a nerve conduction test but the rheumatologist was certain it was an unnecessary painful test so I have opted out for now. Maybe people who initially have PMR in the legs have a slightly different variation of PMR. Since it is a disease that not enough is known about it is really hard to say.

mike4 in reply to autrainriver

Hi autrainriver, good to hear from you, and also someone who has had muscle jerking . My GP was very good when I first had problems with PMR, but is a bit unsure about the muscle jerking hence my referral to a neurologist, who again is unsure about the cause!! It shows how little is really understood about PMR. Anyway thank you for your info it gives me more peace of mind to know that it is not uncommon!!

Mike.

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IanFD

Hi Mike, I was diagnosed with PMR on the 21st December 2015. I am 69 years old fit and healthy playing golf 3 - 4 times a week and doing voluntary work for a local charity. Like you I woke up one morning and struggled to get out of bed put my socks on and couldn't even lift the kettle for a cuppa. Living alone this is not a good situation. I eventually went to my surgery and saw one of the GPs who was very off hand and told me I have 'inflammatory arthritis' as my knees were swollen. I hadn't even taken my trousers off!! The best thing he did was refer me to the Arthritis clinic in the local hospital. Thank goodness the appointment came quickly as I was in agony and almost immobile. Taking as much Ibuprofen as I dared!

Anyway the consultant rheumatologist at the hospital was excellent and with minutes had diagnosed PMR. She prescribed 15 mg Prednisolone per day for the first two weeks with the aim to taper off the dosage as the weeks progress. The first two weeks were good and I had total relief. What happened thereafter is the subject for another post.

The main source of my pain is my hands and shoulders. The time it takes for the steroids to take effect is about 4 hours. Does anybody else have such a long time lag? I have now started taking my pred at 0400 am and going back to bed this helps me to have a full day of activity instead of a morning in agony before things start to improve around lunchtime.

No jerking muscles - just serious pain and no strength at all.

I am also under 'active surveillance' for prostate cancer and wonder if this may be the trigger for the PMR. I have an appointment with the oncologist next week when I will ask the question and hope to learn more. Watch this space.....

mike4 in reply to IanFD

HÈ Ian, sorry to hear of your PMR problem, it certainly causes a lot of intense pain, I too am finding that the Pred takes quite along time to have an effect and wondered if ones system becomes a little immune to it. I usually take mine at about eleven in the morning and put up with the muscle pain in my thighs for a while.

ikeM

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Queenfisher

Hi Mike, my PMR started in my legs - similar scene as you, as one minute I was fine next thing I couldn't move my legs or get out of bed one morning when I woke up. It has stayed mainly in my legs for the past 18months until recently when my legs seem "almost" recovered (except very weak), but I am now getting some occasional shoulder pains. I also have had leg twitching and jerking at night. This has been enough to stop me sleeping, or at times has woken me up. Enough to drive you nuts! Have not had it for a while now, and the episode seems to have been fairly short lived. I had almost forgotten about it until I read your post, interesting to see others have gone through something similar. Hope it resolves soon for you, all the best!

mike4

Hi Queenfisher Good to hear from you with info on muscle twitching, it sounds just like my problem. I have had three attacks in 12 months, and although my GP sent me to see to se a neurologist, resulting in my waiting for a brain scan I still feel it is connected to PMR. The first time in occcurred was couple of weeks before the onset of PMR.

Mike.

Debswales

Hi Mike .. i was diagnosed about 3 weeks ago, started me on 15 preds but didnt take away the pain so put me on 20 its a lot better but some mornings i still wake up a bit stiff but within a few hours it goes, my hands and wrists are the most painful, going back to docs next wed after more blood tests , havent had the jerking of muscles like you mentioned, mine started as i thought i had a reaction to blood tablets but obviously it wasnt, its a horrible thing to live with, and people dont understand the minor things like putting yr socks on is a mammoth task ..l good luck

woolyelly

Hello Hun ,I thought I was only having these jerky movements because of fibromyalgia which I think I have the polymyalgia. I have just had temple biopsy and its negative but still have all the rest of symptoms .when are they going to listen to me .i have read on here about bloods and scans and biopsys all been normal and people still have the condition and get put in steroids.i have never been offered a trial to see if it stops the pain.this stiffness is defo getting worse and I am on zomorph and oramorph but that doesn't help.where do I go from here when the consultant doesn't want to know xx

I feel for you Hun and hope you get sorted ,at least you seem to have a doctor who is ruling things out ,which is better than note been interested at all in your health xx good luck .