Hi there, my husband who is 51 was diagnosed with PMR on 1 October. We have quite a few questions that if anyone could help, we'd be really appreciative.
The background is that mid June he thought he had stiff groins and slowly more and more joints became stiff and very painful until mid July his shoulders, hips, back, hamstrings and quads all became incredibly painful. That prompted tests and then PMR was diagnosed. On 10 Sept he was given a steroid injection by his Rheumy and prescribed 20mg Pred for a week, After seeing his Rheumy 1 week later (17 Oct) and saying he felt about 70% better than the week before, he was told to reduce Pred to 15mg for 1 week, then 10mg the week after. He couldn't cope without Ibuprofen whilst reducing (we hadn't found this forum at that point and so he just did what he'd been told). On seeing the Rheumy again on 1st October when diagnosis was confirmed, he was told to increase to 17.5mg but actually went to 20mg to try to get back to the point where he felt 70% better and coping without Ibuprofen. This is where he's been at since 1st Oct - 20 mg Pred and no Ibuprofen. From reading previous posts he won't take Ibuprofen again whilst being on Pred.
Since about 28th September he's been noticing his wrists and hands have started to feel stiff, painful and very, very weak, especially in a morning. He actually couldn't press the nozzle on his shaving foam last week - it's that extreme of weakness. The weakness does subside as the day goes on (he takes his Pred in a morning), but this is a new symptom that's occurred. He's due to see his Rheumy on 29 October.
Is this wrist & hand issue common?
He's sure he read somewhere he had to take his Pred in a morning - do most of you take yours then too?
He's still quite stiff first thing and does experience some pain in his shoulders and hip flexors, he finds it hard to 'get going' but certainly progresses during the day.
Pre June he was at the gym 4 to 5 times a week, working mainly on cardio and at about 85% and mainly running on a treadmill for about an hour. He now is walking about 20 mins a day, twice a day, but isn't doing any more exercise. I can see people are recommending swimming and spinning (he did try a spin class but it was quite painful in his upper body).
I can see weight training is recommended to counteract Osteoporosis - he's not sure whether he should give this a go yet or not.
Because he's still experiencing some discomfort, does that mean his PMR is not under control with the level of Pred he's taking, or does the fact that he gets better during the day suggest he is ready to start reducing to 17.5mg?
We have just purchased Kate Gilbert's book and looking to gain more knowledge.
Thanks in advance
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Your poor husband. I have always had some pain since starting pred, I started at 20mg, although some lucky people are pain free. Stiffness is quite common in the morning. People try and take the pred very early in the morning to try and improve on this and stay in bed as it takes action. It does vary from person to person. PMR is life changing and you cannot carry on as if nothing had happened just because you are taking steroids. Your husband needs to take it easy and rest. Don't overdo anything. It can be a great excuse sometimes I find.
Some people do have painful hands and sometimes feet with PMR. A check should have already been made to discount rheumatoid arthritis.
I think I would stay on 20mg for four to six weeks or so before reducing when you feel that you are stable. Doctors want you to reduce and reduce, as they seem paranoid about the side effects, the fact that by reducing you may be in pain by doing that does not seem to always come into their equation. Take it slowly in small steps seems to work well rather than rushing down in large leaps.
I echo piglette - your poor husband. What an idiot of a rheumy!
"Is this wrist & hand issue common?" - yes, I couldn't turn or press anything. I still struggle to press even perfume doofers never mind anything any stiffer.
"I can see people are recommending swimming and spinning" - well they shouldn't be recommending spinning (in my opinion that is)! That is far too much for a relatively new PMR patient. In PMR your muscles are intolerant of acute exercise - it doesn't matter what you did before. He will be able to do more but will have to build up to it slowly. And NO - not "weight training". Osteoporosis is counteracted by BODYWEIGHT-BEARING activity and walking as much as he can is quite enough with PMR until it is properly under control.
PMR is the name given to the symptoms of an underlying autoimmune disorder that leads to your immune system attacking your body by mistake, leading to inflammation and resulting pain and stiffness. Even once all the existing inflammation is cleared up, every morning his body is shedding new cytokines to cause more inflammation - so the earlier in the morning he can take his pred the better. Some people take it as soon as they wake with a drink and sandwich/yoghurt or something they took to bed with them to save effort in the morning and settle down for another couple of hours until the pred starts to work. Others split the dose and take a bit in the evening to deal with the next morning and the rest in the morning - about 2/3 in the morning, 1/3 at night seems to work. It is a question of experimenting a bit to find what is best for you.
Did they do blood tests: ESR and CRP? Were they raised (they aren't in 1 in 5 patients)? If they were he needs to stay at 20mg until he achieves a reasonable level of discomfort that isn't improving any further, it may well not be 100%, that is unusual. Have the bloods checked ever few weeks or so and don't consider reducing the dose until the levels are back in normal range - that shows the inflammation is cleared out. Then he can start to reduce to find the lowest dose that manages the symptoms as well as he achieved at 20mg. Over months he will probably find other bits of pain disappear - but it may take months.
to a thread on another PMR/GCA forum where you will find all sorts of links to find reliable and approved information. The PMRGCAUK northeast site is particularly comprehensive with further links to useful information. They have a members pack which is very useful and you don't have to live in the NE - the book is wending its way around the world! There is also a directory of support groups.
Further on , in the replies section is one of the very slow reduction plans we recommend - sounds slow but it isn't because you are far less likely to have to go back to the beginning because of a flare.
Once you have done your homework - come back and ask more specific questions. Piglette and I could write for Britain but we'd spend hours writing what is already available in those links.
Oh yes - piglette mentioned taking it easy and resting. Pacing is the clue to dealing with PMR - read this allegory about living with chronic illness:
I have had PMR for 4 years now. I'm down to 3 1/2mg of pred and right from the start I have had problems with my wrists and hands, especially first thing in the morning. Now I don't worry about them, just put them in as hot water as you can bear. That loosens them up and they ease pretty quick. The first cup of tea, I don't hold the handle of the cup, I put my hands around it. Also, when getting up from a table, instead of using your hands to get you up, use your forearms and elbows.
During my long days of work I can lift bags of cement etc etc, no problem. But as for swimming and we are all different, I can't swim for more than 25mt before the pain starts. But work and walking, no problem.
Hope this is of some help.
Best regards
Buenavista
P.S To Celtic,
We are finally off to see our first grandchild next week, can't wait. Did you manage to get to see yours
Commiserations to your husband with being diagnosed with pmr. It happened for me last December 31st! It took me three months to get down from a 30mg start to 15mg, yet now, towards the end of October I am at. 9.5mg. The lesson is to take it slowly!
As our "volunteer" has explained, the best time to take pred is early in the morning, and I have to agree. I really should be taking them at 3am approx as they take some 3 to 4 hours to kick in. That way I can get a relatively pain free day. However, I am too lazy to get up at this hour, so take mine at breakfast. This means I feel most stiffness when I first get up, but am ok from about midday onwards. For me the preds last for somewhere between 12 and 15 hours. If I take them at night, I am almost guaranteed to get cramp in my legs!
Our metabolisms are all different, so what works for me may not work for others.
As for excercise, I very much endorse earlier advice to go easy. If you try to do too much, your body will for sure react. Take plenty of rest - yes, really, and that is coming from a man!!!! We might have it a bit easier than the opposite sex, but we are not immune from the effects of Pmr. I am back playing racket ball again, and walk the dog every day, and go bellringing about four times a week. I would advise easing your way back into exercise gradually.
You did well to get Kate Gilbert's book. There is also one from pmr- gca-northeast.org.uk called Living with PMR&GCA. It also provides a lot of helpful information.
Keep reading this forum, as there is almost always lots of interesting and invaluable data.
Good luck, and keep posting if you want advice as other issues arise, as they surely will!
We printed 500 copies and started issuing them to our members in June and selling them to non-members. We ran out of copies end of September. We had not anticipated they would go so quickly. We have taken delivery of a re-print this week.
Those booklets have wended there way across the 'big pond', across the Channel and as far as Sri Lanka. We were astounded at how fast the flew out of my front room.
There will be an article in our Newsletter, 'You are Not Alone' which will be available on our website in December.
S u e 1 he's doing way to much! He is fighting himself doing this. Walking is good. Don't over do or he will always be in pain. Reduce when you feel well, not before, and reduce sooooo slowly! Reducing is not a race! Sometimes my bottom of my feet hurt, my left wrist hurts, I sometimes cannot bend my left thumb at all, my Dr. Said my thumb was osteoarthritis. But I usually feel good otherwise, I don't take any pain pills. I still believe rest is the key!!! Good luck!😉
Everyone is different so all I can relate to are my recent experiences. THe advice given to me by two career nurse friends re pmr was gentle stretching and pilates. Remember pmr is having inflamed muscles, you wouldn't then go and do any sort of vigorous exercise to alleviate (Run the london marathon and then go for a 1km sprint to get over it? No).
Ibuprofen pretends to be a steroidal anti inflammatory whereas pred is the real deal, so they tend to cancel each other out.
Take the pred first thing of the day when the body's steroid levels are at their lowest, take them any later you'll stay awake possibly for half the night.
Pain relief, I take solpadol 30mg/500mg caps, it is codeine and is what should be considered for pain relief with pmr.
Accrete D3 (calcium/colecalciferol) for the bones I guess since steroid use brings about oestoporosis
Omeprazole to counteract taking the pred, the latter should be taken with food otherwise it will give you ulcers
Alendronic acid 70mg tabs, once a week sit upright for half an hour have with lots of water (if you don't sit upright it does damage to the oesophagus/throat) once a week for the oesteo.
The pain/stiffness varies from day to day in intensity and location.
For me can be basically anywhere though typically fingers wrists arms shoulders can be neck, back, then moving down groins back of legs, calves....
I have been reduced to tears just reaching the keyboard to tap out some text.
I self diagnosed in Sept, told the doc what I had, they put me on pred before the bloods came back. Now down to 10mg a day and as you may have noticed can't wait to get off the things as they have so changed my mood I am now more snappy, intolerant and aggressive, everyone who knows me has remarked upon it I have no control over it.
Best wishes.
Good that you came here to seek advice.
Rest, take it easy don't push yourself or get angry with yourself, try and let others know your mood may have changed terribly for the worse for being on the steroids so as not to frighten them. Take pain relief as and when and don't be afraid to have a good cry once in a while, it's good for you and remember every day is different and take it one day at a time.
It is incredibly frustrating, I know. I've lost good friends in such a short space of time and as a male at fifty I used to bound up and down stairs, now its an ordeal sometimes.
May I just make a few points and correct a few misapprehensions - you may find the things you have said apply to you but that is not the case for everyone.
Omeprazole can be taken with or without food - and even if taken without food is highly unlikely to cause an ulcer. The purpose of a PPI, however you take it, is to stop the production of gastric acid - which is to prevent the development of an ulcer.
Steroid use does not inevitably lead to osteoporosis - there are quite a few members of the forums who have never taken alendronic acid and their bone density is unchanged despite several years on pred.
As I have already said on another thread - ibuprofen does NOT "cancel out" the effect of pred. The reason for not taking them together is because each can cause gastric irritation and both together increases the risk. The occasional use of a single dose is not very likely to cause any trouble and works just as well as any other painkiller alongside pred. Codeine comes with side effects and risk of its own since it is an opioid and can lead to addiction and problems stopping it. Like most non-steroidal drugs it does little to relieve the pain of PMR. That is what pred is for.
Different people react differently to pred - some people are never bothered with insomnia, some find taking it before bed means they sleep but don't if they take it in the morning. There is no hard and fast rule.
Thanks so much to you all for the replies. It's really helpful to learn from your experiences and recommendations. To answer Volunteer - yes Roy had CRP and ESR tests - both were high, though after 1st week on pred had reduced to within the normal range (ESR was 5 and CRP was 5). The last bloods he had done was on 18th September. How often should he have his bloods done?
We are thinking he should remain at 20mg for a little while longer as Saturday was a particularly bad day where he struggled and simply had to rest. He did perk up around 2pm though. But we are not sure if this is in the 'normal' and as he did perk up and has been okay (ish) since then, he should maybe reduce. We've just had a discussion and he reckons he's about 70% once he's taken his pred and they've kicked in.
I have the dead slow and nearly stop reduction plan infront of me from Volunteer. On that plan, he would reduce to 18mg for 1day, then 6 days at 20mg and so on - but at the moment we only have 20mg tablets (I've read we can get 2.5mg and 1mg which we will have to ask for at next apt - but that's not till 29 October.
He's not taking any other medication or pain relief, so those results are with Pred only.
And one more thing we will ask for on 29 October when he next sees his Rheumy is for a bone density scan and a blood test for Vit B deficiency. I've read (I think) about calcium not being absorbed due to Pred - does anyone take calcium supplements?
I would think he is fine on 20mg for another 10 days, that's all it is. How were you supposed to go back to 17.5mg if he has only 20mg tablets? It's something I've only ever heard of! The biggest dose you usually get in the UK is 5mg - an absolute pain if you are on a high dose as you can imagine! But 20mg is equally a nuisance if you need to cut down slowly too. There are usually 10 and 5mg options. Are you in the USA?
He should be on calcium/vit D supplements as standard - unless his blood calcium level is high, it should be checked. It is vit D that needs checking - not vit B - and if it is low needs a high dose supplement to get it up where it should be. Don't ever take extra calcium/vit D combination tablets to get more vit D. Blood tests in general should really be done every few months but many doctors like to check ESR and CRP before each next reduction to be sure they aren't starting to rise. Some do it after - which seems a bit daft to me. You want to know before you try a lower dose and it can take some time for inflammation to build up.
What had he been doing on Friday? Though it is still early days for him and most people have bad days and better days for a very long time. It will improve - honestly! In a year you will look back and be amazed at how far you have come.
Volunteer, I had missed this reply until Cassie also replied - apologies. Thanks for coming back to me.
I mislead you - a typo - sorry - he takes 5 mg x 4 tablets making 20mg. We are in the UK not USA.
He's now been at 17.5mg for 2 weeks on Wednesday. And so he is intending to reduce to 15mg as he hasn't had any worse pain since reducing from 20 to 17.5.
His main issue continues to be the weakness and stiffness in his hands first thing. That's been consistent though and although not improving, isn't getting any worse. Some days he has slight hamstring stiffness, but that tends to subside when he's taken our dog for a 20 min steady walk.
We saw his Rheumy last week and he now has a prescription for 2.5mg and 1mg tablets. So that's good.
With a bit of a battle he is also going to have a bone density scan, and more blood tests, so we can see where we are at now. That includes a Vitamin D test.
He's following a calcium rich diet so we will await the blood tests before deciding if he should take supplements for Calcium.
He's also been following a gluten free diet since his last 'bad' day.
His work diary has now calmed down somewhat, so he's not had any early morning flights or appointments and is definitely slowing down.
One more thing is that he's taking 5mg Pred before he goes to sleep, and the remainder of the dose in the morning when he wakes and that seems to be suiting him.
Cassie, thanks for advice on the swimming - he's not really a swimmer but has done gentle exercise in the gym 2 times in the past week. 20 mins 1st time and 25 mins today. So he's monitoring if that has any effect before reducing on Wednesday.
As always, thanks to everyone for your help and advise.
I hope you husband is making good progress. I was diagnosed with PMR 2 weeks ago.
Before the pains started I was swimmimg 5 times a week and I had to stop for 4 weeks due to pains. That is hard adapting to rapid change of lifestyle.
Yesterday I swam for half an hour first time for 4 weeks and it was enough. I am so glad I went because it lifted my mood and made me realise I can still enjoy it and that is important for well being but .....................
only swim when you are doing nothing else in the day
not too long in the water
do not swim on consequtive days
swim when you feel energy levels are good(for me it is the morning)
do not power swim - relax more in the water
rest when you get back for the rest of the day
I wonder if your husband has been swimming yet - it is well worth it if he feels well enough
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