back again after my last post where I went from 8mg of pred to 13mg of pred , 2 weeks ago .
I was planning of course to drop back down to normal level but alas PMR coming in waves particularly in evenings and mornings just before taking steroids. Stiffness in neck shoulders with very definite PMR feel to it . Generally feeling crap and wired all the time too , Which I assume is steroids and PMR combined ,. I`m on statins too and reading another post from today makes me wonder about that , I`m taking avorastatin . Paracetemol help a little , ibuprofen doesnt .
What would you all suggest I do with my pred dose ? Continue with 13 mg , or up it ? I assume dont drop .
Its Disheartening as my original dose was 15mg, 3 years ago , and although the PMR is about the same in terms of severity , the rest of me feels like a bag of poo which I assume is the long term steroid use of average value of above 10 mg pre day ? Thank you in advance
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Marek1
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I've had many years of pred at above 10mg - and I may have felt less than ideal but never felt that bad!!! Unless I tried to stay at too low a dose when I had the pred effects PLUS the PMR - enough pred and I felt OK.
I think you need some medical input - your history suggests more than just bog-standard PMR and it is possible it is similar to mine which flares in activity every so often in a similar way and never goes into remission for long enough to get off pred. I couldn't control it with the flare protocol when it did that, I had to start over and find the new lowest dose.
PS - and as Snazzy points out - you ALSO need the right STARTING dose and if you were never on enough at the start, it hangs on as you attempt to taper.
Hi Thanks for taking the time PMR Pro . I`m sending this copy and pasted from the reply to Snazzy D .
. I think in the first year I felt better and probably got down to about 10mg after 12 months but into the second year onwards there has NOT BEEN 1 DAY where the illness has not been pervasive and a real real problem for me . I have constantly been trying to taper but never fast , following the guidelines here at all times . HOWEVER I have never stayed on a certain dose for any period of time .
My health has completely changed the way I live . I try to stay busy walking about , doing jobs but It can`t be strenuous due to as soon as my heart rate goes up with exercise I feel crap almost immediately .The fatigue and general malaise this causes is a self limiting factor on how much I attempt .
The last year has been bad with fatiguw since about March getting steadily worse . I would say I`m at my worst now since starting on pred . PMR symptoms not awful but defo there whilst on this current dose of 13mg . But wobbly legs . Extreme fatigue even if I go up the stairs too fast (not pleasant fatigue ) Feeling wired and gasro issues almost daily .
Stress seems to be a hugely aggravating factor and often results in a flare a few days after . This has happened on 3 separate occasions now .
I think your problem started with the disease "escaping" when you got down to 10mg - and I am a bit surprised your doctor hasn't registered there is something else wrong. I'm assuming you have told them what is going on?
Have the cardiac symptoms been investigated - or is it all been put down to being on pred? What sort of gastro issues? What is your resting heart rate and what does it go up to when you exercise? Have you got a pulse oximeter to check that easily?
Hi PMR pro I`m copying Snazzy D on this too . Once again thanks for your input both . !!
I havent seen a real doctor in ,over a year .It sounds like i need to push it as an emergency as that is the only way I could see one . which after both your messages I will now do . I did see a clinical practitioner manager recently . who basically agreed that tapering can be really difficult , as I thought that my symptoms were all down to adrenal insufficiency ,but i realised how useful the chat was when she at the end of discussing my condition called it rheumatoid arthiritis ! Her knowledge on PMR , pred and associated subjects seemed less than mine , given all the experience I`ve gained off this forum . I moved a year ago hence not seen the doctor . Previous GP was adamant to get below 10mg of pred in my first year of diagnosis, that was all he talked about !
I have been to see the consultant rtheumatologist , when I was on my highest dose of 23 mg 11 months ago . I was going thru a mega flare after moving house and my dad dying , when he heard about my dose , he went nuts and he got me on a draconian taper of 5mgs per month to get down to 10 mgs and then dropping 1 mg per month . I went about half that speed due to what I learnt on here but still flared at 7 mgs , my lowest level ever . Of course I bumped it to 12 and hten followed the timescales here of slow taper . I flared again at 9 mg went up to 14mg . slow taper again very very slow the last mg to get down to 8 , where I contacted you all 14 days ago about being in a bad state generally and now got a flare again .
Current situation is 14th day at 13mg . Not feeling well , all the same symptoms and PMR showing its face in mornings and evenings .
If i had to describe the worst aspect of all of it its the fatigue from overdoing it and by overdoing it I mean doing as little as going up the stairs at a normal persons pace .. I may have mislead you with the mention of my heart , (mentioning heartrate)it was only an apt way to describe it I thought . Any effort needing lifting /straining or light excersise leaves me shot to pieces .I usually recover within an hour or 2 , but its horrible.I would class it as exercise intolerance??? . Which as an active outdoorsman has been very hard on me mentally . ps I do have swollen ankles a the end of the day as of about 4 months ago . Thats new to me too.
The reason I haven`t worried about heart too much is I had an ECG a few months ago which was fine . I think its a good idea to check it . , shall I just get that monitor, or ask for further tests . My resting pulse is always high at about 90 due to an SSRI I take daily .
Gastro stuff includes . sudden onset of needing to go for a No2 , stomach discomfort / prob complicated by diverticulosis or itis ( the milder one).
Ive been feeling so bad I`ve just been for allergy tests etc.
My bloods are all great !!!!!Cholesterol and sugar and BP good . , they were starting to slide esp. first 2 and they piut me on statins .
I do drink about 2 to 3 pints a evening as I`m so miserable so that`s my treat. But I know its too much . I have a low Carb diet , and eat plenty of veg .
An ECG is just a picture - a lot of things don't show up when they aren't actually happening and some are so difficult to read that it needs an expert to identify.
I do understand the need for the few pints of an evening - I'm not willing to give up my single 110ml glass of rose as a small remaining pleasure!!! But a few pints is not ony a fair bit of alcohol - 2-3 units per pint depending on the beer - but also a lot of carbs.
Your level of exhaustion and the GI changes need to be reported to the GP. Any such changes need to be treated as suspicious until proven otherwise, Just in case.
As for that rheumatologist - don't get me started! Try not to brush with them again!! Something isn't right - but his technique of dealing with wasn't right either.
Please do get a full check up with your GP. Swollen ankles can be cardiac related, so must be checked. Ask your GP to look at you with fresh eyes and consider other underlying issues. Sometimes they need a gentle reminder!
My heart goes out to you. I just talked to my GP Christmas Eve and told her I could not get below 6 mg. So in her infinite wisdom she gives me 14 one mg tabs and 14 five mg tabs. After this I will run out and have to go thru the same cartwheels and hoops. She was upset that I had just a few 1's left, "you're not supposed to" says she. "Yay me!," says I. Then she mentions the arthritis which I don't have, but for the normal amount for a 74 yo. I do however now have bursitis in my hip apparently and thigh. Can't stand on my left leg....or it could be a side effect of a Zoledronic Acid infusion I had 3 weeks ago. Won't go there, but I do have to see my Osteoporosis Specialist next Tuesday. I have a referral to sports medicine doc for a cortisone shot in my hip should it come down to it. I think a trip into your ER might get you some answers about your issues. Always something eh. Hugs.
I was looking through all your posts and it seems that you have never really felt ok even on 15mg. Granted you are not likely to post if you are feeling great but knitting it together it doesn’t look like you have stabilised for long in the 3 years. Is that a fair assessment?
What kind of activity do you manage or how do you spend your days?
Hi Thanks for taking the time . I think in the first year I felt better and probably got down to about 10mg after 12 months but into the second year onwards there has NOT BEEN 1 DAY where the illness has not been pervasive and a real real problem for me . I have constantly been trying to taper but never fast , following the guidelines here at all times . HOWEVER I have never stayed on a certain dose for any period of time .
My health has completely changed the way I live . I try to stay busy walking about , doing jobs but It can`t be strenuous due to as soon as my heart rate goes up with exercise I feel crap almost immediately .The fatigue and general malaise this causes is a self limiting factor on how much I attempt .
The last year has been bad with fatiguw since about March getting steadily worse . I would say I`m at my worst now since starting on pred . PMR symptoms not awful but defo there whilst on this current dose of 13mg . But wobbly legs . Extreme fatigue even if I go up the stairs too fast (not pleasant fatigue ) Feeling wired and gasro issues almost daily .
Stress seems to be a hugely aggravating factor and often results in a flare a few days after . This has happened on 3 separate occasions now . I`m also sending a copy of this PMR pro .
I suspect she means don't always blame pred!!! But definitely don't just stop taking pred - that is a risky action when you have been on it for a while at that level, you could become very unwell.
Yes, have you had blood work for checking how well your kidneys are working? Creatine level , bun level and your eGFR . I have kidney disease CKD
When I was first dealing with kidney dysfunction my ankles were swollen with water. I changed my diet lost weight and my kidneys are stable but at stage 3 . I have been diagnosed with RA but my symptoms are more like yours and the other commenters . I haven’t seen rheumatologist in over two years.
I assume you intended this reply for Marek1 - but you clicked on Reply to SnazzyD. Doesn't matter in this case since this is Marek1's thread so they will see it but if it had been for someone else they might never have seen it.
I have had swollen ankles for some time. assumed by the doctors to be due to poor venous return, I should wear compression socks. Not even the cardio people considered it was entirely due to my atrial fibrillation!! Since it has been eradicated by an ablation I have skinny feet again!! So my recommendation of cardiac checks is also to be noted I think.
Hi PMR pro I`m copying Snazzy D on this too . Once again thanks for your input both . !!
I havent seen a real doctor in ,over a year .It sounds like i need to push it as an emergency as that is the only way I could see one . which after both your messages I will now do . I did see a clinical practitioner manager recently . who basically agreed that tapering can be really difficult , as I thought that my symptoms were all down to adrenal insufficiency ,but i realised how useful the chat was when she at the end of discussing my condition called it rheumatoid arthiritis ! Her knowledge on PMR , pred and associated subjects seemed less than mine , given all the experience I`ve gained off this forum . I moved a year ago hence not seen the doctor . Previous GP was adamant to get below 10mg of pred in my first year of diagnosis, that was all he talked about !
I have been to see the consultant rtheumatologist , when I was on my highest dose of 23 mg 11 months ago . I was going thru a mega flare after moving house and my dad dying , when he heard about my dose , he went nuts and he got me on a draconian taper of 5mgs per month to get down to 10 mgs and then dropping 1 mg per month . I went about half that speed due to what I learnt on here but still flared at 7 mgs , my lowest level ever . Of course I bumped it to 12 and hten followed the timescales here of slow taper . I flared again at 9 mg went up to 14mg . slow taper again very very slow the last mg to get down to 8 , where I contacted you all 14 days ago about being in a bad state generally and now got a flare again .
Current situation is 14th day at 13mg . Not feeling well , all the same symptoms and PMR showing its face in mornings and evenings .
If i had to describe the worst aspect of all of it its the fatigue from overdoing it and by overdoing it I mean doing as little as going up the stairs at a normal persons pace .. I may have mislead you with the mention of my heart , (mentioning heartrate)it was only an apt way to describe it I thought . Any effort needing lifting /straining or light excersise leaves me shot to pieces .I usually recover within an hour or 2 , but its horrible.I would class it as exercise intolerance??? . Which as an active outdoorsman has been very hard on me mentally . ps I do have swollen ankles a the end of the day as of about 4 months ago . Thats new to me too.
The reason I haven`t worried about heart too much is I had an ECG a few months ago which was fine . I think its a good idea to check it . , shall I just get that monitor, or ask for further tests . My resting pulse is always high at about 90 due to an SSRI I take daily .
Gastro stuff includes . sudden onset of needing to go for a No2 , stomach discomfort / prob complicated by diverticulosis or itis ( the milder one).
Ive been feeling so bad I`ve just been for allergy tests etc.
My bloods are all great !!!!!Cholesterol and sugar and BP good . , they were starting to slide esp. first 2 and they piut me on statins .
I do drink about 2 to 3 pints a evening as I`m so miserable so that`s my treat. But I know its too much . I have a low Carb diet , and eat plenty of veg .
I’m sorry you’re feeling so ill. Reading your post it strikes me that you’ve almost got used to feeling like this over the last few years, since you’ve had PMR ? Obviously you don’t want it, but it’s become a bit of a norm, if you like….
But it’s not a norm to feel as you do. Perhaps it would be wise to request an urgent GP appointment. Stress your overall symptoms, and don’t assume they are down to PMR or pred. I think the doctor needs to think a bit more widely about what could be the cause and what would help.
I'm going to throw something else into the mix. At higher doses a few of us ( a tiny number it seems from this forum) develop steroid induced muscle myopathy. You used the phrase "exercise intolerance" and that exactly describes my experience. I don't do what is normally defined as 'exercise'...but I do try to keep moving...usually cleaning a small section of my 50 sq meter apartment...putting away my weekly delivery of shopping wipes me out for hours. I lift arms and legs regularly when I am sitting or lying down.
I have been fortunate to have been thoroughly investigated and the conclusion "muscle myopathy" which might improve when I stop taking steorids, but could take years.
This is only one aspect of all that you are enduring at present.
I can only suggest regular gentle movement if there is any muscle myopathy.... But do follow the advice given here and check out any other possible culprits...you have a mixed bag of symptoms...make a list and see a doctor, Wishing you well.
What time are you taking your dose of pred? You might feel better in the evenings and mornings if you split the dose and take about a third of the dose before bedtime. If you have gastro issues make sure you take the tablets with some food. And are you taking a stomach protector regularly? Sadly I don’t think the beer drinking is helpful, but I fully understand that it gives you some comfort when you are feeling so shitty.
Hi Marek1. Happy New Year to you, or perhaps less so given the way you feel. You will almost certainly have steroid induced myopathy after 3 yrs on pred. That means you won't be so physically strong so you definitely won't be able to do everything you previously did. PMR affects the way your muscles work. They aren't as responsive. Fast twitch muscle goes first so trying to correct quickly doesn't happen which often makes us stumble and fall. That's down to the pred. wasting muscle. It's always a combination of effects but the end result is much the same. It's for these reasons some medics try to get us to reduce too fast. They focus on the bad side effects without balancing this with the fact that pred' reduces the inflammatory aspects of the PMR. Reducing too fast causes flares and ultimately makes the process longer. There seems no alternative to pred. so best to work with it sensibly. I like a small single malt some nights and enjoy a glass of a decent red or white with meals, but not every night. Alcohol doesn't go too well with some medications and every one responds slightly differently. Beer is high in carbs. so that volume of a night will tend to undo your being on a carb diet. I sometimes have a bottle of some beverage with my meal shared with the wife. I was on 40mg for GCA and PMR and initially that wasn't enough to cope so I struggled, but after 3.5 yrs I am now down to 1mg and hopefully they are on their way out. I was and am still angry at what they have done to me but I have hopes of improving. You need to give your body a chance to improve. A body without this condition finds excess alcohol difficult to process so give yours a helping hand and I think you will gradually see improvement. Good luck.
Thank you Cycli . Yes I`ve been aware that I need to cut down alcohol or stop . I did stop for 6 weeks and felt no better , but thats no excuse , as I know from a common sense point of view that its so harmful . I will get onto it . Thanks for your help !!
In Germany they even market alcohol-free beers as isotonic sports drinks - their sports heroes are seen with them - so Joe Public wants them too! Then there is Red Bull but that is evil, we won't go there ...
I even tried a Nosecco -Kylie of all names, came recommended - this Christmas. Not too bad but not as good as the beers. Any recommendations welcome as the non alcoholic wines are usually grim.
My problem too - I practically only drink rose wine with dinner (almost all the benefits of red wine but lighter) and prosecco or Aperol spritz. Don't do beer except Moretti or Peroni's lemon shandy stuff. I have a non-alcoholic sekt (German) in the fridge but a whole bottle is a bit much for one and not sure how it will keep. I have always said I'd give up alcohol if someone made a decent wine. Here you got looked as as if you were crackers when you looked for anything alcohol-free but they seem to be getting on the bandwagon at last. I had an amazing mocktail in Lazise in November - but it was fruit-juices, didn't like to think of the sugar. My daughter says she has found prosecco that is not bad ...
Which Prosecco did your daughter find? I’ve laid off alcohol totally most of this year with my heart problems. Still miss a rich red with a meal which I only had on holiday.
Much as i love alcohol(provided it is a quality one) I am fortunate to have our own source for water, which I filter and run through UV( just in case). It is free of the normal additives most water companies supply and cool, pure and sweet. Another benefit is no water charges.
Just a thought but have you tried taking the pred without the omneprazole? I was prescribed a ppi along with the steroids as a matter of course but never could take them as they upset my stomach too much
interesting thank you . I was going to stop them a bit whilst on lower dosage to see if I had improvements . I didnt though . Now I`m on 13mg of pred, not sure ?
There are alternatives if you do need something for gastric problems - H2 antagonists are almost equally as good as PPIs (the -prazoles) with a different/better side-effects profile.
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Flare Protocol
PMR for 10 years
Flare-up not under control and just don't know what to do
quarter of a mg of pred
