Hello all Yes I am on AA and Calcichew and they dont seem to give me any problems When I had PMR first in 2002 I only had Calcichew and had one Dexa scan in that time and no problem This time my Dr said AA was now being given as prevention rather than cure as well as calcichew but told me to tell her if I had any problems with them as she said some people do get stomach problems with them I take mine first thing one morning and dont have anything to drink for 30mins after as it states I have had another Dexa scan in this bout of PMR and they said there was a slight improvement in my bone density I only waited 3 weeks for mine I seem to take loads of other supplements ( I forget what they are all for ) !! OMega 3 Cod liver oil Glucosomine Turmeric Garlic to name but a few and Actimel I had been taking Calcichew for quite a while before a Pharmacist said they shouldnt be take within 3 hours of my steroids It is very difficult to get to grips with all of it almost a full time job !! Best wishes to all
Eileen - thanks, so you and I can cross our fingers that the low doses we are now on will spare our bones. Something that the radiologist added was that the experienced rheumatologists can see who is and who is not likely to suffer from osteoporosis just by looking at them! Reminds me of the days when the medics asked us to stick out our tongues.....which is probably what your husband felt like doing over the scanner debacle!
MrsO
hi - I stopped my steroids almost 4 weeks ago - like you my joints ache and mobility is poor - I have to take ibuprofen/paracetaol to help.
My biggest problem is that i feel totlally exhausted with no energy - even after having slept for more than 8 hours i awake feeling awful - did you experience this.
lorna
Hi Lorna,
I presume you were diagnosed with PMR but how long had you been on steroids? Without knowing a bit more about your history it's difficult to say much but you sound as if your PMR hasn't yet burnt itself out and is causing your symptoms - the extreme fatigue and non-refreshing sleep is common in many autoimmune diseases and many of us who have contributed to this forum have complained of it. Some people continue to suffer from it at times even during the steroid treatment - we all have bad days when we feel as if its all come back, usually from overdoing it because we felt so well! It's also a marker in other disorders such as chronic fatigue syndrome and fibromyalgia so the other question has to be whether it was PMR in the first place.
I think it's fair to say that as long as I don't have any pain or night sweats I can sleep for Britain - my husband certainly agrees! And I am one of the people who is really quite well whilst on steroids - I ski 2 or 3 times a week and and travel a lot, don't go a bundle on walking too far but I never did!
Eileen
Hi,
I have now been off the steroids for 6 weeks.I have got some joint pains that are bearable without any medication .Although I am not taking the steroids I still am having some of the side effects of steroid medication namely my hair is continuing to fall out and is completely lifeless and I am also having some problems with sleep.My GP said that it is due to steroids remaining in your body for some time after you have finished taking them and he did not know if the problems would eventually go.He said that I would be wasting my money if I consulted a trichologist about my hair.I am sorry to moan about such minor issues but I wondered if anyone who has had PMR previosly still had side effects after they came off the steroids.
Hi chammer!
Sorry to hear you still have some joint pain after coming off the steroids - although that could be from stopping the steroids!
I was lucky and the steroids haven't affected my hair at all and in fact my nails are much better since I started steroids - during the PMR they were soft and split in layers, it was impossible to stop them catching on things. Hair growth is a quite longterm thing and unfortunately you probably won't see much improvement for a few months. I don't know what you have done so far but a shorter cut often helps - there is less weight so it doesn't fall out because of the weight of the hair and dragging a brush through it. Give it a bit longer before worrying too much about it. But my daughter's mother-in-law has an ongoing very little hair problem (over years) and last year went to a lab that does hair transplants using your own hair. It's a bit complex to explain here - but the result has to be seen to be believed! She says it's the best thing she's ever had done and is planning another session. It is expensive and depends on you having some good hair growth so is not suitable for all types of hair loss. Nevertheless, it might be worth investigating.
The sleep problems may be not so much due to the steroids now as the pain you are still having plus the habit you have got into as a result of a long period of poor sleeping. If you google insomnia you'll find lots of suggestions to try and improve your sleeping pattern to try for a start together with lots of info. Sleeping pills are really not an answer though except for the very shortterm in certain circumstances.
However, I am confused by your doctor's statement. I am not medically qualified (just have a medical science background) but prednisolone is a medium acting corticosteroid and is metabolised in the liver and cleared from the blood within a few hours. The anti-inflammatory action persists for much longer - more like 24-36 hours - which is why it is sometimes possible to take the steroids on every second day and still get the effect. So I don't see how you can say the steroids are still \"in your body\". Some other steroids do have a much longer halflife but are not usually used for PMR.
And to go back to your hair problem - lot of GPs seem to think anyone who doesn't offer a traditional \"orthodox medicine\" answer to a problem is a quack. They seem to forget that if something has made a problem less of a problem and improved quality of life, then it has been a benefit. Even orthodox medicine can't cure everything - and PMR is a case in point. There is no 100% certain answer to what causes it and the corticosteroids only control the symptoms to (hopefully) allow a reasonable quality of life, they do not cure it. It's not a minor issue to you - so it matters. And if anyone doesn't agree - they don't have to read your post, or answer it. This forum is a brill place to have a moan - someone will nearly always have something to offer you,
best of luck,
Eileen
Hello Chammer
I'm sorry I can't remember how long you have been on steroids for and on what dose. When I was on the higher doses, I had considerable hair loss especially during shampooing. I stuck to organic shampoo and conditioner and eventually when reaching the lower doses I found that the hair loss lessened. However, it remains very fine (although always has been) and can break easily. I feel sure that although you are now off steroids, the body will take longer to get rid of the side effects. My friend lost all her hair due to treatment for breast cancer and, in the last almost 2 years, it has grown back. However, her hairdresser has just told her that she should have it cut in a very short, layered style as there is still growth taking place underneath and that this would then really strengthen it.
Diet is obviously very important - my friend said her husband's hair started thickening when he started having a daily yoghurt. Worth a try perhaps....and cheaper than the trichologist!
Do hope this helps and that the rest of your joint pains disappear soon.
MrsO
Hi Eileen and Mrs O,
Thank you both for your replies.I may possibly have misinterpretated what my GP was trying to say.He may have meant that your body is still recovering from the effects of steroids.I was lucky in that PMR for me was no way near has bad as it is for some people.I was only on steroids for 12 months because I had a Dexa Scan after 6 months and has the osteoporosis in my spine had got worse the consultant (general medical) decided to take me off the steroids over the period of the next 6 months.
I have several other medical conditions so I think you are never sure what medication is causing the side effects that you are experiencing.I think I was too optimistic and thought the steroids were responsible for everything.I thought once I came off them everything would be Ok.Thank you both for your advice I will certainly try the things you have suggested.
Is there any way I can highlight and save all the bits from all over that I want to reply to. I have read so much that is useful and/or interesting and would like to be sure I have acknowledged all your helpful comments, tips, recommendations but they appear under so many different headings I'm sure I am losing track. If the only answer is pencil and pad that's what I'll have to do but perhaps someone knows a better way.
BettyE
There is - but it would take too long to tell you how.
Pop down to your local library, explain the the computer person there and they will show you how. They can also tell you when the free classes start and they are fun.
Alternatively, there is a book called 'Windows for Idiots'. I loved it.
Hello Betty, Somebody a while back (Mrs G?) was going to print off pages which were really useful, so I've done that. I've now a folder, real not a computer one, with a large label saying PMR on it!
But don't worry too much, you may notice that we all address the wrong person from time to time and don't know whether to put it down to old age or PMR!!!!!! :lol: Green granny
Time for an update.
I have now been without any medicine whatsoever for three months but continue with cod liver oil, Vit.C Green-lip mussel extract and glucosomine.
No way of knowing whether these are any help.
I said that I would try to identify any patters in my symptoms. The pain persists but I am just in the last two days beginning to hope that there is some improvement but early days so evertything crossed. There is no doubt that the worst time is waking up time ( usually around 6.30 AM ) As I know that a cup of tea will appear around 6.45 I stretch to try to loosen my leg muscles and wriggle my shoulders so I can enjoy it. This is fine for the shoulders but very painful for the thighs and knees and I have to steel myself to bend my knees by supporting them in turn with my hands. Experience has shown that this is all that will allow me to move my legs but after two or three repeats it does become easier. Having come through the initial movements and after a long very hot shower dressing, though not very elegant, is not too bad; socks and the second leg of my Sloggis is the hardest.
After breakfast the problem becomes psychological as much as physical. I know perfectly well that I must get out of my chair ad DO something. Sitting around is fatal. I dread Thursdays when we have to go to the market really early to park and buy fish and fruit and go to the bank etc. but I have found that, exhausting though the effort is, ( about a mile of walking involved ) by the time we have been home for an hour, had elevenses and a little rest ( NOT too long for the best results ) everything does begin to ease. During the day if I can be firm with myself and refuse some of the offered help and do the everyday chores I really do feel the benefit. I wont say that I have not more than once thought about the Pred. in the 'fridge but the thought of those side effects deters me. Since stopping them I have had no panic attacks, racing pulse, nausea, anxiety and that makes the pain tolerable.
I can still only do stairs like a toddler and any step deeper than a stair is impossible. The leg muscles simply will not allow me to raise my feet sufficiently. Walking is painful and I know I hobble and look like the logo for \"Elderly People Crossing\" but people are very kind and I have certainly never once had the experience described by Dorothy Byrne in her Daily Mail article but then I am lucky and live in the country.
What gives me some hope is the fact that the neck pain which I had originally has more or less gone and I can turn my head both ways at T junctions! I do roll my head gently on my pillpw on waking but that sorts it for the day. I think, too, that the shoulder and back pain is less severe than it was two weeks ago. Also I can, just today, refold my dear old Norton Recliner while sitting in it instead of asking someone to risk finger joints by pushing the foot-rest for me. It is difficult to be objective. I cannot reliably compare my pain with anyone else's nor with the pain I have myself suffered in the past. Nevertheles I think there is room for hope.
I know from other people's posts that most of you suffer some pain and some suffer severe pain even when taking steroids. I have read posts by two or three others not taking Pred.. Bob seems to have done tremendously well. Five mile walks! How do you do it? Do you just walk through tha pain? And as for skiing ( I know that Eileen is still using Pred. )but it still seems remarkable. Any tips?
Well that is me up to date I hope sharing my \"progress\" will perhaps encourage someone.
Enjoy this beautiful weather while we have it. See you soon. Betty
Hello Betty and so pleased to hear that things have improved for you in the last couple of days and do hope this continues. If it does and you've found a cure, I'm sure the pharmacies will run out of Cod liver oil, Green Lip Mussell and Glucosamine!!! All very encouraging reading for all of us I'm sure.
As for the second leg going into the Sloggis, you could be describing me to a T - have you been peeping? :wink:! (Love those Sloggis!).
I'm down to 2.5 after 3+ years but have been there for nearly 4 months (allowing for the slow tapering weeks) and am definitely feeling it! The amazing thing is how much it eases by the end of the day, so that in the mornings I am having thoughts of increasing the dose but by the afternoons I'm glad I didn't! The lowest dose I have reached in the past has been 3 but with very severe kick-back in the legs, so unless that kicks in so severely again I am just trying to tough it out and will ask for a blood test in the next couple of weeks. I suppose it's comforting for me to know that at 3 a couple of years ago I was in agony but more recently was ok until down to 2 so maybe there is some burn-out going on (or even steroid-addiction!!!)
Betty, have you ever tried Evening Oil of Primrose? I have today heard of an 89 year-old lady (my close friend's neighbour) who has just been diagnosed with PMR. She has many health problems and although she is in severe pain, she is apparently unable to take steroids. and, of course, the Paracetamol that she is taking is proving useless. I'm wondering about recommending Oil of Primrose to her having heard a few years ago of a couple of elderly sisters who when diagnosed refused to take steroids, did some research and took this Oil........and recovered! I have now been given the 'phone number of one of these ladies so will give her a ring in the next few days to find out more.
Do keep us updated with your progress - we need all the encouragement we can get!
Very best wishes,
MrsO
Dear Betty, I am full of admiration for the way you have perservered! As Mrs O says, it does encourage us all, whether on steroids or not.
I am 16 mths. into PMR and back up to 11mgs. after having been down to 7 last year - but I have never been totally free of pain or had my old energy back, even though my blood tests have come up really low. Of course I know people who steroids have worked for and they don't even know they have PMR! I won't start to talk about side effects. There seem to be two mantras on this site ......\"Knowledge is power\", and \"We're all different\"!
You have highlighted one or two things for me ... that doing things and moving is often painful at first but will get easier, but also knowing what one can and can't do, the best times of day, etc. and planning ahead. I seem to operate in 15 minute slots - do something for a short while, rest for a while. Even walking, when I have good days and bad days, standing still counts as a rest! I pretend to blow my nose so it doesn't look too peculiar, being stuck in the middle of the pavement, and I heard about someone who found window shopping, when she would stop and be really interested apparently in some fabulous garment gave her that break!
Do keep in touch so we can hear how you are getting on and the best of luck - I hope the good weather helps you too, Green granny
Mrs. O No, I have not tried ev. prim. yet but someone on here, you, perhaps? has recommended it. I just feel I should not add to my list of supplements but if your 89 yea rold gets relief by using it I shall certainly give it a try and I bet I would not be alone.
In my post last night I forgot to mention that another improvement is the fewer occasions where I just have to sleep during the day. Not for a week, certainly, and I have been quite busy ni the greenhouses. sowing, potting on etc. None of it major physical work but I do have to stand up to do it. It does give a lift to see everything growing. I'm going to try using our strimmer on wheels, a wonderful macjine. I'm hoping it will feel like a supermarket trolley.
Dop let us know about your neighbour. Betty
Hello Betty I am pleased to hear you are feeling a bit better
It is difficult if you cant take steroids I have always been a great supplement person ( I often forget why I am taking them !!)
I have taken Glucosomine for years and Cod Liver Oil and Vit E and and and etc !!!but I still managed to get PMR again!!
I agree with the little bits of movement The days I go out for long coffee mornings and luches with friends I feel mentally so much better but always stiffer the next day than on my normal pottering days
Last week I managed to go into my nearest city and do some shopping ( both window and the other kind ) !! and felt I was moving more like my normal self
Sorry Green Granny to hear you are back on 11mg I have managed to get from 15mg back to 10mg now and have blood tests and Dr due next week My Dr was convinced I would have to go back that high to feel better when I was creeping up from 5 to 6 to 7,5 to 10 to 12.5 !! and she was right It was the mental effect in all that cold weather and being housebound that dragged me down Am feeling more positive now and this lovely spring sunshine has really helped ( first Barbecue today !!)
Best wishes to all Mrs G
Hi Betty and Others
I have just picked up your post on 17th April and found your update on life without steroids really interesting. I have been holding off posting of late (but I am reading the posts) because I am still uncertain where my condition is going and I don't want to give out false information or hope but decided that this was perhaps a good time for an update.
I too am determined to beat this without further steroids and believe that this is now possible. Whilst I still have good and bad spells and feel thoroughly fed up at times with this condition and its effect on my life I have to keep reminding myself of just how much better I am now compared to before Xmas when I could barely walk with the pain. I am now 7 months in and still suffering but I have walked 5 miles today and can do most things I did before PMR as long as I don't use my arms too much. This means that my passion bowls is out :cry: but at least it will give others a chance to win a trophy or two until I return - which I surely will. :lol:
My steroid injection in early Feb, that I referred to in a previous post, only reduced my symptoms by about 80-90% for 2 weeks before the pains in my arms returned (not the 3 months consultant said) but for 6 weeks after I was able to cope with the pain without needing any other medication. By the end of March however the steroids had clearly worn off and I just couldn't cope with the pain anymore so had to go back to the medicine cabinet. In desperation I took some Ibuprofen again (400mg twice a day) but this time they worked which they hadn't done previously and the past couple of weeks have been pretty good and relatively pain free.
The only possible reason I can suggest for the Ibuprofen working when they didn't before is that if PMR really does burn itself out in 2 years or so the symptoms must also be reducing over this period (as mine seem to be) and perhaps there is a point at which Ibuprofen would be almost as effective as steroids. Most sufferers would never know because they are stuck on steroids. This could be complete rubbish but might be an interesting topic for debate.
As for the future who knows but I hope that the worst is behind me and I just have to continue on this roller coaster ride until it improves. I intend to keep taking the Ibuprofen for now, discuss the situation with the consultant in May and try reducing the dose of Ibuprofen in due course.
Best wishes to all for a pain free life.
Bob