No Prednisolone

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