Another Polywhatsit joins the team
Posted , 9 users are following.
Hi, I'm a 51 year old woman from Australia who was diagnosed with PMR 2 months ago. It literally came on overnight. I woke up one morning very stiff and sore and had trouble getting down the stairs because it seemed my inner thighs had seized up. I was also having a lot of pain across the shoulders which no amount of professional massage could fix.
Luckily it was only 6 weeks before I took myself off to my GP. He started me on 20mg of Prednisone and within 6 hours I could get up from a chair without hobbling like an old (110 year old) woman!
MY GP asked me to reduce to 15mg after a week which brought back most of the pain. I found this amazing site and decided to take matters into my own hands. I went back up to 20mg, and have slowly reduced to 16mg with some shoulder pain but I'm getting used to a bit of pain in the first few days after reducing.
I also have Fibromyalgia and a couple of other auto-immune issues.
I take great comfort from everyone's posts. If you guys can live happily with PMR then so can I!
Waves from Down Under
0 likes, 21 replies
RickF
Posted
Welcome to the forum. As the saying goes, 'misery loves company'. Don't really know if that's true but it's good to know we're not alone. :roll:
Reducing from 20mg to 15mg after only one week is really way too fast. Some Drs. just don't get it. It's not like some other aliments where you can taper off Pred pretty fast. PMR and muscle inflammation takes time to improve. I was on 20mg Pred for six weeks. Follow-up blood tests after being on 20mg showed an improvement of my ESR from 85 to 9! Then is when the Dr. (Rheumy) told me to reduced to 15 mg per day.
Being from 'down under' your weather should be getting warmer. This should help the muscle pain some I think. Good luck and rest easy.
EileenH
Posted
Rick - I don't find that even the warmth of an Italian summer helps the muscle pain much
I wish it did! In some ways I'm better in the winter providing it is dry. I had to up my dose in July and am really struggling to get it back down.
Cheers from the snow - good foot fell yesterday, sun today!
EileenH
mollycoo
Posted
welcome to this very friendly and informative forum! I'm recently diagnosed with PMR too, and was put on 15 mg pred, and subsequently told to reduce to 12 and a half and 10, but having read on here about problems people have had with a quick reduction, I asked to come down more slowly than that, and my rheumatologist agreed to a 1mg reduction each time, 15 days at each dose. I would say your reduction has been too fast. If I were you I'd ask to reduce much more slowly. Keep coming back on here, there are lots of people with help and advice for us (newbies)
best of luck,
Mollycoo
BettyE
Posted
When you get down to lower doses you might find you need to go even more slowly. I am almost ready to reduce to 6.5 and am going at half a mg. per month. Does vary with individuals and times and the one thing that is the same is that we are all different. Well worth trawling through past posts to get the general feel of PMR. Perhaps feel is a poor choice of words in this context but you'll have many different experiences in the course of this illness and it really is a comfort to find that, no matter what, someone else will have been there and will chip in and offer comfort.
Hallo All. More snow here and we haven't been out for a week. Lovely neighbours keep is supplied with odds and ends that run out but we've lived through so many winters here that, as someone recently posted, we,too, keep a stock of all the essentials.
I agree with Eileen that hot weather is not always a help but keeping really warm in the house is essential for me. Once I tense up for any reason it's hard to relax.
Time to go and punch my oaty bread again. Lovely warm job.
Stay as comfortable as you can. Best to everyone BettyE
mrs_k
Posted
Just dropped by and saw another Aussie, Lyn posts here and she is an Aussie, perhaps she will drop by.
I am sorry to see another polywotsit but it is good that its not also a ginat thingy.
When you can visit www.pmr-gca-northeast.org. uk
Medical Information, People's stories and Ragnar's method.
Also scroll down for the ADT on this site (Alternative Day Therapy) but it is not recommended to use ADT till you are stable on 10mg.
This is the site for the wacky question, the moan and the laughter.
Stay well as you can and do not push yourself. Learning to handle fatigue is the hardest part.
Mrs_G
Posted
Sorry to hear of yet another sufferer It also must be very difficult if you suffer from fybromyalgia as well Also awful that it hit you so suddenly With( unfortunately ) my 2 bouts it was a slow build up With the first bout it was a slight problem that then escalated very quickly before I had the steroids prescribed and the 2nd time knowing what it was I didnt let it get that far
Youve already been given good advise by the others on here but you are already doing the right thing by learning as much as you can and querying your treatment
You will find by looking back on here that several of us have set ourselves back by reducing too quickly and the best thing is how do you feel before you reduce and what is happening to your bloods My Dr never reduces my steroids without checking my bloods first and I have said it on here before I keep records of my ESR CRP steroid doseage and how I am feeling Hope you feel better soon
Best wishes
Mrs G
Green_Granny
Posted
There are people on this site who know so much more than I do so all I would add (apart from wishing you well) is that most of us find other factors add in as well as the speed of steroid reaction. I was hoping to reduce a bit more from 7.5 mg this week, but the cold (minus 8 degrees here last night) plus stress - should we or shouldn't we be travelling today - can all add on to how we feel. Stress can be sort of happy too, like getting ready for a holiday, not major life threatening stuff. Or just things that take you out of your usual routine perhaps. We're all different, can't say that enuff, but just something else to watch out for.
Very envious of your warmth, won't mention the Ashes, but I guess we need something to cheer us up after the World Cup disappointment :cry:
All the best, keep in touch, ask daft questions, we do have a laugh too, Green granny.
Dublin,_Ireland
Posted
welcome from me too...I am also 51 (nearly 52) and was diagnosed at the start of April this year. I started on 40mgs and reduced to 20 very quickly over 8 weeks, but have been on a much slower regime since then. I am now down to 12mgs, but only go down one at a time and leave a few weeks between each drop...so far its working, and if I get pain & stiffness I just go back up a bit until it settles.
I have found this site to be fantastic...we are all \"virtual\" friends now and it is great to have others who understand exactly how PMR affects your life as we do not look ill to anyone else :roll:
To all--- Ireland still covered in snow.....have no idea how I'm going to get to the local tonight :cry: ....might just have to crack open a bottle at home instead.
Keep well & warm everyone, Pauline
spiritgirl
Posted
My GP isn't very knowledgeable about PMR but he has offered to send me to a Rheumatologist. He didn't give me any numbers after my blood test but he did say I had 'inflammation'. I've taken lots of advice from this wonderful site and I've used the alternate dose suggestion and have been reducing by 10% (cutting my little 5mg tablets into quarters with as much precision as I can muster LOL).
I had the Fibromyalgia under control with lots of exercise and Pilates and 2 years ago my hubby and I travelled to the UK and France and trekked all over England, Ireland and visited Edinburgh and we loved every minute of it! One memorable day in Paris we walked for 7 hours! We'd love to visit Italy - one day when this PMR is under control. I barely have the strength to walk up my driveway these days. This PMR has knobs on it :roll:
I would LOVE to be experiencing snow now! It's very steamy here, high temps and thunderstorms. The Ashes? Have they started yet? I'm an embarrassment to the sports loving Aussie culture.
:oops:
Take care everyone and have a fabulous day!
EileenH
Posted
You may be unlucky like me and end up with a poor rheumatologist - he couldn't/wouldn't recognise PMR (mainly because he arrogantly didn't listen to my report of history/response of symptoms to steroids in 6 hours!) and wanted to put me on a horrible RA drug. Steroids may be bad (or not) but that was far worse. Download the British Association of Rheumatologists guidelines from the pmr gca uk northeast support site and give them to your GP. Keep a record of any posts on here you find particularly useful - you can copy and paste them into a word file just the same way as you copy and paste anything from one file to another - and give your GP printouts to read at leisure. If your GP is helpful he is probably more use than a poor rheumy and much more accessible.
I, too, used Pilates to help with the PMR but exercise was restricted to aqua aerobics but I did find that very useful - any day I had an early class at the gym I had a much better day. I was lucky the local Bannatynes gym, at a cricket ground(!), had a class every day except Sunday at the time. I really got value from my subscription. There are no similar affordable offers here in northern Italy - but the winter isn't a problem as skiing is the right movement to help! Today - however - it is minus 12.4C and the sun is still hiding!
all the best,
EileenH
spiritgirl
Posted
Did you say [i:00dcb2192e]minus [/i:00dcb2192e]12C? :shock: I haven't experienced that kind of temps before! Although a couple of summers ago we had a 47C day so that was a bit extreme.
I plan to arm myself with lots of info from this site when I see my GP next. All he needs is a bit of educating about PMR. LOL It probably won't be necessary to see a Rheumy if I have this site to come to to ask questions
I haven't had PMR during summer but I have noticed I am feeling a little better now that the weather has warned up. I jumped into our swimming pool (not heated) a couple of weeks ago and the cold water made my muscles seize up.
Can I ask if anyone else has experienced breathlessness? The preds are giving me the worst heartburn/reflux even though I'm taking them with milk. I've just discovered reflux can make you feel short of breath.
BettyE
Posted
Hallo again Spiritgirl, Yes, I've had the horrid breathless feeling, usually about 2 hours after taking Pred. This was one of the reasons my GP said to try taking them at night. At the time I was taking 10, down from 15 ( not all in one jump! ). Also had desperate feeling of weaknessor, as I called it, rubber legs. Both symptoms ceased within a day of changing to night dosing ( done over three days ) Maybe I got the rubber legs over in my sleep which was not affected by taking the Pred. in the evening.
You might try taking your Pred. with yoghurt insread of miklk.Several of us find that helpful. I am just using the un-cated. Perhaps the coated ones might help if the yogm doesn't do the trick.
Also, I have eaten a dessertspoon of Manuka honey for tears to sooth my slightly excitable stomach lining As you are nearer to NZ than we are you might not have to pay such a high price as in UK.
Good luck and best wishes BettyE
EileenH
Posted
If you have heartburn/reflux from the pred you need to tell your doctor - one of the side-effects is gastric irritation which can get severe, even to the degree of an ulcer. Always take them with food - I know some people find a yoghurt is enough to stop their problems but you shouldn't take the pred with anything with too much calcium in it (or your calcium supplements) as that stops the steroid being absorbed properly. And just a yoghurt may not be enough to neutralise the acid.
In the UK you can get enteric coated pills in 5mg and 2.5mg versions. I don't know if they are available everywhere and certainly there are some doctors who will demurr on the grounds of cost. However, if you are on the plain white tablets you possibly need to take a gastric acid inhibitor (many doctors hand them out as a normal addition to steroid tabs) and the cost of 2 drugs has to be compared to the cost of 1 and improved compliance. The enteric coated version of pred is absorbed lower down the gut so they pass through the stomach without causing any discomfort.
Breathlessness is also a listed side-effect of pred and another you should tell your doc about. Like Betty I went through a period of this really head-rush sensation a couple of hours after taking my steroids - dizzy, breathless, wobbly legs, palpitations - but it tended to be if I was out doing something at the time. If I took it easy for a couple of hours I had no problem and it has pretty much gone away now I am on a different dose. :roll:
Ask away - we'll always do our best,
EileenH
spiritgirl
Posted
Eileen - I'm already taking Zantac (for heartburn) every day because I also have Chronic Urticaria and Angioedema and Zantac is a good anti-histamine. I may need to double up the dose. I'm so relieved this breathlessness could be a side effect of the preds. I also get the heart palpitations with it as you described.
Next time I see my GP I'll ask for the coated tablets.
I'm still working 4 days a week in a very stressful job. I have 3 days off a week and I spend most of that just resting because I'm too exhausted to do anything else. How do others cope trying to live a 'normal' life?
mrs_k
Posted
Reflux - here is a way to reduce/stop it, given to me by another PMR sufferer (Mrs O I think).
Juice of a lemon (if you put it in a microwave for 50 secs you get twice the amount). Split into three doses, drink with water three times a day.
They way it was explained - lemon juice (acid) turns to alkali when drunk.
Brilliant it works and we find we do not have to take it every day now, just when the reflux hits again.