Some may remember Id had a blood test and it showed high esr's plus high white counts.
Had another test to rule out cancer and all was well.
I have been prescribed 15mg per day pred and am a bit nervous about taking it...like something really bad will happen. People have said they can feel hyper or manic...oh god I hate anything that changes your personality.
So I have put it off till maybe the 2nd. Meantime, I'm in a lot of pain.
Any tips on how to protect your stomach?
I get severe palpitations (missed and extra beats) and most come if my stomach has any problems.
Just need a bit of confidence to take the pred as living on my own, Id hate it to go wrong.
Sorry you've had to face this alone, but we will help all we can. Although you don't want to be here, this is the best place for help.
Pred should be taken as early as possible in the morning but don't take it on an empty stomach. If you can't face an early breakfast then a live yoghourt with a banana? The yoghourt will line your stomach and acts as a stomach protector.
15mg - which is the usual starting dose from PMR - is also a relatively low dose in the scheme of things. Thinking back to when I began taking it (almost 13 years ago now, but don't let that frighten you, I now take pred for other conditions) the only thing I noticed was an increased appetite which wore off after a couple of weeks and I was started on 20mg.
There are some side effects to taking pred, but then there are to many drugs including OTC drugs. If you read the leaflet which comes with paracetamol or ibrufen I doubt you'd want to take them, but few people read those leaflets!
Why not try it for a few days? If you don't like it, 5 days on pred is neither here nor there and you can stop it if you want to but within that time (and sometimes within hours) you should see a benefit. I took 36 hours and went from being unable to walk across my kitchen to down on the floor scrubbing it!
Hope this helps.
Thanks for your reply. I have read so many horror stories it scared me a lot. But the majority seems to say its like a miracle first.
I will definitely use the yoghurt then when I start it on Thursday. Thanks so much for the support.x
It is great to read about how other people cope with PMR, and as I do not know anyone else who has it, or knows anything about it, I do not feel isolated.
My doctor told me that I had PMR for a while going unnoticed, and I was thinking that it was to do with the fact that I had broken my shoulder.. I had a blood test, and my doctor phoned me two days later to tell me that it was PMR. I started on 15mg of prednisolone, and after a month feeling great, my doctor asked me to drop to 10mg. What a disaster!! I was in a lot of pain, and had to go back to 15mg to get about. When I spoke to my doctor (she must have read up about it), and told me to take 15mg for two weeks, then alternate 15 and 14 days for two weeks, and now have been on 14mg daily for two weeks. I feel so much better, and go for another blood test on Monday 6th January, getting the results on 9th January. My still have pain in my shoulder when I lift my arm up to brush my hair, but that is all. Being New Year's Eve, I have been doing lots of housework, and now feel exhausted, but after having my coffee, I will feel refreshed.
Happy New Year to all,
Grace
jennissw - the horror stories are from a minority believe me! As Nefret says it tends to be with higher doses that you may get the "live wire" symptoms and by higher we mean well over 30mg/day. My 14 year old granddaughter often needs 40mg/day and then she gets a bit hyper and bad-tempered and noisy. But true mania is very unusual. And you don't take it and a few hours later go mad - it takes Nome a couple of weeks to get to that stage! And if you are worried about changing personality - I'd give PMR at least 9 out of 10 for THAT! Untreated over a long period you can get very bad tempered I assure you.
As long as you take your pred with food you shouldn't end up with any stomach problems - and if you do then the doc should offer you something like omeprazole which is said to help - it has its own side effects of course, I've never used it and have had no stomach problems (other than finding white wine became too acid for me when on Medrol - different pred, back to normal now ;-) ) Some people take a sandwich or the yoghurt or something to bed so they don't need to get up, take it early and get back under the covers for a while to allow it time to work. If you are an early bird and insist on getting up - you can take it in the middle of your breakfast. That is something that helps with any tablets that may upset your stomach.
Taking pred was dramatic for me - I took my first 15mg at 10.15am after picking the prescription up. At 4pm I walked downstairs normally, not like a toddler one step at a time, for the first time for months. And walked back up - not crawling on hands and knees.
Grace - glad your GP was prepared to learn but shame she practised on you! A 5mg drop is mostly a bit extreme - though when I first had pred I was on 15mg for 2 weeks and then dropped to 10mg for 2 weeks and 5mg for 2 weeks. That time even the 5mg was OK, a bit achey but nothing to pre-pred. Within 48 hours of taking the last 5mg tablet I was in agony, worse than pre-pred. It's taken me 4 years to get down to 5mg again (not quite there yet, just about 5.5mg). Yo-yoing the dose, going down too far too fast and having to go back up again, is the worst thing you can do. As you get closer to 10mg you may find it more difficult again but you are going nice and slowly now. Good luck. One group of experts in Bristol keeps their patients at 10mg for a year and by so doing have reduced their flare rate to 20% instead of 60% - so it is worth it.
But a warning now: don't go overdoing it because you feel so well in comparison, PMR is a nasty person - it'll turn round and bite back. Me - I'm happy enough to go dusty into the new year!
Eileen
Thank you all so much. I will be starting on Thursday once this sinus infection is done with. I will let you all know how things go.
Eileen you are a wealth of info, and comforting. Thank you so much for your time and concern, its wonderful.
PS Happy, Healthy, Pain Free New year to you all.
Hello Jen. A few weeks ago I was as nervous as you when I was first prescribed prednisolone so I left it for a few days to see if I could cope without it. The pain just got worse and worse. I couldn't bear it so relented and took my first 20 mg dose. As others have said, the relief was dramatic. I would not want to put up with that pain for possibly years. I am on 15 mg now and get pain again if I overdo things but nothing as bad as before. Yes, there are some side-effects but as we gradually reduce these get less and less over time. The main thing is that the pred protects our eyes from GCA, not to be taken lightly.
I wish you luck in your PMR journey and a pain free 2014 to you and all here on this forum.
Many patients are terrified of the idea of having to take steroids - and, unfortunately, so are many doctors.
In the early days of pred, around 1950 or so when it was first developed, it was perceived as a miracle. Patients in wheelchairs were given pred and got up and walked. I suspect they were patients with PMR. They used enormous doses - and a few years later reality bit: the patients developed all sorts of nasty things because of the side effects of these high doses. Pred became a scare word.
For PMR at least, careful use at the minimum dose required for control of the symptoms achieves an almost miraculous effect with few serious side effects. There are exceptions, I'm not denying that, but because it has been used for many years and most of what there is to know about it is known, it can be used to give a good quality of life.
Those of us who have re-visited the agony of PMR at too low a dose or no pred appreciate pred for its good sides as Christine has said. Untreated PMR is more likely to lead to GCA - and then there is no choice, pred at high doses is the only alternative to possible blindness.
It gets better - it really does. I know, from bitter personal experience.
Happy new year - 2014 will be better than 2013. Promise!!!!
Eileen
Eileen, you were correct saying not to overdo the housework. I really felt good yesterday, and gave the house a good clean which felt the right way to start the New Year.
Today I can hardly move, as I am so sore, and should have known better than to do so much in one day. My left shoulder which I broke months ago is giving me problems due to using too much elbow grease, so for the rest of this week the dust can lie.
I hope everyone in the forum had a good Christmas and New Year, and that 2014 is a good year for all.
Yes - after nearly 10 years of PMR there isn't a lot you can tell me I haven't been through! It is so easy to think you feel good so it will be all right - but housework in particular is a minefield. Repetitive movements are really bad for shoulders - like wiping large surfaces and cleaning windows. And your shoulder is extra-dodgy. Anything like hoovering or sweeping is seriously bad for low backs too.
Best birthday/xmas present you can get is a cleaning person ;-) even if it is a one-off. Next best is a sign to put on the fridge: "Dust is very patient - it will always wait" :-)
Eileen
The side effects from prednisone can be managed and you need the pain and stiffness relief ; made me feel human again. I am in my first flare in 3 years and hate increasing prednisone but will to help me.
Thank you everyone for your help and input
Good morning,
I have had PMR for a few months now, and after a shaky start I took prednisolone for 15mg for about six weeks, followed by a month on 14mg, and have now started on 13mg. I cannot say that I am sore, but my wrists ache quite a bit. I also have hot flushes which I thought were in the past, and wondered if anyone else had this problem.
My blood tests were clear about 10 days ago which was marvellous, so I really cannot complain, but still do not feel 100%
Kind regards,
Grace
Grace yes, I have noticed hot flushes returning after years without. Im 63 and like you, thought they were a thing of the past. Tht's a nice slow reduction...good luck with it.
I have a few weeks to go before my first reduction from 15 to 12.5 - I am wondering if 2.5 will be too large, but it is what the bristol uni recommend. Plus we cant get the coated tablets at 1mg can we
Hello Grace.
Sorry you are not feeling 100%. I would be surprised if anyone does because there are certain side-effects from the prednisolone and in some people there are symptoms of PMR that are not completely cleared.
I, for one, get horrible hot flushes and sweats a number of times a day (I am on 13.5 mg prednisolone) and have had these from the beginning when I was on 20 mg back in October. As fever and sweating can be symptoms of PMR it is difficult to know whether it is the condition or the steroids causing these symptoms.
Good luck. I hope your symptoms get better as time goes on.
Christine
Although a few people do feel "back to normal" on pred it is unusual - whatever doctors try to tell you! As Christine says, sometimes it is difficult to tell what is PMR and what is pred but it is common to have sweats when on pred.
If the sweats are accompanied by any other symptoms it is worth checking with your doctor - mine certainly improved dramatically after I was diagnosed with atrial fibrillation and put on medication for that and raised blood pressure (never identified by checks previously, BP was glued at 125/85 it seemed - it wasn't). PMR can sometimes lead to a/f so it is worth considering if you have palpitations and feel woozy as well.
And as Christine says - it will get better! Honest!
Eileen
Good afternoon to all,
Yesterday I wrote that that my blood tests came back normal which was wonderful, and although I had no need to complain, I was still ached a bit, especially my wrists.
In the early hours of this morning I wakened feeling very sore, and was up and down most of the night due to all over pain. I have never had this kind of pain before, as it was mostly aches I had, but this pain has lasted all day, and I feel really washed out. I did a little ironing yesterday, and a little housework, but not enough to affect me like this. I have had a relaxing day today, and hope that I feel better tomorrow. I have now started on 13mg of prednisolone, and hope that I do not have to go back up to 15mg, but if it makes me feel better then I will. I think that I will give it at least two weeks on 13mg and see what happens.
Regards,
Grace
Hello Grace
If your pain has increased so soon after reducing to 13mg then you could just be experiencing steroid-withdrawal pain, in which case just doing "a little ironing and a little housework" yesterday might just have proved too much too soon following the reduction. Many of us have learnt from experience that we have to take things very easy for a few days to a week following a reduction to give our bodies chance to adapt to the lower dose.
If you give yourself lots of TLC in the next few days, hopefully you will gradually start to feel more comfortable. If, on the other hand, the pain continues to build after the next few days, then it could point to steroid withdrawal. A repeat blood test could then provide the answer.
I do hope you will gradually start to feel better, in which case you can remain on 13mg for another month or so. Good luck.
MrsO