hi everyone I was diagnosed with Polymyalgia 3weeks ago after 8 weeks of agony not being able to walk hardly and not being able to lift my right arm up past the elbow I am on 15mg a day for the next two weeks then reducing to 7.25 it seems to have done the trick I can move freely but I don't feel good having trouble sleeping and I have noticed a slight shaking of my hands but also I keep going dizzy when I get up it never gets to the point of passing out or blackness but it happens every time I move around then passes off has anyone else had that it seems to have started just over a week ago.
That is an awfully large initial drop if you are expected to do it all in one go. It's 50%, and we are recommended never to drop by more than 10% at a time. Also, if you are only on your initial dose for two weeks that will in all likelhood not be long enough to have brought all the pain-causing inflammation under control. You may feel like a million dollars, but it does not mean you are cured. Prednisone only controls the symptoms and does not cure the underlying disorder, more's the pity. We have to wait for that to go away in its own good time.
Are you being very active? You might be suffering from some fatigue from doing too much the last few days because you felt so much better after starting your medication but in fact you need to pace yourself more than you might expect to give your body a chance to heal.
Sorry, read more carefully that you will have been at 15 for five weeks before reduction. The size of the reduction, however, is still too large. Some people can manage 2.5 at this point. Others more like 1 mg per week. At 10 mg the reduction should become MUCH slower.
Our experience has been that dropping prednisone so quickly gets us to square 1.
In my case I felt almost pain free at 15mgm but my doctor said to try 12.5 mgm dose after about 3 weeks. I felt absolutely terrible with the reduction. If a person has PMR the disease must run its course- it can be 2 years or more. The prednisone prevents the disease inflammation from damaging the body- not to mention the profound painful existence without prednisone management.
it seems like your doctor needs some re-education about PMR - if indeed that is your diagnosis.
Hi Olwen, I started on 15mg Prednisolone on 2 July. I tapered to 12 mgs after 3 weeks. So far, so good, in fact I feel better, with more energy and motivation than I have had for ages. I'm due to taper to 10mgs at the weekend, all being well.
In your case to taper from 15 to 7.25 in one step seems to me too drastic. I'm sure others will have advice for you though. Also 7.25 strikes me as an odd number. Not 7.5?
Good luck.
Hi Olwen, I am so glad that the pred has worked its magic. Unfortunately it does have some side effects including insomnia, dizziness and shakiness. I had the hot sweats which were awful, so you are lucky you have not had that. Did you mean you are reducing to 7.25mg or did you mean 12.25mg? As the others say that is really too large a jump if you meant 7.25mg and could be a disaster. As Anhaga says all the pred does is reduce the inflammation and so you get rid of that awful pain. Otherwise the symptoms of PMR are still there, it does not actually cure it. Perhaps one day they will find a cure. Also you should take vit D and calcium supplements as pred can cause osteoporosis. It may be a good idea to have your vit D level checked. I found mine was quite deficient when I had the blood test. Low vit D can cause problems too. Your doctor should organise a Dexascan for you which measures your bone density. There is often quite a waiting list but you may be lucky. Otherwise just carry on but don't overdo things.
Olwen
Follow this link http://www.patient.co.uk/forums/discuss/pmr-gca-website-addresses-and-resources-35316 to th epinned discussions.
Go to North East website and read up on the BSR Guidelines to the Diagnosis and treatment of PMR.
2 weeks at 20mh with a reduction to 15mg is a drop far to far. You need another blood test before you take a drop and if take a drop then no more than down to 17.5mg.
Top experts recommend no more than 10% at a time.
You need to gain knowledge and fast.
Click on the map on the website and see if there is a support group near where you live.
Hello Olwen I was also diagnosed 3 weeks ago with PMR by my GP after being to the rheumatologist for 2+ years with tests galore and no diagnosis.
im learning loads from the wonderful people on this site, and I'm sure you will too.
i started at 20mg and a week later 30mg, now reducing but everything I have read says do it slowly or you will be at square one in no time, no point in taking the medication if you are going to be in pain, I dropped 5mg from 30 to 25 and had pains again they didn't get worse day by day so I persevered and a week later felt comfortable on that dose. So please do take it carefully.
As a new user of prednisolone, I too could not sleep, my legs really uncomfortable keeping me awake, I too shake and have dizzy spells and headaches but they cou side with taking the medication and wear off so I know it isn't GCA or it would get worse I imagine.
Ialso found it useful as the medication doesn't last me 24 hours only 12 or so, so I keep 5 mg of my dose for teatime to be more comfortable for bedtime for sleeping.
Good luck and take care, take it slow.
Welcome to the forum Olwen.
The insomnia, shaking and dizzines will be the prednisone. You really do need to take it easy, and my easy I mean REALLY take it easy. You are sick. The drugs don't cure you, and come with thier own set of problems - as you are finding out.
do what Lodger says, and learn everything you can about PMR and prednisone. Ask any questions you like on here - no question is a dumb question - we've all been there and done that... albeit differently in every case.
Thank you so much for your help I have got another blood test before I drop but gp didn't want to see me for two weeks after that by which time she told me to drop by half from 15mg a day to 7.5mg per day which as you say is a lot I think she was taking the information from somewhere or someone because she had to keep reading up as you say I need more insight into it many thanks
Thank you so much there is so much to think about its mind blowing I take my 15mg with my tea around 5-30 that's how the doctor told me take them havnt got any pain as such but if I use my right arm to vacuum I can feel it pulling still on my shoulder went to bed last night at 10-30 woke up at 3am and couldn't get back to sleep anymore also had headache seemed to be over front of face I'm finding it difficult to work out what are side effects or not many thanks for your help
Hi there yes I did mean 7.25 I am taking 15mg a day now at tea time I will have been on that for a month in two weeks then I am supposed to take 7.25 a day for 4-6 weeks then reduce again I am getting concerned about dropping by half so I am going to speak to the doctor just before I am supposed to drop I have just started on victim an D also supposed to be taking the one a week bone tablet but I have to confess I havnt started it yet I am still trying to cope with the side effects from predisilone before I start that with the side effects from that as well many thanks and good luck to you as well
Hi there everyone is saying that and at the end of the day you are all people who have got or had it so I think I would rather take your word I am going to speak to go before I drop to that the 7.25 is three 2.25mg which she has given me ready it's so confusing many thanks for your help
olwen2
Your pred should be taken in the morning as soon as you wake up.
The best ways is that say you wake up at 7am or before, just make a cup of tea and eat something, you must eat something. Swallow your pred (and if you have been given calichew -do not take it at the same time, the rule is pred for breakfast and clichew for lunch). Go back to bed and with a bit of luck sleep. When you wake next time the pred has started to work. if you have a morning shower, that is good as it warms your muscles up.
I have sent you a PM.
I had a lot of headaches when starting pred - even went to my eye doctor to be checked for GCA (clear, but I did have elevated ocular pressure which he monitored until it reduced as my pred dose reduced). Don't know what to suggest other than getting checked, and then just waiting it out like I did. Now at the lower doses I appear to be getting fewer headaches than ever in my adult life, so there is hope! 
But make sure you are not dehydrated. Drink more water, even if it means waking for an extra bathroom trip during the night.
Dropping to 7.5mg sounds like a recipe to disaster to me. I wonder if your gp was looking up pred for some other illness, when it is being taken short term.
I am not sure your GP is that knowledgable about PMR! Also I would not take the weekly bone tablet unless it was proved to me I needed it, with a Dexascan. I asume it was Alendronic Acid? Are you taking calcium with your vitamin D? You should be.
Hi there sorry just checked dose and it is 2.5mg x3 for my next reduction but I'm going to check with gp before I do that did say I was confused.
Hi there I'm not going to take it without further evidence yes it was Alendronic Acid read side effects and don't like the idea that it can remain in your body for a year or more so many tablets to take I am taking calcium with it what's a dexascan?.
I get headaches when I've taken the prednisolone but it goes inbetween doses, so I'm sure it's the pred and nothing else.
Hope you are ok today.