My doc' has just told me that I seem to have PMR

madgewildfire

Yes, there is re-assurance out there.

The most important thing to remember is that not everybody gets side-effects and the second thing to remember is nobody I know of has them all.

Prednisolone was 'invented' if that is the word in 1949 and so they are all well known.

You are not prescribed them lightly.

If your GP has said 'it is more than likely' than I would be asking for referral to a Consultant Rheumatologist for confirmation. And also tell your GP you will take them for no more than two weeks, after that time, you become a 'long term user'.

visits www.pmr-gca-northeast.org.uk under useful information read the Briritsh Society of Rhematologists Guidelines on PMR issued June 2009.

Knowledge is power.

madgewildfire

Sorry hit the wrong key.

You really need a firm diagnosis and you need to talk to your GP about this matter. If when you take the pred, you get relief from the aches and pains, then it is likely that you have PMR. But you need a firm diagnosis.

Also on the site I told you about, there are some support groups and I noticed you live in West Yorkshire, so look on Support Groups link as well.

Good Luck and I do so hope it is not confirmed as PMR.

Hello there

Mrs K is so right that the majority of people dont get any major side effects and a lot of the ones who do have other health problems already I am on my 2nd bout of PMR and both times the only side effects I have had is weight gain Some of that is due to the fact I rest more and exercise less I also find itr difficult to sleep on the higher doses and have a real buzzy energy

Having had intense pain with particuarly my first bout of PMR I would have had to take to my bed if I hadnt had the steroids

You havent mentioned your blood results I keep a note of my CRP and ESR and write my doesage and reduction prog down I know some people keep theirs on the Computer I also not how I feel on reduction and try and take it easy for a week when I reduce If you have PMR you should feel so much better on steroids that it is dupposed to be a diagnosis in itself

When you are on steroids you should have regular blood checks My Dr does monthly to start and 18mths down the line I am on 2 monthly but am always given an extra form so I can have one if I dont feel too good Your blood pressure and weight should be checked reguarly and you should be checked for diabetes You are also supposed to have Dexa bone scans (Im not sure how often )

There are a few people who do have extreme reaction to steroids but not too many I think the majority of us couldnt cope with our PMR without them so I wouldnt worry too much

This forum is a mine of information and Mrs K has pointed you in the right direction to get further information I unfortunately have several people I know with far worse illnesses from which they wont get better so I look upon the steroids as a necessary evil !

Very best wishes

Mrs G

[quote:f95d68c55e=\"madgewildfire\"] My doctor has just told me that it is more than likely that I have PMR and he has put me on Prednisolone three 5mg tablets to be taken once a day. Having read all the bumph on this drug, I feel more than a little nervous about taking it, although I do want to get rid of the pain that I'm in but the possible side effects seem horrendous. Any reassurance out there?[/quote:f95d68c55e]

Hi Madge,

Welcome to the forum. I'm fairly new to PMR so may not have as much to offer as many other sufferers here. I was diagnosed with PMR in March. But, you can ward off the risk of a few of the side effects by taking a few supplements. In fact this is suggested in the link that MrsK shared. To help ward off the possibility of bone loss it's suggested to take extra Vitamin D3 and calcium. I take Vitamin D3 (4000iu / day... 2000 in AM; 2000 in PM); Citracal - which is Calcium (500mg) plus Vitamin-D (250iu) along with Magnesium (80mg) and some other trace elements. I also take CoQ10 as I also take Lipitor for high cholesterol. CoQ10 replaces a Co-enzyme that statin drugs tend to deplete from the body. You may not need this if you're not on a statin.

Although Prednisone (or Prednisolone) has many side effects, its treatment for PMR is one of the few available... and it works for most folks. As MrsK said, not everyone suffers the side effects and no one suffers from all of them. I wish you the best in your treatment.

:D Thank you Mrs K, Mrs G and Rick F, for your helpful replies. I took my first dose of medication yesterday with no expectations whatsoever. However, I am amazed at the difference in me within twenty-four hours. I was able to turn over in bed easily last night; something I haven't been able to do for ages and, this morning, I am free of so much pain. Is it possible that prednisone can perform such a quick change?

madgewildfire

The short answer to your question on the effect of prednisolone 'Yes'.

Brillaint news Madge, I'll drink to that :redwine: (see previous post!)

Lizzie

[quote:c67040df95=\"madgewildfire\"] I took my first dose of medication yesterday with no expectations whatsoever. However, I am amazed at the difference in me within twenty-four hours. I was able to turn over in bed easily last night; something I haven't been able to do for ages and, this morning, I am free of so much pain. Is it possible that prednisone can perform such a quick change?[/quote:c67040df95]

Yes in deed! I too was surprised at how quickly I started feeling better when I first started taking Prednisone. After my first visit with the Rheumy (and before blood test results were back), he told me if it is PMR, I should start felling better in a couple of days. Also, the improvement with taking Pred reinforces the diagnosis of PMR. Good or bad... at least we know what we have and how to treat it. :roll:

I joking say to people when explaining what I have and what I'm taking for it that, \"...they're pushing the wrong drugs on the street\".

Hi Madge!

I took my first dose of steroids at 10am and at 4.30 that afternoon walked down the stairs almost properly. And walked back up them a bit later instead of crawling up! Yes - the effect can be that quick and many doctors take an almost immediate response with symptoms which are typical of PMR (for example, the shoulder and hip stiffness, muscle and joint pain) being relieved by up to 70% or so as being pretty much confirmation that what you have is PMR and not one of the other things that are similar in presentation.

Welcome, by the way!

EileenH

That is really good news !!

Yes I was feeling so much better in 24 hours and pain free in 48 hours Some people seem to take a couple of weeks to feel really good

Just be careful as if like most of us steroids give you so much energy and your sleep suffers you dont overdo it Part of the treatment for this illness is rest and I like most people on here have suffered when I have done too much

No problem with the wine !! I think most tablets even over the counter medicines tell you not to drink with them but relaxing with a glass of wine will make you feel a lot better !!

Hope you continue to improve and remember there is always someone here to listen or give advice Best Wishes Mrs G

I have been on Pred for nearly two months, starting on 40mg (now 25). I can understand your concern, but if, like me you were in a lot of pain it's almost a miracle drug.

The main effects were - weight gain (always hungry), seems to make you over active (don't need sleep) adn i'm not too sure but I think my eyesight is deteriorating a bit. I thinkthe main one to worry about is that it reduces your ability to fight of bugs and it certainly takes longer for wounds to heal.

I think it he answer is to get off t ehm as soon as you can without ending up in much pain again!

Hi Chris and welcome although I'm sorry to hear of yet another sufferer. I am wondering if you were diagnosed with Giant Cell Arteritis rather than Polymyalgia in view of your high starting dose of 40mgs of Prednisolone. I, too, was prescribed 40mgs when diagnosed with GCA just over 3 years ago but had been suffering with undiagnosed PMR for the previous year which returned with a vengeance alongside the GCA. I was gradually reduced down to 15mgs over the first 6 weeks because the blood tests returned to normal within a couple of weeks of the starting dose - as you say, it can appear to be a miracle drug!

You say that you feel your eyesight is deteriorating a bit and that was also my experience in those early weeks but I was assured by the consultant that the high dose steroids were causing my focusing problems and gradually that has ceased to be a problem. I hope the same will apply to you. However, it is advisable to see a good optician or even an ophthalmologist who is aware of GCA and its problems just to ensure all is well.

Yes, the steroids do certainly reduce our immunity to infection, especially in the early days on the high doses and one of the things we are told to avoid is anyone with chickenpox as we are susceptible to shingles which, unfortunately, I did experience. If you increase your intake of Vitamin C via plenty of fresh fruit and fresh veg, this will help to ward off any nasties. One thing I would recommend for strengthening the immune system is a teaspoonful of Manuka honey every day - expensive but worth it. It has to be one of the brands marked with \"UMF\" on the jar as that guarantees the strength.

Finally, yes we all want to get off the tablets as soon as possible without as you say \"ending up in much pain again\" but remember although they are not curing you they are reducing the inflammation, therefore it is better to go slowly rather than risk a flare-up, and never reduce until the blood test results are normal - it is recommended that the blood tests are done before each reduction and hopefully you have a good consultant who is monitoring you.

I do hope you will have a smooth path to recovery and do come back to the forum with any questions or worries as there is always someone here who has been there, done it and got the t-shirt!

MrsO

Chris

Like Mrs O, I am a bit worried as if you were put on 40mg steroids that is normally the starting dose for GCA. The starting dose for PMR is usually 15mg and no more than 20mg.

Have you been referred to an Opthalmologist or a Rheumatologist and had the diagnosis confirmed?

Visit www.pmr-gca-northeast.org.uk look under Useful Information and the British Society of Rheumatologists Guidelines on PMR and GCA. Issued June 2009.

GCA is not to be dismissed lightly at all. My hope is that you have PMR.

Hi all!

If anything, I would say my distance vision has improved slightly since being on steroids - mind you, that's not difficult! I was also able to start wearing my contact lenses again which had been very difficult whilst I had had the undiagnosed PMR due to sore and itchy eyes which cleared with the steroids.

However, I saw my optician soon after starting on steroids and he said he was very pleased he had a record of the status of my eyes at the start of treatment to compare with in the future. He's a bit of an optician geek (a very nice one!) with all sorts of toys and has been doing retinal photos for years so is exceptional - but if you have a regular optician rather than just popping into somewhere for an eye test if you want new glasses I think it may be a good idea.

EileenH