Newly Diagnosed Need Advice Please

Spammy

click on My Space at the top of this page.

Just an update on my situation.

Firstly can I apologise for my first post and feeling so sorry for myself! I have read so many threads here and now know I am far from being alone. Sorry for my moaning!

Anyway, I had a nightmare few days and ended up at the out of hours GP at my local hospital. He too said I had a flu virus which had made the PMR flare up. He gave me strong painkillers and said the virus would just run it's course. When I got home I immediately took 2 painkillers and within 10 minutes was rolling about in agony with a dreadful pain in my upper stomach just below the middle of my ribs. Eventually I was sick and the pain subsided. I did manage to sleep that night amazingly as it was the first night I had slept for 3 nights. The following day I had a dull pain in my stomach and was scared to take the painkillers but I cut it down to one because the pain in my shoulders and arms was unbearable. That night I lay awake with the pains in my stomach and had to call the doctor for a home visit yesterday - first time I haven't managed to drag myself to the surgey.

The outcome is that the GP thinks the steroids are upsetting my stomach and the painkillers are too! I have to double my Omeprazole to twice daily, stop taking the painkillers and only take Paracetamol and she thinks they will have to increase the Prednisolone when I see them again on Thursday.

As I mentioned in my first post, I only started them on 7th Jan and am on 15mg daily. I already have a very puffed up face so can't imagine what I'll look like when they're increased but as long as the pain goes I can live with that. Because I had such a great response to the steroid injection I got at my first consultation with the Rheumatologist on 4th Dec, I think my expectations were far too high and I expected to be free of most of the pain from there on in! How wrong was I?!! I think the leaflet you are given gives you a false impression of everything being great when you start the steroids and that it's a miracle cure. It doesn't tell you about the bad days, the continuing muscle weakness and tiredness and I am so glad I have been able to find from here that these are 'normal' with this illness and it's not just me.

Can I ask please, what is the normal dose (if there's such a thing) when you first get diagnosed?

Thank you to everyone who has shared their experiences here, they have been most helpful to me.

Normal starting dose seems to be 15mg, sometimes 20, not more (unless GCA). I've wondered whether that's down to individual doctor's preference or whether it's on body weight? My pmr started suddenly at 51 and I've just had a hormone test 17months later which shows I'm now a mad menopausal bat (no change there then I hear my husband say). I wonder if the hormone change is what set my body off. It can set other conditions off, like lupus, which sometimes follows a diagnosis of pmr and can be mistaken for it.

Just had a trip to my gp who has been an absolute star, and he says when he was at med school pmr was a 'dumping ground' for all sorts of inflammatory arthritic conditions. Hopefully that's going to change with the new 'centre of excellence' up north and a more exacting diagnostic criteria!

Best wishes all...

I was started on 20mg at the start of both bouts of this illness This had an almost instataneous effect on my aches and pains on both occasions On my second bout of PMR my blood results were higher than on the first bout and my Doctor did say not to worry if I had to go up to 30mg as it was more important to get it under control than worry about the steroids Luckily I didnt need that high a dose it is funny you mentioned hormones and menopause etc as when I was driving along today I was wondering why the incidence was so much higher in women than in men ???? Our hormones seem to cause us problems all our life !! Mrs G

Hello again Klosblue and you certainly have nothing to apologise for......we all sympathise and understand 'cos we've all been there! It sounds like you've certainly had a difficult few days and perhaps on Thursday the GP will refer you back to the rheumatologist for further investigation. This would certainly be my favoured option. Good luck on Thursday and do let us know how you get on.

Thank you Wallis and Mrs G.

You know that is really funny because I've just gone through Menopause too! You know I never had any problems with it at all - sailed through wondering what all the fuss was about! Someone's paying me for saying that now I think lol! The first time I had a hot flush was back in May when the PMR started and since then I'm plagued with them day and night. I thought maybe it was connected to the menopause but I've tried every cream and remedy you can find right down to the magnet in my pant (true honestly!) and nothing has made one bit of difference. I now take it that it's the PMR causing the flushes and is just another thing I have to learn to live with - unless of course anyone knows better?

Klosblue - I had night sweats at the beginning of PMR and occasionally hot flushes while on Prednisolone, hot flushes being a side effect of the drug. I found that eliminating coffee and drinking only decaffeinated tea resolved the problem.

Have you tried the live yoghurt yet for your tummy?

Kosblue

Night sweats and hot flushes - I used Evening Primose Oil and also Extract of Sage. Both Herbal. Found them very useful. But I hade also been on HRT for some years and requested HRT again - great.

Re-action to steroids, I read somewhere and I just cannot find out where - so here is hoping someone else knows as well.

Sometimes the coating of the tablets causes problems, so people wash the red stuff off.

Sometimes when people just cannot take the tablets, the liquid form can be subscribed.

Might be worth trying the washing and chatting to your GP.

BSR Guidelines issued June 2009 on Diagnosis and treatment has a wealth of information on, how, why and what dosage.

Hello everyone and thanks again for your advice and support.

Well, I am feeling much more positive today. Went to see my GP this morning and he was excellent. Had a long chat and he said he would phone my Rheumatologist and discuss my situation with him as he wasn't sure what was causing my problems.

He has just called me back and said that my Rheumatologist stands by his diagnosis of PMR but feels that I need a higher dose of steroids as I responded well to the high dose he gave me by injection back on 4th Dec. He said they feel I am intolerant to oral steroids so I have to stop them now and go up to see him tomorrow. The Rheumatologist wants a couple of blood tests done and I am to be given another steroid injection tomorrow. If this has the same effect as it did in December then I will be treated by injection instead of the pills.

I feel so much more positive now as I did feel a million times better after the last injection - oh heck I hope it works again this time!

I also contacted the Tayside Support Group yesterday (something I would never have considered previous to getting PMR!) and I am so glad I did. I spoke with a lovely lady called Jean and she was very helpful.

I am desperate to get back to work having been off since last May and have been really stressed out worrying that I could lose my job. However I've just been advised that I will now be covered by the Disability Discrimination Act which will give me some protection and that my work are legally obliged to make reasonable changes to help me. I do hope that's right because it will be a massive weight off my mind! I had been hoping to get back to work next week but with everything that's happened there's no way that's possible just now. Doc signed me off for another 4 weeks but if the injection is as good this time, I expect to be able to go back on rehab hours before then.

Fingers crossed - well they would be if they weren't so sore!!

Thank you again.

Hello Klosblue and I'm so glad that things are now heading in the right direction for you. It did sound so much from your earlier post that you were having a bad reaction to the steroids and I'm so glad the rheumatologist has decided to go down the injection route. That must make you feel so much more positive especially knowing that you had such relief following the first injection. Best wishes for tomorrow. MrsO

Hi, I have just found this page after surfing the net for details on PMR and I am so glad that I have read your experiences. I have been off work since last August and was diagnosed with PMR before xmas. I started on 40mg prednisolone and am now on 20mg a day. But cannot get below this without symptoms getting worse. I have visited the Rhematologist twice and the first time I felt they dismissed my symptoms and made me feel worse. My GP insisted they see me again and check my ESR etc and this time they agreed that I am suffering form Pmr but must stay on steroids for at least a year before they would give me something else alongside the steroidsllike mexatrexate to reduce my symptoms. I too want to go back to work but feel completely hopeless as some days are good and others are just awful. I am hoping to go part time soon and see how it goes. I am only 55 and my mum developed PMR at the age of 80 two years ago. Does it run in families or are we just unlucky?.

Celestial

I am sorry to hear that you have pmr.

Please visit www.pmr-gca-northeast.org.uk

Read the BSR Guidelines issued June 2009 on the treatment and management of PMR.

Also, before you give up work, if you are not a member of a TU, visit CAB and seek advice. There is much government legislation to assist when you have a long term illness.

Sorry this is short, and other on this site will help.

Hello Celestial and welcome to this site although I'm sorry to hear that both you and your mother are suffering from PMR. Yes, it does appear that it can have a genetic link as there have been several other posters who have mentioned that their mothers were also sufferers. However, both cause and cure are still elusive.

It's good that you have managed to decrease from 40mg just before Christmas to 20 now.

Do you know what your ESR and CRP readings were when you were first diagnosed and what they are now? If they have reduced or returned to normal then that will tell you that the steroids are working to bring the inflammation under control. Usually, steroids reduce the initial pain significantly but everyone responds differently and sometimes it needs a higher dose for longer to get further relief.

It's important to keep a record of your blood test results so that you can see for yourself what is happening. Also, it is recommended that regular blood tests are done and each dose maintained until the bloods return to normal.

Hopefully, once armed with all the helpful information in the Guidelines recommended by Mrs K, you will be able to go back to your GP and/or rheumatologist and get some satisfaction, reassurance and further relief from your symptoms.

Do hope this helps and do let us know how you get on.

MrsO