PMR Journey

[SandraMarric]

First of all, a massive thank you from the thousands like me who regularly look at this site and read the posts but who don’t usually post themselves. The advice is amazing and, I am sure, has done a terrific amount to reassure and inform this silent majority. The contributors, especially the regular ones, almost seem like friends. It must take up a tremendous amount of their valuable time.

I would appreciate anyone’s comments on my experience with PMR and the following may also be of use to other people. I had PMR diagnosed in March 2015 and, having found this site, worked out a very slow method of reducing which, apart from one hiccup early on, worked very well and last June I came off the steroids altogether. This was an altogether horrid process and when I stopped the medication I developed all kinds of symptoms all (or possibly none!) of which may have been related to stopping the Pred. I had headaches, vision interference (lots of scintillating scotoma - flashing lights), earache, muscle pain in one eye which then migrated to the other, occasional shivering, depression, transient inability to focus both eyes together, some stiffness and a general feeling of being ill. In fact, I nearly cancelled a holiday to France, worried that I would feel too dreadful to go. During this time I also happened to damage a gluteal muscle playing golf. Fortunately all these symptoms apart from the muscle damage disappeared after about five weeks and I am feeling well and ‘myself’ again, although, in spite of fairly intensive physiotherapy, I’m finding the muscle damage has affected the way I walk and has caused knee pain! So, in three months I have gone from playing golf three times a week and walking everywhere to being a walking wounded. I am now very stiff, especially if I have been sitting or lying down for some time and am concerned that the PMR has not gone entirely. I can cope as I am, but would love to get back to being really active again. Has anyone any suggestions or had experiences like this? If I have to go back onto steroids again I imagine that I can persuade my GP to let me do so but, given how horrid it was stopping the Pred, I’d rather not do so if possible.

If anyone has had any advice or experience similar to all this I’d be really grateful to hear it.

Thanks and best wishes to you all. This is a great community.

Sandra

[DorsetLady PMRGCAuk volunteer]

Hi Sandra,

Although you say you devised a slow plan to reduce Pred, it sounds pretty quick compared to most people!

Are you saying all the symptoms you had immediately after coming off Pred are gone? I guess that sounds like "cold turkey" to me and pretty horrendous.

I would guess the muscle problems are a combination of things, your golf injury, the side effect that Pred can have on the muscles, and an over-enthusiastic physiotherapist- you cannot treat PMR damaged muscles in the same way as you treat sports injured muscles, it has to be much more gentle! Plus, you have to be much more gentle with your activities, and rest in between - doesn't sound as if you did much of that.

If the PMR is still present, and it could well be (18months is not very long) and you do go back on to Pred, then please reduce it a tad slower this time around.

[SandraMarric in reply to DorsetLady]

Hi Dorset Lady,

Thanks so much for your reply. Everything that you say makes sense.

Yes, all the symptoms I had when coming off the steroids have disappeared apart from the fact that I am feeling stiff but not all over. I can raise my arms above my head and easily touch my toes but walking is not good until I get warmed up. It’s interesting what you say about physio treatment and PMR and something I’d not thought about. I’ll certainly bear it in mind.

I agree that I’ve come off the steroids rather quickly and that’s probably not good. I started at 15mg of Prednisolone and then continuously reduced the average weekly dose so that in any week I dropped by about 2.5% compared with the week before. When I got down to the lower doses (3mg) though I got too excited and percentagewise reduced by more than my planned 10% per month. At the time I stopped I was taking 1mg every day and should probably have continued with my plan and taken 1mg every other day, then 1mg every three days and then later on every four days first, but I got too excited at the thought of actually coming off the medication! I think I’ll probably have to wait and see whether the PMR has totally gone or whether it is just gently simmering and waiting to blow up again.

Again thanks, both for your reply to me and for the other great advice you give on the forum.

[DorsetLady PMRGCAuk volunteer in reply to SandraMarric]

Thanks, you're very welcome. It's nice to hear that someone has got off Pred, even though the way was a bit extreme!

Do hope your PMR is in remission, but you do still need to look after yourself, some say it can take up for a year for your body to get back to normal in all ways. I've been off for just over a week, thankfully without your adverse effects, but know I must still be careful for some time to come!

Take care.

[pmrdec112014 in reply to DorsetLady]

Fantastic news that you are off the pred Dorset lady!

[DorsetLady PMRGCAuk volunteer in reply to pmrdec112014]

Thanks, keep fingers crossed it stays that way.

[Rokerman in reply to DorsetLady]

DorsetLady - didn't realise you were recently so near to coming off Pred completely, which is great news for you! However, does that mean you'll be off the forum too?! (that's not such good news for the rest of us - still, if there's a living to be made from dispensing common-sense advice, you'll be very successful at it, I'm sure.....!) Good Luck!

[DorsetLady PMRGCAuk volunteer in reply to Rokerman]

No chance, you don't get rid of me that easily. Hope I'll be around for a lot longer. Thanks for kind words, much appreciated. I know how much this forum helped me in my early days, so just returning the favour.

Hope you're well at present.

[SheffieldJane in reply to DorsetLady]

Hurrah! For you DorsetLady, just quietly getting on with it. Well done!!!

[PMRpro Ambassador]

To be off pred in 16 months is VERY speedy! I do hope it has been successful - in fact, men seem to do better than women and the thought is the extra muscle mass may have something to do with it. You were obviously fit to start with - and kept the fitness up so your muscle didn't suffer.

Top experts have claimed that 25% of patients get off pred in under 2 years - but are then at a higher risk of relapse. So you are right to be wary.

After stopping the pred, if there is some activity left in the autoimmune process, however small, eventually the inflammation will build up again and, if left, lead to a flare. Think dripping tap into a bucket - however slowly, it will fill up if it keeps dripping. But it could jsut be that you are now rather less fir than you were a few months ago - that is inevitable and muscle mass goes quickly when you are inactive.

[SandraMarric]

Thank you so much PMRPro. You are another person whose advice is excellent and we are very lucky to have someone on the site who is so very knowledgeable. It must take ages to write all your replies - but they are appreciated.

I am keeping my fingers (and everything else) crossed as far as the PMR is concerned. I had never heard of the disease before. but since I was diagnosed three people I know have also had the same diagnosis (including my sister). Just for interest to others who may read this, apart from the excellent medical advice given here, the two most useful practical things I've learned about on the site are ....... Bowen therapy and Doublebase Gel. Both have helped me.

Very best wishes, Sandra