Polymyalgia returning

Thank you Silver.  Will take note of your suggestions.

Yes I always drink  decaf tea, and some herbal teas.  I have an electric coffee maker, and would miss it if I stopped using it.  However I only have one mugful per day.

I've had one of the t's items, but will look for others in Morrisons.

Thanks

Thanks for coming back Eileen.

When starting to take my dosage down a few months ago, I always waited around a month before taking it down another 1mg per day.

By old, I meant that the Patient forum I found seemed to relate to around 2014.  Tried to find more recent but perhaps was doing something wrong, but I still thought it would be worthwhile to enter the discussion.

I've had palpitations for quite a few years, but they would only show up once in a while and not last very long.  It's almost constant now, but I think there is a strong added element of Anxiety. The suggestion is that it is more genetic, father and uncle having had heart attacks but, other than that, there appears to be nothing visible in my heart x-rays etc.  

The beta blockers were removed from my prescription because of having to go on to Esomeprazole.

Yes I meant temporal arteritis, sorry, the temporal lobe relates to my epilepsy which fortunately has not caused any seizures for over 10 years, but I must keep taking the prescribed treatment for it.

Ah - you googled something and a post came up? If you follow the link I gave you you will find all the latest discussions which may or may not be of interest to you. It is only if you reply within an old discussion that you may not be seen - though I am still here and have read and followed every discussion for the last 8 years! - but you have started a new discussion so everyone actively registered with the group will see it at some point. 

You do know though that you aren't reducing the dose relentlessly to zero? The pred hasn't "cured" anything and once the starting dose has got the existing inflammation and pain under control you don't stay at that relatively high starting dose and should start to reduce slowly - but you are only looking for the lowest dose that manages the symptoms as well as that starting dose. The actual disease in an underlying autoimmune disorder which takes anything from 2 to 6 years to burn out for about 75% of patients. The rest of us take even longer.  But most people get to under 10mg as their long term dose and many get lower by going very slowly, for example as described here:

https://patient.info/forums/discuss/reducing-pred-dead-slow-and-nearly-stop-method-531439

which is being used in a clinical study in the north of England.

I realise I will almost never be able to completely come off steroids.  I was told this by the rheumatology doctor, supposedly because I was having so many occasions when I had to go back to a previous higher dose, but was encouraged to try to reduce as much as possible, very slowly, and my own GP followed the procedure you suggested then, when things got very much better, she suggested that I keep trying to go down 1mg at a time but over a good length of time  i.e. 1 month at least.  

Looks as though I may just have to go to the hospital clinic again to update them on my recent past with the steroids.  

Lorna, although your doctor was well intentioned her idea of slow reduction by the time you are at a level of 5 mg isn't what most of us have actually experienced when we've been successful in our reduction.  My case, which may or may not be typical:  Got to 5 mg the spring of 2015, a little under a year after starting at 15 mg.  Since then I've reduced to 2 mg, and currently am attempting to go to 1.5.  You can see this is very much slower than 1 mg per month.  I've never had to go up by more than 1 extra mg, and then only for a matter of days, to deal with any increasing pain from either PMR or, more likely, pred withdrawal.  This has happened less than a handful of times.  It's possible, indeed more than likely, that had I not had good guidance form this forum from early days I too would have been into a bit of a yoyo situation as my doctor started me with a reduction of 1 mg per week, although with instructions to stop if I felt pain returning.  It was the famous Dead Slow Nearly Stop method which has saved me.  I'd say, right now, I'm at the "nearly stop" phase!  Each reduction seems to take measureably longer than the one before. 

Your rheumatology doctor has a crystal ball then? There is no way anyone can know whether a patient will or will not get off pred - and the vast majority do (over 75%). If they don't it is just as likely to be because their adrenal function does not return adequately although that is rare. Reducing at 1mg a month is often nowhere near slow enough to let the adrenal function catch up - as Anhaga has described. 

An Italian study found that a third of patients still require pred after 6 years - but we know that even they are often able to get off pred eventually. Mind you - there is a lot to be said for having a doctor who does accept there is a likelihood that long term pred will be needed since the vast majority are trying to force their patients to too low doses and off pred whether the symptoms return or not!

Belonging to forums such as this obviously should be able to help lots of people, particularly those whose doctors are not very experienced in dealing with PMR and TA.

I've certainly learned a lot today.

Thanks to all of you.

Hi Eileen - I am interested in the first papragraph of your reply above.

You mention dealing with a flare by taking 5mg above where a flare happens for a week or so and then coming back down to just above where the flare happened "quite fast"

I just wondered at what rate you mean  - for instance if I went from 11 to 16 for a week or so at what rate would you then recommend droppig back down?

Hello Eileen

I should perhaps drop off the forum just now. I've been at a clinic today for purposes of looking into possible causes of internal problems I've been having for a few months. The specialist thinks steroids could be at the root of this and I could be taken off them. I'll be given a thorough exam in the hospital in a few weeks time,

Thanks for all your advice.

I'm sorry to hear of your problems.  Please let us know how you get on.  All the best.

Thank you!

Why go away? We are nice friendly people (I think) and if you DO have PMR as well you will need support and advice on how to cope with it without steroids and some of us have done that too - I had 5 years of that joy!

Do let us know how you get on though.

If you have only been on a higher dose for a short time you can go back to the old dose immediately - although it is probably better to go to a bit higher than where the flare happened and some people find it easier to go halfway first and the rest of the way a few days later. YOu just have to try and see how you get on.