Two years after diagnosis

[Colin-s]

Just wanted to say hello and thanks to all for the information on here which I have found encouraging and helpful. I am 66, male and was diagnosed with PMR two years ago after the pain became so bad that I finally got in touch with my GP. I am now down to two mg of Prednisolone after a bit of a struggle. I still have pain in shoulders and neck but it is bearable. I had a meeting with the doctor today and after a full suite of blood tests she says I am fit as a fiddle apart from the PMR which is reassuring. She is referring me to a Rheumatologist as I think she does not know where to go with it now and is not keen on me staying on pred much longer. I daresay I will have a bit of a wait for the referral but for now things are going ok.

[DorsetLady PMRGCAuk volunteer]

Oh dear, another doctor who thinks PMR only lasts 2 years..

It may do for some, but for many it’s a lot longer.

If you still have pain in shoulders/neck, I would say your PMR is still very much alive and kicking -and you probably need slightly more Pred.

It may bearable at the moment -but left to its own devices it may not be! So don’t let it get any worse…

[PMRpro Ambassador]

Hi and welcome.

I will not be surprised when the local rheumy department declines to see you and she is a bit of a numpty for even thinking about it in the current climate! If you are at 2mg you have done really well and all there is to do is be patient until your body agrees it is OK to get lowesr. Just don't let her force you off the pred.

I do wish Prof Sarah Mackie in Leeds would pontificate on the "PMR 2 year myth" as she describes it. Only about a third of patients are off pred in 2 years - that's a lot of us who need it for longer! I am particularly exceptional at 18 years but there are several at well over 10 years here and sensible rheumies don't worry about patients on 2mg and doing well. Prof Baskhar Dasgupta, formerly of Southend, told us 3 years ago he often keeps patients at 2-3mg as it reduces the risk of relapses - a tacit admission that it lasts longer than they admit.

[alangg]

Yes - I would say that 2 years is a bit quick; it took me nearly 3 years and I only started on 15mg (at age 59). The last bit is the slowest as the reductions are inevitably bigger in percentage terms because pills under 1mg don't exist. So, give your body plenty of time to adjust to what could be a 50% or eventually a 100% reduction.

If you aren't having side effects from a very low dose of pred, then I don't really see why your GP is so concerned, this forum has many people who remain on a low dose for life with no (apparent) adverse effects.

[pata63 in reply to alangg]

I cut the 1mg tablets in half and voila 0.5mg reductions. When I get lower I'll cut those 0.5mg in half and have 0.25mg. If you use coated pills cutting isn't recommended, but I've never even seen a coated Pred pill where I live. I've also never had any associated stomach acid problems. I was started on a PPI when I was on 20mg but by the time I was down below 10mg my GP agreed I could taper off the PPI.

[alangg in reply to pata63]

Yes - I used a pill cutter to keep as close to a 10% reduction as possible. I cut them in half but never managed quarters; just ended up with crumbs and dust!

[Francesbarbara in reply to alangg]

I think that successful cutting must depend on the pill construction. Unlike previous ones, my current pills can divide easily and I've used 0.25 ever since I got down to 4mg.- now at 2mg and going as slow as a snail & no pain at all after three years of diagnosis.

[ParoaPrimary]

I am in a similar situation to you in that i was diagnosed with PMR 2yrs ago and am down to 1mg Pred. taken with evening meal.I also have some neck pain, sometimes also in the fingers.Recently to reduce inflammation i have excluded glutein,alcohol,tea,coffee and added sugar and lost 10kgs in weight with reduced hunger, which i had previously been unable to do.I also take some Chinese herbs which help in the reduction of inflammation.A book i have read recently stated that sufferers of autoimmune diseases nearly always have leaky gut syndrome greatly caused by glutein and greatly assisted by glyphosate(insecticide sprays) from fruit and vegetables.To counter the possibility that i have leaky gut syndrome i am also taking a leaky gut formulation.My game plan is to ' hang in ' on 1mg Pred. and to keep inflammation low with the measures i have stated and hopefully i can further reduce again soon.But like many others i have been pressured by my doctor regarding steroids and the damage they are doing, but i have become aware through the forum that many people have been on Pred. for many years with little risk, especially at very low levels of the drug. While Pred. fights inflammation the food items i am excluding are inflammatory so i believe apart from weight loss they are helping in reducing inflammation on the ' journey to wellness '.I must say that information i have learnt on the forum has been most helpful, including from you, in a similar situation to me.Best wishes and hopefully we will enjoy further ' wins ' in due course.

[PMRpro Ambassador in reply to ParoaPrimary]

And that is part of why we say cut carbs, especially processed carbs and added sugar from the start - that effectively does cut a lot of gluten when you take out baked goods.