PMR - newly diagnosed and struggling with my young family

The main reason for starting with a 15-20mg pred dose is that PMR is alone in responding so dramatically to this moderate dose - using higher doses may mask the other illnesses, you are absolutely right. 

Sorry.

congratulations - someone special - a statistical anomaly. They do exist!

Don't be too disheartened, nothing really happens. We don't wake up on our 50th birthday and are magically different.

But happy birthday anyway.

On a serious note. I refuse to let PMR take away my sense of humour.

and thank you for my pre birthday wishes

I have, however, two doctors on my list who are equally as sceptical of this attitude as we are...

yep i can hear kids bouncing of ceiling and im letting them ...still not moving it hurts too much.

https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

I am at 4mg for the first time in 5 years, 3.5mg just works, 3mg doesn't.

There is another similar scheme, not quite as slow. Both or something similar have been used by a lot of patients on the 3 forums in the UK and they have all managed to get lower than ever before and with very few problems. 

I would have a go with this before considering MTX. There is no real evidence it works in PMR - it HAS helped some patients and they get worse again without it. But if it isn't PMR they have but late onset RA which can be almost identical it would.

I, by the way, have had PMR for 10 years, 5 of them on pred, for well over 3 years at above 10mg. My bone density is unchanged - only about half of patients on pred develop osteoporosis and you can't say it is the pred unless you had a dexascan done at the outset.

As well as the reduction scheme I have pointed you to, I'd also suggest finding a Bowen therapist and having a few sessions. It helped me with neck and shoulder/back pain. You will know very quickly if it will help so it isn't an open-ended keep paying for the rest of your life like some chiropractic seems to be. If Bowen doesn't help in 3 sessions it probably never will. Sometimes patients crawl into a session and walk out an hour later!

   Can't really tell you about Methotrexate but understand the quandry....  I think I'd want to protect my liver but who knows which is best and how long you might have to take it. 

  I've also experienced some discomfort, I'll call it, around my neck, shoulders... like across the front of my chest...  when the dose of Pred kicks in this goes.... sometimes.  lately I've been have mild headaches and of course the ever present fatigue. 

 I like to hear about your friends getting better after a year.  I'll be on this "stuff" a year in August! 

Take care....

I personally wouldn't use MTX - the local rheumy here is adamant it has no real place in PMR and although I'm not under him now he'd have to be involved as it only comes from specialists and I know he wouldn't ask me to take it - problem solved.

Yes pred can make osteoporosis worse but there are also medications that will sort that out too if it gets too bad. But lowered bone density doesn't automatically mean broken bones - and paying attention to all the other risk factors does reduce the risk greatly.

But as I say - I don't see what the rheumy means by "it isn't working". You need the amount of pred you need for YOU and YOUR disease process. It isn't a case of using pred to "get rid of PMR" and cure it. PMR is the name we give to the symptoms of an underlying autoimmune disorder which is ongoing. The pred does nothing for this autoimmune disorder - it manages the symptoms to allow a decent quality of life until the autoimmune bit goes into remission and stops attacking your body and causing damage. That might be 6 months, 2 years, 5 years or, in my case, 10 years and counting. It's a "how long is a piece of string" question. The cause is ongoing - just like in Type 1 diabetes - you don't give a patient insulin for a few years and then say, the diabetes should have gone away because you have been in the medicine...

After 18months to be at 9mg is pretty normal. Follow the link I gave you and then look at the "Bristol paper" - 6 weeks 15mg, 6 weeks 12.5mg and A YEAR of 10mg before reducing to 9mg. These are top people giving this advice and that is 16 months to 9mg even without any hitches - and you have been down and up and down and up. Getting into a yo-yo situation with your dose makes it increasingly difficult to reduce. 

I'd take your other rheumy's opinion and try the "Dead slow and nearly stop" reduction first. But even then - it may just be the autoimmune activity is still needing 9mg-worth of antiinflammatory action. Keep MTX as a last resort - there are a lot of people who were being threatened with a drug for which there is NO concrete evidence in PMR who have reduced without it. Going very slowly has far fewer potential side-effects than MTX.

Or scroll to the top of this page where you will see

Home >  ..... > Polymyalgia rheumatica and giant cell arteritis

if you click on that it will take you to the front page of this forum (so to speak) and there is a list of all the discussions - the one you want is the fourth down

PMR-GCA website addresses and resources

The link works for me so I can't say any more than that I'm afraid - let your cursor hover over the link (it should be in red) until the hand appears and then single click - the thread will open in another tab.