What is the average length of time for pmr.? Its been 2 years and I cant get below 4mg of methylprednisolone without muscle and joint pain.

[Kenneth77]

Any input greatly appreciated!

[PMRpro Ambassador]

medpagetoday.org/rheumatolo...

practicalpainmanagement.com...

are reports with slightly different emphases about a study from top PMR/GCA experts at the Mayo Clinic who found the median duration of pred management required for PMR was 5.9 years.

If you have got to 4mg in under 2 years you are ahead of the curve - I'd have taken it and run!!! It is thought that about 5% of patients never do go into remission - the positive being that 95% do!

[Kenneth77 in reply to PMRpro]

You are a truly amazing person!!!

You are always there. I read every word in the links you sent and feel a lot better. Nothing out of the ordinary that the discomfort is still here and resurfaces if I lower my dose to 2mg from 4mg.

Thank you again for being so responsive!!!

Ken

[MhairiP in reply to Kenneth77]

Yes, PMRPRO is great, isn't she? So knowledgeable and always here to help!

One thing that struck me, was when you mentioned lowering your dose to 2mg from 4mg - I have read that you shouldn't decrease by more than 10% at a time. So if you're on 4mg, try dropping to 3.5mg, not 2mg (4mg to 2mg is a 50% decrease!).

Good luck!

[Kenneth77 in reply to MhairiP]

Thank you. I thought my body would handle it but I was obviously mistaken. Here in New Hampshire the smallest dose tablet is 4mg, so it is easy to break it in 4 parts, but next time I try I will definitely cut the quarter tab in half with a sharp razor blade and I'll be much closer to reducing correctly. Your advice is very much appreciated!!!

[PMRpro Ambassador in reply to Kenneth77]

4 to 2 is a 50% drop - hard on your body all at once. Doesn't matter if the cut is accurate, it will still be less. And you can add in a slow-down approach:

healthunlocked.com/pmrgcauk...

where you challenge your body with the new dose just one day at a time for a while, getting the days of new dose closer as time goes on. (Other plans are available). This one has been used in a clinical study in the north of England.

[TooSore in reply to PMRpro]

I pick up my prednisone at Walmart. Try getting 1mg tablets there.

[Kenneth77 in reply to TooSore]

Thanks for your reply. Methylprednisolone is not available in less than 4mg tabs. Prednisone is a very different animal. I already tried to cross over to prednisone and it wreaked havoc on me

[PMRpro Ambassador in reply to PMRpro]

PS - I'm assuming you are on methyl prednisolone?Medrol????? That's the only steroid I know of that comes in 4mg tablets.

[Kenneth77 in reply to PMRpro]

Yes...4mg Tabs Can easily divide in 4 to give 1mg but quite iffy after that. too small for a pill cutter, But I will do with a razor blade...thanks!

[PMRpro Ambassador in reply to Kenneth77]

I said it as much for the people telling you to get 1mg pred! It doesn't occur to everyone that there are varying version of steroids!!! Don't go cutting off your fingers now!

[Kenneth77 in reply to PMRpro]

I am careful and deliberate. I wont lose fingers.

[GinnyMa in reply to Kenneth77]

Kenneth

I live in Massachusetts and I can get 1 mg prednisone tablets. Perhaps with a lovely ride over the border, you could pick up this size tablet.

[Kenneth77 in reply to GinnyMa]

Thanks for your reply. Methylprednisolone is not available in less than 4mg tabs. Prednisone is a very different animal. I already tried to cross over to prednisone and it wreaked havoc on me.

[Bronni in reply to Kenneth77]

I hope you’re not going directly from 4 mg to 2mg? If you are lowering from 4 mg, I would suggest you go to 3 1/2mgs first.

[Kenneth77 in reply to Bronni]

Thanks. I found that out the hard way!

[JohnnyQ50]

Hi Kenneth

Advice on latest treatment for PMR:

For patients with an appropriate response to therapy, tapering to a dosage of 10 mg per day should occur within 4 to 8 weeks after GC initiation (eg, reduction by 2.5 mg/d every 2-4 weeks until 10 mg/d is reached). Further tapering can occur by 1-mg decrements every 4 weeks until discontinuation if remission is maintained. A treatment duration of 1 to 3 years should be expected.

My Rheumy is advising similar, I am down from 30 mg/d at the end of last October to 7 mg/d with no PMR symptoms, last bloods a week ago CRP <1 and ESR 11, so I will continue at 1 mg/m

Only pred side effects were tingling in fingers and toes and very slight night cramps at about 12 mg/d but theses have subsided.

Cheers

John

Full report can be found here:

practicalpainmanagement.com...

[Theziggy in reply to JohnnyQ50]

Other tapering plans can be found here (one size doesn't fit all??)

steroidtaper.azurewebsites....

[marigolds in reply to JohnnyQ50]

So grateful for that link it ties up with my symptoms only wish my doctor would look at it.

[navejasjoe]

My wife would gladly be in your position. It's been almost 3 years with PMR, and she has not been able to get below 10.5mg.

Joe

[Kenneth77 in reply to navejasjoe]

Thank you. It's reassuring to know I am not wandering in nowhere land. Best regards to your wife.