"Refractory" PMR

[podo]

Thank you to all who responded to my post yesterday, your good wishes are most welcome.

I would be interested to hear from other five-percenters with their experiences.

[PMRpro Ambassador]

I'm one too - have had PMR for 14 years, the first 5+ years without pred, been on pred for 8 years. Have had some interesting experiences on the way having lived in the UK and now in Italy and so have tried all steroid options with varying results. But on the whole it's been not too bad really - especially since I was put on Lodotra/Rayos which is available on the health service here and I think is ace if you have to take steroids.

What do you want to hear about?

[podo in reply to PMRpro]

That must have been very hard for those 5 years, I don't think I would have coped! What are the advantages of the Lodotra/Rayos route, I am always interested in alternative treatments. In anticipation of my inflammation load increasing as I age (in view of my decreasing remission periods) more friendly medicines would be a plus. I don't fancy MTX from what I hear about it and TCZ, although it may become cost viable in the future also seems to have its own problems.

BTW, do you think that the warmer climes are helpful to your condition?

[PMRpro Ambassador in reply to podo]

Nothing warmer at present about where I live - half way up a mountian in the Italian Alps/Dolomites! It has barely been above freezing for the last 2 weeks, most days well below. And it has been dampish - we have snow.But generally it is drier than the UK and far less windy which I find helps. I don't mind cold - but I don't like damp.

The Lodotra/Rayos advantages are that you take it at 10pm within 3 hours of a meal - that ensures the outer coating breaks down and releases the entire dose after 4 hours - so it is ready and waiting for the inflammatory substances being released about 4-4,30am. Absolutely NO morning stiffness. no messing about getting food to take your pred and I feel that it works better and allows a lower dose than anything else I have tried. I have no side effects I can identify. What's not to like? I'm on it as the only available alternative here to Medrol, methylprednisolone which caused me all sorts of problems - the worse being it didn't work for me! Lovely black beard, massive weight gain... Was able to lose 35 lbs by cutting carbs even while still on 10-15mg, my hair is back to normal. I have no reservations about taking Lodotra for a long time - and I haven't had any breaks, it is possible I miss them by not reducing quickly enough I suppose.

I was offered mtx or leflunomide a few weeks ago by a new rheumy - I declined politely. He is a top PMR expert. No thanks - I'll stop seeing him if he gets emphatic but I don't think he will.

You cope - there is no alternative is there?

[Hidden in reply to PMRpro]

The beautiful dolomite. Giro will hopefully go there this year. Had hoped I would get to see fantastic scenery in person and not just watching cyclists riding on tv.

[PMRpro Ambassador in reply to Hidden]

The Giro passes our door every so often. Why not?

[Sandradsn in reply to PMRpro]

Beautiful Dolomites! all that wonderful fresh air.We went to the top and it was really cold in August!

[trish29 in reply to PMRpro]

Hello PMRpro and A Happy New Year to You. Is Lodotra available in the UK ? Morning pain and stiffness has Always been my problem. MTZ and TCZ made me very ill due to a sensitive stomach and other medications as well but taking something at night to counteract the early morning inflammation sounds ideal to me. I Thank podo for yesterday's post highlighting Refractory PMR. . I don't see Dr Hughes until March but l am thinking of sending him an e-mail after I've been to see my Osteopath at the end of the week, l really can't take all that's going on with my body at the moment painwise . Best wishes to you and podo and All PMR/GCA sufferers. trish 29

[PMRpro Ambassador in reply to trish29]

In the UK Lodotra is only available privately - it was NHS approved for RA but even that is discouraged now because it is so much more expensive (about £25 for 30 tablets whatever the dose). You can get a similar effect by taking enteric coated before bed - you'd have to work out how early for you as it depends on how long YOUR body takes to absorb it, it takes maybe 5 to 7 hours and you need it to be there by about 4am.

Or maybe you would be better splitting your dose - quite a few people have found that taking a portion of their dose later in the day extends the effect for them and the mornings are so much better. Again it needs a bit of experimentation to find what works best for you.

[trish29 in reply to PMRpro]

Thank you PMRpro, l now remember reading this in a Newsletter and as you can imagine after all these years l have tried every way but which way with my medication and splitting my dose doesn't Always work for me.l do try to split my dose to help the Brain Fog. I will continue to try and conquer my pain and to come down another half mg on the steroid. At the moment 15.05mg is a struggle where 16.05 gives more relief but l can hear Dr Hughes tutting. I would love to be at least 2mg lower when l see him in March. Thank you for your valued information .trish29

[yogabonnie in reply to PMRpro]

Be careful you are getting close to describing exactly where you are and we will beat a path to your door. haha

[PMRpro Ambassador in reply to yogabonnie]

I have posted links to the ski area that is 5 mins from the door before. There are not many Brits here - and we are the only couple who are both from the UK!

[Blondenettie]

Hello from the USA. Diagnosed with PMR in Dec. 2016. Am currently taking 3mgs. of prednisone and feel great. My rheumatologist also put me on Leflunomide in January 2017 and I’ve always felt really great except for anxiety from the prednisone.