PMR

[Eniale]

My husband has PMR. Was diagnosed very quickly by GP. At stage of cutting down on steroids as told horror stories of being on them too long. He has had a relapse and in a lot of pain so gone back on to two steroids. His checks have been changed to 6 months. Is that what others have?

[DorsetLady PMRGCAuk volunteer]

Can you give us a bit more information please - what dose did he start on - and what dose is he on now. You say 2 steroids - do you mean 2mg or 2 tablets - if tablets what strength? How long has it taken him to get from original dose to now?

He has obviously gone below the level he needs - and despite the horror stories as you say - Pred is not as bad as many people believe - and it is the only drug to control the PMR.

When we have more information we can give you a better answer.

[Eniale in reply to DorsetLady]

He was on steroids for about 6 months. Cut down as on borderline diabetes and doctor pushing him to cut down. Went on to Methotrexate once a week. Having a relapse so gone back onto 10 ml of steroids. He was clearly struggling and I had to persuade him to go back on steroids. He is only having checks every 6 months . Is 6 months about right. How long have others stayed on steroids?

[DorsetLady PMRGCAuk volunteer in reply to Eniale]

Most people are on steroids for a lot longer - 2 years is sometimes quoted as a figure, but it usually a lot longer - in fact nearer 5 or 6 years.

6 monthly checks are quite normal.

Have a read of this it might give both you and your husband a better idea of what his PMR should be like -

healthunlocked.com/pmrgcauk...

[piglette in reply to Eniale]

The important thing is that he reduces slowly, if he is in pain STOP reducing. He has done well to get to 10mg even. It does sound as if he reduced too fast. Several people on this forum are diabetic and a good GP will ensure it is managed. It is a bit of a waste of time reducing the steroids because of possible diabetes if they no longer work properly, as they are no longer helping the pain.

[Blearyeyed]

Knowing what dose he went down to and what dose 2 tablets is would help us give your husband and you more helpful advice , if you can give us some more details on his symptoms and this flare , plus what medication he is on , and if he has any other health issues he is being treated for , hopefully the forum folks will be able to give you lots of answers.

[PMRpro Ambassador]

The horror stories are often like the horror stories women tell pregnant women about childbirth! They may not happen - and need not happen when you know how to avoid them.

If he was showing signs of pre-diabetes it was probably due to the pred but the first approach to managing it should be cutting carbs in his diet - not reducing the only medication that manages PMR.

How was he trying to reduce the dose? He needs 1mg tablets to be able to reduce the dose in small steps - that alone can make a big difference.

[anutycrixp]

So many horror stories -not balanced by the effective and sensible treatments with steroids with no problems.Relative of mine has taken steroids all his adult life[over 20 years] for a nasty autoimmune illness.Effective treatment with NO side effects and NO problems.I have found steroids a Godsend to control symptoms of P.M.R,so far just slight weight gain.These autoimmune illnesses are so individual,no one side fits all! good luck and I wish you well.

[Purplecrow in reply to anutycrixp]

Totally agree. Prior to PMR, All I knew of Prednisone was my mother's friends bemoaning " that dammed prednisone" whenever one of them needed to use it.

I, however, have come to see prednisone as a miracle drug. Relieving pain, cheap, and minimal side effects, ( regardless of the "horror" warnings in the packet literature).

At 6 years with PMR, prednisone has caused me no side effects, to date.

Currently 8 mg day.

PMR diagnosed 2013