Genuinely asking for a friend!

[NWFiona]

Hello everyone! Not sure how long since my last post?

I was diagnosed with PMR in January 2017 and am now down to 2mg with a few blips along the way, helped by the lovely knowledgeable people on this forum 🥰

I am ok generally, just have to be very aware of not overdoing things!

I am genuinely asking for a friend/neighbour (He doesn’t know!) He was diagnosed about 6 months after me, so we often compare notes! He is 72 & very active. I have told him on several occasions about this forum (even sent the link!) He has been going between doctor & MSK. Today I had a chat (2m distance of course!) He said - oh I’ve gone back up to 5mg - I spoke to the MSK & they said there is nothing more they can do, so they have referred me back to the doctor & I’m going to be on 5mg for life now!!! I could see he didn’t believe me when I told him that wasn’t necessarily true!

I was flabbergasted by this and just wondered what you thought?

Maybe I can persuade him to look at this forum?

Thank you 😊

[Telian]

You are obviously a very caring friend and the fact you have the same

Illness means you do have a lot in common. However you can only do so much with advice, particularly when it comes to health, it is up to your friend to decide what’s best for him. Some are more cautious than others. You know the saying you can lead a horse to water.....

Personally I agree with you and would never take things being said about my health to such a conclusion without having another opinion. Your friend ought to discuss it with his GP and go from there. Funnily enough I’m waiting to see MSK and find it interesting what they have said to your friend re the steroids.

Regarding helping friends or family I had a similar experience with my neighbour. I thought he was developing PMR from what he was telling me and advised him to go and see his GP. As I knew he wasn’t taking me seriously I said I didn’t want to scare him but untreated PMR, if that’s what it was he had, could turn

Into GCA with a risk of sight loss. He said he went but within 5 months he went totally blind from GCA as a result of untreated PMR.

He cries when he tells me he never understood what I was telling him. I have both and can present very well. I can only assume he thought it wasn’t a serious illness.

You’ve done as much as you can really.

[NWFiona in reply to Telian]

Thank you for your reply Telian! I think you’re right that I’ve done as much as I can! I think I was just frustrated, because I felt that no one involved actually understood PMR & there is so much invaluable information on here 😊

[Telian in reply to NWFiona]

I’m afraid they don’t understand - until

it happens to them - god forbid.

You can’t worry any more as 😊stress isn’t good for you.

[HeronNS]

All you can do really is what you already are doing. Perhaps mention that it might not hurt him to stay at 5 mg for a couple of months, and after that if his symptoms are well controlled he could start a very slow taper down by half mg steps. It would be better for him if he could get a little lower, if he's ready. On the other hand there are people who have permanent adrenal insufficiency and I think their daily dose may be something like 5 mg. Did he say why he's been told he'll be on 5 mg for life?

[NWFiona in reply to HeronNS]

Thank you Heron NS - not sure about the adrenal insufficiency, it’s never been mentioned? He does seem to have a lot more energy than me & always doing a lot of physical things! I think I’ll leave it unless he asks for my opinion 😊

[SheffieldJane]

Has your friend had his capacity to produce his own Cortisol ( Adrenal function) measured by means of a Synacthen Test? Or is he finding it impossible to get below 5 mgs?

I can’t really think of any other legitimate reason to keep him on 5 mgs. Of course you don’t know his medical history and some doctors are not very clued up on our conditions but maybe he should seek another opinion. Prof. Dasgupta ( leading light) is keeping his patients on very low doses like 3 mgs for life because it prevents relapses. Could it be that?

[NWFiona in reply to SheffieldJane]

Thank you SheffieldJane, as in my reply above to HeronNS I’m not sure about the adrenal insufficiency ? I’ll have to casually slip it into the conversation or just leave it be?!

Very interesting about Prof Dasgupta 😊

[PMRpro Ambassador]

Without knowing WHY MSK claim they can't do anything it is impossible to say much really. My personal experience of an "MSK specialist clinic" was pathetic - it was run by a physiotherapist who had done an advanced course and who thought because I could bend down and touch my toes there couldn't be anything wrong (he couldn't). And to be fair - MSK probably can't do anything much, certainly not using physiotherapy. PMR is managed by corticosteroids until the underlying illness burns out and goes into remission - and nothing will hasten that.

To be fair - if he has got to 5mg in 6 months and his symptoms are managed then being told to stay at that 5mg is fine really - and he isn't being nagged or forced to reduce when he shouldn't. He may well have reached 5mg but lower doesn't work - showing he has reached his objective: the lowest dose that works as well as the starting dose for longer term maintenance. If they aren't managed that is a different matter altogether. But to be at 5mg that works after only 6 months is pretty good.

[Roltuba in reply to PMRpro]

“Diagnosed 6 months after me” means he was diagnosed in 2017!

[PMRpro Ambassador in reply to Roltuba]

Oops - sorry, brain not in gear this morning! Even so, getting to 5mg in 3 years is reasonable. I'd take it and run if I was at 5mg and told to stay there.

[NWFiona in reply to PMRpro]

Thank you PMRpro - I hadn’t thought of it in that way!

Whereas I had a phone appointment with a different Rheumy from the same MSK dept & he is determined to get me off the steroids asap! 🤷‍♀️ That’s another story!

[PMRpro Ambassador in reply to NWFiona]

Not how it works - yes you get off pred as soon as you can but it has its own timetable and the rheumy has no influence on it. Trying to force a reduction only ends in tears.

[NWFiona in reply to PMRpro]

Thank you for your reply PMRpro

Sorry I didn’t write it clearly - my neighbour has had PMR for 6 months less than me - so approx 3 years?

He’s been up & down like me & been under 5mg a couple of times.

It just shocked me that he was told that that was it for life! As you say more background information is required to form an opinion.

I have been to the same MSK dept & apart from my original diagnosis with a really well informed consultant, who had unfortunately left, the others have been ineffectual! That’s another story!

😊

[PMRpro Ambassador in reply to NWFiona]

I think a lot of less informed doctors believe the "18 months to 2 years" story with PMR - and when people struggle with getting the pred dose lower than that they give up. At least they are being kind enough to leave him on a dose that works for him as it is a low, physiological dose and so unlikely to do much harm. There is also the question of how old the doctor was who said it - once you are over 70 a lot of doctors lump everyone together as being on the downward path!

[Gaz227]

I was told the same by my Rhuemy that I would probably note probably be on a low dose for life. Every time I tried to get lower 2.5 was the really painful sticking point although anything below 5 was a problem , saying that I am on 4 now but as I said in another post developing a whole now can of worms that will involve going on MTX , but on the bright side that might get me off pred, for now anyway , hope he sorts it out . 👍😀

[HeronNS]

My doctor, who has always been fine with my managing my own taper, told me right at the beginning that she had patients who always kept a supply of 1 mg tablets on hand in case they needed them. I didn't really understand what she was saying back in those early days. Later I came to understand that when you taper at the very low doses you might really need to keep taking pred for a long time, even if the dose is vanishingly small. That final (or perhaps simply very long lasting final taper) dose could be 5 mg for some people, and 1 or 2 mg for others, It depends on body size, and how efficiently one metabolises the pred. I think we are all in general agreement that your friend is getting good advice from the doctor.

[kulina in reply to HeronNS]

HeronNS I agree with you. I beleive a Synacthen Test is very important at this stage of PMR.

[NWFiona in reply to kulina]

That is something I need to look at - it hasn’t been mentioned to me, thank you

[NWFiona in reply to HeronNS]

Thank you, HeronHS - I am looking at it from a different point of view now! 😊