Rheumy says reduce....

[Temoral]

Hi Everyone...Rheumy phone call today. Recounted the symptoms I have been having whilst reducing on DSNS, going 1/2 mg at a time over 4 weeks. He said ...whilst I appreciate the symptoms, I would like you to try alternate days 5 and 4 in order to get back to 4 if you can. These reactions are not what is to be expected at a low dose and we may need to use a tapering drug if they persist. I said I would stay at 5 as we are going to Scotland for a wedding and he agreed, and will phone again in July. Is he being reasonable, or should I carry on with previous plan.......?

[SheffieldJane]

These reactions are exactly what I would have expected if I had reduced beyond my ideal dose for relieving my current inflammation levels. The danger at these low levels is provoking a flare that takes you right back to the beginning. The warning signs need to be heeded if they persist and you have had plenty. I hope 5 mgs covers you for the wedding. My Endocrinologist advised alternate day dosing. I just felt awful on the low dose days. Creeping down by half a mg once a week, then twice a week, then three times etc seems to be working for me so far. It is a tricky stage with the adrenal involvement and it needs to be managed carefully.

[Temoral in reply to SheffieldJane]

Thanks SJ...that's what I had been doing, and still having symptoms, so I don't really want to speed up the taper. Getting past 5 is so difficult. Maybe 5 is my dose......

[DorsetLady PMRGCAuk volunteer in reply to Temoral]

Maybe 5 is my dose......

Very likely -for time being anyway -pity some doctors don’t realise that’s how it is sometimes.

[PMRpro Ambassador]

No, he ISN'T being reasonable. What on earth does he mean by "These reactions are not what is to be expected at a low dose and we may need to use a tapering drug if they persist"? What you have describe din your last post are absolutely typical of low dose pred when adrenal function is still very rocky. You are not 2 years in - PMR is also very likely still alive and well.

Any rheumy who is getting iffy and threatening a "steroid sparer" for a patient who has got as low as 5mg without one needs his head read, None of the so-called "steroid sparers" are guaranteed to make any difference - they do for some but for some it is methotrexate that works, others it is leflunomide and for the majority, neither work. Even Actemra doesn't work for everyone. And ALL of them have potential adverse effects that are worse than the likely effects of low dose pred,

[Temoral in reply to PMRpro]

Just what I read, and believe, but arguing with him is virtually pointless...I will taper after a week or so on 5, but using the slow method. I will not be on 4 by the time he phones again...and for all the reasons you state here, I am reluctant to introduce sparing drugs. We are really managing this GCA condition ourselves I think. Thankfully my GPS are great...but they don't appear to want to challenge him either. So we journey on, making our own decisions and trying to protect our eyesight!!

[Viveka in reply to Temoral]

You could try a private knowledgeable rheumy rather than this non patient-centred guy. It does not work out expensive because you only need initial contact and he writes a letter to GP and if they are understanding you can then get on with self management at these low levels. Also if you have a flare you have someone sensible you can talk to. Gave me great peace of mind. Rod Hughes. He likes to see people in person first time but because you are a long way into your GCA journey possibly he may forgo this.

[Temoral in reply to Viveka]

I have been thinking on these lines overnight....I live in the Midlands...but I could try a distance call perhaps....thank you

[Pr0jection in reply to Temoral]

I sympathise as I have a rheumy very similar to yours, as in not listening to my suggestions. So I decided to do alternate days 7.5mg and 6.25mg for two months, then 6.25mg every day for 2 months. So far so good. I hope to be down to 5mg by the end of the summer. I also have the same issue with regard to my GP not wishing to challenge him. Whenever I bring up the subject she goes very quiet. I'm sorry I can't offer advice but wish you well.......

[Temoral in reply to Pr0jection]

Thanks ProOjection...it is advice really....because you are also self-managing. Good luck moving down to 5mg. 👍

[paulus65]

I've been looking at this forum for about 5 years and would comment that it seems those patients who manage their own pred dose/reduction fare better than those under the close control of medics . Just saying!

[Temoral in reply to paulus65]

Hi paul65....exactly my conclusions....thanks.

[Mayadill in reply to paulus65]

And my conclusion. Don't see why I should defend doctors some of whom described here are pretty indefensible but the sun is shining, the sky is blue so here's my halfpenny worth partly in their defence.

I've been happily left alone to hack it. PMR is the only systemic condition I have. Pred is the only drug I take. Pharmaceutically I'm completely straightforward and wondering how much that might be true of others of us left be,

Someone just coined the brilliant phrase 'drug sprawl'. Some folks here are on a number of medications, the actions and interactions of which may not be fully known or at any rate fully known to a particular doctor, which I guess can't make them feel as confident as they seem. They'd probably like you off all of them but that cannot be. Ah but Pred can at least be reduced, removed from the equation....Is in some sense seen as a soft target maybe coupled with other background stuff about PMR being 'benign'?

[Temoral in reply to Mayadill]

Hi Mayadill. I only have GCA, and only take steroid and oneorazole, and my own VitD., but I take your point. My GPS are all great in that they listen, support and explain and give me time, and know that o know my own body. My Rheumy is always rushed, doesn't always listen, can dismiss my points in a I know better attitude. When I asked what symptoms I should look out for in an adrenal crisis, he said I would know if that happened, as I would collapse.....He is focused on reducing, but at his textbook style, not an individual one. As you say, we are more or less self-managing our conditions. Good luck on your journey.

[PMRpro Ambassador in reply to Temoral]

" he said I would know if that happened, as I would collapse."

Bit late by then - obviously not a friend of the concept of prevention not cure!

[Mayadill]

Collapse? Fine helpful answer there! Shutting stable door after horse has bolted.

[Gossiplady]

hi Temoral! My sympathies go with you. My attitude is I listen to my body. Even if a drug is prescribed for you , you don’t have to put it in your mouth. I was offered AA last year but when I read through the blurb with it dental problems are a no-no, so I don’t take it. Listen to the forum !

[Temoral in reply to Gossiplady]

Thank you Gossiplady. I too have refused AA, having read about it and the side effects. I had acupuncture today which usually balances things out...and I slept for an hour afterwards. He definitely listens to my body. I am much more trusting of the forum than of the rheumy advice. Thank you for your thoughts. Hopefully we can all guide each other through....

[Gossiplady in reply to Temoral]

hi Temoral! I have never been referred to a Rheumy but the more I read in the forum, I am lucky to escape. There must be some decent ones around. I too have had acupuncture and it was 100% successful. Am also a great believer in homeopathy. Keep smiling.

[Temoral in reply to Gossiplady]

Hi Gossiplady...yes, we have to each find what suits us and acupuncture has been my saviour for several years now. . I may have found a Rheumy who also believes in a holistic approach and is sensitive to individuality.... I will do a bit more research before I book an appointment...watch this space! 🙃 take care

[Gossiplady in reply to Temoral]

hi Temoral! I wish you luck with the Rheumy. Keeping fingers crossed.