Advice please

[Hollyseden]

Have got down to 7 using the dsns method without too much drama. Aches in shoulders but fade as day goes on and been a bit more tired of late. Anyway my question is about tapering. I've read about the 10% taper so at this level, should I maybe just do ½mg taper? My blood results have been ok so doc said, unless I'm ill, that I don't need to see her again till I've got to 6 so should I just try the ½mg although doc had advised 1 mg steps. All advice gratefully received 😊

[SnazzyD]

Hello, another way to look at it is that even if you do 1mg per month but in 0.5mg steps, you’ll be smoothing out the steps. Ive found withdrawal much less intense. I’m on 7mg now and intend to stretch my months to 5/6 weeks or more and face the Rheumy’s wrath in May. This way, hopefully I can really tell if I’m ‘getting away with it’ especially when at this level you can have adrenal insufficiency symptoms clouding the issue as well.

Trouble is with seeing someone different each time is that I'm not able to achieve a wearied resignation on the part of one doc in the face of this mad patient’s intractable maverick tendencies. I have to deal with new zeal each time. I end up asking why being where I am without a flare is worse than doing their white knuckle reductions and risking a flare. The last doc suggested I didn’t have GCA because I hadn’t had a flare! I felt a bit like a witch undergoing trial by ducking stool.

[Hidden in reply to SnazzyD]

...so after being diagnosed and treated for GCA for however long, a doctor then questioned whether you had GCA or not because you hadn't experienced a flare???? I wouldn't see him/her again!

[SnazzyD in reply to Hidden]

Appears so, and of course because I’m so young at 55. Anyway, no chance of seeing her again I’m sure; the turnover of Registrars on rotation is too fast.

[PMRpro Ambassador in reply to SnazzyD]

Luckily...

Yes, it does seem that many doctors are convinced that all patients must have flares - despite the fact it states clearly in the medical literature that the most common reason for flares is reducing too far or too fast (in which case it almost certainly is steroid withdrawal rheumatism not a real flare) and one paper says a reduction rate of more than 1mg per month is predictive of flares!

But it never seems to occur to them that going more slowly would avoid almost all those pitfalls and that their kneejerk reaction and, often, return to the starting dose when it happens negates the entire perceived advantage of their fast reductions to get the patient to a lower "safer" dose by taking them back to those high doses.

Just look at mamici's experience.

[Hidden in reply to SnazzyD]

Some typo that one SnazzyD!! Some of these Rheumy's should be doing another job. I could think of a few alternatives but better not!!

[SnazzyD in reply to Hidden]

Typo??

[DorsetLady PMRGCAuk volunteer in reply to SnazzyD]

“Ducking” stool!

[SnazzyD in reply to DorsetLady]

Ooh! See what you mean! 😂. Will correct at once!

[DorsetLady PMRGCAuk volunteer in reply to SnazzyD]

No don’t...sometimes what you didn’t mean to say is funnier than that what you did mean!

All been there. 😏😳

[DorsetLady PMRGCAuk volunteer in reply to SnazzyD]

Dread to think what he would have thought I had then! No flares in 4&1/2 years - definitely the wicked witch of the west!

I’m sure some doctors seem to think we must have flares along the way!! Mind you, when it refers to dealing with flares as a common occurrence in the recommendations for treatment what hope is there!

[PMRpro Ambassador in reply to DorsetLady]

My point exactly...

[SheffieldJane in reply to SnazzyD]

🧙🏻‍♀️🧙🏻‍♂️ There are a lot of us then SnazzyD.

half a mg Hollyseden. Good luck.

[Hidden]

I have found I need to do dsns and seem to have dropped to 9mg now and stayed here for a month now after first unsuccessful attempt of 0.5mg for 3 weeks from 9.5 to 9mg.

I will really be thinking hard about dropping to 8. I suspect I will try 8.5 on dsns come middle of next week after surviving family weekend and long drive. In other words I am taking my context and previous successes and failures. To continue with your flare free taper you should go with what has worked and with your gut. Do you think you can manage more than 10%?

Sorry for the waffling. O think it's struck a chord with me about how I will drop to 8mg which is the number I had terrible flare after 5-6months after dx. Back up to 15mg then. It has taken me 11months to drop to 9mg with a few wibble wobbles.

[Hollyseden in reply to Hidden]

Wishing you the best of luck for your next taper. Thanks for reply

[Mary63]

I followed dr’s advice st beginning...a month at each dose. 20. 12.5. 10. 9. Too fast for me, though my symptoms of being too low at that stage were not pain ( I am one of the lucky ones with 100% pain relief), but severe night sweats and sleeplessness.

Following PMRpro’s advice I went up to 12.5....not enough....14.... not enough...then 15. Started again last January a year after first time around.

This time round I followed advice on this forum of never reducing by more than 10% of dose so....15. 13.5 12. 11. 10. 9.5. 9. 8.5 8 all for a month or more if something going on (torn cartilage x 2 , operations to repair x 2, Christmas.) just had second op on Tuesday this week, and had, for the previous five days not been sleeping and night sweats etc, so have decided to stop my DSNS descent to 7.5. Especially as fatigue has kicked in a bit more than usual despite judicious use of spoons (Adrenals?, bad nights? Operation? It’s difficult to judge.)

So I’m going to stay on 8mg for a while and then start DSNS stop reduction to 7.5 it’s depressing changing my original plan in my diary AGAIN, but I am at last listening to the wisdom that is ‘it’s not a relentless march to zero!’

In some ways I am lucky in that my GP takes no notice of what I’m up to, issues repeats for whatever dose I’m on, hasn’t asked to see me for a year now. Worrying really, as I have had no blood tests since the beginning (January 2016) I am managing myself through the advice on this forum.

We are all living different lives and have varied challenges. And the management of our PMR/GCA varies because of this

So I totally agree with Poopadoop above who says everything has to be taken in context.

And Hollyseden in answer to your original question....yes, try .5 mg drops. You know it makes sense!

Long post....apologies

[PMR2011 in reply to Mary63]

Sounds like it’s been a rough road Mary 63. Is it possible the mighty sweats and sleep are Pred withdrawal or were those your original symptoms?

[Hollyseden in reply to Mary63]

Ooft you have had a bad time of it recently and yes your doctor does sound a bit worrying, not to have asked to see you for a year! Thank goodness for the advice you can get on here.

[Charlie1boy]

Hi,

In my experience, I wouldn't think twice about coming down in half mgs. It is what I have done, and I found that even a half mg makes a tremendous difference.

One thing you can't do is to "hurry up" PMR. It will go at its own pace, so trying to force the issue by going in 1mg drops (if your body doesn't like that) doesn't make sense.

Good luck.

Paddy

[PMRpro Ambassador]

With the DSNS it doesn't make as much difference, that is smoothing the steps itself, that's why it was developed - and as long as 1mg works for you, why not. However, you must also be getting closer to the Holy Grail dose: the lowest dose that manages the symptoms so doing 1/2mg at a time makes that more exact. And in the final analysis it is your body, your pain/fatigue and your problem to live with. Not the doctor's.

[Hollyseden in reply to PMRpro]

I think I'll just continue with the dsns 1mg for now as it has been successful so far, but I'm also thinking I may pause for a few days because I'm off on a wee reunion weekend (which involves short flights and probably busier days than usual) with college friends from 40+ years ago. If that doesn't make me feel my age, nothing will. Haha. Thanks for wise words again.

[PMRpro Ambassador in reply to Hollyseden]

Never mind - they'll have aged too!!!!! But all-night dorm sessions don't work too well now...

[Hollyseden in reply to PMRpro]

😆Very true. Last year our meet up was in Montpelier, surrounded by vineyards and 3 of them were not even drinking wine. Very unlike college days

[PMRpro Ambassador in reply to Hollyseden]

In Montpellier and not drinking wine???????? What a strange concept...

[Mary63]

In reply to PMR2011, the insomnia, sweats and fatigue were def part of my original symptoms , along with severe pain before pred.

[PMRpro Ambassador in reply to Mary63]

I find poor sleeping, probably because of the waves of heat more than sweats as such, have always been the first sign I've gone slightly too low on the dose. I do have mild sweats - just around the neck and decolletage, nowhere else. And the same area is the only place I catch the sun and go red. Everywhere else goes brown!

I saw something somewhere that this is an area served by nerves from a particular area of the brain (I think) - something I found rather intriguing since I know a lot of people with PMR/GCA have a similar head and neck sweating problem.