Prednisone dose !

[Rajuguide]

My wife 71 GCA , started treatment 5 month back with 60 mg Prednisone and weekly actemra, she had little improvement , till 9 mg where she got flare , dr advice first to go 10 and than again to 12.5 but she is not improving now dr told to go directly 40mg for week . Any advice ! is this ok . As she will have to suffer with side effects of prednisone for more period .

[cycli]

Dear Rajugide..2 months ago you told us she went from 60mg to 15mg then a month ago from 40mg to 15mg now back up to 40. Everyone has said the taper for GCA was too fast and risky but the Actemera is a great help in tapering so I can't comment there. However, the history of yo-yoing up nd down the dosage tells its own story. all advice here is no more than 10% and reduce again ONLY when the symptoms have been stabilized. This has never been achieved as far as I can tell so why is she being rushed to reduce when her discomfort is so obvious.

[cranberryt]

It is normal to go back up for a short time with a flare. Especially with GCA because she doesn’t want to risk losing her eyesight. And unfortunately, it is impossible to tell how long she will be on prednisone. Many people take several years to get to a small dose and some stay on it for life. Going from 60 to 9 in 5 months was likely much too fast. A slower taper will often result in less time in prednisone overall versus a fast one with relapses.

[Rajuguide in reply to cranberryt]

Thanks for your advice . my wife is under senior rehumotologist treatment, we have to taper as per his advice . Cranberryt, main thing we GCA sufferers are traveling in long dark tunnel , with prednisone and actemra , without knowing when tunnel will end ,

[cycli in reply to Rajuguide]

I understand your desire not to upset the advice of your rheumatologist but it is quite clear that his program is not working as relates to your wife. You must impress on him that the taper is wrong for her and a slower one would be better, All the evidence from experienced sufferers here show that. It is your wifes' body and sight at stake here not the rheumatologists and he has no idea of what she is suffering, and neither may I respectfully say do you. It has to be physically endured to fully understand and I can promise you that it is something I would not wish on anyone.

[Sharitone]

It is very disappointing to have to increase pred, just when the side effects were beginning to reduce I'm sure everyone will be sympathising with your wife! But coming down slowly is much more effective and you will take less pred in the long run. I was on 60mg 8 months ago and have never got down as far as your wife has. I was told to go to 10mg a month ago and wish I hadn't: now 15mg doesn't seem to deal with it. Is there perhaps something that could be done to alleviate her specific side effects?

[DorsetLady PMRGCAuk volunteer]

Hopefully - but more importantly what dose has she been told to go back down to?

If it’s 10 or even 12.5mg that may be too low - and the whole sorry cycle will start again.

As we’ve said all along - too fast a taper even with Actemra- as her advocate you really need to talk seriously to doctors and impress upon them - although she wants to be as low as she can - being too low is counterproductive....

and even the best rheumies get it wrong sometimes.

[yorkieme]

In January of this year my rheumatologist gave me a schedule for reduction from 10mg to 7.5mg within 4 weeks,needless to say the flare and eventual reduction to get back to 10mg took four months.When I next discussed this with her she agreed with me that the reduction was too severe and that I should reduce when I felt ready.

I learned this lesson on this forum,you need to use the advice offered by those on here in the sure knowledge that your wife will benefit. If the doctor/rheumatologist sees you as the villain of the piece then so what ? They will at the very least know you are trying to protect her. I wish you the very best.

[PMRpro Ambassador]

You have said a few times that there has been no improvement with either pred or the Actemra - is that really so? Because if it is it must raise questions as to whether this is GCA at all. There are other things that can cause similar symptoms.

[Rajuguide in reply to PMRpro]

Thanks, i also feel ,what you are thinking , i also raised this question with dr last meeting last week , they also confused ,what it can be ? , as lot testing have done ? All related field dr consulted , Pain , throbbing ,pressure on eye and ear continue . With in this 6-7 months she has lost all charm of life physically and mentally .as she may be taking medicine which may not be cure !but helpless !I once again thanks all members

For advice and sympathy.

[Temoral in reply to Rajuguide]

Hello Rajuguide...I was 'doing so well' that the Rheumy gave me a fast reduction plan too..asking me to more or less take charge of it myself, as I was 'a capable person'...only met me twice. I was very grateful for promp diagnosis and protection of eyesight obviously, and campaign to reduce the steroid dose. BUT...much too fast and ended up back on 40 after 5 weeks. Please try to relax, acceptance is so hard...and take the reduction much more slowly as all advice on here says. To give you hope..I am now starting on 20 this week and my GP is supportive. Things may take time, but your wife can improve. Very best wishes 🙏

[christine2715]

Hello, that seems a big jump up. I would try 20mg. I am also prescribed mycophenelate which i believe acts as an aid to the actemra. I find i need both to slowly reduce, never reducing more than 10% of the current dose. The slower thw better.

[PMRpro Ambassador in reply to christine2715]

It isn't a big jump if the threat is of GCA. 40mg is the normal starting dose.

[christine2715 in reply to PMRpro]

She had started at 60mg and rapidly gone down and was now thinking how much to go back up to

[PuttyPenguin]

Wow! That's really fast! I have had both PMR & GCA for the past year (starting on 60mg) and I'm still only on 12mg. Take things a bit slower!

[Nextoneplease in reply to PuttyPenguin]

I agree. I started on 15mg in March for PMR and went up to 40mg in June for GCA. I’m currently on 12.5mg too and it’s been a struggle - I’m staying where I am for the moment 🧘‍♀️

[PuttyPenguin in reply to Nextoneplease]

Nextoneplease...I've just looked at your profile...my goodness you've been through the wars. It's bad enough having GCA & PMR but on top of everything else that you have, you have a fulltime job just looking after yourself. Wishing you well!

[DorsetLady PMRGCAuk volunteer in reply to PuttyPenguin]

As I said earlier in post p, it is fast…but Rajuguide ’s wife is on Actemra, which is probably why her Rheumy is taking this approach…., not say I agree, but that’s his rationale.

[PuttyPenguin in reply to DorsetLady]

Yep, you're probably right,

[Rajuguide in reply to DorsetLady]

I thanks everyone for suggestions, really this discussion, increase our knowledge, where we stand and what point to ask dr on next visit, naturally this awareness will also help us to guide some one at starting symptom of pmr gca , in our family and friend circle . So as treatment may started at early stage ( may not suffer due to late diagnosis as my wife 5 months)🙏🙏

[DorsetLady PMRGCAuk volunteer in reply to Rajuguide]

My late diagnosis some 10-11years ago was 18 months……!

[PMRpro Ambassador in reply to Rajuguide]

And it took 5 years for me to get a PMR diagnosis - and I have some symptoms that are typical of GCA/LVV

[cycli]

I think the real issue here is that it is not possible to assess whether the pred is working or not because of two factors. The Actemra is apparently an effective means of reducing pred use fast without flares. The problem is however, if the inflammation hasn't been suppressed first before reduction is started the patient can never experience the pain free state. I believe that this is the current state. It is possible that something else could be causing this but everything suggests that the taper is too fast. the inflammation wasn't suppressed and therefore the pain will continue until pred is increased and held at a level to show whether it can work or not.