End in sight?

[Marijo1951]

I've just had a video appointment with my rheumatologist. I'd already reduced pred to 0.5 mg per day. She advised me to see out the week on that dose and then stop taking pred altogether. She also said I should continue taking 10 mg per week of Methotrexate until my next appointment in 3 months time, when we'll discuss finishing with it completely. In the meantime I should have a blood test. My last one was fine.

So I really hope that I'll soon say goodbye to these wretched ailments, though whether it will be goodbye for ever is a different question... I certainly no longer feel constantly ill, but nevertheless I am painfully aware that I am 6 years older then when I first became ill, because I have noticeably less strength and energy than before. I'm very glad to have lost the side effects of taking a high dose of pred - the terrible brain fog and the extreme fatigue combined with insomnia. At least if I ever have to start again on 60 mg per day, I'll be aware of the potential effects!

[PMRpro Ambassador]

Hope it works OK - I would still taper that last 1/2mg though, Don't like sudden changes!!!!

All the best!

[Marijo1951 in reply to PMRpro]

Do you mean continue for longer on 0.5 mg or spend a while on 0.25 mg? Not sure my pill cutter could cope - it's already a rare occurrence for me to get the tablet exactly in half!

[PMRpro Ambassador in reply to Marijo1951]

No - I'd use one of the slowed tapers, just drop the 1/2mg one day at a time to start. Doesn't really matter if the cuts aren't consistent - it is less than 1 and more than zero!

[Marijo1951 in reply to PMRpro]

Okay, I'll try that for a while. Thanks for the advice.

[DorsetLady PMRGCAuk volunteer]

My last slow taper was 0.5mg to zero ... kinder on body than just stopping - even at such a low dose.

[Marijo1951 in reply to DorsetLady]

Yes, I've decided to do that. My rheumatologist was obviously aware that there might be problems, as she told me to go back to 0.5 or even 1 mg if I had any symptoms. Fortunately I've 2 full packets of 1 mg tablets.

[piglette]

Like the others I don’t think I would stop cold, I would try zero one day then go back to 0.5mg say for 5 days then zero then 0.5mg for four days etc. and do it slowly rather than just stop immediately. Good luck.

[Marijo1951 in reply to piglette]

I've got a (roughly!) half tablet in my pill cutter which I'll take tomorrow and have my first pred-free day on Wednesday. Thanks for your help.

[piglette in reply to Marijo1951]

Best of luck. Hope it is time to bring out the champagne.

[Heron82]

Good luck I hope it all goes well for you. Everything you have said in your post resonates with me. I’ve a long way to go as still on 9.5 mg and have to reduce very slowly due to symptoms returning, but your post gives me hope. Thank you.

[Marijo1951 in reply to Heron82]

Thank you. I'm hopeful, but realistic because I've been reading this wonderful forum for 6 years, so I know I may well experience a setback. Good luck to you too.

[Bedwell]

wonderful to hear that someone is nearly at the end of pred! It is possible.?!?!

[Marijo1951 in reply to Bedwell]

I believe it can happen and hope it will for both you and me!

[DorsetLady PMRGCAuk volunteer in reply to Bedwell]

Of course its possible, its just that not many stick around to tell us.... apart from some of course 😏

[PMRpro Ambassador in reply to Bedwell]

Of course it is possible - there are a few here but most are off living life. I am on a small group forum that is the leftovers of a former PMRGCA charity group and only a couple of us are still on pred and most who have left were off pred before they went.

[pugrescue in reply to PMRpro]

Lots of different experiences. I was dx with GCA in March/19. By Oct 2020 I was down to 1 mg. Due to the lack of medical appts due to Covid plus moving, I was pretty much on my own...other than the wonderful advice from this forum. Everytime over a month or so I tried to reduce to 1/2 I felt just awful. Got so annoyed that thought I would try 1mg every other day, first day w/o pred I felt better. So just stopped taking it in Dec 2020, and never took anymore. I have not been active here on the forum, but maybe I should be more encouraging, as I have lived now a normal life, active playing golf etc ever since.

[Marijo1951 in reply to pugrescue]

I think a lot of self-diagnosis goes on, especially with the NHS's tendency to postpone appointments for months and covid certainly didn't help. I'm glad it worked for you.

[Nominem]

I am taking 1mg prednisone per day over next couple of months then 1mg every other day for a month then stop . I have a rheumatologist appt in October. .so I hope I am coming to an end but am aware of the possibilities of flares . I also started at 60mg in Dec21. Good luck

[Marijo1951 in reply to Nominem]

Well done. It's taken me since July 2017 to reach this stage. By the way, I find it better to use a pill cutter and take half a 1 mg tablet every day, rather than alternating - partly because I get confused about which day it is, but mostly because I feel it's more consistent to take a tiny portion every day. As PMRPro says, it doesn't matter if the halves aren't exactly equal.

[Nominem in reply to Marijo1951]

Thank you very much for your help I will keep this in mind

[DorsetLady PMRGCAuk volunteer in reply to Nominem]

then 1mg every other day for a month then stop..

1/2mg a day rather than what is proposed might be better [certainly on body] provided you can cut your 1mg tablets... many of us don't think the alternate days is a good idea, especially when zero is one of the days...

[Nominem in reply to DorsetLady]

Thank you very much for your help

[Bedwell]

yes that sounds good to me

[Blossom751]

Well done Marijo1951 ! I am approaching the 1 year anniversary of being diagnosed and there certainly are times when I wonder if there will be an end. Your post is inspiring, thank you for sharing!

[Marijo1951 in reply to Blossom751]

Thank you. All the best for the future.

[PMRfacebook]

Good luck and just to say to all those who think they will never feel better and get off pred - I had PMR and on steroids for just over 3 years and it took me a further year to build up my muscle strength. I will never forget how much pain and stiffness PMR caused and am thankful every day that, for not at least, I'm in remission if this dreadful disease but please have faith everyone that you too will get better and thank you all for your support when I needed it most. Hopefully I can continue to support those still struggling