Accidentally deleted post.

[Aleish]

There was s post here last week about a dose of 5 mgs of Prednisone that is done for around 9 months. I t was a protocol from a doctor that some people are following in the end of treatment. Does anyone know what I'm talking about?

[Celtic PMRGCAuk volunteer]

Hello Aleish, do your mean Dr Rod Hughes, Consultant Rheumatologist at St Peter's Hospital, Chertsey. He recommends a patient staying on the 5mg Pred dose for around 6 months or more in cases where they have problems getting any lower.

I was a patient of Dr Hughes (a highly respected rheumatologist and, in my view one of the best around, having been involved in research into both PMR and GCA). I experienced flaring inflammation and increasing pain on reaching 5mg (a common sticking point for many) which became severe by the time I reached the 3mg dose. After advising me to increase the dose to 10mg to get control of the flare, he reduced me down to 7.5 after 2 weeks, followed by alternate days of 7.5 and 5 for a further 2 weeks, before returning to 5mgs for, initially, 10 weeks, at which time my ESR and CRP had both returned to normal, with my comfort levels also returning to near normal. He then recommended that I stayed at 5mg for another 4 months (nearly 7 months in all) but I baulked at this and we agreed to meet half way with me staying on 5mg for another 3 months! With hindsight, this made much sense as, apart from freeing me of the pain, it obviously allowed the adrenal glands to get up to speed in manufacturing their natural steroid (cortisol) supply again, reducing the risk of more flares, plus at this low dose it is very unlikely for patients to encounter side effects. I have been off treatment and in remission from both PMR and GCA for over 4 years now.

I do hope this is what you were looking for. If not, do come back and I, or someone else, will help further.

[Aleish in reply to Celtic]

This is it. I am just beginning my treatment but I want to make sure I have this when I may need it. Thanks

[Celtic PMRGCAuk volunteer in reply to Aleish]

Good luck as you embark on this 'journey', Aleish. You will always find someone around on here to help if obstacles get in the way!

[Leeleep in reply to Celtic]

Celtic,

Do you recall what your dosing schedule was to get completely off of prednisone when you did Dr Hughs mentioned here?

Aleish

[Celtic PMRGCAuk volunteer in reply to Leeleep]

Hello Aleish

After the many months at 5mg referred to in my earlier reply, although I was advised that I could now revert to reducing by 1mg decrements again, I decided that as that hadn’t worked the first time around I wouldn’t take the chance, preferring to be guided by the Swedish PMR sufferer who pioneered the slowly slowly regime of tapering to each new dose below 5mgs by just trying the new dose on 2 days of the week at first then increasing that to 3 days the next week etc. I decided to do it even more slowly by just decreasing in half mg decrements and only on one day of the first week2 days of the second week, 3 of the third etc. In other words:

6 days at 5mg and 1 day at 4.5

5 days at 5mg and 2 days at 4.5

4 days at 5mg and 3 days at 4.5

3 days at 5mg and 4 days at 4.5

2 days at 5mg and 5 days at 4.5

1 day at 5mg and 6 days at 4.5

I would then remain at 4.5 for a week or so to see how I felt, before repeating the same routine towards 4mg. Slower than a snail’s pace but it worked all the way to zero and, as we always say, it isn’t slow if it works, plus we have the reassurance that there are unlikely to be any side effects from these low doses. At the same time, I relaxed in the knowledge that my adrenal glands were being given ample time to get up to speed with manufacturing their natural supply of cortisol (natural steroid) after being suppressed by Pred. Of course, there will be people who can achieve success more quickly. The beauty of the slow tapering is that anyone can stop and mark time at any given dose if they suddenly notice symptoms emerging.

Sorry for a rather lengthy reply Aleish but hopefully I have made sense!😏

[Leeleep in reply to Celtic]

Celtic, that pace would take over two years. I’m on Actemra and maybe I can go a little faster. I can’t stand being in prednisone. I’m thinking I could gauge it more on cortisol coming back to normal.😩

[PMRpro Ambassador in reply to Leeleep]

Below 8mg it isn't the PMR/GCA that is in charge on its own - it is also adrenal function. And for anyone who has been on pred for long that means a slow reduction. Some slower than others.

[Leeleep in reply to Celtic]

I really appreciate this answer snd the time it must have taken you to get it in here. I’m a bit shocked at the slowness of it. Thank you so much.

[Celtic PMRGCAuk volunteer in reply to Leeleep]

You're welcome, Aleish. Yes, it did take a long time but I had a very difficult time over a year without diagnosis until the symptoms of GCA joined in the 'fun'. I was travelling back and fore to hospital rheumy appointments by ambulance and wheelchair and spent 4 months in bed. Once diagnosed, I started at the high dose of 40mgs to protect my eyesight and had little problem reducing until I got to 5mg where the pain and stiffness were so severe that I thought I was facing going back to square one. Hence, when my consultant got everything under control having increased me from 5mg up to 10mg, once back at 5mg successfully I didn't intend rocking the boat! Also, when you consider that there are some people for whom PMR never goes into remission (I meet people who still have it after 13, 15 years), it puts my final slow tapering approach into perspective. As I said in my earlier reply, it isn't slow if it works! We don't have the choice of Tocilizumab (Actemra) here in the UK yet - we live in hopes! However, hopefully Actemra will prove more helpful for you, and I wish you well.

[PMRpro Ambassador in reply to Celtic]

I doubt that will ever really be an option for PMR - except possibly refractory PMR and then the adrenal function problem will pay a major role.

[Celtic PMRGCAuk volunteer in reply to PMRpro]

As I said, “ We live in hope”! No money in the kitty - well not for us oldies!! Even if it did become available, not sure I fancy it, after all Pred did work for me.....eventually! Prefer to stick with the devil I know! And luckily I was blessed in being able to get down from the very high doses with their potentially serious side effects quite quickly. How do you feel about Tocilizumab, Eileen?

[PMRpro Ambassador in reply to Celtic]

If I were offered it as part of a trial I would accept the chance. You are monitored so well in trials...

[Celtic PMRGCAuk volunteer in reply to PMRpro]

Well, we will live in hope as well that you may have that opportunity some time in the future - one of the best possible candidates for such a trial.

[GCA1947]

Aleish,

Just a thought, in Hotmail, when I delete posts they go into a deleted folder but are retrievable if you open the deleted folder yourself. They are only deleted when you physically delete them a second time. If you've already tried this then sorry. I regularly delete items to make space in my inbox but know I can retrieve if needed.

Good luck on your journey we are all routing for you

Colin

[PMRpro Ambassador]

I was going to say no - then I realised what you mean! And Celtic has already answered.