Good information on tapering and steroids

[Pipistrelle]

I was looking for some information on when the adrenal glands begin to kick in again when reducing steroids and I came across this article. It has really useful detail on taking steroids generally, and what to expect with reductions, and I wish I had found it months and months ago when I first started taking steroids for PMR. So many questions I had over the past 18 months are summarised in an easy to understand way here.

It gives some excellent information on what to eat/not eat when on steroids and good supplementation and foods for when you are at the point of lower dose steroids and hoping to nudge the adrenals awake again. Also it pinpoints so many of the symptoms that come up frequently in questions here -- eg YES, it is normal to start getting sweats and so forth as you drop down below 7.5mg or so...! I'd thought maybe I was just imaging things at times but it seems many changes are due to steroids as the dose drops.

Anyway I hope others find this helpful:

cssassociation.org/Help-for...

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Hi Pips,

I have just read the information from the site you have provided and now I think I understand why the drops between 10mg and 6.5mg have been so hard to cope with. I have gone up to 10mg again after months of struggling between the two doses. Thankyou so much for providing me with this information. I will try to print it off and give it to my GP on my next visit.

I hope there will be others who will benefit from these explanations and advice.

Pats.

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Very interesting read, thank you for sharing.

[soojay]

Good morning peeps, and especially Pipistrelle, Brilliant,exactly what I needed !Keep battling on, all .Thank you .Have printed it off for my lovely Surgery.They are so busy and patient.Hugs.

[janimaths in reply to soojay]

Thanks for the link to the article. It confirms people's blogs on here about their own experiences and gives us more of the 'why' information which I find I need. Sorting out the diet is paramount for me. Without any doubt, if I eat badly or too much I suffer renewed pain. I've been sceptical about the stress angle, but 2 weeks ago, the day after I had to have my lovely little dog put to sleep, I woke with enormous physical pain, and the day after that it had largely gone. I'm shortly to begin 8 mg pred for a month and currently doing well, but thanks to these articles and blogs, now mentally prepared for the necessity of negotiating the Bay of Biscay of the lower doses by ensuring extremely minimal decreases in pred. PMR sure teaches thats its the Boss and we have to bow the knee to it and respect it. Just have to take smilingly what it throws at us, then press on and hope we all get rid of it. Janimaths.

[Polywotsit PMRGCAuk team member]

Hi Pipistrelle, thanks so much for posting this. It's a really good summary of the link between steroids and adrenal activity, the best we've come across that's written for patients to read. We'll get in touch with the author, and we'll use it in our patient info,. I'm going to send it to our medical advisory panel and ask for their comments. We have been putting bits of info together and coming to the same conclusions, but interesting that this author got there 6 years ago! And how interesting that CSS is a form of fasciitis, like GCA! Great work, thanks again.

[Celtic PMRGCAuk volunteer]

Pipistrelle

That's a very concise article - thank you.

I followed the advice "no coffee, alcohol, sugar" during my steroid journey in the belief that these products aggravated the adrenal glands which were already compromised by the steroids.

Additionally, I found several intakes of oily fish a week to be of particular benefit among other so-called anti-inflammatory foods. If I veered off my usual food intake, I would notice a difference - for instance after each Christmas I would suffer increasing pain and stiffness - the only alterations in my diet over the festive period had been plenty of sugar (chocs, mince pies, Christmas cakepudding) and plenty of the traditional Christmas ham, the latter being processed and therefore not helpful where inflammation is concerned.

Regarding the paragraph in the article:

"If your adrenal glands are not functioning properly there won't be enough cortisol in the blood for regulating your body functions, and you are likely to notice symptoms such as fatigue, nausea, vomiting, hypo-tension, dizziness, shortness of breath, muscle and joint pain."

Is any research being done in this area by PMR researchers (Kate)? I have often wondered whether those of us who succumb to inflammatory diseases such as PMR/GCA is as a direct consequence of deficient adrenal glands, either temporarily or permanent? The symptoms mentioned in the above paragraph mimic mine at diagnosis of PMR and GCA.

[Pipistrelle]

I'm glad it was of help to so many. It was a happy combination of search terms this time around I guess, when I tried Google -- funny how sometimes you get the same things you've read a million times but this was the first time I'd gotten this, and as I read this I thought -- wow, this really pulls together a lot of what so many of us gradually learn or suspect or want to know. Kate I think it would be an excellent idea to have it run past medical advisors too.

I think stress does play a role in PMR/GCA for many people. I would have had the mix of genetic background and a virus that often are seen as predispositions for PMR. But I was also under a lot of stress in the year before, trying to do to much, and had a terminally ill parent. I wonder has any research looked at how the adrenals are functioning at the time of diagnosis before we go on to steroids?

On diet -- yes I do think it is important in many ways and have adjusted mine too. I am a real fan of omega 3s and also a supplement called Zyflamend which has had a number of clinical research done around it and it does seem to help with inflammatory conditions. However it is worth noting that high doses of fish oils can actually produce dizziness and nausea in some people (ie ME for one!). I woke up with the floor spinning a few times (scary) and couldn't pinpoint anything I had done differently except go way up to 1000mg fish oils three times a day (a rheurmatologist recommended a friend with a form of arthritis try this). I searched for information and sure enough this is a rare side effect in some people. So now I take fish oils (1000mg) but also Linwood linseed for omega 3s (great roughage so double benefit).

[kezzybabes]

Would love to read this but link does not work. Anyone know what correct link is? I know it is 4 years old.... :o(