There is so much cumulative experience, knowledge and wisdom here. I keep thinking we should do our own surveys, albeit informal, to answer questions that are important to us as patients. I know that that is probably too grandiose, but here are a few questions I'm curious about.
1. I've been reading this forum and one other for about six months now. I think I've noticed that men seem to have a smoother course of recovery than women. Is there any research on this. Do we know the reason for the difference? Does it apply to other pred treated autoimmune diseases as well as PMR/GCA? Are there any PMR?GCA men on this forum who would be willing to share your secrets? (I know there are many women too who seem reduce Pred without flairs and get to the lowest levels without yoyoing---would love to hear your secrets too.)
2. I have found that eliminating most grains and almost all sugar made a big difference in my ability to lose rather than gain weight on Pred. Also when I lapse, I seem to have more pain as well as gaining weight. I know from reading here that this is not unique to me. Is there any research on this? Has anyone been told to try this diet by their physician when they were put on Pred or did learn about it here or elsewhere? Have other people tried it with no success or with negative outcomes?
Just wondering.....
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Hindags
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Surveys have been done via the forums - and a recent one on ears and hearing in GCA has resulted in a decision to do further investigation.
The men/women thing is common in various autoimmune disorders - but there is nothing to suggest WHY. It is suggested it could be those darn hormones.
The low carb approach was probably something I started - I'd done a lot of reading and knowing the physiology of weight gain and pred it suggested to me that since part of the problem has to be the extra spikes of glucose released by the liver and the resulting insulin production, cutting carbs was a logical approach to weight control. It works well elsewhere - and cutting carbs also helps reduce the diabetic aspect. Before the discovery of insulin, a carb-free diet was the only option for managing "the sugar disease" - no carbs, or you died. I tried it - and it worked. Others tried it - it worked. Sugar is a proinflammatory substance - so cutting it in inflammatory conditions makes sense.
Dietary studies are complicated - either you set up something very stringent (expensive) or you rely on self-reporting - notoriously unreliable. But I have discussed it with Prof Sarah Mackie and she is intrigued by the dietary aspect of PMR/pred and management.
Thank you PemPro: You always have such depth of knowledge and I do so appreciate your willingness to share.
I started the low carb thing because my acupuncturist told me to do it. Actually she was focused on cutting out grains and sugar. Cooked veggies were recommended. She also also said not to worry about fat, but since I'm not on a statin, I am being cautious there too. Cheese is the hardest thing for me to give up.
As I've mentioned elsewhere, the cravings when I lapse on the carbs or sugars....just amazing. And I never really noticed before.
Yes men do seem to be able to cope better with PMR/GCA and Pred than most ladies. I always say it's because they're less complex than us - but maybe that's a bit flippant! Although there is some substance to that thinking, I think their hormones/bodies are maybe less susceptible to change than ours. Sure someone will shoot that theory down! Can't recall seeing any research regarding male/female reactions, but if there has been, then either PMRpro or HeronNS will have seen it - that's for sure.
I didn't go on any fancy diet, in fact first year of Pred was caring for hubby, so diet wasn't at all good - snatched meals here and there, and something quick (and probably non too healthy) when he actually wanted to eat. He was diabetic for years so we never went for a lot of carbs, but when he was diagnosed with terminal cancer I just gave him what he fancied, and when.
I did cut out carbs quite significantly after that, and didn't have much of an appetite after he died anyway, so apart from the hamster look, I didn't put on much weight with Pred, I think most of what I put on was pre-diagnosis when I didn't have energy or mobility to do anything athletic!
I never had any flares during my 4&half years on Pred. I did have increased blood markers at one point, and my Pred was increased by GP, but I know in hindsight that was due to stress worrying about hubby. The GP panicked a bit at the readings, but she had misdiagnosed me for 18 months and I ended up losing sight in right eye - so that's understandable.
I reduced on a monthly basis, after blood test okay and no symptoms, in 5mg steps originally (apart from initial 80 down to 60 - 2 weeks) until I reached 25mg, then 2.5mg steps to 15mg, then by 1mg to 7mg. From then I used a slow plan taking about 5 weeks, and 0.5mg at a time. Halting occasionally if on holiday or such like.
From 1st symptoms to last Pred six years - long time, but I knew it would be, and my main concern was preserving the sight in my good eye. Initially diagnosed by ophthalmologist- tapering plan initially agreed with that dept, my GP and me (from BSR guidelines), only saw Rheumy once - waste of time! The original plan did slip a bit, but I think even the "recommended" ones by eminent specialists are a tad optimistic!
It can be done, but I think we as patients have to listen to our own bodies, and have a good dialogue with the medical guys (that may be where the sticking point is) - but there are some good ones out there!
LOL I'm replying to myself to ask another idle or not so idle question:
I found the cytokine dumping in the wee hours of the morning to be uncomfortable and very disruptive of my sleep. I started splitting my dose of Immediate Release Pred, taking some when I awoke to use the bathroom in the middle of the night and the rest with breakfast in the morning. It helped a lot, but regularly forcing myself to 'wake up' in the middle night and to eat smtg to coat my stomach was far from ideal. Thanks to my cooperative Rheumy I got an RX for Rayos, (Lodotra in Europe) delayed release Pred. and it has worked very well for me. I take it as prescribed, at ten PM, with a snack. I awaken without stiffness or pain and if nature allows, I can sleep through the night uninterrupted. Since I still work three days a week, it is really a better solution for me.
QUESTION 3: Have others found there to be a difference in how they feel when taking Pred in the morning vs having it onboard in the early morning hours before the cytokine dumping and inflammatory build up? Did it make any difference to the tapering process, or the dose needed to control symptoms? Did the time of dosing make a difference to how long the Pred was effective?
You might be better asking this as a new thread as some people may not see it if they didn't click on follow at the beginning.
I don't think Lodotra helps my tapering particularly - although I felt better right from the start and I am probably managing on a lower dose. But PMR varies so much over time anyway and that makes it difficult to know.
If you go this website pmr-gca-northeast.org.uk and look for the link to the International Survey and the one to the Marijke Foundation you will find loads of info and what it more you can add to the information.
Also put 'I suddenly felt aged' into your searchc engine and read about ongoing research being done by Dr Helen Twohig. The results of the first tranche are very interesting.
You could also join one of the support groups and contribute...........
Roadshows are being carried out in the country and have been advertised on this forum and that is down to hard work by Kate a volunteer for about 10 years, just like me.
PMRpro also contributes to articles in the newsletters you will find on that website. Best mate of mine.
Like Dorset Lady, I had GCA for 5 years then remission. I was diagnosed quickly so I was lucky I kept my eyesight. The hospital dietician (only they are trained and certified) told me to not to change too much, just use a smaller plate and use pure dairy products - which I already did) - Cheese was my problem also, but she said get a matchbox and cut your cheese into that size portion..........a couple a day will not hurt. I did and it worked. I still use a smaller plate, it is amazing what your eyes see..........
I am not going to write anymore, most of it is on the website.
Thank you so much for the links. I live in the US so feel more isolated. I do know of a few PMR/GCA patients here in California, but we are pretty scattered.
If you send me a PM with your email address and name, I can forward the details on to a small group, which we helped to set up in the USA. They run a closed forum.
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