Hi all
Thanks for all the advice and the replies - what a wonderful forum! I was struggling to get any decent information before finding this.
So, a couple of questions. Some of you have said to me about dietary factors - are there any specific foods to avoid?
Have any of you pinpointed any ‘triggers’ that cause a flare?
Sorry, I’ll be asking loads of questions!
Thanks in anticipation
Everyone is different - nothing seems to make much difference to me for example but others find alcohol, or nightshades (potatoes, peppers, tomatoes etc), or sugar, or wheat make a difference to them.
One basic is to cut simple carbs (especially sugars) which helps with the usually expected weight gain with steroids and also reduces the risk of developing steroid-induced diabetes. Plus, sugar/simple carbs are very pro-inflammatory.
I gave up gluten and simple carbs when I was first diagnosed as I was told it would stop a moon face. It actually worked but it may just have been luck. I became a nutrition nerd which I found quite fun and interesting. Some people use anti inflammatory diets and recently a lot of people have raved over the Keto diet. If they are not for you don’t worry. A good balanced diet is what you need, in fact it is what everyone needs! Avoid liquorice and nightshades, although I do eat tomatoes every so often. They say you should watch your salt intake too.
interested in your comment about avoiding licorice? Any reason? thanks
Apparently it can cause high blood pressure as well as salt and water retention. Prolonged treatment with pred can also have these effects, so it is advisable not to mix the two. That is also true for high blood pressure tablets. It is normally documented when pred is talked about.
Yeah I heard that about licorice. I love it but it’s got wheat in. It’s great for constipation if you buy the expensive stuff xxxxx
Hello, I just avoid all flours, pasta, potato, starches, rice etc and have not put on weight and my blood sugars have been normal. I increased my protein intake because of the muscle loss from Pred. Until about 4mg I kept my salt content to an absolute minimum or else i swelled up. I was already gluten and largely dairy free already. I’ve never bothered about avoiding nightshade foods but have no idea if that has made any difference. I drink at least 1500ml of water daily to avoid urinary tract infections that I was very prone to until I was below about 7mg. I take supplements to top up Vit D, calcium, magnesium and an iron free mineral and vitamin supplement. I have a daily banana for potassium.
You are so smart. Perfect diet xxxx
Everything nice! ☹️
Yeah! ☹️☹️☹️
Oh for a treacle suet pudding! I used to make them all the time for my kids. We were happy in our ignorance!!! Xxxx
We went out yesterday to visit relatives. They’d put out a lovely buffet. I had an overwhelming urge to keep eating even when I wasn’t hungry any more. I ate so much. So...back on the low carb regime today. 😩😩
I adopted a low carb, sugar, salt diet not eliminating any foods altogether. I also drink plenty of tea, water and sugar free flavoured sofa (which helps with my cravings for Coca Cola). I’m down 30 pounds, in part due to my chronic knee issues.
Glad you’re enjoying the forum....me too!!
Oh well done magnificent work darling!!!!!!
Oh I like that! sugar free sofa? I see you lying on it having fantasies of sugary treats !!! xxx
I agree with other forumites. We’ve enough to cope with so don’t deprive yourself of your food pleasures. But drastically cut down carbs, and generally portion sizes because you will not be so active.
And, don’t worry, we thrive on questions.....makes us feel important, instead of ignored sick old people.
Here’s to a Healthier 2019 🎉 Valerie
Like “makes us feel important”.😂😂😂😂😂
Sick old people??? Where? I don’t see any!!!! 🤣🤣🤣🤣🤣
The LCHF (low carb/high fat) diet has become my lifestyle choice, not only does it keep the weight under control but it lowered my blood sugar levels. Here's a link to a site: dietdoctor.com/low-carb which is full of information, recipes and nice graphics! I've been following this for a couple of years and lost a stone in weight, my tastebuds recoil from anything sugary (but a daily square of dark chocolate is a must) and really enjoy feeling that I'm doing myself a lot of good both mentally and physically. The onset of PMR can leave you feeling powerless and bewildered so anything you can do to take charge is beneficial, getting rid of stress in your life helps enormously.
I am following the low carb, high fat diet, also. I was diagnosed with Type 2 Diabetes after 7 months of high doses of Prednisone but after I got my carbs down to 20 or fewer daily, I was able to go off of Insulin. I still have a daily spike in my blood sugar about 6 hours after I take my Prednisone but it at least stays under 180 and it quickly comes back down.
You are to be congratulated for your achievement, and an encouragement to those on insulin. Well done!
Agree with piglette about a "good, balanced diet" - which I've always eaten! However, I've reduced my portion sizes because I'm not as active, so my diet could be described as 'low carb'. OH and I weigh ourselves on the 1st of every month as he had gained weight several years ago. On 1st December 2018 I was exactly the same weight as I was on 1st December 2015 when my PMR was brewing (diagnosed May 2106).
I take a one-a-day multivitamin and mineral tablet and a magnesium supplement, as well as the prescribed calcium and vitamin D. Not forgetting the obligatory square of dark chocolate every evening!
So glad you opened up this topic xxx
Hi Liskeard, I am guessing you are in Cornwall? We have a support group which meets once a month at Truro Golf Club. Bit of a way to come but people seem to find it really helpful especially when you are a”newbie”.
As to dietary triggers I haven’t found anything which seems to cause a PMR flare . However as you will have read lots of people like the low carb route.
Let me know if you’d Like more info on the group.
Hi, Mary & John Nash administer our group and can be contacted at camborne@pmrgca.org.uk, as I said we meet the 2nd Monday in the month at Truro Golf Club 2pm. However, this month's meeting is a post Christmas lunch and so would recommend the February one. Do get in touch with them and I am sure they will be delighted to help.
Reducing advice 
Steroid advice please.
Vasculitis Foundation Patient Conference-Seattle, Washington-Jany12
Questions for Rod Hughes
tapering advice, yet again!
