Sugars

[rick518]

Has anyone experienced a measurable reduction in their PMR stiffness and fatigue by reducing sugar and carbohydrate intake?

[Rose54]

Hi

Carbohydrates do have a effect on me as too many make me feel bloated sluggish and very fatigued.

I do try to avoid sugar due to family history of Diabetes never have it in hot drinks go for no added sugar as much as possible .

But I do have a sweet tooth limit myself to sweets once a week when I go to cinema .

Doing all of this I have managed to lose some weight but I dont think it has made a different to the PMR

[Marijo1951]

Since starting pred my PMR pain and stiffness have largely disappeared. This is still the case although I have reduced from the original 60 mg per day to my current 10 mg (I have GCA too, hence the high starting dose). For me, cutting the sugars and white carbs has been beneficial with regard to the weight gain I had as a side effect of taking pred. I have lost most of the 20 lb or so that I gained very quickly at first.

[nickm001]

I have not seen any impact on pain or stiffness. For a while I was watching what I consumed, but lately I am not limiting my sweets intake at all. Also due to very active life, there was no significant impact on weight either.

[PMRpro Ambassador]

Not on that alone no, pred does that, but I have few of the complaints many people mention and I'm pretty sure the exclusion of almost all processed carbs at all times and almost all other carbs has helped (I rarely eat veggies grown below ground, don't say no to other things but they are very rare treats).

[Constance13 in reply to PMRpro]

I don’t know how you cope! I’ve never been able to stick to a diet, except when I had gallbladder difficulties - the pain saw to it that I kept to a diet!!

I love pies of all descriptions. I love “posh mash”, crumpets, dripping........the list goes on.

[PMRpro Ambassador in reply to Constance13]

I love good food - but pies and stuff I don't have a hankering for at all. Fish, good meat, good desserts but they must be good before I can be bothered. And I don't need big portions either - which helps!!!

[PMRpro Ambassador in reply to Constance13]

I love really good bread. We are in Malta at present and Maltese bread is wonderful. At least, I think so. It is obviously sourdough and has a fantastic hard and chewy crust - which OH hates. So he cuts the crusts off his sandwich - and I get the best bit without eating so much.. With lots of salted Kerrygold butter as well

[Lafontainepam1 in reply to PMRpro]

You would like me, here in the states we have a Bread company called Panera, they make the best sough dough bread, which I have every morning with butter, and raspberry jam😎

[piglette in reply to Lafontainepam1]

I make my own sourdough, got a starter from a friend.

[xdbx in reply to PMRpro]

I expect you know that Kerrygold butter is from grass-fed cows which makes it especially good for us lot! 😋

[PMRpro Ambassador in reply to xdbx]

Yes - all our local butter and cheese is from grass-fed cows too, living halfway up mountains, but it just isn't Kerrygold... There is something about salty butter - sometimes it has to be President when Kerrygold is out of reach (nearest available is probably Innsbruck).

[nuigini in reply to PMRpro]

That sounds so yummy!! I'm only two months in to being gluten free after the celiac diagnosis and I soooo miss a nice sourdough bread with creamy salty butter. What makes it really tough is that there are two really good European bread makers near us in Panama. Fortunately, I've found a Gluten Free bakery as well and can get GF bread. It's nothing like the real thing though and it's best toasted. At least my bread consumption is down.

[PMRpro Ambassador in reply to nuigini]

You don't have the choice of course but it is nice now and again to have a tiny bit of bread as there are some I can eat that aren't wheat. Just trying to remember where we were recently and they baked their own GF bread, in the shape of a tiny loaf. I had told them I was fine, not to bother - but it was really good, warm from the oven and lovely butter. When I was in hospital it is on my notes - and they send the GF rolls still in the plastic wrapping, never baked! GF bread is either very good or very awful

[Rimmy]

I agree with the previous comments - that carb reduction won't necessarily help with fatigue and stiffness (ie 'inflammation') although eating tons of sugary stuff can spike your blood sugar and set you up to 'crash' quite fast - so not ideal if you are already feeling tired. It is interesting though that before my diagnosis I think I was eating more sugar because I just felt so fatigued and was unconsciously looking for a 'boost'. I feel fortunate then that I currently have no signs of diabetes or raised blood sugar despite having a bit of a sweet tooth to start with and being on Pred - sometimes at high doses for nearly 2 years. The other thing is lowering carbs does help with weight loss and often as a consequence can create a feeling of having more energy - although the first few days of any such restrictions can I found be a wee bit hard.

Best wishes

[kulina]

I've reduced my sugar and carbohydrates and I do feel better! I feel lighter, not as sluggish and the stiffness seems to be reduced also. In the last month the pain seems to have reduced too. Is it the Pred or the low sugar/carb diet? I don't know. All I can tell that overall I feel much better. I will treat myself to a sweet or fresh bread once in a while but not consume them on a regular basis.

[Bronni in reply to kulina]

Hi kulina, I also live in MA. (MV). Do you see drs in Boston? I’ve seen a couple at Ma Gen and Brigham and Women’s, but they didn’t contribute much! I don’t do sugar, but would have a hard time giving up the carbs 😬

[kulina in reply to Bronni]

Hi Bronni, yes, pasta was tough! I live in Warren, MA and my doctors (Dr. Robert Kalish) are at Tufts Medical in Boston, some 60 miles away. It's a teaching school and he supervises the med students. My med student/doctor just graduated in September and I'm having tough time getting used to the new med student but I feel comfortable with Dr. Kalish. The local rheumy diagnosed me with RA and I knew, somehow, that I didn't have RA. The docs in Boston confirmed PMR. Where in Mass are you?

[Bronni in reply to kulina]

Oh my gosh. The very same thing happened to me! He wanted to put me on mtx and I knew in my gut that he was wrong. I never went back! Now I just see my gp twice a year and take care of myself. It’s been 4 yrs, but I’m at 2 mg pred and feeling good / normal 🙂

[Bronni in reply to kulina]

I’m on the vineyard, btw.

[kulina in reply to Bronni]

Yes, the first doctor wanted me go on mtx for the rest of my life. I felt like he was picking a disease, I was too young for PMR (53) but had RA even though the blood markers were negative. I had never been on any kind of meds so of course I bulked. I've had PMR for 2 yrs and 10 months and on Pred for 2 years and 7 months. I'm on 5 mg and feel ok. Much, much much better than last year but not back to normal. Sounds like you are doing well with the gp. The Vineyard is so beautiful, nice place to live! Garine

[PMRpro Ambassador in reply to kulina]

53 is NOT too young - over 50 is the guideline...

[kulina in reply to PMRpro]

Exactly PMRpro! I know that but apparently that doctor didn't. Go figure!

[PMRpro Ambassador in reply to kulina]

Obviously our job to educate. At least he didn't suggest you had to be in your 70s. Or did he?

[kulina in reply to PMRpro]

Oh yes he did! He said to have PMR you have to be in your 70s. That's why he's not my doctor anymore.

[PMRpro Ambassador in reply to kulina]

You are a very sensible woman Has he been informed and encouraged to revise his belief system??????

[kulina in reply to PMRpro]

I thought of that but didn't want to pay the co-pay just to tell him he needs to go back to med school. So, in other words, no I didn't go back. He misdiagnosed other people too and I did contact them.

[PMRpro Ambassador in reply to kulina]

You could have written for the cost of a stamp.

Or demonstrated outside the door...

[kulina in reply to PMRpro]

Ha, ha, too funny! Hmmm... I didn't think of either one I will definitely write now that I'm not as angry with him as I was. Great idea, thank you PMRpro. As for the second opinion, I don't have the time for him, not even to demonstrate outside his door. He's not worth my time.

[ptm2018]

Yes plus I am totally gluten free.

[Hidden]

Since going 100% keto i have been able to stop paracetamol, tramadol and find it very easy to reduce my steroids. Feeling much more ‘with it’, not falling asleep during the day and minimal pain. Next on the list to hopefully go are lyrica and Amitriptyline. But i want to go to zero pred first!

Never expected such improvements and as a bonus my weight is finally going down too.

All good😊

[Jackoh]

I don’t think cutting out sugar and really limiting carbs have made any difference to stiffness and pain. The only difference I can see is that it helps me to maintain a reasonable weight and stops me “ ballooning” I also enjoy the diet I’m on really- love fish, chicken and vegetables. Now not so keen on cake, biscuits etc. A change in taste buds! Have also cut down on a lot of dairy although I do have full fat yoghurt and butter. I have substituted soya milk for ordinary milk as I drink a lot tea and found I was putting weight on with the amount of milk I was drinking in the tea and also in the designer coffees.

[PMRpro Ambassador in reply to Jackoh]

Is tea with soya milk acceptable? Mind you - I drink maybe 150ml of semi-skimmed in total. Don't think that will make much difference...

[Jackoh in reply to PMRpro]

I must admit I hated it at first but now I have completely got used to it, as I got used to coffee without sugar ( always had tea without sugar) Was just surprised how much carb and sugars in semi skimmed milk. (4.8 per 100 ml) My Alpro soya light has nil. I honestly don’ t know if it makes tons of difference but I like to tell myself that it does!! It’s just another thing where I can do something amidst a lot of things I can’t do or change I suppose.

[rick518]

Thanks all. Great to get your feedback.

- it sounds like sadly I can't reduce my symptoms as easily as reducing the sweet and carby stuff! oh well I have no weight increase at present but not sure about recent diabetes likelihood as not tested for 4 months. Recent posts suggest I might be into adrenal restart territory. PMR started in May - 20mg Pred - now on 5mg and pretty stable but still sl stiffness and big fatigue only some days.

[BeansHB]

I am currently on a no grain, no dairy, no sugar, no soy, no legumes, no coffee (though I'm an herbal tea drinker) diet and have reduced my prednisone from 20mg to 5mg in the past month with no symptoms. I am a firm believer in the diet connection to autoimmune disease. I have been in remission from Lupus for over 6 years due to dietary changes I made. There's a great book titled, "No Grain No Pain" that discusses the role of diet and supplements in autoimmunity, among other health issues, that is worth a read if you're interested in how diet can impact health.

[rick518 in reply to BeansHB]

Interesting - I have downloaded the EBook of No Grain No Pain. Did you 'get' PMR and from then go on a gluten free diet?

[BeansHB in reply to rick518]

I have been gluten-free for several years. I did an elimination diet when I was experiencing joint pain due to Lupus. I found that cow's milk dairy, soy, and gluten (specifically wheat, oats, and rye) exacerbated my symptoms, so I stayed off of them. I eventually was able to add dairy and soy, but every time I added gluten, I'd have a flare. I had been symptom-free and had normal lab results for about 7 years when I experienced my first PMR symptoms. I thought it was a Lupus flare, so stopped eating dairy and soy for the three weeks before I saw my rheumatologist. She ordered labs and did an assessment and said it was PMR (and possible GCA) not Lupus, and put me on prednisone. I did lots of research on autoimmune diseases, found several books, including No Grain No Pain, all of which said that there are gluten-like proteins in ALL grains (including corn) that can be problematic. Several of them recommended no grain, no legumes, no dairy, no soy, etc. So, I decided to follow the recommended diet (which you'll find in the book) to see if it would help. I've been on it for about 6 weeks and have been able to reduce my prednisone without having any symptoms. At this point, I'm going to be following the DSNS protocol to continue reducing and see how it goes.

[rick518 in reply to BeansHB]

20mg- 5mg with PMR in that time is impressive. Will definitely try out the No Gain no Pain route. You were probably in good shape having avoided gluten for a long time pre PMR. Thanks for the info and good luck with the next reduction

[BeansHB in reply to rick518]

I should note that my prednisone protocol has been an alternate day dose. I started with 20mg for a few weeks when first diagnosed. I was getting migraines so reduced to 20 one day, 15 the next. It's from this dose that I've dropped to 5mg in a little over a month. Let me know what you think of the book and if you try the diet. It's a tough one. There's another great book written by Amy Myers, MD titled, "The Autoimmune Solution Cookbook." It's got LOTS of recipes (unlike NGNP). I've tried a couple of the grain-free breads and they're pretty good, considering. It's worth getting if you decide to commit to the diet.

[Hidden]

Hi rick518

I can eat simple sugars in moderation; simple sugars like honey. More complex sugars however, particularly starch, I avoid, because they make me ache.

To treat my PMR, I'm on a strict NO-STARCH diet. I've never taken any pred. The diet seems to be working. Each month I feel better and better. On Wednesday I'm due another blood test and I'm hoping for a better CRP!

Cutting starch is difficult (no bread, no potatoes, no wheat, no cereal, no rice, etc, etc, etc (for a longer list, see kickas.org/ubbthreads/ubbth... ). The diet is probably similar to BeansHB 's except that dairy causes me no problems, plus I am OK with coffee.

[rick518 in reply to Hidden]

Geez ....I dunno how I could have survived with no Pred in the initial stiff in the morning stage of PMR. It brought tears and was bad enough to understand why people consider euthanasia. Not that I'm that way inclined but it gave me an insight that's for sure. BeansHB's is pretty radical but for a short time might be worth it

[tangocharlie]

I've been eating healthily for a while now, based on avoiding the white carbs and sugar and processed food as others have said. I think it works because if I have an 'off day' and eat bad stuff like sugars etc I definitely pay the price and feel dreadful.

[rick518 in reply to tangocharlie]

You are lucky to have a strong reaction - it does not seem to make a difference to me if i go without and then eat sugar/carb again

[tangocharlie]

I get strong reactions to other foods as well as sugar, eg nuts, dried fruit, pickles, wine .... current thinking is that it is something to do with histamines ....