Apologies in advance to those who may have read a variation on this as a reply to a thread started by Shires123.
When I was diagnosed with PMR nearly 4 years ago, I was also about 20kg overweight and I went on a 20gm carbs "keto" diet (based on information on the dietdoctor website recommended by others). After 2 years I'd lost 18kg. My blood sugar levels were really healthy and I'd got down to 7mg of pred. I actually felt pretty good, given the circumstances.
But then a little under two years ago, GCA also came calling and I was on IV pred for 3 days, then the usual really high doses for quite a while. Relief from the GCA symptoms was wonderful, but all the weight came back on with a vengeance (18kg and quite quickly) and my Hb1Ac went up to insulin resistant levels, even though I was eating EXACTLY the same diet that had previously had me gently losing weight and maintaining healthy blood sugar levels. And I felt lousy a lot of the time; still do. Most disappointing would be an understatement.
My theory is that those massive doses of pred somehow "damaged" my blood sugar metabolism, as even though I'm down to 5mg now, the weight is still not budging, although it has now stopped increasing and my Hb1Ac continues to be in the insulin resistant range. So perhaps the "damage" is slowly getting repaired? However, I suspect my cumulative dose of pred might be a factor too (I'm currently running at a total of nearly 19gm over the 4 years).
Since day 1 of pred, my blood sugar levels have been very sensitive, rocketing up at the drop of a hat, even when initially I was actually eating virtually nothing, and zero carbs to boot for a while, before I started on pred and for a few weeks afterwards before settling into the 20gm of carbs a day regime. The zero carbs was suggested by my GP – essentially a carnivore diet, which I hated. I really missed veggies! I still only eat them in moderation and only low carb ones.
I use MyNetDiary to track my carbs etc, so I know I'm still on track at 20gm of carbs per day and an appropriate total calorie intake. I know the question will be asked as to whether I'm not accurately tracking my food or am "cheating", but nothing has changed since prior to the GCA in terms of what I'm eating (and I'm just too exhausted to change it, which is why the definition of madness could well apply – "keeping on doing the same thing, but expecting a different outcome!")
I remember KoalaJane mentioning that she learned to monitor when her blood sugar spiked and wouldn't eat during that time, so perhaps my timing for eating needs to change?
But maybe it's just that a keto diet no longer works for me? Who knows…
Has anyone else experienced this or similar?
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I don’t know what’s happening but I found I had to be off Pred (Aug 2020) for a few months to be not so carb sensitive. Since then I still have had to avoid the normal carbs seen on the side of a plate during my evening meal. This was until recently when I started to lose weight and had to add carbs in. I now know this is because I’m ill with something else.
Low adrenal function can cause weight gain and feeling generally lousy so if you don’t know about this, it is worth reading in the FAQ’s.
It’s all very well saying you need to have a practically carnivore diet but that is setting you up for deficiencies, lack of fibre and misery. Could you just have become diabetic and beyond dietary control? Isn’t the GP considering this rather than telling you to eat an unsustainable diet and going for blaming the patient?
Thanks for the reply Snazzy. Hope your "something else" illness isn't anything major and you'll be feeling better soon.
Yes, I was aware of the low adrenal function and weight gain, but thanks for the memory jog. In my case though the weight gain was mostly when I was at the higher doses of pred. It just isn't shifting now I'm down to lower doses, so perhaps the adrenal insufficiency may be playing a part in that for sure.
I think you might be being a tad harsh on my GP. He asked me to try the carnivore diet to see if it would help bring down the inflammation after 40 years of vegetarianism and perhaps forestall needing to go on pred, as he well knew the path ahead for that. Plus he had been on a carnivore diet himself for some years, cured himself of Type II diabetes and is one of the fittest, healthiest people I know. Unfortunately for me it wasn't enough, although it did bring my inflammatory markers down somewhat. He was fine for me to reintroduce some veggies and go "keto". And to start pred, which of course did the trick as far as the PMR was concerned. There was no patient blaming involved. My apologies if I worded that incorrectly to give that impression.
I agree with Snazzy - there is a chance/likelihood that you have become diabetic as a result of the GCA episode. Whether it is the GCA having damaged the pancreatic cells or the pred effect is immaterial - if you have developed diabetes then it is a bit old-fashioned to expect you to use the only means available to stay alive back in the Victorian age when there are excellent medications that will help.
I have to say - it is less the Hba1c reading that bothers me and more the overall feeling of unwellness you report. I think your GP is being blinkered - something has changed.
I agree something has changed and maybe it's damage to the pancreas by the GCA or just simply age? I have idly wondered too if perhaps I've developed a third autoimmune disease, but my GP doesn't seem to think so as all my tests come back nicely in normal range every time (other than the HbA1c).
My current GP has only really been active in my case while I had PMR. Although he has been concerned about my blood sugar all along and has suggested insulin as a possibility. We agreed though that I'm not needing it at present as long as my Hb1Ac doesn't go any higher. And getting an appointment with any GP these days takes months, so I tend not to bother. All too hard. Our once magnificent medical system here in Australia is pretty broken these days.
Since the GCA started, I've been mostly under the care of the rheumatologist. I've mentioned several times to her that I feel rubbish all the time and whilst she's sympathetic, she just says it's really common and unfortunately there's nothing much can be done. She's not been so concerned about the blood sugar, as I'm not diabetic, just insulin resistant, and thinks it will settle as my pred gets lower and the weight comes off. Except I can't seem to lose the weight. She didn't have an answer for that one.
She has a theory that I have a thing called central pain sensitization (and wants me to take duloxetine). I don't agree with her from what I've read, but in deference to her expertise, trialled the drug. It and I did not get along at all, as it made me feel a LOT worse, so with her permission I discontinued it.
"Our once magnificent medical system here in Australia is pretty broken these days"
Despite all the help you are getting from former UK/Irish HCPs????? It's a problem you share with the UK and the USA though and other countries are starting to struggle too. Covid doesn't seem to have shown the right people just how essential and vulnerable our healthcare systems are. And it is very tempting for doctors to "see" something that they think could be cured by a pill. But duloxetine could/should have helped the anxiety too.
Thanks for your reply. Good point, but I think because the balance of my diet (other than the carbs) is healthy fats and protein, in theory the body can produce energy from those too, particularly the fat. Whether my particular body is managing that OK is another question of course!
My energy on the same diet prior to getting GCA was much better, so my guess is that the GCA (or the high doses of pred) may have damaged something in my metabolism. Or something else is going on that hasn't been found as yet.
Like the underlying cause of the GCA is not fully inactive - autoimmune disease causes fatigue. I still have fatigue - however much carbohydrate is in my diet.
Yes, the fatigue is a bit of a killer isn't it. My sympathies for yours. You've been dealing with it for much longer than me. And complaining way less!
I was on a strict grain-free keto diet for 3 years and during that time I put on 30 lbs. (but it did clear up my rosacea).
After those 3 years, I went on a low-fat moderate carb diet and lost 20 of those 30 lbs. I then understood that my body really doesn't use fat efficiently as fuel as carbs do for me.
On the other hand, my housemate lost a lot of weight on the same grain-free keto diet I was on.
We are all unique individuals with different metabolic needs. 🙂
I was following Dr. William Davis and his book series "Wheat Belly" where fat was used in place of grain carbs for body fuel. The diet worked for a lot of people to lose weight where they ended up lowering their A1C and diabetic meds or they completely came off their diabetic meds.
I'm the main cook in the house and when I embarked on the Wheat Belly diet my housemate joined in with me over the course of 3 years. In those 3 years, I gained 30 lbs. whereas my housemate lost a substantial amount of weight as well as him having to decrease his diabetic meds.
My body definitely runs better on carbs (both brain and body) and not fat, whereas my housemate is just the opposite.
That is interesting. Thank you. It all gets so very confusing as to what to eat doesn't it, as there seems to be good science to support many opposing dietary viewpoints. I was a vegetarian for over 40 years, tried to look after my health and thought I was doing the right thing. But I put on weight, got osteoarthritis and then autoimmune diseases. But of course I can't say that being vegetarian and those illnesses are cause and effect. But I have wondered about a possible connection. It was interesting that when, at the onset of PMR, I started the carnivore diet (which I might add, only lasted a few weeks!), my inflammatory markers measurably came down, although not enough to ease the pain at the time. That was before I started on pred. Which eased the pain in about 3 hours!
Why not try balanced diet? It is known fact that carbs convert to energy much more efficiently then any other source of calories. Another factor in weight gain/lack of energy might be change in lifestyle and how much exercise (or lack of it) while on high dose of pred because of CGA.
See my reply to PMRPro below for what I actually eat on a daily basis. My weight gain seems to have stopped now I'm down to 5mg pred. I suspect if I added in any more carbs then the weight would just go up again.
I don't do any exercise at all in the conventional sense as I just can't manage it, just don't have the energy for it, so that's probably an important factor as you suggest. Just walking around the supermarket once a week totally wrecks me for the day ("tank goes to empty") and I need to have a lie down afterwards. Then I'm stiff and sore (DOMS) for several days. Any sort of "real" exercise is just beyond me a present, and has been ever since the GCA arrived. I even think twice about going up and down the stairs here, but unfortunately the toilet it upstairs and living areas downstairs, so I at least get that "exercise". 😂
I understand it is hard, especially if you stopped "ever since the GCA arrived", but I suspect that is the key to getting back to normal. I may be one of the lucky ones as far as recovery, but trust me it was not easy. In a first few weeks of PMR I needed help even to go to bathroom, which was devastating, since I was training for triathlon just a month before ( and was very fit). But step by step first I forced myself to walk... short distance at the beginning... then it became longer and soon (within 2-3months) I was able to walk my usual walk 1k 3x per day ( my trusted buddy (weimaruner) help me with motivation . That was 8 years ago. I was able to recover to pre-PMR level of fitness by gradually increasing distance and intensity of training. It is possible, but not easy. I think it is worth trying.
Thank you so much for sharing your story and for your encouragement. It's very much appreciated indeed. In the past I've been very fit, perhaps not triathlon fit like you, but I did a lot of martial arts, running and swimming in particular. I still wistfully remember that delightful feeling of being fit, strong and flexible and having energy to burn. It dismays me to feel so diminished these days by comparison. And disappointed in myself that I've not tried harder.
So perhaps I can try to exercise again, but it will definitely have to be VERY "slowly, slowly, catchee monkey" for sure. Thanks for the gentle nudge!
..yes very slowly -and to be honest no point in beating yourself up about what you did before GCA… or what you may or may not have done since.
GCA a completely different scenario - and now you can only do what your illness is happy with.. you can and will gain strength.
As the old saying goes you can’t compare apples and pears -accept that now is now.. and do your (new) best. That’s all anyone -yourself included-can ask.
Thank you so much for the encouragement too. I guess I'm one of those PMR recalcitrants who just hasn't accepted the "new me" yet. It would be lovely to regain even a modicum of fitness again, just for the sake of feeling better in myself, if for no other reason. I very much doubt I'll ever be like I was when younger, but to become somewhat fitter and lighter than I am now would be just fine!
My rheumie did say that from her experience, some people with PMR never regain their exercise tolerance even once the autoimmune activity is in remission and they're off pred, but I hope I'm going to be able to make at least some improvement.
There's no escaping the effluxion of time I agree – I've definitely aged in the past 4 years for sure, and feel that the PMR/GCA have added in extra ageing on top of that which is just caused by the passage of time.
And although I still remember how good it felt to be really fit, I'm realistic enough to know I'll never get back that previous level of fitness again. But even some improvement on my current lack of same would be nice.
You never know - you are older than he was but Skinnyjonny was in a wheelchair when he started with PMR - a few years later he almost completed a climb to the top of Annapurna IV. It wasn't the PMR that defeated him, it was the weather!
I suspect I don't have his level of determination somehow! At the moment I'll be happy to be able to walk a few kms and to stand up for longer than 10 minutes. I admire his effort for sure though.
Thanks to yours and others encouragement, I went for my first walk this afternoon. 7 minutes of very gentle tottering, 400 steps. Felt a bit like climbing a mountain and I needed a lie down afterwards. Hardly climbing Annapurna, but it almost felt like it! Fingers crossed it will get easier with time. I will try again tomorrow if I feel up for it, but maybe a bit less. I'll just have to pick a 5 minute Japanese audio lesson instead of a 7 minute one to listen to while walking! The distraction did help.
Your rheumie would be correct. Although I regained endurance after PMR (18 months off pred), I cannot push mu muscles too hard in strength training. But I want to emphasize that slow to moderate endurance activities do help in pain relief and help one feel better. But take it very easy... no reason to rush.
i find that i feel disappointed in my self also for not being able to do the things i used to do but we need to remind our self of how far we have came and to listen to our bodies..
It may be that the storing up of exercise for that walk around the supermarket is the problem. pmr_nikola mentions one step at a time - and that is pretty crucial. You need to keep doing a bit every day - not expect to be able to do a relatively big expedition once a week. And it really can be just a few steps at a time, maybe adding a few steps a day. And I mean FEW, not multiples therof!!!!
I actually dread that supermarket trip to be honest. But we have to eat, so I do it.
I totally agree with you though – a little bit and regularly is the best bet for establishing any new habit, including exercise. And maybe I just have to grin and bear it for a while and just force myself to do it. I know that any new habit takes time to establish, and the the best way to progress is just to keep on turning up regularly.
Putting the theory into practice is the tricky bit though!
I dread the supermarket outing too - but I did when I was perfectly healthy!!! Actually, I don't find it as exhausting as some things - useful things trolleys to lean on! I cannot handle a big trolley so the choice of supermarket here is crucial. The Big Spar has enormous things that I can't even reach to the bottom of - but they have small ones to use with wheelchairs and I take one of those on the few occasions I go there to get the items only they sell.
But your start should be with just maybe a 10 minute stroll - 5 mins out and 5 mins back if you can manage that. Less if you can't. On the flat, And rest the next day rest to assess how that left you. If that was OK - add 1 min out, automatically adds 1 min back. But NEVER force yourself to continue if you feel overwhelmed, you need to force yourself out the door, but not force yourself to do too much. And too much is very little. Remember, that supermarket shop is not just the walk - it is bending and stretching, lifting and carrying. Don't ever lift a big bag - pack things into smaller bags to transfer from trolley to car boot and car boot to house. I have a small folding sack trolley with a bag or box to put multiple smaller bags into to stop them falling all over the place. It is all about adaptation and minimising any single action.
I definitely relate to what you say. I've NEVER liked supermarket shopping either. OH comes along and pushes the trolley, so that helps a bit. Plus he can gallantly "play sherpa" and carry the bags. That helps too. It's the walking that kills me. Fortunately there's a convenient bench halfway around, so I often stop for a rest there.
Thanks for your detailed suggestions on how to get moving. It's hilly around here, so I'll have to work with that. I might try less than 5mins each way first up and see how I go. Planned for this arvo (Aussie afternoon) as it's a lovely sunny autumn day.
Relates to a fairly small study done on RA patients years ago: they were supplied with a strictly vegan diet over a period of months. Half of the patients found their joint pain was greatly improved while sticking to the diet provided. As soon as ANY animal protein was reintroduced, the pain returned. But it only worked for half. And since back then, a vegan diet was difficult and a bit boring for the average American, as well as expensive, few were able to maintain the vegan diet long beyond the study. Sounds as if the reason for that result has been identified.
PS - MY takeaway is that there are at least 2 different mechanisms for the joint pain in RA. Not that it is a success or failure.
Living a vegan diet back then wasn't particularly easy, especially in the USA, and any dietary intervention that must be very strict as that did requires great commitment. Probably not an option for anyone unable to work or otherwise on a low income. And these days - although it is pretty easy to be vegan, it is a different matter eating a healthy vegan diet!
I'm dealing with weight gain too. I've gained 20 lbs since my PMR & GCA journey. I had lost 10 lbs about a year ago but had a big flare, had to go up to 35mg and hello to that 10 lbs again. It seems that a low carb diet isn't the only answer for me. I don't get results quickly like I used to. I'm sure if I stuck to it long term, I would. I was trying to eat more protein and less carbs but I really like more veggies and less meat. The Pred really does a number on our blood sugar regulation and weight gain. I hope that I can get it under control. It's frustrating. I don't look like myself. Plus the puffy face and under eye bags, bigger tummy. Thanks for listening to my rant!
Have you kept a record of what you eat? Carbs hide in unsuspected place - and root veg and fruit are common obstacles to weight loss. Salt is also critical - causes fluid retention when you are on pred.
I use MyNetDiary to log my food, but as I eat virtually the same things all the time, I don't log every day.
The only fruit I eat are blueberries and occasionally strawberries when in season. But small quantities of each. Veggies are all above ground except for occasionally a small carrot or some radishes.
Here's a typical day's food:
Breakfast: Plain Greek yoghurt 3 tblspns, blueberries 1 dspn, small handful of raw nuts, tspn of shredded coconut. Plus my pred.
Lunch: Chicken and vegies stirfry. Not a large serving. Typically cabbage, various leafy greens, broccoli or cauliflower, a little pumpkin or red pepper for colour and occasionally a little bit of carrot. Fennel, radishes when in season. Sometimes I add either a little feta cheese or a a couple of dspn of coconut milk. I do add some salt, because if I don't get enough, I get muscle cramps. I also add either some curry powder or some coconut aminos for flavour.
Evening meal: Usually a keto (low carb) cracker with some cheese like Maasdam. Or sometimes nothing if I don't feel like eating.
Snacks: My only "treat" – a square of dark, vegan, no-sugar chocolate.
Drinks: Usually hot water or plain mineral water, but occasionally green tea or a herb tea. Nothing with milk or sugar.
That's it! Very boring, but I've got used to it now. And it's easy.
Do you actually do a calorie count too? Are you eating enough? Persistent low calorie eating can send the body into starvation mode and it needs less and less. But there is a very rare adverse effect of pred where weight gain happens irrespective of diet.
Calorie counts seem to be around 1000-1200 calories. I haven't checked that for a while though I must admit. I hadn't hadn't heard of that effect of pred where it causes weight gain irrespective of diet. I wonder if it could be something that happened as a result of my steadily increasing cumulative intake of pred? 3 grams in 3 days at the start of GCA certainly bumped that along for sure.
Don't see why to be honest - my cumulated dose after 15 years is well north of 25g and I have lost well over 10lbs/5-6kg since being on TCZ and I haven't been particularly conscientious about carbs either for various reasons.
I'm not sure what's happening with this thread, but a few of the posts seem to have disappeared or have been deleted – I'm getting a little message at the top saying "This reply was deleted". Wasn't by me and I'm not sure which particular post/s it's referring to. It's making the thread all a bit disjointed, as there are answers from various people to posts that aren't there now. And answers seem to be falling in incorrect places. For instance this post isn;t going to the bottom, when I think it should be. Strange! Is anyone else seeing that?
Ah, thanks for that explanation. Makes sense. I wonder what was reported and why, requiring some of the posts to be deleted? I can't recall anything in there that seemed problematic? One of life's little IT mysteries I guess…
The reply from pmr_nikola was signalled to me as having been deleted - it hasn't. If you get notifications to your email and work directly from there, you see what the comment was because that registers immediately it is posted and you get a notification even if it is deleted subsequently.
Your reply is indeed at the bottom of the page. HU has some strange ideas about where a reply is to go so a reply may appear a long way down an internal thread and not immediately after the comment you wanted to reply to but that is a long-standing thing and yes, it does make things confusing.
And at present, I'm playing hunt the reply because even coming directly from my email notification, I often land somewhere in the middle and have to scroll up and down to find the reply.
Yes, I usually work off the email notifications – I got 4 for the one post by pmr_nikola, so things are little awry it would appear. And I've been playing hunt the reply too – they seem to be all over the place at the moment.
The replies I noticed were missing were a few of the earlier ones by taichikung (I think that's the name). They're just gone, so there are only yours and my answers still there?
That may well be they deleted them themself. Our replies didn't support their original comment if I remember rightly. Though usually that also automatically deletes any replies to the deleted reply - does that fit?
Click on More under the comment - if it was your own you get the option to Edit or Delete or Copy reply link. If it is someone else's the option is Copy reply link
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. That was 8 years ago. I was able to recover to pre-PMR level of fitness by gradually increasing distance and intensity of training. It is possible, but not easy. I think it is worth trying.
Have other members of thr pred 'club had trouble losing weight
After blood results, so many new things. 
Pred: Hunger/appetite change. Early days, do things get better
I've signed up for Tim Spector's ZOE study looking at blood sugars and gut health
Blood sugar monitor 
