Low Carb From the Start!

[Louisa1840]

I have had PMR since May 2017 so yes, I'm celebrating my 7th anniversary! I DO wish I had started eating low carb from the moment I took my first Prednisone tablet. I have gained SO much weight I am scared to weigh myself. I think my thinking was "I am going to gain weight anyway -may as well go for it!" I eat very healthily and grow my own vegetables BUT I love home made ice cream and I have certainly enjoyed too much of that!

So, to any of you newbies out there who have jsut started the PMR journey - if you don't want to gain weight then go low carb from the start. Cauliflower rice is a great susbstitue for actual rice and we have a spiral gadget from which you can make long spirals of zucchini (you may call it courgette in other countries?) this makes a great spaghetti sustitute.

I am trying!!! The REALLY annoying thing is that my brother who also has PMR hasn't gained any weight at all - is this just a male/female thing?

[SheffieldJane]

My husband is as slim as a reed, he eats 3 times as much as me and enjoys wine. I have been watching him. He is never still, fidget, fidget, fidget, up he gets, off he goes. This is how he does it bless him. While I sit Madonna like on the sofa. It’s movement, which hurts us, so we avoid it. A session at my gentle joint pain gym floored me the other week and I had to miss the next one. Back pain, husband bounds along however, getting more and more supple. Not fair!

[Louisa1840 in reply to SheffieldJane]

Yes, Jane it is totally unfair. Your husband sounds like most children who never sit, still no wonder most of them burn up so much energy! And that IS the issue isn't it? Our PMR makes us so stiff and slow, it's hard to move at all.......... I went swimming for a while and did a sort of aqua aerobic routine but it is such a business having to drive to a pool etc etc..... Hope you manage to get back to the gym soon.

[PMRpro Ambassador]

Not necessarily a male/female thing, some men on pred also gain weight.

But it is never too late to try to lose weight - sure you could adapt those homemade icecream recipes and then do as I do - I have to go to a gelateria but it is my poke to get exercise! About once a week I walk to get the bus into town, walk to the best gelateria in town and then on to the station to return by train and walk home. I think that adds up to 2.4km, a mile and a half, in 3 similar sized bites which I can manage easily with the break eating the icecream.

It isn't NO carb, it is LOW carb and everyone is different, some don't have to reduce as much as others.

[Louisa1840 in reply to PMRpro]

Oh an Italian Gelateria - stoppit Pro. My problem is, I love walking but, owing to arthritis in my right foot I can only do very limted amounts. I have to find other ways to walk off those ice creams. I do use xylitol in my ice cream recipe but it's too delicious to be frugal with so, best not to have it in the house at all!

[PMRpro Ambassador in reply to Louisa1840]

Don't let a dog near your icecream then - xylitol is toxic to dogs.

[Louisa1840 in reply to PMRpro]

OOH! I didn't know that, Pro - like chocolate?

[PMRpro Ambassador in reply to Louisa1840]

Anything that uses xylitol as a sweetener - and yes, loads of sweets use it.

[Louisa1840 in reply to PMRpro]

I gave my daughter some of my ice cream (made with xyilitol) once. She had a violent reaction - awful diarrohoea. So, now I only give it to people I know who can tolerate it.

[benhemp]

Adopting the carnivore diet (essentially a "no carb" diet) cured my PMR after I had dealt with the condition for 3 and a half years. I'm very glad I tried it in the three month period before I could see a rheumatologist. My pain was so bad; I was expecting to go back on prednisone, but I totally avoided it! The diet has not solved my psoriatic arthritis symptoms, however. I see the rheumatologist the end of this month after 5 months on 25 mg of methotrexate weekly, but I can't tell that it has helped at all. I suspect she'll suggest we try something else.

[Louisa1840 in reply to benhemp]

Thanks, benhemp. I have just spent a small fortune on Canabinoid gummies (thought with your user name you might like those?) They haven't arrived yet but I am really hoping they may help my inflammatory arthritis though I have read on this forum they are not expected to help PMR. I am willing to try, almost, anything! Wishing you all the best too.....

[benhemp in reply to Louisa1840]

Actually, my handle has nothing to do with the famed plant (and I've never had any, though I have tried CBD tincture; it didn't do anything for my pain, but it slightly improved my sleep, which as poor, as it is for many with PMR). I hope you find things that work for you!

[Wizards]

I get you, almost lol. I did a keto/diabetic diet from word go. Just shy of 9 yrs I gained 90 lbs. I've lost 50 now that I'm off.My cousin has GCA & PMR and has no side effects or weight gain. Typical of our family very thin, so jealous. Lol

As we say we're all different.

[Louisa1840 in reply to Wizards]

That is interesting Wizards! So are you saying that even if I had adopted a low carb diet from the start (as you did) I would still have gained all this weight? Is it just some people's, very individual, response to Prednisone?

[PMRpro Ambassador in reply to Louisa1840]

Everyone is different but it is pretty unusual to adopt a low carb diet and gain much weight. When people still gain weight it is often because their diet isn't as low carb as they think it is.

[Wizards in reply to Louisa1840]

YAs pmr pro said everyone is different. Against what pmr pro implied I was on a very strict diet because the prednisone made me pre-diabetic right away. I was literally .1 away from being diabetic and that was the last thing I needed. I have 2 best friends that are diabetic for 60 yrs and they were extremely helpful. I was stricter than them. They would have fruit I only had blueberries and blackberries. Everyone is different. Pmr pro is absolutely right in warning everyone to be extremely mindful of diet, I totally feel it's a necessity.

Then you have my cousin who has no side effects from prednisone and will be on prednisone for the rest of her life. Skinny as a rail like I use to be. Yesterday we were out for coffee she's eating pastry and I'm still passing.

I still watch my carbs even though I'm off prednisone but I do have them now but limited. My only carb yesterday was a bagel for breakfast and that's drastic for me. However that held me till supper and I did some heavy gardening yesterday.

Sorry, we can't be definitive on the subject but due to our genetic make-up and other things,these are great guidelines for the majority and I was the outlier. So a story to help others like myself so as not to feel bad or question that their doing something wrong.

So to answer your question. The only way you'll know is to put yourself on a strict diet and let's hope you will loose weight. I started to at 4 or5mg down.

[Louisa1840]

Thanks Wizards. I am trying at the moment, but I'm probably not being strict enough to counter prednisone' s effects.....It's hard enough to lose weight normally !

[HeronNS in reply to Louisa1840]

We are all different. I gave up all "white" carbs when first on pred. Gained no weight at all, and when my husband shared a stomach bug with me I lost more weight which never came back. In fact I was looking for ways to gain without increasing my blood sugar which tends to run slightly high but not quite pre-diabetic (borderline). I have a theory that it's not only genetics and behaviour which make it easier for some to lose or not gain. It may also have something to do with gut microbiome. While some people might crave ice cream, after several months on my next to no carb diet, mid winter I found myself craving kale! Since then I've made a point of having leafy greens of some kind all year round.🥗

[Louisa1840 in reply to HeronNS]

Thanks Heron! Yes, there appears to be a lot of research findings about our gut biome and its link to all sorts of health issues. I make my own yoghurt and have a some for brekfast with fresh fruit every day. Craving kale - now that is a new one!!! I eat from my vegie patch most of the year round and I love broccoli freshly cut......

[HeronNS in reply to Louisa1840]

I know. The kale thing kind of surprised me too! It was February and I suppose it had been endless broccoli for several months.

[Louisa1840 in reply to HeronNS]

Yes, even I can go off broccoli! I am not keen on kale though I grow it, mainly to feed to my chickens.

[HeronNS in reply to Louisa1840]

It's not the ubiquitous curly kale, it's a looser kind, maybe called wild kale although I doubt it is wild, which has a nice texture and some flavour.

[TiaPasha in reply to Louisa1840]

Have you tried raw kale given a minute massage with a spoon of good olive oil bit of salt and pepper, I have added raw mushrooms and chilli a few times. Hubby screws his nose up and pretends to like it but I love it.

[Louisa1840 in reply to TiaPasha]

I have tried massaging with oil but not the added mushrooms and chilli which sounds yummy! If I even say the word "salad" my husband runs a mile.........

[Doraflora]

well, I’m 72, 4.5 years with Pred and I hate to say this - but - I haven’t put on an ounce. Unfortunately. I really am sick of being a skinny lizzie. I’d love more bulk on my top half - despite using weights.

I eat what I want and drink wine, but I still stay the same.

I’ve taken advice about bulking up with certain foods, but even eating lots of nuts etc doesn’t help. Apparently I’m described as an ‘eco morph’.

[Rowergirl in reply to Doraflora]

You can have some of my top half bulk 🤣. At the moment I am really not happy with the steroid weight I have gained. I started being really good with low carb when I first started on steroids over 2 years ago, and although I a little bit of carb creep does happen, I am one of those people who have put weight on. I have managed to keep going to the gym throughout my PMR journey ( although sometimes practically crawling in), so luckily I have stayed quite fit and flexible. I am currently in the middle of a slow taper to 2.5mg which is going well, so I am hoping that the weight will start to come off now, especially as I am trying to keep my carbs on the lower side.

[Doraflora in reply to Rowergirl]

Good luck!