How long for me on Prednisolone?

[Silver-Babe]

Hello - I am new to this group. Have just been diagnosed with Polyneuralgia rheumatica. V painful upper body and so stiff! However these little wonders, 15mg a day, cured me overnight. But I am so worried about getting fat, having just lost 8obs on the keto diet! How long does it take to put weight /fat face on? Also I am 77 and it sounds like I can't ahve the Covid vaccine with steroids! This surely is more important? What is going to happen to me? Can anyone give advice as to likely weigt gain and if I could give it up in orde to get the vaccine?

[DorsetLady PMRGCAuk volunteer]

Hi, and welcome,

This might give you an overview of your illness, but others will also be along with more info - healthunlocked.com/pmrgcauk...

Yes you can have COVID vaccine on steroids, some on here already have had it.

[Hidden in reply to DorsetLady]

Thank you for the reassurance on the Covid vaccine x David

[PMRpro Ambassador]

If you can have the flu shot with steroids then you can have the Covid one - what makes you think you can't? Quite a few here have already had theirs. One said the nurse doing the questionnaire beforehand stopped and looked when they listed pred as a medication and handed them over to the doctor - who promptly gave them the jab.

If you are on the keto diet you should be OK with regard to weight management on pred - we always recommend low carb. Doesn't have to be totally keto. Weight gain with pred isn't inevitable and low carb also reduces the risk of developing steroid induced diabetes so it is win-win.

But you aren't cured - you are on enough pred to manage the inflammation. In PMR a new batch of inflammatory substances is shed every morning and it is a chronic illness that can last some years. However, you don't stay at 15mg forever, you will soon start to taper SLOWLY to find the lowest dose that gives the same result as you have at present.

[Silver-Babe in reply to PMRpro]

Thank you so much for your prompt reply. I like this site, it is wonderful! You hve encouraged me and I am relieved that I can have the vaccine, (though the blurb in the Pre box says you can't take it "If you have had any live vaccinations". Well, that is my main worry gone that I can take it, becuase I haen't yet had the vaccination, but should be due any time soon.

Don't like the sound of an "auto-immune illness". Could it become serious? I will keep off the carbohydrates now for medical reasons as well as KEto reasons. But then I have to eat a lot of fat, including double cream with this diet - amazing isn't it after years of being 'fat-free'. Anyway, thank you both so much for your great advice!

[PMRpro Ambassador in reply to Silver-Babe]

They aren't live vaccines - so that's out of the way.

Autoimmune illnesses just means that your immune system has become deranged for some reason and doesn't recognise your body as self so atttacks your body tissues and damages them. That causes inflammation and the symptoms. There are lots of them - rheumatoid arthritis and lupus are just two besides PMR and GCA. Some are serious yes, but PMR isn't particularly, just a pain in every sense but it doen't kill and it doesn't maim like RA. Some people with PMR develop GCA and that is more serious as untreated it can damage your sight. It would herald itself with other symptoms, usually including headache, visual symptoms and feeling worse than with PMR. Just be aware - it doesn't happen to everyone by any means.

[Sophiestree in reply to Silver-Babe]

Is full fat important in a low carb diet? I don't eat much dairy at all as I don't like milk, butter, cheese or cream, so am wondering if I'm ok not having full fat? My diet is mainly protein and veg with a fair amount of pulses and very little fruit other than bananas and berries.

[PMRpro Ambassador in reply to Sophiestree]

It is mainly to reduce the hunger pangs although once you are low carb they are mostly gone. I too fill up on veg and while I do like dairy and eat a fair bit of cheese and yogurt etc , I don't eat high fat. There are people who support the LCHF approach - low carb high fat but the level of fat can be very high and is disputed. The main problem with the lower fat options is they are stuffed with carbs - sugar and stuff to make them "taste better! I use at least semi-fat options but never the already flavoured sort - I buy natural Greek yogs and kefir. I also like Skyr which is naturally low fat.

[Sophiestree in reply to PMRpro]

Ah I see, thank you. I have to be honest, I tend to buy 0% fat free Greek yoghurt, and Kefir, well I can't do it, as much as I really need to, it just makes me reel. I have always had gut issues, and just sniffing an antibiotic gives me thrush, in my eyes, ears, everywhere so have always taken a probiotic. I did wonder about Kombucha but am wondering if that has too much sugar in it or if it's OK.I do eat enough veg for more than one person though and quite a lot of lentils and pulses along with fish and chicken if I can be bothered. But you're right, I don't really get hungry and tend to eat on time otherwise I forget. Not like me usually. I have a very healthy appetite, but never been a snacker and don't like sugar stuff really other than a couple of pieces of dark chocolate, or if I'm feeling really naughty a store brand mini magnum!!

[PMRpro Ambassador in reply to Sophiestree]

No NEED to about kefir - I can't like some but I found a thicker one in a single yog sort of size here and it is very creamy - made in Austria.

[Hildalew in reply to PMRpro]

Is it not also viable to get your necessary 'fat' from non dairy eg vegetable or fish sources = oils

[PMRpro Ambassador in reply to Hildalew]

It isn't about necessary fat - it's about a dietary approach. But there is only a limited number of veggies with much fat - and many veggies are more nutritious when served with some butter or cheese.

livestrong.com/article/5196...

[tangocharlie in reply to Sophiestree]

I've cut down on dairy and try and get my fat count up with more olive oil and nuts and avocado. I have a Baby Bel cheese every day with the Pred for calcium and put a knob of butter on veg. Due to histamine intolerance I can't eat yoghurt or hard cheeses

[Hidden in reply to Silver-Babe]

Thank you so much for your prompt reply. I like this site, it is wonderful! = True

[Meggsy]

Hello Silver-Babe. Just to reassure you, I have eaten low carb high fat for more than two and a half years and haven’t gained an ounce. I also recommend the book Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide by Kate Gilbert. Marea 🌻

[Hidden in reply to Meggsy]

Me too on the book

[Meggsy in reply to Hidden]

👍

[tangocharlie in reply to Meggsy]

Similar here and also my blood sugar readings are perfect whereas before I did low carb I was at pre-diabetic levels. My rheumatologist is impressed

[Silver-Babe in reply to tangocharlie]

Yes, I'm told at the start of my jouney that I am diabetic borderline, so we will see

[Meggsy in reply to tangocharlie]

Yes, it works!

[Koalajane in reply to Meggsy]

I also use the LCHF diet and have lost over 3 stones

[Hidden]

Hi you will get plenty of technical responses I only have my personal experience. Don't worry PRED will harrness the inflammation you are ok to have the COVID jab weight gain is an issue I put on 1 and a half stone mainly through comfort eating I have tapered to 5 mg of PRED and have just started to deal with the weight gain I anticipate that as I reduce the PRED I will increase excercise currently walking 15 miles a week at pace due to increase to 25 by the way I am 76 yrs I hope to be off PRED by feb 2022 good luck

[Silver-Babe in reply to Hidden]

Thank you Bilhill. I must not cheat on my Keto diet then! But how you walk so much - I am 77 near you, I will never do that much!

[Hidden in reply to Silver-Babe]

Hello SB I don't usually enter into conversation but in answer to your Q on walking. I suspect I am a bit unusual. I used to play professional rugby and then turned to rugby union retiring at 55 yrs by then I was cycling. I used to ride a tandem with a chap with Downs syndrome we cycled all over the world quite a lot in the middle east our pinnacle was end to end in 13 day's raising 75k for charity. When I started to slow down I took up golf and could easily play 36 holes in a day just before being diagnosed with PMR I was planning to cycle to Bulgaria and meet the boys for a weeks golf but PMR put that on hold basically I have always been fit and walking 15 miles is enormously frustrating I used to cycle 100 miles before lunch I am very fortunate to have been so fit and find the limitations of PMR incredibly frustrating I am having to adjust to the slower pace of life I will do it but I refuse to go quitely. I wish you well good luck .

[Gunflash]

Hi SB, this reply should cheer you up. I am also 77. Diagnosed last April end and started on 15mg pred May 1st. After following guide line tapering now down to 4mg. It’s not been a perfect ride, had cramps in feet and calf, pains in shoulder and right arm but overall I am good at present and pain free. I shall reduce to 3mg in a week or so and keep my fingers crossed, I have learned always to expect the unexpected with this condition. Early this year I was 198 pounds I have dieted a few times in my lifetime like you, low fat diet, however I realised this was no good for somebody with PMR. I followed the advice and went on a low carb diet, I was fairly strict with it and I am currently 171lbs. I drift from 168 to 172 and I feel very good. I probably take more exercise than PRM Pro and Dorset Lady ( advice I have learned to trust implicitly ) would advise, golfing when rules allow 3 times a week and walking every day at least 2 miles.

I have had no problem loosing weight (2 to 3 pounds a week) whilst on pred, no moon face and no major issues. I stopped eating all forms of bread, cake, potatoes, pies, puddings, confectionery etc. Back now with a stable weight eating sourdough bread now and again and the odd biscuit.

So don’t worry, I promise you that you are able to loose weight on pred and you may not necessarily get a dose of moon face.

You can have either vaccine whilst taking steroids, it’s been made quite clear, I am hoping to have mine in the next few weeks.

So chin up, get your low carb diet going, get the jab and get ready to start living again.

Best of luck👍👍

[PMRpro Ambassador in reply to Gunflash]

Oh no - we don't dissuade anyone from doing as much as they CAN. But we do say don't dive into a major exercise progamme without sticking your toe in the water first and building up slowly to find YOUR limits. It is too late when you went for a 5 mile hike and can't move the next day - DOMS can be far worse and last far longer when you have PMR. It can pay to avoid it ...

[Gunflash in reply to PMRpro]

Good measured response, thanks.

[Silver-Babe in reply to Gunflash]

Oh Gunflash! What a marvellous letter! You have cheered up no end as you said at the beginning! I can't thank you enough for such encouraging news. I really do appreciate all you say and will follow your advice. Just hope nothing goes wrong - like a moon face! Tnank you again so much!

[cookster56]

I started back in April last year, on 20mg of pred.

I’m now down to 2.5. Hopefully going down in 2 weeks to 1 mg for another month.

The best thing that I can say is be positive.

Some weight gain around the waist and chest but probably due to lockdown and not being as active, also Xmas.