Day to day living with GCA

[Keeping_healthy]

Being new to all this way of life, I just have a couple of questions.

What does it mean in day to day life to be immune suppressed? My doctor has told me to stop work for now for 2 months. Do we have to stay away from everyone? Do people on high doses pick up infections easily? Can we take anything to boost our immunity?

What about exercise? I recently bought a peloton bike, but my doctor has told me not to put any stress on my body. So should I do nothing or just maybe walking?

Lastly, I would be very interested to hear from anyone doing the ketogenic diet. I don’t know if weight gain is inevitable, but I definitely would like to avoid getting extra fat on the face, abdomen and back! I know for me personally it will make me feel depressed if that happens.

[DorsetLady PMRGCAuk volunteer]

This is advice re Covid-19 in UK - so assume similar in US - so you should be shielding due to amount of Pred you are on.

rheumatology.org.uk/Portals...

Your immune system is not working correctly , so yes you are more likely to pick up infections. You don’t want to boost it - at the moment the steroids are trying to dampen it down.

Gentle exercise is good for the body and mind, but you need to be aware that your muscles don’t recover as well, so repetitive or strenuous exercise is not good at the moment.

As you are in the shielded group (check with doctor if unsure) then look for pilates, yoga or tai chi videos online - but make sure they are either for beginners, or older people - I know you’re not, but your body is - temporarily! So build up gently and slowly.

As for diet, others will be along, but general advice is cut out the refined carbs.

[Keeping_healthy in reply to DorsetLady]

Right ok. So I basically shouldn’t look to boost my immunity like taking pro biotics etc...it’s hard to get your head around.

I am taking fish oil, calcium, magnesium, vitamin d and k, baby aspirin and a multi vitamin are they ok?

[DorsetLady PMRGCAuk volunteer in reply to Keeping_healthy]

What you’re taking is okay.

[Joanbill13 in reply to DorsetLady]

I’ve been taking probiotics and kefir yoghurt for sometime as had antibiotics for a urine infection 3 months ago. Is this wrong thing to be doing. Am taking 7.5-7mg pred.

[PMRpro Ambassador in reply to Joanbill13]

Dietary probiotics are almost certainly OK - even high dose capsules suit some people after having been on antibiotics.

[Joanbill13 in reply to PMRpro]

Thank you got a bit worried for a minute. So glad your here

[DorsetLady PMRGCAuk volunteer in reply to Joanbill13]

PMRpro beat me to it!

[Joanbill13 in reply to DorsetLady]

So pleased you are both here. Where would we be without you!

[tangocharlie]

I'll leave others to answer the first 2 questions better than I can, but there are a few of us on here who do keto. Well, I aim for full keto but I usually have a few more carbs than if I was on strict keto which is where you need about 20g a day to stay in ketosis. So I'm more low-carb, in my case I've had to adjust to take out some food sensitivies too. I'm having a restart now since 1st June trying to do strict keto for the whole month and see what happens. Are you doing it already or just interested in starting?

[Keeping_healthy in reply to tangocharlie]

I’ve actually being doing Keto for over 4 years now and low carb on and off for 10-15 years. I’m not super strict as I’ll have low carb wraps, Atkins sweet treats, butternut squash and wine etc..... I’ve found it harder to lose weight being 50, but I’ve somewhat managed to maintain.

I’m just worried about gaining with this medication. I’ve heard about moon face, buffalo hump, extra abdominal fat, which I don’t need.

[tangocharlie in reply to Keeping_healthy]

You do need to continue with low-carbs as PMRPro and many others say to keep the weight down. My reason for wanting to try full keto is that on Facebook groups for keto and for PMR some people claim they have put their PMR (and other illnesses) into remission by doing it, so I reckon it's worth a go. Of course everyone is different, they may not even have had proper PMR in the first place etc, but I have nothing to lose by trying and everything to gain. So hard to resist things like ice-cream in this weather though, and unforunately my resolve crumbles easily if somebody hands me an Aperol spritz or Magnum.

[Keeping_healthy in reply to tangocharlie]

Yeah I’m finding, I’m hungrier and wanting more sweet treats. Over in Florida they have Keto ice cream and I do buy some Atkin treats.

I do definitely agree with Keto, but with this new diagnosis I don’t know if it can combat it, as in weight gain or as you say remission, but I’m definitely not going to give up doing it. I’m just so frustrated. I thought I was living a healthy lifestyle with my diet and exercise, feeling invincible that I wouldn’t get any illness and then this happens and it feels out of my control!

[tangocharlie in reply to Keeping_healthy]

Sorry I'm confused when you say weight gain and remission? We don't know why exactly Pred causes weight gain, but I suspect it's something to do with how spikes of insulin cause metabolic changes, which if combined with carbs and how they are processed needing an insulin response makes things worse. The word remission is often confusing. Doctors seem to use it to mean the illness has gone away, but they often think PMR is in remission after the first successful dose of Pred, which it isn't, it's just that the ymptoms are under control, the PMR is still burning away.

[SnazzyD in reply to Keeping_healthy]

I was ravenously hungry and was totally obsessed with food at high doses and stuffed my face with mind bogglingly high levels of protein and veg. You become more prone to blood sugar swings on Pred because it makes the liver release glucose from its glycogen stores.

What is Keto icecream made of?

Sadly, there is more to health than diet and exercise, oh if it were that easy.

[Keeping_healthy in reply to SnazzyD]

It’s called Rebel ice cream.

[PMRpro Ambassador in reply to SnazzyD]

Uses xylitol instead of sugar ...

[PMRpro Ambassador in reply to Keeping_healthy]

You may find full keto difficult to achieve while on pred as it triggers the liver to release random spikes of glucose and that makes staying in ketosis impossible. That's probably also where the craving for carbs comes from because glucose being present triggers the release of insulin, too much because the body is expecting more and it doesn't come so the BS level plummets too low and you want carbs to bring it back up. But keeping carbs as low as you can does make a difference.

I developed the lot while on methyl prednisolone but cut carbs drastically then and lost 35lbs - first place it went was around my middle so I got my waist back, then arms and face, and my doctors say that the diagnosis of Cushings syndrome on my medical notes definitely no longer applies. I am still overweight - but I almost always have been

[piglette]

You can exercise, in fact it is important that we all do as much as we are able so we don’t seize up altogether! Just STOP immediately if you feel you are overdoing it. I used to go swimming regularly until Covid-19 stopped me in my tracks. You could probably even use your Peleton bike if it allows you to start slowly and gradually build up over time.

[Keeping_healthy in reply to piglette]

The bike is quite intense as you follow classes. I can’t believe how I was doing the classes, before I knew this was going on! I was really struggling and couldn’t understand why it was so hard all of a sudden as I’ve been spinning for years! I’ve cancelled my subscription for it for 3 months so far and will se what life looks like at that time I suppose.

[piglette in reply to Keeping_healthy]

I have never actually been near a Peleton, so was not certain what was required. From what you are saying you can’t just take it easily. I assume you can have it as an exercise bike though?? It sounds like cancelling your sub for a while may not be a bad idea.

[HeronNS]

You must exercise in a sensible way. Vigorous and repetitive exercise is not good, but walking is excellent. Walking gives you the load bearing exercise which helps maintain bone density plus you have so much control in terms of speed, distance, duration. Covid restrictions prevented me from going out for a couple of shorter walks a day, as had been my wont, as we were encouraged to go out but only once a day. So I was taking one rather long walk early in the day, then sedentary the rest of the time, which has not been so good in maintaining general physical conditioning. If you do other exercises which maintain range of motion and help to keep your muscles strong that's good too - like yoga, tai chi, that sort of thing. The key really is common sense and not stressing muscles which as the others have pointed out take longer to heal from exercise than normal.

[herdysheep in reply to HeronNS]

I would agree. For some of us, or perhaps many, the catch can be you don't know you've done too much until afterwards! Start small and don't do the same thing for too long. Little, and variety!

[SnazzyD]

On high doses you need to be more aware of infection but saying that I didn’t get ill with anything until I got down below 20mg then I got flu. I also have a condition where my white cells fall over every three weeks so I had a double whammy. Then I got urine infections and shingles but these are from my own flora. The only bug I was really worried about was gastrointestinal because I didn’t want an adrenal crisis because of not absorbing my Pred. I took great care with food hygiene and when out, I did what a patient said, “I eat like I’m still in the tropics”. What she meant was only eating freshly cooked and hot food and only uncooked fruit and veg that she had prepared herself.

Re exercise, be very careful. As the weeks tick by, your muscles will become temporarily less bulky and much more predisposed to injury. I had to avoid all vigorous, explosive or strenuous activity, sticking to walking only which actually kept me ticking over very nicely.

I didn’t put on any weight cutting out carbs. However, sorry to say the fat will redistribute itself to the face, neck and middle even if you don’t gain. It’s a temporary fact of life. I grew my hair longer and stopped looking in the mirror for a bit. It’s gone now.

[PMRpro Ambassador]

Exercise, starting at a low level, is fine PROVIDING you don't overdo it. The pred just manages the inflammation and relieves the symptoms it causes. But it does nothing at all to the underlying autoimmune disorder that makes your immune system unable to recognise self and so it attacks various body tissues by mistake. It continues in the background and leaves muscles intolerant of acute exercise so you run the risk of developing DOMS that is more severe than you would expect for the amount of exercise you did and also lasts a lot longer than usual. Some doctors think that excessive physical exercise can even be a trigger for PMR - mine did get worse after a day walking in the mountains here, the muscle soreness lasted a few weeks, not a few days.