Once again unable to sleep. Thinking about my diet. I’m having some stomach and digestive investigations. My stomach is now so distended and solid with it. It looks like I have someone else’s abdomen and my own skinny arms and legs. It’s hurting my back. I am determined to boost my health this year by returning to low carb which really works for me when I keep on track. Keto bread has been a game changer. I keep reading about taking electrolytes and MCT oil to supplement the meals. I ordered some and see there is 200mg of calcium in them. I’ve read that too much Vit C can be harmful. One of my GPS sneered at me when I mentioned supplements so I don’t know how to get the best advice about what can and can’t be taken with my meds. Any ideas? Feel as if I’m walking round in circles. I’ve been at 7mg for about a year now the vaccines floored me so it was thought best to stay same. I did request increase as I’m having difficulty functioning and having a normal life but Rheumy not keen and blood tests show marginal increases. I’ll stop rambling now and try to get some sleep.
Diet Supplements: Once again unable to sleep... - PMRGCAuk
Diet Supplements
Too much vit C probably isn't harmful - just a waste of money as it is a watersoluble vitamin and you pee out any excess. OTOH taking electrolyts without any good reason merely suggests you diet isn't particularly good but you don't need keto, low carb is enough. It is almost impossible to achieve keto when on pred because it triggers the liver to release spikes of glucose from the body stores - and they immediately take you out of keto.
No GP would sneer at me about diet more than once - that is just downright rude and not the way to discuss it. If your markers are increasing, however little so far, then they need monitoring - if the dose is even slightly too low, the inflammation will build up and they will rise more.
Keto worked very well for me last year. My toilet habits improved drastically. I lost 2 stones in weight. Then entered the AZ vaccine which floored me so badly I was not able to make good food choices and dependent on what was available. Put the two back on again. I have to say I felt really hurt when the GP sneered at me about the vits. I was in tears after. That was the same consultation when she said “you are making this your life and that’s not good”. Eh I’m asking for things over and above just meds to try and not let it take my life any more. Felt wounded by her attitude. But you know that way when you are taken aback and your head is too foggy to speak up for yourself. Felt like writing in to complain but was too knackered.
I don’t do keto PerSe but I am on a high protein, low carb diet for reactive hypoglycemia. When I went to the ER in Oct with asthma, my admitting urinanalysis showed ketones. I was on 5.5 mg prednisone.
Some supplements are necessary for some people. Normally food should be sufficient to provide nutrition for most people, but this is not always true. They reckon 96% of supplements sold are unnecessary so it is a very lucrative business. Really check if you think you need supplements.
Prednisone does interfere with nutrient absorption: magnesium, calcium, Vit D, potassium and others. I actually looked into what Prednisone Pharmacist, Dr.Megan and it made a lot of sense. I have been on pred since 2015 but was given mega doses for asthma in Oct. I did take most- not all of the supplements she recommended and I do feel much better. I showed them all to my geriatrician and he said “fine”.
That is fine if your doctor agrees. It is when we buy bottles of tablets which tell us they will solve all our problems, when the vast majority are just putting money into the suppliers coffers.
Thanks for that. What you say is bodily evident. Pred is poison. I've gone from a fit and healthy 54 year old to an obese and body failing old wreck in a very short time. Yes the condition versus the damage from the medication is the killer dilemma.
Not necessarily at all - I'm not significantly worse than I was with untreated PMR 13 years ago. Most of the changes are due to aging rather than the pred and if you read Skinnyjonny's story - you can get back where you were once the PMR has gone away and you are off pred.
Pred saves lives - and lifestyles. GCA plus no pred is very likely to lead to loss of sight, potentially total, and can also kill via a stroke or MI. If it is a poison - it is a very beneficial one.
Ditto to PMRpro’s comment - but for Pred I WOULD be totally blind - no ifs, no buts!
Yes, agreed. I have Gca and that is true.
I think that is what I was implying. I do have to strongly disagree about "the ageing process". There are several crucial physical problems, which for me have been brought on as a direct result of the pred and that is not just my experience, it is the opinion of the medical staff treating me. It could fill a book if I only had the energy to write it, Ha! Everyone has their own experience with their own set of circumstances is my view.
How about regular exercise?
Tried this through an initiative provided by the local council. Tried my best but balance issues, knee injury awaiting surgery and persisting muscle pain and chronic fatigue putting me into flares. Agreed further treatment to get a grip on my health issues was necessary before I was ready. The local swimming pool closed down around that point. That was my next strategy and well then came covid. I became a member of a lovely walking group but had to give up due to my knee injury and pain. It has indeed been a perfect health storm.
When I was super weak I did tai chi on YouTube. Just gentle movements was all I could do since I felt like cellophane. I am much better now.
Yes during lockdown I did online seated tai chi and seated yoga. Then AstraZeneca came along and floored me like a zombie. I must check if the council is still running these ones. I must check if this is still running. Thanks for mentioning that. 👍🏻
Plenty of videos on YouTube
Agree.
Have you been investigated or diagnosed with any other digestive issues like Coeliac, Slow Digestive Motility or one of the forms of IBS?
Do you have other symptoms like trouble going for a bowel movement or going too much?
Establishing what is causing the swelling of your abdomen is important. Does it come on , or get worse, just after a meal ( 20-45 mins after) or much later ( 1 hour or more) , note this down and tell your GP , it will help them work out the cause. If your stomach becomes like a barrel and then deflates , it may sound odd , or feel a bit embarrassing , but photograph it happening to show the GP. It wasn't until I took a set of photographs with times on that the GP could actually see what was happening, when they did they took it more seriously.
A general multivitamin and mineral supplement taken with a meal, and more water in your diet, are usually essential to digestive health if you also have other chronic health issues.
If you have checked your iron level and you are suffering from no anaemia some people find that they have less digestive issues if they just get iron in the diet and so they use a vitamin complex without it in , as , it can sometimes, cause constipation and stomach discomfort as a supplement.
Increasing Vitamin C in the food you eat is usually adequate with a daily vitamin supplement to help improve iron and vitamin absorption. Otherwise , unless you take the right supplements you need at the right times , you can just end up creating some very expensive wee.
Taking any medications and supplements you use should be done with a meal or food ( unless it specifies being taken on an empty stomach ) . This doesn't just protect the stomach and intestines from inflammation , gas or acid but actually helps to increase how efficiently the digestive system absorbs these medications.
Adding fibre to your diet is key to digestive health , along with fluids , but some people do not cope well with insoluble fibre foods , and find this adds to the symptoms, so increasing your soluble fibre can help.
A heat pad on the back , gentle exercise like walking or stretches, a warm bath or shower , or relaxation and mindfulness techniques like breathing exercises all help reduce the intensity of this sort of symptom , no matter what causes it and it can reduce the amount of times it flares up if you had this sort of Self Care into your daily schedule. These techniques can also help in your Pain management too.
If you are diagnosed with IBS , medications like Buscopan can alleviate the symptoms , but is better to have it prescribed by your GP after being diagnosed first. There are other supplements that can be tried but until you know what you are diagnosed with , and without knowing if you have constipation , loose bowels or a combo of both I would not feel happy to recommend them.
I hope these tips help until you get some firm answers , Bee
You are so right about self care. Part of my new year goal is to spend more time on me, diet, relaxing etc. would love to go walking but my knee surgery has been put off until it’s safer to get it done. Also my stomach is so heavy it’s putting strain on my back and I can’t stand for any length of time. Am an absolute wreck. Thinking of getting one of those upper body cycle things on eBay. Ha!
Perhaps a gyn exam is in order?
I have ongoing investigations including a..... can't remember what you call it but used to detect pregnancies.(see my memory is crap too), Endoscopy, colonoscopy etc.
Are you taking a PPI like Oneprazole or anything else in that family of drugs? I was so bloated my abdomen was stuck out and the gas kept me awake at night. And it actually affected my breathing because I have restrictive lung disease from scoliosis and asthma. I cannot take any calcium supplements; every single one of them bothers my gut. I have to do dietary calcium. I’m following the micronucleus bone density protocol which has reversed osteoporosis in me despite taking prednisone. I’m taking strontium citrate only 340 mg,vit K2 and dietary calcium.
You know, you might have something there. My stomach has been distended for some time but it really became extreme when they asked me to double up on my omeprazole dose as I was having really bad reflux and nausea. I lie flat on my bed and you know how the flab is supposed to flatten out a bit or fall to the side? Well my stomach is like a solid dome shape which does not change when I lie down and the strange squeaks and groaning noises, OMG its like a rave or an orchestral condert is going on in there all through the night. Even the cat picks up it's head and looks as if to say wth, ha! It is all pressing on my organs including my lungs as I get so easily out of breath, this is something that I was definitely not used to. I can't even bend down to fix my shoes or look under something. This has only started since pred came along. I have to stop taking omeprazole for 14 days before my colonoscopy so it will be interesting to see if that makes a difference. Interested to hear more about what you are doing through nutrition. May be something I might have to consider. I also take 2 pony cubes of adcal a day and they definitely don't agree with me.
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