PMR Alternative Therapies

Thanks so much, Eileen. Much to consider and think about. I'll be back and keep you informed. Betty

Hi Betty!

Next thought: I assume your doctor does fasting blood sugar levels, does he? I need to go and see if I can find info about how steroids affect the way the body produces insulin - they do have an effect on carbohydrate metabolism and in some people puts them into a quasi-diabetic state, hence the need to monitor blood glucose. However, when I first worked in the labs in the NHS I remember there being something about how for some people a fasting BS was of little use except in frank diabetes and we used to do loads of glucose tolerance tests where the patient was given a measured amount of glucose (in the form of Lucozade) and the BS was measured at intervals over a few hours. The resulting graph was supposed to have a specific shape and divergences indicated if other tests were needed.

There is something which used to be called \"dumping syndrome\" where the body produces too much insulin in response to a carbohydrate meal and this results in a peak of glucose in the blood (from the meal, inducing the production of insulin) followed by a very rapid fall to lower than normal (because of the excess insulin) and then a slower recovery back to normal levels. This may be a cause of the craving for sweet things some people experience - and the result is a see-sawing of the blood sugar level if it is sugary sweets and/or cakes which will just cause a vicious cycle to become established. It's not normal - but only continuous monitoring (definitely) or samples taken every half hour (maybe) are likely to spot it.

In some people that is associated with feeling dizzy and sweaty - my mother always felt like that if she had to wait too long for a meal after the time at which she was used to eating. It was never investigated so it might have been a mental fixation on the concept of \"having\" to eat at a specific time or it's bad for you. But if you eat a meal that is protein-rich and carbs-poor there will be less of this high/low swing - if that is what is happening.

Exercise also has an effect on how our body metabolises food which might also account for how you feel better when you've exercised. There is also lots of evidence now to suggest that a lower carbs diet is helpful in weight reduction - not Dr Atkins's no carbs diet which is too extreme, but starting the day with bacon and egg rather than porridge for example and German doctors have said for quite some time that if you want to lose weight, the evening meal should have as little carbohydrate in it as possible - for example, lean meat and salad is ideal but very unlike the usual German bread-based evening meal. And of course, a diet like that was originally the only way of dealing with diabetes before insulin was developed as a medication.

So there you are Betty, more to digest

The other thing is: my palpitations and sweats problems start at LOWER steroid doses, I felt full of beans at 15mg but not anxious etc as you describe, that must be really yucky,

EileenH

Thanks Lizzie and Mrs O that's a good idea keeping a record I am on a learning curve here.

I know my first ESP result as the Doctor told me it was 65 I don't know what is normal for the ESP result though is that high 65?, the CRP test was normal though and I have a bit of anaemia, so I have kept that on record now and the date I started on 20 mg's per day of the Steroid's.

Had a bad day today though is that normal? I have been on the Steroids 2 Weeks this Thursday, I was very stiff when I got up and had a bit of trouble walking but that improved as time went on Today.

I did ask about the red coated tablets, the Doctor said that they do not absorb so well in the stomach?, and he said he will start me on some acid medication for the stomach, and some calcium tablets and vitamin D tablets next Thursdaym when he wants to see me again, having a blood test before my Appointment on the 13th of May, I have now applied and paid for my exemption Certifiable as I still pay for Prescription's.

The Doctor said I was in the lower age group for PMR I am 58, but reading here there are People with this younger than me.

Annie

I came up as a guest on my Post above I forgot to put Annie-P, ops.

Hi AnnieP,

ESR normal levels are about up to 30-ish at our advanced ;-) ages! So yes - 65 is pretty high. Mine is 4! My CRP is also stubbornly normal. I too was told I'm too young for PMR at 57 after having it for about 5 years - I'll restrain my language for public consumption - and I am convinced the only reason it tends to be diagnosed predominantly in over 50s (by some over 60s) is because they're not looking for it and that it remains under-diagnosed in younger patients. We also tend to be atypical in the way we present, putting it down to the menopause, working hard and being older, looking after the grandchildren etc - and only the really severe cases are registered.

And yes - having the odd bad day is absolutely typical. What had you done the day before? What was the weather like? all sorts of things affect you the next day.

And guess what I was reading on Sunday on the internet - that's right, tablets versus pills and the evidence!

The enteric (red coated) tablets: yes they don't absorb as well from the stomach - that's because they are designed with the coating so that they are absorbed further down the gut supposedly to prevent the gastric complications. However - what the dr probably really meant to say (I'll allow him the benefit of the doubt) is that the enteric coated pills are absorbed more variably and it apparently takes longer for a stable level to be reached in the blood. The total amount absorbed is the same but instead of the blood level going up quite quickly and falling quickly, the rise is slower, it stabilises and then falls more slowly. In some diseases where steroids are used as the treatment this is a disadvantage and the effect is not so good - it all depends on you and your disease!

It is also said by some (in several studies) that there is no real evidence that using the enteric coated pills prevents gastric irritation because the development of the gastric ulcers is not due to mechanical irritation of the lining of the stomach but is an effect of the steroids being in your body (I suppose a bit like the effect of stress making you produce more acid and so doing the damage). The drug company makes lots more money out of the newer version of the pills - so they have a vested interest in drs prescribing them rather than the cheap as chips uncoated ones. The recommendation from health authorities (all over the world not just the NHS, in fact) is that the better option is anti-acid medication combined with the plain tablets because they are more evenly absorbed by the majority. I also noted that it is recommended that the enteric coated ones are taken on an empty stomach 2 hours before a meal to improve absorption - I don't and am doing fine with them but I'm just experimenting with some uncoated tablets to see if there is any difference - will report back later!

Remember - don't take your calcium and vitD tablets within a couple of hours before or after your steroid tablets as that will also affect how much you absorb. Nor should you mix antacids with most things! You'll need an Excel table to record the times at which each tablet is to be taken :roll: I have to agree with MrsO that yoghurt is a good thing though.

all the best,

EileenH

Hi again Annie

I think Eileen has said it all in her post to you.

However, do not worry too much about the anaemia as I also became a bit anaemic during my first year with undiagnosed PMR but once the inflammation subsided the anaemia problem resolved. Hopefully, this will be the case for you as well. In the meantime you could perhaps add to your diet foods known to contain iron such as spinach and watercress.

Very best wishes,

MrsO

Hi Elieen,

Thank you for your reply.

I will do what you said about the stomach Medicine etc when the Doctor starts me off on them next Thursday.

Yesterday I done a huge pile of ironing I don't mind doing it at all normally, then this PMR hit me for six, but it took me ages and ages I did slowly it might have been that?, I do seem to get tired lately, I am going to get a little light weight Hoover as my Dyson I can't hardly lift it its so heavy, shopping on line at the moment too, as I still feel a bit rough but its early days, I have had good days and some not so good, and its a learning curve, and not to over do it and listen to your body as suggested by Poster's on here, I have always been so active too, so I am going with the flow not over doing it at the moment, and to think positive too.

The Doctor said it will be about 2 Years of Steroid's, I don't like the idea of taking them, but I am all for taking them if I can get about and be free of pain, its a nasty thing this PMR a little devil, I had never heard of PMR before.

I am going to get the Honey Mrs O suggested, and I do have live yogurt and yakult first thing in the Morning, then I take my Steroid's with water then have the rest of my breakfast.

I will look for you report on the enteric coated tablets.

Thank you for your kind reply, this Site has helped me so much.

Best wishes

Annie

Hi Mrs O,

Thank you for your reply.

I do eat spinach in a lovely pasta dish that I found last Year, I am a vegetarian, I do like watercress so I will eat plenty of that.

I do take Ferrograd Folic every day anyway and the Doctor said it was fine to continue with the Ferrograd Folic while on the Steroid's.

I am going to try the honey you suggested in my live yogurt in the Morning, and I know you said beetroot is good and beetroot I love beetroot.

I also read a low carbohydrate diet is better for you when you have PMR is that correct?.

Best wishes.

Annie.

Enteric coated or no Enteric Coated.

I do not have much to say about this - said it all before.

What I do have is personal experience, my Mother had PMR long before enteric coated - result, gastric ulcers, blood transfusions et al.

I insist on enteric coated - OK they are more expensive, but I am not going to risk anything else.

Annie P you could take a look at www.pmr-gca-northeast.org.uk

But this site is great for asking the question.

Hi Annie

So it sounds as though you are already on a good diet as regards iron for your anaemia - your Ferrograd Folic sounds excellent. I do add wheatgerm to my muesli which contains folic acid and E-vits.

With the Manuka honey, make sure it's Factor 10 and has UMF on the jar - that guarantees the Factor and I'm not sure that the supermarket varieties have that mark. Expensive but worthwhile if one can afford it as it is so great for the immune system whilst it is being depleted by the steroids. I have taken it for many years and was concerned about the sugar content when I first went on the steroids because of the slight diabetes risk. However, I decided to reduce every other sugar intake (apart from fruit), in favour of the honey, including reducing the sugar in the home-made teabreads! Three plus years down the line so far so good. The diabetes risk is probably lessened anyway if there isn't a family history of it.

As for your query re a low carb diet with PMR, this has been a favourite topic on here. It seems that eating too many carbs whilst on steroids can encourage weight gain and that has certainly been my experience.

Another excellent anti-inflammatory which I first came across several years ago is Turmeric. At that time I read that the pharmaceutical industry was considering making it into a pill because of the discovery of its anti-inflammatory properties; however, that will obviously take years to come to fruition if ever! It is possible to buy turmeric pills from the health shops but I prefer to just add it to meals such as casseroles, risottos etc. You will probably already have read of the anti- inflammatory benefits of oily fish on here.

Must go now.......off to the dentist (ouch!) - keep losing the enamel from my teeth which the rheumatologist says is caused by the steroids!!!!

Very best wishes,

MrsO

Hi Annie!

Bet it was the ironing! Standing and gripping the handle and moving it back and forth means using lots of muscles. I actually quite like ironing as long as there's something decent on TV that doesn't require too much concentration - but it does take it out of me so I do as little as possible. The other thing that absolutely finishes me is windows or anything else where you are moving your arms around.

Which brings me nicely to vacuuming (arm movements) - ages ago I posted something that someone said they had written out and posted on their frig:

DUST IS VERY PATIENT, IT WILL ALWAYS WAIT!! :D

Learn to accept a bit of dust, concentrate on what is important like clean kitchen surfaces - unless of course you eat off the floor! The time will come when you are able to do more but don't force it. And the best present anyone could give you - a cleaner (person not vacuum!)

best wishes,

EileenH