Pmr and homeopathy

[Shandon1]

Has anyone found homeopathy helped with PMR. Down to 4mg pred but at times exhausted, bad urination and sleep!

[PMRpro Ambassador]

I do know one lady was told by her homeopathic practitioner that there wasn't a remedy although she might find something that helped a bit.

How fast have you dropped from about 8mg to 4mg? If you have gone too fast your body may simply not have caught up making cortisol, the body's own natural corticosteroid. It has to start production again at about 8mg and below. That is part of the reason we emphasise the slow reduction. Some doctors like to keep patients at 5mg for months, one I know suggested 9 months I think, and that allows your body to catch up. You may be making enough for most of the time but if you try to do too much it will fall short and you will be very tired.

[Hidden]

theguardian.com/science/201...

The latest report to write off homeopathy is published by Australia’s National Health and Medical Research Council. After an extensive review, it found that “there are no health conditions for which there is reliable evidence that homeopathy is effective”. It went further, adding that homeopathy should not be used to treat health conditions that are chronic, serious, or that could become serious, and warned that people who used the preparations could put their health at risk, by rejecting or delaying more effective medicines.

[Celtic PMRGCAuk volunteer]

Dubliner, I didn't try homeopathy during my PMR/GCA/steroid days, but what I did try was a diet containing lots of anti-inflammatory foods, avoiding or reducing all processed, refined foods, coffee, sugar and alcohol. Gentle exercise is also important, especially a daily walk in the fresh air. Now that the evening are going to be lighter, an evening walk will help you get a good night's sleep - if you're struggling with poor sleep, that will add to you feeling "exhausted".

Perhaps you could try increasing your dose back up by a couple of mgs in case your tiredness is simply due to your inflammation not quite being under control. If your bladder problems have started just recently on the lower doses, that could also be a sign that your inflammation is still lurking - PMR affects the muscles, and the bladder is a muscle.

[Charlie1boy]

I was advised at the weekend to go on a gluten free diet. No problem for me as my wife is already on gluten free, but I am sceptical it would make a difference, as I have managed to live my 75 years without any digestive problems which might have been caused by gluten!

Does anyone have any thoughts about whether going gluten free would help?

[PMRpro Ambassador in reply to Charlie1boy]

I was effectively gluten-free when my PMR started as I have a wheat allergy and in the UK you can only avoid it by doing gluten-free. I've done leaving out gluten, alcohol, nightshade veggies and now all processed and most other carbs (though I admit, never all at the same time). The only one that has made any difference is the carbs - very low carbs has allowed me to lose about 18kg in weight in a couple of years while still on pred, initially at 15mg.

There is some thought that gluten-free can make a difference to things other than the gut and my wheat allergy is more like dermatitis herpatiformis which is a form of coeliac disease. And of course - if it is modern wheat causing the problem then it will be dealt with by going gluten-free (unless Juvela is still allowed to market their "washed wheat starch" flour - I'm allergic to that too).

[Celtic PMRGCAuk volunteer in reply to Charlie1boy]

Charlie, one of the members of PMR/GCA support group decided to try and help her hubby resolve his long-term stomach problem when all else had failed. The first experiment was to try him on a gluten-free diet, and she decided it would be easier if she followed it too. His stomach issues resolved...........and to her amazement she suddenly found that her PMR pain was much improved and she felt really well. I suggested she might like to give a talk about her diet to our members and one is trying it with great success so far. She even produced some gluten-free cupcakes for our next meeting just to prove that gluten-free didn't have to be boring......they were delicious!

I didn't have any need to try the a gluten-free diet as I was already hooked on/and doing well with a diet of lots of anti-inflammatory foods.

[Bailybiscuit in reply to Celtic]

I have been to a homeopath and had all his treatment for 3 months.I had pmr but it didn't help and I also developed sero negative arthritis and osteo arthritis while taking his potions. I was never able to lower my steroids which was my aim of being on them so decided to stop as it was expensive.

[PMRpro Ambassador in reply to Celtic]

Gluten-free jaffa cakes are better than normal ones - just saying like

I have some wonderful naturally gluten-free cake recipes. Anna Conte's Torta Paradiso made with potato flour is arguably the most delicate sponge cake I have ever made (miss out the breadcrumbs to line the cake tin) and makes it worth buying the book: The Classic Food of northern Italy.

Nigella (bless her heart) has a clementine cake to die for nigella.com/recipes/view/cl... and the lemon polenta cake link to the side is rather yummy too.

And if you go gluten-free and then want to go on holiday without difficulty in finding food you can eat - come here to northern Italy! There is a high rate of coeliac disease here - even my village pizzeria keeps gluten-free flour in the cupboard to make fresh pizza - and they can all come up with something safe.

[Charlie1boy]

Thank you PMRpro and Celtic for taking the trouble to reply re glutèn free. Your comment on modern wheat certainly resonates, and I know many people feel the same way.

I have restricted carbs, but not completely, but I am happy not to have put on weight since I started on steroids in January this year. I am more concerned with keeping sugars out - not easy when I have a sweet tooth, but who said having PMR was easy?

Think I'll give gluten free a go. It certainly won't harm me, and if it does help, so much the better.

Thanks again. You are both so incredibly helpful.

[PMRpro Ambassador in reply to Charlie1boy]

Read my reply to Celtic too.

I also meant to say that even the NHS page on coeliac disease mentions the wheat problem and that some people are unable to eat wheat but can eat spelt which is an ancient form of wheat. I can also eat kamut which is very trendy in Austria and available all over the place here too. They also mention that many people with wheat problems are able to eat French bread which is made with soft Canadian wheat which has a different structure - and accounts for the week I spent in France with no choice than to eat bread and pains au raisins not leaving me itching for weeks afterwards!

As for keeping sugars out - it's the first 6 weeks or so that are hardest, by then your taste buds have all been replaced so aren't used to sweet as long as you were good for that long. Now I struggle with something sweet.

[Prd2122]

Hi Dubliner,

Like Charlie, I have been trying to follow an anti inflammatory diet. Also gluten free (but I'm not religious about it - I had a gingersnap cookie yesterday) I am also drinking 1 cup of coffee a day - I have read that caffeine should be eliminated. It only makes sense that our diet is incredibly important to our health. I make a drink with turmeric root - which is supposed to be anti-inflamm. I have been working with an acupuncturist and a naturopath. Presently I am trying low dose naltrexone - in large doses it treats addiction, but some studies are indicating in low doses it acts like prednisone but without the side effects.

I have been self treating since Jan. I think I have PMR - the sore arms and shoulders, and the sore/tight hips (I can no longer get up and down off the floor without help) but I walk every day, I have energy and feel positive. I finally went to my GP ( a young Dr.) and today go to get my test results.

I don't sleep well, but find relief with heat, hot showers and a spray that relieves the ache.

I just think prednisone has WAY too many side effects at least for me - my condition doesn't seem nearly as severe as others I read about online.

But I am tired of the constant discomfort and achy arms.

[PMRpro Ambassador in reply to Prd2122]

I managed PMR with no medication for 5 years - it was OK, never a day free of pain but not severe. Bowen therapy, Pilates and aqua aerobics kept me mobile-ish. Then it hit like a 10 ton truck and I was immobile and for over a week barely able to get out of bed. The bursitis also because far worse and I could walk only short distances.

You don't know what side effects you will get until you try. Even then, different forms of corticosteroid are different: medrol was awful for me in terms of side effects and wasn't particularly effective whereas prednisone has been fine and I have lost all the weight and everything else is back to normal. Prednisolone at the beginning was also not too bad.

[Charlie1boy]

Yes PMRpro, we found that spelt flour was ok, and I used to bake this regularly for my wife. However, we now get Genius gluten free bread, which, although it is costly, is a bit easier, or, should I say, lazier! Also, following your theme, an old school friend of my wife, who lives in France, always gets problems when eating English bread on her visits over here.

I take encouragement from what you say about sugars; in fact, it is easier now than it was to start with.

Thank you, as always.