PMR Alternative Therapies

Hello Eileen and Annie

I have a \"vacuum cleaner person\".....my poor put-upon hubbie! I realise I'm very lucky and spoilt! However, he only thinks about cleaning windows when I get fed up with not being able to see out of them and he sees me starting them!

The sun has found its shine here again today so can turn the heating off (I've been freezing for the last couple of days) - dread the bills!

MrsO

I was allowed to\"manage\" my reduction but messed up at the last minute, but coming from 2.5mg to 0 too quickly (also the GP said no need to reduce by half mgs). Initially was on 15mg, and the hospital consultant said to drop to 10mg after 6 weeks. Then come down 1 mg every six weeks if possible. I ran into problems with non coated pills, and dropped from 7 to 5mg over night as I could not tolerate the heartburn any longer. Long ago gave up on the Aledronic acid stuff.

From May 07 to janury 10 I got down to 2.5mg, and then rushed the last bit. Ended up back on 2.5mg after almost 2 months off as the pain was almost unbearable and in places not suffered before! This time round, I will be coming down half mg every six weeks, but for the time being, am staying put on 2.5mg until I feel a bit better. Suffered really badly with tearful, crying spells and feeling unwell, also two viral illnesses and infection requiring antibiotic. Learned my lesson and much as I hate taking steroid, will let it rule me for the time being - not totally painfree at night, but the daytime is so much more bearable - you don't realise how bad the pain is till you get rid!! Good luck

Hi Girls Everyone,

Mrs O.....I did get the Honey it was on offer factor 12 + with UMF on the label, I also brought some Wheat germ too like you suggested, and mixed it all up in my live yogurt for my breakfast this Morning, I do like the taste of the live Yogurt on its own, but I will try anything and if it will be good for the Immune System then I am all for it, and it tasted very nice too so thank you Mrs O for the advise.

Eileen.... I am learning if I do too much I am wacked, I don't mind ironing at all like you, but it takes it out of you I agree, a bit of dust is ok with me just do the important things work tops etc.

Yesterday was the first time I have been out into Town for 4 Weeks, I decided a visit to the Hair Salon and to get some highlights done that would be good for me so I made the effort, I did walk rather a lot, and today I have paid for it, I feel really stiff and achy I have never had pain in the calf muscles before like the pain in the upper arm muscles, but today I have some pain in the calves and my legs are burning a bit too, and its the tiredness as well, today has been the worst day so far, I could sleep for England, I have had a couple of times I have laid awake for a little while but I am sleeping very well at the moment.

I know that if I feel like this just to rest and not over do it, but its hard when you have been so active and done it all, but I will listen to my body that's a must, its all learning curve for me at the moment.

Best wishes

Annie

Hi AnnieP!

It's not just listening to your body AFTER the event!! You have to remember the lessons learned! As I keep saying to my husband - even laboratory rats learn by experience ;-) It's a case of saying - right, I'll get of the bus a stop early. If that works, next time try 2 stops. A bit like going down the steroid doses, if you go too far, go back to the last successful level!

I guess I was quite lucky in that I hate shopping and hairdressers for anything more than a good cut! So there's no incentive to go into town! My hairdresser is within a few hundred yards of a carpark in a small village - never a lack of spaces! Me - I still can't do too much in the way of stairs.

And I don't know where you live - but the weather in the south of England at present is enough to make anyone with PMR feel yuck I should think. Could you all please order something better for next week as we're leaving for GB for 10 days tomorrow! ;-) I get to meet MrsK on Wednesday in Newcastle - I'm really looking forward to it. :D

all the best,

EileenH

Hi Eileen,

Thank you for your reply.

I am learning this is all new to me and you have given me some good advise thank you.

Yes I live in the South of England in Essex, and the Weather is not good its not like Summer at all, were has that sun gone .

I hope you have a wonderful time when you come to England and enjoy your stay and I hope the weather improves for you.

Best wishes

Annie

*Where* not were ops spelling.

[b:55adba9201]Hi again Annie[/b:55adba9201]

Oh I'm so sorry you've had a bad day today after overdoing the walking yesterday. I remember when I was first diagnosed I used to make the effort to walk every day (still do) just to try and keep some strength in the muscles but if it was a bad day with the pain and stiffness I would only do 5 to 10 minutes. Gradually I was able to build this up but always stopping if the pain worsened. Hopefully, if you've given yourself an easy day today you will feel better tomorrow. Good to hear you are sleeping well though as that can be a problem for many of us. :zzz:

Good to see you managed to get the Manuka honey on special offer - it's so expensive I always look out for the \"buy 2 get 1 free\" offers.

Never thought I'd still be saying this in May but keep warm.

[b:55adba9201]Hi Eileen[/b:55adba9201]

I should bring your thermals when you come to England - it's been so cold today that I nearly resorted to my longjohns again! Say hi and a hug to mrs k for me, please. :hug:

MrsO

I have had PMR for about 7 yrs I have just come off steroids but am on Methotrexate ,which has caused my bloods for liver function to be abnormal .

I would love to give this up as well but my ESR is at 63 and the docters are saying it is dangerous to have it that high .

Hello Dessie and welcome to the forum although I am sorry for the troubles you are experiencing with your PMR.

I can understand why you have been prescribed Methotrexate if the steroids have not been keeping the ESR at normal levels and the pain and stiffness under control. However, I can understand your concern if the MTX is affecting your liver and, hopefully, your GP and/or rheumatologist will be keeping a close watch on this.

You will possibly have read of other people on this forum who are trying to manage their PMR without steroids but I think any success there is dependent on how mild or severe their PMR is. Certainly, diet is of paramount importance, including as many known anti-inflammatory foods as possible, such as oily fish, beetroot, garlic and turmeric.

I'm sorry I'm unable to help with advice re MTX but perhaps someone else reading your post who has experience of this drug will join in.

Do keep in touch and let us know how you get on.

My very best wishes,

MrsO

hello all

Just trying to catch up with the posts after my holidays I started Turmeric tablets a few months ago ( after Turmeric was reccommended on here ) They are available from Holland and Barretts and they have lots of 2 for 1 on so I just keep my eyes open for these

I am taking the non enteric coated tablets now My Dr told me they had been advisded to try them with patients as the enteric coated cost 10 times as much She showed me all this on the Computer So far so good but she said I could have the others if it caused problems I had already had the 1mg without a problem

The only diet advise I have read re steroids is to cut the carbs and to increase oily fish etc

I have now had my holiday and am now serious about tackling my weight gain If I dont I shall soon be wearing black plastic sacks !!

I have been taking Actimel for a while now but will be investigating all the other options in the supermarket Wouldnt have time to work now with all the extra investigations you have to do with PMR !!

Best wishes to all Mrs G

Hi Mrs G and welcome back from your Spanish holiday where I'm sure it wasn't difficult to find a lot more sunshine than we have been having here! Do hope you had a lovely time and have come back feeling refreshed and raring to go!!!

As you're thinking of checking out options other than Actimel, do look at the organic live fat-free yoghurt. Actimel, I believe, is quite loaded with sugar and, as you say you are going to tackle your weight, then the yoghurt as opposed to the Actimel would help in this direction - it is completely natural with no sugar and no additives, plus it would help to outweigh any risks from the uncoated tablets you have now been asked to take.

Snap with the Turmeric......I've just had it in my dinner and I'm just starting a reduction to 1.5 so perhaps I should add the spice to my breakfast and lunch as well! :lol:

MrsO

Hi Mrs O

Very pleased to hear you are now reducing to 1.5 I did spend a whole year on 1mg when I had PMR before but at that point I was down from 20mg to 1mg in a year !! I wish this time was the same !!

Yes we had a great holiday in Spain and the warm weather helps a lot We didnt lay any plans in stone so just did what I felt happy with and I did walk a lot so I was very pleased with that The travelling is tedious but has to be done I am missing my siestas in the sun this week

I was sat at my computer Monday and when I got up my knee locked I couldnt put any weight on it and I had all the muscle pains behind my knee I had had before Xmas !! I was very upset with it but I used hot water bottles wheat bags and tried to do all the exercises the lady who gave me hot stone massages to cure it had given me I thought I was going to have to give out an SOS to her ( Its an hour at least drive from me !!) but luckily with the warmth and the exercise I am now back to normal Im sure the sun and warmth is better for all of us with PMR

Yes I am off to the supermarket to investigate the Yoghurts and am serious about getting the weight under control I felt so low mentally in Jan when I ended up on 15mg after getting to 4mg in Dec but I feel more positive now I have for years taken Probiotic tablets but that wouldnt have the same effect for lining the stomach ( well I dont think so )

I think I have mentioned before that my horses were always given probiotics after antibiotics for at least 20 years by the Vets Im sure my horses painkillers for her arthritic pain would do me a power of good !!

Best wishes with the reduction

Mrs G

Hallo again, Dessie

I THINK that I have replied to your message that was in my 'private' box. Never had one of these before so amy not have got it right. I have the feeling that maybe you did not really mean it to be private as it was just a friedly hallo and please speak to me message. Well I have answered but if it does not appear in your box add a reply on this thread and I'll find it. If it has got through let me know ( same way ) andIll know that's one more bit I've got right. Betty

"Why not try 12.5 or 10 (depending on your tabs, no cutting enteric coated remember) and see if there is any pain and drop again if there isn't until you DO have some return of symptoms? In my experience as long as you go back up to the previous level at which you were comfortable fairly quickly you don't need to go any higher - does that make sense? Have you tried my alternate day version? That might give you at least alternate days where you feel better as we excrete the steroids within hours although the anti-inflammatory effect lasts for up to 48 hours - but I don't know how long the neurological effects last. If you could get to 15mg/2 days quite quickly that's halving the dose you're on at the moment, isn't it? "

Hallo Eileen and thanks for advice. I have today reduced to 12.5 ( I don't need the coated tabs so no problem there ) Won't know for a few days if this is ok. Here's hoping.

For the last 2 weeks I have been VERY active and had far fewer jazzed up sessions and also slept pretty well for a Pred. taker. Wonderful!

I don't understand much about the HPA cycle. Is it invariable? I sometimes think that my body goes on making cortisol even when I am on highish doses of steroids. Is my brain sending the right messages to the adrenal cortex ( is that right? ) or could I be getting a double dose so to speak? Will continue to follow your recommended schedule and keep you informed.

PS the oat bread is very good. Made more yesterday.

Dammit, I forgot the second Quote click again. First para is the quote, of course. Sorry.

Hello Betty E.

I was really interested in your mentioning that you feel as if you're getting a double dose of cortisol sometimes. I've noticed several times that when I've had a really busy day physically - and expected to sleep like a log - the reverse has happened. My mind has been racing away and I want to get up about 2.00am. I've really felt as if I've been on a double dose of something!! Actually I'm just coming down to 10 mg. pred.

I haven't posted for ages but have found everybody's comments so helpful so there's not much to add!

Wish someone could magic up some warmer weather though - I thought we were promised some! Green granny