Hi - haven't used this site for some time. Have been battling to come off steroids since diagnosis in 2007 - finally down to 2 mgs - made much better by retirement last year - a chance to listen and respond to my body needs!!
Agree with all the comments about the changes to this site - I certainly could not have gained the support and comfort it used to give me in the early days when all I could manage to do was sit in front of the computer and press a few buttons - just knowing what I was going through was normal to other sufferers, kept me sane. I find it so difficult now to follow what the disucssion is and whether it meets my neeeds - I certainly couldn't have followed it in the early pain brain scrambled days.
Enough of complaints as I realise they are trying to sort things out for us, and it is not the fault of the computer experts that we are not computer wizz kids ourselves!!
My question is, despite being on such a low dose of steroids when presumably I am also producing my own cortisone as well by now - Why do I pick up every common cold and cough that is going? Has anyone any ideas for prevention - someone once told me I should increase my steroids when i get a cold but i don't particularly want to do this as am desparate to try and finally get off them and it has taken me till now to get this low.
Has any one tried echinacea and does that combine well with steroids - one claims to boost the immune system but i thought steroids surpress the immune system - can anyone expain it to me?
Await your replies with interest!
Gill
Hello Gill
Glad to hear you're winning the "battle" and now on 2mgs!
It's possible that the reason you are going down with lots of coughs and colds is because your adrenal glands are still trying to get up to speed again and produce their normal supply of cortisol after being suppressed by the steroids.
I don't know whether or not Echinacea would interact with steroids (the pharmacist is the best person to ask) but I have read that it can cause flares in auto immune disease and if that is the case it may well be best to avoid it.
If you don't already eat Manuka honey, then that is well worth a try as it is known to help the immune system plus it has many other health benefits.
Do hope this is of some help.
MrsO
Hi,
You probably aren't going to like my reply (!) but I can guarantee it works and you will feel much better in time on many levels. Before you have hot water in your shower or bath, have cold water on the body for 15 seconds at least. Cover the whole body, front, back and sides, including lifting the chin to get into the throat. Do these first thing in the morning, and then after work or after being out in busy areas. I also do one last thing at night. If you have a cold, do more of these. You can use a shower cap.
At the beginning when you first start doing the showers, your body will rid itself of stagnant energy which can manifest in old symptoms such as colds etc. However, once you have done the showers for a few months you will find that you rarely, if ever get colds. The cold water helps improve circulation and also boosts your immune system.
I have worked with clients for several years and was taught this powerful technique by my teacher, who has used it with hundreds of people with great effect. Make sure you stay warm afterwards obviously.
Would love to hear your feedback, but you need to do it continously, i.e. not just when you are ill. I've been doing them for 4 years and stay very healthy.
Some of my clients have said 'I can't do them, it's too cold'. This is an excuse! Of course it will feel painful at the beginning, but the more difficult it feels the more that the cold showers are needed.
cheers,
HH
HH
Your recommendation might well "boost the immune system" but have you tried it when suffering from a very painful long-term auto immune inflammatory condition in all your body's major muscles?????
MrsO
Mrs O, No I haven't. Gilib asked how to deal with colds with and I gave a suggestion taught to me by someone who has worked with hundreds of people, some of whom have been seriously ill? It's true the cold showers can feel painful, even for healthy people. I guess it's about trying it for ourselves to see what the effects are over several weeks?
actually just to correct what I said, for most people, saying it's too cold is due to not being used to the cold. It feels painful because its a new sensation and because it's not a nice sensation after years of using hot. Some people need to start by trying cold water on hands and feet and for the very frail and very old, you wouldn't suggest starting cold showers. Also obviously if people have spasms in the muscles if they do the showers, then you might just do hands and feet and see how that goes.
Cold showers won't work for those suffering with PMR or muscle pain/weakness. Many of us PMR sufferers have to take HOT showers just to loosen up to get moving in the morning. Cold showers would be counter-intuitive!
(needing one of those smilies with rolling eyes)
I have been on steroids now for over 3years and am on about my third attempt at 2.5 !!
Last year bad throats which led to colds drove me mad I was spraying with a throat spray and useing First defence for my nose constantly but couldnt seem to shake them off I spoke to the Dr about my throats as BIL who is Ear nose and throat in Italy said I needed a swab and a specific antibiotic My Dr did say she would send me for tests if they continued but at last they stopped ( I hope !!)
I have been surrounded in the last few months with people with chest infections , heavy colds and Ive been fine Even flying away at Xmas I was OK as the last few years you could guarantee I would catch something by the time I got back
I can only think it is my immune system which has improved as I havent changed anything else I do eat pleanty of fruit and vegetables Yoghurt and take Vit C but I did that last year
I can only hope that the same will happen to you your own immune system will take over again
Thanks for the suggestions and good wishes - I hope that i improve as you did Mrs G. Meantime I am drinking lemon juice to help with the symptoms - don't think baby sitting for the grandchildren helps with picking up infections but it is my joy and I am just so pleased to be able to do it - really didn't think I was going to be able to do so when I couldn' t move!!
As for the shower suggestion HH thank you for replying to my question - am sure it probably may help some people and perhaps at a later time I'll give it a try but as mrs O explained the cold is one thing that most people with PMR cannot cope with.
Oh well - the tissue box is calling yet again. Wonder if anyone has been advised to increase the steroids temporarily when under infection - there is still so many things we don't understand.
Gillb
"Wonder if anyone has been advised to increase the steroids temporarily when under infection"
Whilst I have heard that it is quite popular these days for someone with something like a severe chest infection to be given a short burst of steroids alongside antibiotics, I don't think it would be a good idea to increase the dose for the "common cold" that you describe. As you are unfortunately suffering from a lot of such colds it could mean that you would be increasing the dose quite frequently. With PMR, many people who yo-yo the dose get into a situation where they can find it even more difficult to reduce.
When suffering from any infection or generally feeling 'under the weather' the important thing to remember is to remain on the present steroid dose and not reduce until the body has recovered.
You mention drinking lemon juice and I wonder if you just do this when you actually have a cold? I drink squeezed lemon juice in warm water each morning before breakfast and have done so for some years. It is supposed to be a good detox and has lots of other health benefits, including helping to maintain the body in an alkaline rather than an acid state. Together with a daily spoonful of Manuka honey and 'live' (probiotic) yoghurt, it might just help to protect you from so many colds - granchildren permitting!
MrsO
I use mouthwash several times a day and it seems to kill the bacteria that cause colds in my mouth. I could never have a cold shower. So much pain and cold really makes it worse.
How about having ground fresh ginger lemon juice and when it has " stewed or brewed" putting some manuka honey in it ??
I forgot until you mentioned it that I have been having ginger and lemon quite a lot in the mornings this winter
I was convinced I was going to carry on this winter with the throats as such good friends have had it all and I used to think Oh NO ! Im going to get this as well when I met up with them but so far so good
I did get to the stage that all the cough and cold remedies were making me feel sick so did research on the net and found some throat sweets that singers use made of Slippery Elm ! American I think I got them from a singers shop ? and I got my throat spray form them also Always use that when Im flying
Large doses of Vit C are supposed to help too
Good Luck
Hi all,
Weirdly enough, despite having PMR since the summer (was diagnosed and started on 15g of prednisone daily two weeks ago) this winter is the first time ever that I have had no colds as such, and certainly none of the nasty chest infections I have been plagued with my entire life. Sometimes I feel like I am getting a cold but it never materializes, which is great! I am assuming it is because since September, when I first started feeling awful with what I now know is PMR, I started taking 1,000 mg of vitamin C religiously every day out of desperation, and although it obviously did nothing for the PMR it has certainly helped with keeping colds at bay – might not work for everyone but it certainly seems to have done something for me – touch wood!
Have to agree with the posters that say the cold shower idea sounds awful...
InMadrid
Oh isn't it wonderful when we find something that works for us - long may it continue for you. Lots of best wishes in your journey with PMR too!
MrsO
InMadrid - yes I have had fewer colds since I started on pred two and a half years ago. Just one absolute humdinger last winter after spending 20 mins in a cable car sitting next to a student with the mummy of all colds. He was on his way to the top of the mountain to ski (as was I) - if his mum had been there she'd have given him what for :-) I realised just too late to jump out of the gondola and wait for the next. But even that was gone after about 4 or 5 days. I have never taken high doses of vit C but I do eat loads of fruit and veg all year round. I really don't know why for some of us it is a plus and for others a minus.
As for the cold shower theory - it is something I am familiar with from the things the Germanic nations use for improving your immune system like sauna/steam rooms (I found that seemed to help me not to get cold by the way and was brilliant for PMR pain) and various supplements like echinacea. However, as I remember, they do suggest starting gently for everybody, not just children and the "frail", and preferably not in the depths of winter. Plus, you can do it just by sitting with your feet in a bucket of warm water and swapping them into a bucket of cooler water, back and forth for about 10 minutes, and then making the cool increasingly cooler as you get used to it. Another way is to use the shower head to spray the different temperature water on your legs, below your knees. Luckily the "alternative" techniques are accepted as part of normal medicine here so you are unlikely to find practitioners with no knowledge about any pre-existing medical conditions suggesting something extreme like cold showers.
And now I shall have a minor rant: It's funny how this particular discussion forum existed for several years in its old format without people coming up with wacky ideas that aren't appropriate for us but we've already had 2 since the re-vamp. In case you are looking - this is a place for people to get advice and support when they have specific illnesses called polymyalgia rheumatica or giant cell arteritis/temporal arteritis. Those of us who have either of them, or even both, have enough problems to deal with since we are often considerably disabled in various ways - replies from people who have walked in our shoes and know what it is about are appreciated. Many of us sieze up when the weather drops a few degrees or it rains. As Rick has pointed out - the shower is warm to allow us enough physical flexibility to get dressed before lunchtime. Having a cold is a minor problem in comparison but nevertheless, one every couple of weeks is a pain. Cold showers would be a bigger pain ;-)
I WANT EMOTICONS!!!!!! PLEASE!!!!!!!
Rant done.
Eileen
Good on yer, Eileen - hear hear!
I agree
One of the tips to get your muscles moving in the morning is either the long hot shower or putting electric blanket on
I know ( and Ive had PMR for 6 of the last 10 years 2 bouts ) how different I feel when I am cold and have suffered a couple of muscle strains in the cold as well
I sometimes turn the shower to coolish near the end if I really feel I need to wake my self up to carry on but only in warm weather !
I look forward to my hot shower every morning like a starving person wants food! It's THAT important. It really helps get rid of soreness and stiffness. I get upset if the water seems to only be lukewarm. I'm open to suggestions such as trying cold water--in theory--but in reality, I just don't think I could do it! There's enough discomfort with this disease.....I don't want to add to it by torturing myself with freezing cold water.
I think I've had fewer colds since I've been on prednisone, too. It's very odd. The one cold I did get however, went straight to my lungs--very unusual for me--and I had to take an antibiotic. Luckily I had a sense that something was amiss and went to the doctor so it was caught in time. I think the prednisone has also kept my seasonal allergies at bay. Now that I am down to 4.5 mg I feel the allergies cropping up again, a bit.
Eileen, I wish we had emoticons here, too! Especially the one that says "Gaaahhhhh" ! LOL It describes how I feel much of the time : )
freesia
Especially when you've been fighting your way through treacle to find something and can't! And the process of getting here from the email notification is - well, gaaaaaaaaahhhhhhhhhhhhhh!
:-) :-) :-) :-p :-p
Eileen (I'm told it isn't long until it will be better, just a couple of weeks. It just feels like eternity ;-) )