Possibly a bit left-field but scientists suggest that cold water immersion MAY improve immune system. I think the proposal is that the shock causes the adrenal gland to go into hyperdrive. I suspect that my adrenal gland has gone to sleep and is not eager to get back to work as I go below 10mg Prednisolone...sigh. This is my 3rd year of going below 10mg on various reduction programmes and I gradually seize up with shoulders, back, and hips and increasing brain fog.
I have been craving swimming in Scottish lochs for ages although I know they tend to be freezing cold and I have generally avoided since very young (and foolish?). Have decided to have a cold shower each morning and see what happens.
With the longest coastline in the world, you could have your pick from reliably cold Atlantic to icy Arctic to what I think are not too frigid Pacific waters and the occasional Riveria wannabes like Nova Scotia's Northumberland Shore.... I have just read that Lake Michigan is the most dangerous of the Great Lakes, so if you deke across to the USA you can thrill to the dangerous critters which inhabit that lake - that should stimulate the circulation! 😆
In our house in Durham I used to put a footstool in front of the radiator in the conservatory and sit with my back against it - bliss! Only safe radiator, all the rest were next to doors ...
Whether I'll have the nerve to try it is another question 🥶 . There's more to it than a quick plunge into icy water! And it does look like one's immune system is affected - less inflammatory response, more anti-inflammatory.
Yes, it is meant to stimulate the immune system. I've read up on the Wim Hof method ; I've tried turning the shower to cold at the end of the shower but can barely manage 10 seconds. I really wish I could manage longer.
Ye gods!!!! "....also immersed himself in a tub of ice for almost two hours" It does sound a bit like some sort of cult madness. However Professor Peter Pickkers, of Radboud University Medical Centre in the Netherlands says"Higher adrenaline results in the production of the anti-inflammatory cytokine IL-10 and this inhibits the inflammatory response..."
I believe one works up to a longer time and also that regular folk like thee and me are not expected ever to immerse ourselves for extreme lengths of time.
I'm desperate enough to consider it. Need to do more research though. Not taking the plunge haha without knowing more about what I'd be getting into.... 🏊♀️
The research is the easy bit, you can do that in the warm!! I'm sure I read somewhere, recently, some research that debunked the whole idea and decided that it was actually bad for you, but I have no idea where I read it. I know that I decided, without any scientific reason, that I fully approved of its findings. I think it was sports related, I'll have to do a hunt.
I'm afraid I can't comment on the effect of cold water swimming and it's effects on the adrenals, but I have read about the potential positive effects on the immune system. I'm not a strong swimmer so cold water swimming definitely isn't for me but I did actually have a go for several weeks at turning the shower right down to cold for 30secs at the end of my normal shower. This was to stimulate my circulation and see if it eased some very minor aches in my arms and legs. It did actually seem to work for me, and I felt really invigorated and energised afterwards.
I think you have to firstly ensure that anything like this is right for you though.....for instance, you don't want to be diving into brutally cold water if you have a heart condition!
Definitely worth investigating further though I'd say, and even if it was shown to have no 'healing' effects, (which I don't believe it would) the sheer joy and feeling of invigoration that people say comes with it would maybe be enough to lift the spirits and improve mental health.
Did you mean "that people say" for me?? Sorry, but I'm not sure what you're referring to and wondering if it was with reference to someone else's comment?
I think its good for people to say what's worked and what's not worked for them. Sharing information, anecdotes and advice will inform and educate us so we can make better choices in the future. I think most of us on here are aware that what works for one doesn't necessarily work for another, but by sharing all this information it gives us options.
This is what I have in mind to try myself. Hopefully no-one with PMR will go swimming in the Arctic Ocean! A cold shower AFTER checking for minimal heart disease first! A partial cold shower to start seems even wiser. ......then whisky and a hot water bottle to aid recovery?
pennywAdministratorPMRGCAuk team member in reply to Kendrew
I have always enjoyed having my showers hot but for over six months now for the last couple of minutes I reduce the temperature first to tepid and then to really cold. It wasn't easy in the beginning but I am now used to it. The cold water reduces aches on my head, shoulders and neck especially and like you I feel invigorated and energised Kendrew. When I come out of the shower I immediately feel warm again.
I’ve been taking cold showers and ice baths for over two years now , the tap water in the Uk is so cold in the winter I only need ice baths in the summer , it’s still a shock to get in at first but after a minute or so it’s fine , I do 4 to 5 minutes every morning , I also do the Wim Hof breathing exercises every morning to complement it . I am down to 3.5mg of pred, but up to now have failed to go any lower , after 6 years on pred I thought I would have been able to get off it by now using the dead slow method but to no avail , I keep trying one Rhuemy told me I would most likely be on a low dose of pred for life and another said the only way I will get off it is using a sparring drug like MTX. Think I am going to give it one more go at reducing before I accept the sparring drug, also my diet is as clean as possible , I’m a Veggie, no diary and no gluten I can’t do anything else . Unless someone else has any ideas , good luck all and try the cold , it is exceptional for your mental health and for an hour after you will forget what pain was 😀
"another said the only way I will get off it is using a sparring drug like MTX"
Yet another poorly informed rheumy. I do wonder sometimes where they dream these ideas up. I know a LOT of people who got off pred and never even had the threat of MTX hang over them.
Is MTX (Methotrexate?) a threat? I thought it was supposed to help. I was on it for 2 years but seemed to make little difference to the amount of steroids I need to control the aches and fogs. Sadly I suspect it, or it in combination, has screwed up my sense of taste possibly permanently....sigh.
It may be supposed to help - but the evidence thus far remains weak and it certainly doesn't help for everyone. The recommendation is that it should be considered under discussion with the patient, but there are rheumies who throw their toys out of the pram if a patient expresses even the slightest unwillingness to add another heavy duty immunosuppressant to the mix. Patients have been told they MUST take it or the rheumy will discharge them. I see that as a threat.
He suspects I have Sapho syndrome as well as PMR but won’t give me a definitive yes or no , I have non of the skin problems Sapho is known for but had all the classic sternum and clavicle problems , I think his idea is MTX will treat both problems . I’m still sitting on the fence .
You do know, don't you, that MTX only sometimes helps people achieve a lower dose of pred, and it cannot and does not replace pred if PMR is still active.
Interesting I didn’t know that , I am staying with my holistic approach for now , I’ve also been taking a high dose of turmeric , alongside the vit D . I’ll rattle if I take much more lol
I have a theory that when mtx helps significantly that there is an inflammatory arthritis component involved or one particularl version of PMR. No way to prove it though until they find a reliable biomarker for PMR.
I have suffered with osteoarthritis for a number of years, although I am told Sapho and RA have similarities ,the Rheumy said Sapho tends to affect the chest and clavicles more , but speaking to people on the Sapho page it can affect virtually any joint it’s a lottery , I was told if you have one of the 5 parts of the acronym you can be diagnosed with it . It seems an initial wrong diagnosis seems to be very common with the condition ,it seems a lot of them where wrongly diagnosed with fibromyalgia , but then told they had both , in my case it’s PMR and Sapho with Osteoarthritis. I don’t think he has clue to be honest .
I have answered re adrenal glands on another thread.
As for cold water swimming, no thanks, like Kendrew not a strong enough swimmer -especially after shoulder and hip replacements - so would probably endanger myself.
And my garden and nature in general improves my mental health - when I can, I’ll stick to walking by the sea - not in it!
Hi again Dorset, where is your 'adrenal gland' writing? Heavens- so no mad swimming with a dicky heart or after shoulder and hip replacements! I have yet to find a satisfactory reason to escape my experiment.....brrrrrrr.
Under the Sick Days Rule post -where you asked the question - but copy & pasted here -
When you are on steroids (for any illness) for a period of more than 2-3 weeks and above 10mg per day your adrenals temporarily stop working.
That’s because steroids are doing the same job that the adrenals would normally do - the equivalent of natural cortisol produced is approx 7.5mg Pred (can be slightly higher or lower depending on individual).
Once you get back down to around 7.5mg your adrenals need to start working again - and sometimes that takes longer in some people than others.
If you think of a car that’s sat on the driveway for six months (or considerably longer in our case !), and you go to start it, the battery will struggle and splutter - but hopefully will eventually fire up..... bit like our adrenals.
Initially the adrenals will need to produce a little cortisol to top up to the 7.5 figure, but on each reduction of Pred they will need to work a bit harder. That's why we say tiny steps and slowly does it.
You will not be tested for adrenal insufficiency because you don’t have it until you get to 7.5mg even if you do get tested you will need to be below 5mg, sometimes 3mg and then only if you are having issues.
I think I have spent weeks hoping that my symptoms will ease after coming down to around the 9-8-7-6mg levels but I just feel awful for weeks/months on end. My assumption is that my cortisol production is not coming back, hence my proposal for shock tactics on the entire adrenal system. I suspect I have a flat battery- after 3.5 years of reductions.
Well you can’t assume anything at the moment. It took about 8-9 months reducing from 6mg to 3mg very slowly for mine to spark! And I’d been on Pred about same as you starting at 80mg.
It can take months, not just weeks I fear. It can take a year to be fuly back to normal even after stopping pred altogether. It is a very complex set-up involving several organs, glands and hormones that all have to be properly balanced and working reliably.
I cold water swim but that's for mental well being and enjoyment rather than for my adrenals. Bonus is the pain relief too. The article is spot on in that it is a reset button for me.
I would be careful, start slowly and for short periods - cold water does have an impact on the body for sure and you don't want to overshoot and end up in adrenal crisis depending on your dose.
In fact, just before Christmas I was doing a fast taper down to 5mg for a scan. I stopped the cold water swimming when I got to 10mg and below because I really didn't want to induce a stress situation on my body combined with a rapid pred drop with adrenal crisis in mind. Maybe over cautious bit I don't think so, out in the middle of a lake in Yorkshire is not a good place to need help. A shower is less risky.
If you taper slowly I suppose it's less of an issue however you would still need to be careful of adrenal symptoms around the lower doses. Cold water does have a big effect on the body.
We are VERY lucky for swim spots in Yorkshire. I swim in a reservoir called Sparth which is around 4 miles away from my house. It's owned by Canals and River trust and it's one of the few places swimming is completely allowed. The other reservoirs technically don't allow it not that stops people.
I can't wait until the restrictions allow us to travel further. I really want to swim at St Aidan's RSPB site because it's so lovely but will have to wait. And there's at least 10 other places I want to visit in the summer!
Oho....isn't it Cortisol production which is the problem for us PMRers? My aim is to cause chaos in my adrenal glands. If it goes horribly wrong, I can always take more Prednisolone (and claim it is a flare).
I love the thought of wild swimming but haven't got the bottle for it. I have happy memories as a child swimming in lakes. I would do it but wouldn't cope now.
Hi my husband has read into this and has started cold baths and said it feels amazing and it is meant to be really good for your immune system so I am starting with cold shower and then onto cold baths so will let you know how it goes .
It is a very popular approach to improving immune function in the Germanic part of mainland Europe. OTOH - on Lake Garda there are signs tellin you it is dangerous to swim if the water temperature is below 19C!
It ISN'T a good idea to start with an entire cold shower and in fact the usual suggestion here is to finish your shower by playing cold water over your lower legs and arms to start withgradually increasing the time and area exposed to the cold water.
I believe there is a study showing even just splashing your face with cold water has an effect on the immune system.
What you have suggested here is more or less what I did. As I turned the shower to cold I removed the shower hose from the wall and ran the cold water on legs then arms and then body, doing it gradually. Less brutal!
I have tried the cold water splashing on legs which has been said to reduce the appearance of cellulite 😏. Made no difference (I want my money back) but was invigorating. I often splash cold water on my face after cleansing and feel the same effect. However, as a chilly mortal-my mother's description of me as a child - full body immersion in icy water doesn't appeal to me. I'm of the opinion that if it works for you, go ahead. Now, where's my wheatbag?
As I've discovered. During the months pre-diagnosis I lost a lot of weight and through the pain admired my own legs in the mirror when dressing. I'm so vain! It re-appeared post-Pred but the pain was controlled. No contest.
Now that is interesting. All my life I'd finished washing my face by splashing cold water on it. For some reason after we moved I stopped doing that. I'm taking it up again. 😚
Start very slowly , it doesn’t have to be freezing cold in the beginning , and only for a few seconds at first . Your body will adjust providing you take it slow 👍
Hi ignatz, I finish my showers with 90 seconds of cold water (started with a few seconds at first), and I have been doing this since September last year. I believe it has been helpful to me, but can't be sure. I do brace myself for it, still mostly I find it very refreshing. If I distract myself imagining that I am standing on a cliff edge below a waterfall and focus on seeing a sunset and exotic birds around me for example, I sometimes don't even register the freezing water on my back. I think it will get easier in the summer. Worth a try.
I feel the cold terrible so as helpful as this sounds for me personally at the moment I wont be trying it, if I did it would take me day or 2 to warm back up, I'll wait til the ice bucket challenge comes back round again ha ha. Bedtime for me is electric blanket, 3 long hot water bottles, and 6 microwave wheat bags and my I'm dressed like I'm going out when in snowing not to mention quilts fleece blankets on bed but still cant sleep without my fan on and heating on and windows open even thou I feel warm to touch I always feel cold and been like this for as long as I can remember
I've been trying cold showers for the last couple of years. I take my regular hot shower followed by a cold shower for about 3 minutes. I read about this in Kate Gilbert's book "Polymyalgia Rheumatica and Giant Cell Arteritis," p. 139-140. She refers to Wm Hof, also called "the iceman." I know it sounds sort of crazy, but Kate Gilbert says there is some scientific evidence that Hof's method reduces inflammation. His web site is wimhofmethod.com. His method also includes some breathing exercises which I didn't like at all so I've only done the cold water part. I have been able to reduce my pred, but is it due to the cold water???? I don't know.
A disclaimer. I grew up in the U.S. near the Great Lakes and I used to swim in Lake Michigan often. It's cold!!
Thanks! I'd love to read the rest of this article. I'll try to find some related articles by the authors.
I've been taking a 3-4 minuted cold shower after my hot shower for over a year. I have no idea if this has helped my prednisone reduction, but I have been able to reduce from 8/9/10 mg down to my present 4 mg.
I've finally figured out how to tolerate the cold water. I close my eyes and go back into the past. I'm 8 years old and I'm showering off after my Red Cross swimming lessons. We're so spoiled now. Back in 1951, the swimming pools and showers were not as warm as they are now! I can imagine the concrete floor and I can remember how chilly the water was. But when I was 8, the cold didn't bother me much.
Funny you should mention that! My other memory--after the swimming and cold shower--is that my friend Jeannie and I would buy a popsicle and then split it in half and share it. (Not sure if you use the word "popsicle" in the U.K.)
Any ice pop"Popsicle may refer to: Ice pops. Any ice pop". "An ice pop is a water or milk-based frozen snack on a stick.[1] Unlike ice cream or sorbet, which are whipped while freezing to prevent ice crystal formation, an ice pop is "quiescently" frozen—frozen while at rest—and becomes a solid block of ice.[2] The stick is used as a handle to hold it."
I’ve been doing the Wim Hof breathing method and cold showers for just over a year. I have a hot shower followed by 1-2 minutes of cold (15degrees is the lowest our shower will go) and that feels great. I did a Wim Hof course in London well before lockdown and the ice bath was tremendous. It is best not to tense up when in the cold but to try to relax and concentrate on your breathing. I don’t think it’s helped with PMR but certainly makes you feel super charged for a while. I’m down to 4mg of pred at the moment doing the DSNS method to get to 3 and a half. As others have said it’s best to get into cold showers very slowly but best not to try it if you’re having an off day as you don’t want to put your body into any more stress.
Does anyone have any info about the following - I am interested in the cold shower treatment, but as my adrenals have packed up following too many years of pred, and I am on hydrocortisone, would it be safe??
Safe? Speak to your doctor before trying this at home ...or in the sea. The article will be in lots of public libraries which may now be open again... newscientist.com/article/mg...
Hi Ignatz,I’m 74, I’m male and I do cold showers, the colder the better. I got a new shower installed recently and I recalled the plumber to reset the cold temperature as it wasn’t nearly cold enough. He said I was the first person ever to request this in his 35 years in the business. I have been taking them for quite some time now and in the past week I have started on 2 per day, 5 minutes each time at maximum strength and cold . I will go to any lengths to take away the fatigue which is the dominant symptom of my PMR. which I have since June 2017. The shock from the cold water is electrifying and gives me great temporary relief from fatigue plus a boost of energy and a renewed vigour for living life which as you all know fatigue severely diminishes. Resting for me to relieve fatigue is of no help whatsoever and if anything makes me more lethargic. I as on Prednisolone for 22 months starting at 20mg and tapering up and down between 7 and 1 mg. I stopped talking them 21 months ago. My understanding from my brief amateur online research is that the withdrawals regardless of how low a dosage one is on prednisolone can last as long as the time one was on them. My full story was posted about 2 months ago. I wish you all the best as well as all the other wonderful brave people on this forum who are battling this debilitating condition. STRAPCOL. 220321 Monday.
Thank you for your insight. Before PMR, I use to end my morning shower with a cold rinse. But since PMR it was so painful that I ended the practice. Now that I’m down to 2mg, I braved the pain and started ending my shower in an ice cold rinse. I easily got through the pain and felt great the rest of the day. Next week at the end of the month I’m going down to 1mg so ill see if this will get me through.
Damn....I only feel fabulous for a few minutes. Better than nothing so will continue to see if shock treatment will kick-start Cortisol production as 'slow reduction and waiting to feel well' does not work. Stuck on 6- and generally exhausted and aching.
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