Some time ago there was a post about a study which shows a small amount of baking soda (1/4 tsp) per day has been shown to work on the spleen and lower inflammation. I have tried this for four months and the result, for my version of PMR is absolute zilch. In fact my inflammation markers are as high as I've ever known them to be, and I'm dealing with an unprecedentedly severe and intransigent flare.
Rating: no stars out of five.
Edit: Additionally it had no beneficial effect on the swollen knee and osteoarthritis I've suffered from since last summer.
Further edit. Lots of info on internet, from reputable sources. This is a clear overview:
wow! thanks for doing this. I was going to take it.. took it a couple days.. take it sometimes for heart burn.. but kept forgetting. So glad the study has been done for me.!! I will use it to clean out my drains and make pretend volcanoes rather than cure my PMR!!
Ha Ha. if you have small children visiting put a drop of food color on a bowl then cover with baking soda and spray with vinegar . I do this for grandaughter using a muffin pan with different colors and you cant see them until you spray the vinegar on.
Thanks for that....can understand you trying it....having the same experience with a flare as you.........sometimes feel like I would try anything!Hope things ease for you.....
Hi Heron, I saw the heading of your post flash up on my phone - and excitedly opened it! Disappointment followed for you. What a pity you didn’t have a better experience.
I use it with salt as a mouthwash as my Pred teeth are in a dreadful state. Not sure if it’s working or not yet.
It’s great for unblocking drains though!!
😊
I’ve ordered a Chinese herb today which was hailed as being good for GCA - which they finally believe I have, despite weird symptoms. If you don’t hear from me again, you will know I have poisoned myself!! x
~I second that D/L - tried my lovely home grown borage flowers in my icecubes + salads. Very good for you in so many ways but obviously not for me as found out hard way. Hospitalized last Fri with gastro-enteritis which brought on my usual A/F.
So PLEASE be very careful as we don't quite tolerate certain herbs/spices + other foods like we did pre PMR days.
I also sought a chinese herb for GCA after reading an article about a Chinese woman who stopped her prednisone after starting it and she was 'cured'. It's called Dong Ling Cao.I didn't use it on the advice of this forum so it sits at the top of my cupboard. Maybe I'll start using it if I ever come off prednisone.
My rheumy was horrified when I described it. Don't poison yourself
I will! Need to pluck up the courage too! It’s not arrived yet, and still need to do research as to what dose I need. Did you get that far? Reckon to start really low. Besides which it is not cheap, but I wanted to know what I was ordering is pure herbs without fillers - and without steroids. God forbid!!
I still don't know what dose to take. It is a big packet of grassy looking herbs with no information of how much to boil up. I would need to get back in touch with the source who is in Byron Bay north of Sydney ( the hippy now trendy place in NSW). I do intend to try it when I have tapered down more. I'm on 7mg at present of pred and going ok. Time will tell.
I’ve ordered the concentrated powder. Seems you will be able to make tea with yours! But I don’t think it has a long shelf life from what I have read. ☹️
Hi. No - I don’t get pain whilst eating, but my gums are sore/bleed most of the time - in random places - and I have had no end of gum infections since being on Pred. I now have to have at least two extractions. 🥲 My dentist says it’s all because of my erratic immune system and Pred. I used to have good teeth before being diagnosed with PMR.
But the good news is the added bicarbonate of soda in my salty mouth rinse does seem to be helping. 😊
I've been taking Vitamin K2 as part of my staving off osteoporosis adventure (since late 2015) and a welcome side effect of this has been that my formerly very sensitive teeth no longer bother me and haven't for some time.
Hello PMRpro. Well. 🙄! My interest was sparked when I read a paper by Oxford University. I can’t get the link but their website is academic.oup.com and the article was headed “Inflammatory aortitis controlled by the Chinese herbal remedy Donglingcao Pian”I have since found a couple of other reports saying similar, and technical reports but they are mostly beyond my comprehension.
It’s not about stopping Pred - but seems it is a powerful anti inflammatory - and reading between the lines, could keep inflammation at bay without having to increase Pred.
If obtained from a reliable source possibly - but some Chinese remedies touted as replacements for pred actually contain very high levels of undeclared corticosteroids! And the letter does say "We cannot discount that she went into spontaneous remission" - which does happen.
Happy that the source is reliable. But I may not have the courage to take it! However, if I do - and it works - or even doesn’t (!) I will report back. Must admit, I would prefer spontaneous remission!
I have known two people (men) with different kinds of cancer who did accept Western treatment but also used Chinese medicine under the care of a qualified Chinese practitioner. Both men were terminally ill. Both lived longer than the initial prognosis, one several years when given months. This latter man was actually seen up a ladder mere days before his death painting his house! Both felt the Chinese medicine helped to counteract the terrible side effects of the Western medicine and gave them much improved quality of life, although our housepainting man was younger when he became ill and generally speaking did much better. I don't believe either of them expected a cure from the Chinese medicine, although I think the wife of one of them (not the housepainting one) nursed continued hopes.
I do believe that there is more to all this than meets the eye - It’s just such a shame that more research doesn’t go into natural medicine - but not much profit to be made, I guess - and trials are few and far between.
Also, doctors in general don’t tend to look at us holistically, and more often than not, treat the individual symptoms.
Remember that reliable source for information is different from reliable source for your drugs. It is important to know what you are taking and that they don't interact with other medications. I've just gone down the rabbit hole of kidney problems. Here is the report I received yesterday. It might be in several parts because I'm still learning about how to drive the software.
It is important to keep track of everything you take so that when something like this happens you can go back and review what you were taking, how much, and when.
Copy/paste into the HealthUnlocked environment might or might not work but I'll check. Drag and Drop doesn't work but appears to work on the screen but the dropped image isn't there when the post is saved. So I was using the button for adding an image. The problem with that is the button only seems to allow one image per post. I've got 4 separate png files because they are screen shots from the original document with personal identification details removed. Just learning problems with the site software. I've been through this before.
The initial request from the nephrologist was give him a list of all medications and supplements I take. I left off the Omeprazole and Creon because I had not been taking them for some time at the time of our initial consultation. The Omeprazole might be the culprit but we may never know for sure. No Chinese herbs for me. 😊
The medication is what scares me most about this disease, in particular the Omeprazole which I've been taking since October 40mgs twice a day, and can't see how I'm ever going to get off it as I still suffer badly from reflux. My heart goes out to you, and we are all caught up in this circle of medications to counteract side effects from other medications. Good luck with your journey, and I hope things get better for you.
Speak to your doctor - omeprazole doesn't work effectively for about a third of patients.Ask if you can try another typle of PPI, maybe even a different type of acid-inhibitor called and histamine H₂ receptor antagonist medication, an example is famotidine. You are in the UK so another option is to have your pred as an enteric coated formulation which also reduces the likelihood of reflux without having to add a PPI.
Thanks PMRpro. I was changed over to enteric coated Pred two months ago, but the pain I was experiencing along the gastric tract continued - particularly mid breast through to my back. More recently it is now in my throat which has been inflamed for months. This worries me as I've read about LPR - Laryngeal Oesophageal Reflux which is more serious. I've spoken to my GP several times, and he says he could offer me a test for Helicobacter Pylori but I would have to stay off the Omeprazole for 2 weeks prior, which is not advisable at present. I asked for a referral to the gastro team and they communicated via my GP saying because I'd also been tried with esomeprazole, to no effect, the problem must be 'functional'. When I asked what that meant, he said that I could be overly anxious and causing the problem myself. He offered me anti-depressants, which I declined. The irony is that all of this negative feedback is making me anxious and depressed. My weight has dropped. I'm passing undigested food particles when I go to the loo, and now the GP has got me wondering if I'm becoming overly obsessed and the cause of my own problems.
" I'm passing undigested food particles when I go to the loo,"Have you told them that? Though that isn't a problem unless you have any other gut problems such as diarrhoea or other changes in bowel habit, weight loss?
Have you had imaging or an endoscopy to rule out a structural problem such as a hiatus hernia or problems with the sphincter at the top of the stomach? Because I am struggling to understand how they can say "functional" just on the basis of trying a PPI. Maybe I'm missing something though!
I had an endoscopy back in October when I was only 1 week into the acid reflux after starting the uncoated Prednisolone without a PPI. It showed gastritis and Omeprizole was prescribed. But 4 months later things have got worse. I spoke to my GP this morning about the throat pain, and she's referring me to ear nose & throat at the local hospital. The weight has dropped from 8 stones 4 pounds to 7 stones 9 pounds, which isn't a lot I know, but I'm trying to cram in all the calorific nutritious foods I can before 5 pm, because eating after that causes me stomach problems at night. Although I don't have diarrhoea as such, I'm going to the loo around 2-3 times a day and passing quite a lot. I know by suppressing stomach acid, the digestive process is not as efficient, and a lot of nutrients are expelled, so I don't know whether this is just what happens, so I haven't mentioned this to the GP as yet, though I told her about the weight loss.
Tell her everything - whether you think it is relevant or not. But I'd also ask to try H2-antagonists (famotidine or another) instead of or as well as the PPI. PPIs are quite able to cause GI problems themselves for about a third of patients but a lot of doctors don't believe it so that is easy to rule out just by trying a different group of drugs. Can't say I'm impressed by your specialist though!
Me neither. Thanks PMRpro. I should make a list before I speak to the GP. I used to do that, but I found they'd dismiss or ignore a lot of it anyway in the limited appointment time.
I’m currently getting radiation treatments for cancer. They have me rinsing my mouth 6 times a day with a little soda-no more than 6 times. I’m getting radiation near my mouth.
Hi. Sorry to hear that you are having to go through this, and hope you have loads of support. 🤗 It’s surprising how many uses there are for bicarbonate of soda! I hope it helps you. Sending a virtual hug. x
Yep, baking soda (in much larger quantities!) and vinegar, best household cleaners! Good in cooking. Not so much as a medicine, although I measured very carefully to take exactly the amount used in the study and which we were told not to exceed. Might work for some conditions. It has not worked at all for either PMR or my arthritic and swollen knee. If anyone else comes asking about this in the next few years, you who've read this post can point to it as some evidence that they might as well not bother!
I've been taking turmeric with black pepper for the last 6 months....my fingers are the most painful part of my body! Left knee a close second! Anyway...in spite of a good friend saying how good it was it did absolutely nothing for me!! Then I read about apple cider vinegar! 😂 Why not, I thought!! So, for the last month I have been taking a teaspoon of organic cider vinegar, with 1/4 tsp dried ginger and 1 tsp organic honey...and about 30 ml hot water!! My fingers are definitely no worse and I think the lesser affected ones are better!! I wasn't expecting much from it but I'm going to carry on...it doesn't taste too bad and it's cheaper than turmeric!!! 😄 xx
I used to make a cup of ginger tea (grated fresh ginger) every evening and I thnk it helped, rather subtly. I keep starting again, then I run out of gingerroot and with the pandemic not shopping so often and forget to restock. I shall have to put it at the top of my list next time.
I sprinkle a small teaspoon of ground ginger over my porridge in the mornings and I think it has helped improve my OA fingers quite bit. Much less pain.
Good idea. I suppose one could also grate it fresh, then freeze it, hopefully kind of loose not in a glob, and have it conveniently ready for use. Will try.
Thanks. I like the idea of grating it, whether fresh or frozen, then making the size helpings needed (in my case 1 heaping tsp) and freezing each little glob separately. Now to remember to pick some up next supermarket run, which won't be for about a week, because pandemic, and then perform the task immediately. Hope there's good ginger. My Ontario supply (so fresh!) disappeared so we're now reliant on the increasingly unreliable supply from China.
Meanwhile I should talk to physiotherapist about restarting light therapy for PMR. It will be another test to determine how much this method helps. I certainly haven't felt this horrible since before starting pred, and I kept up the light therapy for PMR really until the pandemic hit - we were in the process of gradually phasing it out, but ended up stopping a bit more abruptly, then once physio clinics reopened the knee took over all our attention.
I use lots of ginger and normally have a fresh lump in the fridge but because of doing online grocery shopping during the pandemic I happened to discover that you can buy it already grated and frozen (Iceland certainly do it in the UK, probably others do too) and it's very good and handy to have as a back up.
Have you tried Electric soda crystals as a wrap for the swollen knee. Supposedly works if the swelling is excess fluid. Haven't tried it myself. Had difficulty finding the soda as a crystal rather than as a powder when I looked for it for mum.
Best thing has been a cheap elastic brace! I'm told the fluid is actually produced by the lymph system, so what I want to know is why here, and why won't it stop?
Its a strange world, i tried Tumeric .black pepper didnt do a thing , What works for one doesnt work for another ! Great to see different things to try when in pain, glad this helped you x
Thanks for your experiment...although not a double controlled trial, I honestly had no idea how this COULD work other than as a placebo... although I am not against placebo’s!
the only way it could work is by lowering stomach acid which may help if inflammation is somehow related to GORD..though doesn't it cause a bit of reflux with the effervescent anyhow? Not good over a prolonged time anyhow if it does lower stomach acid. thanks for letting us know.
There's quite a bit on the internet, from reputable sources. This is a clear overview. I believe the person who first posted about it on this forum actually posted a link to an article in a daily newspaper.healthline.com/health-news/...
Thanks HeronNS for this information. I’ve read that beet juice can help with inflammation. Having cooked fresh beets for the first time in my life, I have lots of beet juice so I’ll let you all know if I notice any changes.
Hmmm...I absolutely love beet juice and get organic beet regularly in my veggie box which I eat in all sorts of different ways. Sadly I haven’t noticed any improvement in my PMR but good luck anyway!
I expect there are lots of helpful phytonutrients in beets, as in all purple veggies and fruits. I'm sure they're good for us but I don't know if they can really help directly with something like PMR, but good for us nevertheless.
Hi Heron, I didn’t know that, I must admit, but it contains betacyanin, an antioxidant important for a healthy heart.A friend of mine buys fresh beetroot and it helps hugely to regulate his AF.
Really? I love beetroot - and have AF! They are produced locally but I rarely get round to getting any just or me - OH won't touch anything that might be a vegetable (except chips) ...
Well - he swore by beetroot and used to drive miles to find the fresh stuff. I can’t find anything on the internet to support this, but I did listen to a radio 4 programme on this subject years ago, which supported what his cardiologist had recommended to him. I was really interested in all this at the time as I had AF for a period, which luckily disappeared - put down to PTSD. How does OH survive without his veggies?!!
I used to use sodium bicarbonate (I think that is the same), as advised by my vet, to help prevent lactic acid build up in the muscles of my super fit endurance horse. Any horse people out there will understand monday morning disease, azoturia, aka another name I can't remember.
Yes, baking soda is bicarbonate of soda or sodium bicarbonate! Considering how much PMR feels like suffering over-exercised muscles you'd think it should work on our muscles too. The little bit of reading I did said it seemed to have some benefit in rheumatoid arthritis. But if I was receiving any benefit it was obviously completely overwhelmed by whatever is going on with me.
Librarian in me looked up the horse condition: "Equine exertional rhabdomyolysis (ER, also known as tying up, azoturia, or Monday morning disease) is a syndrome that damages the muscle tissue in horses. " Quite a mouthful that name!
Tnx for that info HeronNS. Very helpful. I have been taking a Tumeric and Pepper capsule just b4 going to bed which, it has been said, helps with inflammation and as I reckon it is something I cld consume in food there wld be no ill effects. I believe it is helping me to avoid flares. Now on 8mg from 80 1yr ago. I take it at that time though to hopefully avoid any effect on steroids which I take in the morning b4 breakfast.
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