I’ve had PMR since the start of this year. I’ve taken the unusual route of declining medication (except ibuprofen/paracetamol) to date - not easy! One benefit of this is that I can ‘see’ the course of the PMR ‘unmasked’ by pred, and I’m lucky enough to have a rheumatologist who has organised fairly frequent ESR/CSR tests - which until late June were both running at 60+. I happen to be a beekeeper with my own hives and I make my own honey. Over the last six weeks I’ve taken a teaspoonful of ivy honey each day (ivy honey is made by bees in the autumn if it’s good weather when ivy is flowering). Ivy honey has been described by some people as the ‘UK manuka’ and is believed it may have under-researched potential health benefits. At my visit to the rheumatologist last week she told me my most recent ESR/CSR tests had significantly declined (to single figures for ESR, ie ‘normal’, and to around 30 for CSR, ie halved). Those reductions were over the six weeks I had been taking the ivy honey. Unfortunately my PMR symptoms have little changed; I’ve no idea if that’s some sort of ‘lag effect’, I hope so and that my PMR symptoms will now reduce as my ESR/CSR readings have. So my question for the Forum is whether anyone else has heard of honey, especially ivy or manuka, having benefits for PMR/GCA?
Benefits of honey? : I’ve had PMR since the start... - PMRGCAuk
Benefits of honey?
I think you may have your tests mixed up - CRP in single figures and ESR 30 would be more likely.
There are people who say any proper honey can have similar effects to Manuka - and a lot of the Manuka being sold can't be true Manuka - they couldn't produce the amount that claims it is!
I would expect the lag effect to be the other way round - symptoms going up or down before the markers move,
I don't subscribe to the "pred masks symptoms" lobby. Pred is the most effective antiinflammatory medication in the arsenal. It combats the inflammation that causes the symptoms - and that in itself is a good thing because long term unmanaged inflammation due to any cause is a bad thing and predisposes you to developing all sorts of things, ranging from depression, through vascular disease to cancer. There is a good reason for using pred to manage the inflammation of a chronic disease like PMR.
Wow!! thank you!
There are studies that show that honey [particularly Manuka] has anti inflammatory properties as well as antibacterial ones… but not sure there is concrete evidence that it helps in PMR or GCA per se. Although many on here do consume honey on a daily basis. I do, but then my GCA is long into remission.
The results of your blood tests - and think you mean CRP rather than CSR- may show that some inflammation has decreased [and that can be raised by many things not just your underlying disease] - but the fact that your symptoms have not changed indicates the honey isn’t working on your PMR. Plus a reduction could be due to the Ibuprofen as well.
The ‘lag effect’ is usually the other way around [although not always] - symptoms come first, then followed by raised blood markers. Talking of which, do you mean ESR in single figures, CRP in 30s - usually the other way around…
Perhaps you could be a Guinea pig for a new treatment for PMR/GCA - many would be very happy if honey worked….
..but on a more serious note, do be aware that left untreated PMR can morph into GCA a much more serious condition…[not sure honey would have saved the sight in remaining eye after losing in other , whereas Pred certainly did] but hopefully your Rheumy is monitoring that scenario.
Please keep us informed of how things progress.
Totally agree about leaving it too long! I started with PMR symptoms just before a 2 month stay abroad, & by the time I returned to U.K., I was diagnosed with GCA as well.
I’m confused because you are symptomatic so the honey isn’t having a global enough effect on the inflammation as indicated by your pain. The numbers on paper don’t always reflect the situation; even when my sight was shutting down with GCA, my ESR and CRP were within normal limits. There can also be a lag between the inflammation build-up and the numbers rising appreciably. Having had GCA, I would say that nothing would induce me to experiment with symptomatic PMR because of the risk of developing GCA. Prior to GCA diagnosis I was taking manuka honey too, but I appreciate we are all different.
I had bronchitis in June and was on abx. Nasty residual cough - bought some Manuka from the worlds largest supermarket as I was bed bound and with 48 hours cough had vanished! However I would defer to the Ambassador and DL on their expert knowledge about our condition. It didn’t mitigate my PMR though! 🍀
I know that honey is good for the gut and for reducing common symptoms in colds, ‘flu, sore throats, etc, but have never heard of it being used in autoimmune diseases. It’s long been said it has benefits when used as a natural antibiotic for burns and scalds and this dates from ancient times. I believe Aristotle was a proponent of its qualities.
I think you are extremely courageous -some may use other adjectives- to endure the symptoms of unmanaged PMR without conventional medication (corticosteroids). The deterioration in movement and increasing pain I experienced in the four months before PMR diagnosis are symptoms I have no wish to repeat. Prednisolone was my saviour.
Good luck with your endeavours and keep those hives going…a wonderful thing- I’m sure your bees are the happy kind and that they produce delicious honey appreciated by many.🐝
I'd be inclined to suggest they probably hasn't had PMR long enough!!! After 5 years of unmanaged PMR - not my fault - I was heartily sick of every movement hurting and depressed because of the limitations on my life. I remember that first dose of pred as if it were yesterday - and the relief 6 hours later.
When I came down with PMR, it occurred suddenly beginning the day after working under my car most of the preceding day making me think the symptoms were a result of that. The difference was the stiffness increased each day instead of diminishing until within a week I got slammed with intense pain that I almost screamed. Trip to ER & 80 mg Pred later I felt fine. Try dealing with PMR without Pred, no way, at least not with the symptoms I had, even with flares.
Thanks for the comments. Here are the figures: 7 June ESR 65, CRP 39 on 20 July ESR 9, CRP 20. So ESR showed the higher reduction as stated in original post. My rheumatologist has made me aware of the GCA risk and action to take if there are symptoms. She’s not advising that living with inflammation in itself leads to harm in the longer term.
Thanks for update - most doctors would consider CRP at 20 to be above normal range…and as for … She’s not advising that living with inflammation in itself leads to harm in the longer term. I think many would disagree with that…
Hi, I too am coping well with my pmr symptoms without the addition of Prednisolone. My GP prescribes me Cocodamol on a prn basis, and for the past three weeks I have not taken any finding I can manage the early morning pain and stiffness by using my TENS equipment. My GP has given me the same advice on the associated risk of GCA; however, the risk of GCA for those diagnosed with PMR is just 1:5 (20%) according to what I have established from research. I would be very interested to hear further about your progress in the future while on your current regime.
I’d be interested to hear of anyone has views on honey, especially manuka or ivy, the original topic of the post. I know that pred is invaluable in alleviating symptoms, albeit not without a lot of potential side effects, and it’s not a ‘cure’.
Honey is just fancy sugar, however you want to look at it. It is a good wound dressing, that has been shown, but actually, sugar from a bag of Tate and Lyle or Silver Spoon also works the same magic on wounds.
bbc.com/future/article/2018....
pubmed.ncbi.nlm.nih.gov/216...
Only medical grade honey should be put on open wounds though.
No views on Ivy honey, never knowingly had it, but have had genuine NZ Manuka, daughter lives there - so stock up when I go there, and/or when she, or family comes to UK... and agree it is good. And have used the medical version on wounds for self and late hubby who was a notoriously bad healer...
Most are not disputing honey has very good properties, and so do other natural substances which are considered anti inflammatory.... but all we are saying is that it doesn't have a widely proven record with dealing with the inflammation associated with PMR and/or GCA...which is what your original question was.
Thanks PNRPro. Does anyone have other views or experiences perhaps?
I use Manuka and Local Honey each day to sweeten my probiotic yoghurt which together helps settle my stomach and seems to have helped me to stay off the PPI . I have numerous gastrointestinal issues as well as other illnesses so being able to reduce my medication felt good to me.The local honey I use I found reduced my symptoms of hay fever , especially the skin reactions I used to get. My whole family and many of my friends tried this and had similar success.
It is also known to be helpful for certain types of skin problems at the right MG count because of the amount of peroxide in it , but it does need to be used as recommended by a Dermatologist.
It can also be used as a natural substitute to processed sugars in the diet which is helpful in controlling blood sugar.
Honey has had no effect on my inflammation or pain . I had GCA but I also get inflammation in all of my joints from repetitive injuries because I have Ehlers Danlos Syndrome and I have nerve pain from Fibromyalgia.
Honey may have anti-inflammatory , antihistamine and antibacterial properties but it is not a substitute for Steroids.
The amount of inflammation involved in an autoinflammatory or autoimmunity condition is far too significant for honey, or honey in combination with various natural antiinflammatories to be effective on their own in disease management.
Which is probably why even though you have a reduction in inflammatory blood markers your physical symptoms of PMR don't seem to have changed.
There have been a number of people on the forum whom couldn't take steroids for other health reasons and I wouldn't have wanted to be in their shoes. There really is no substitute for Steroids for managing the inflammation when PMR and GCA are active and I know that these members had an awful struggle.
It's interesting that your test results have lowered so much.
Can you say it's just the honey that did that or have you also made changes to your physical activity or began to pace your day more evenly which could have also helped to reduce your markers?
One thing people regularly have difficulty with when being treated for PMR is that they get normal blood markers despite having all the symptoms of inflammation.
It could well be that you are one of those people whose markers will not accurately represent how bad your PMR is, even if they had spiked at your first GP visit.
Self care , supplements, diet and lifestyle changes are all key to helping you to manage your PMR and to improve your recovery but they aren't a substitute to medication in controlling the inflammation when it is active.
If you have still got symptoms I would be inclined to try the steroids now as you have tried natural methods for six weeks but still have the symptoms so that you can tell what the difference would be.
Could you say a bit more about honey as an alternative to sugar for controlling blood sugar? I thought sugar from any source, unless in fibre as in fruit, was sugar?
Both sugar and honey need to be eaten in limitation.Whereas Processed /Dry Sugars are 100% sucrose, therefore100% sugar, Honey is 80-82% sugars with fructose and glucose and a few less common sugars in combination with approx. 17% water, and then other trace vitamins and minerals.
The consistency of honey gives it a marginally lower glycemic index rating than processed sugar and it has been tested to produce a lower fasting blood glucose result in people with a balanced diet and average "sugar" consumption , and, to cause a slower rate of increase of blood sugar when consumed in comparison to processed sugars. Clover like honeys are better than clear varieties and have the lowest G.Is.
Honey is denser and actually higher in calories per spoon to processed sugar but it also tastes sweeter because the fructose and glucose molecules are suspended in separation which means that approximately a third less honey can be used in general in recipes and drinks ( by sugar content ) . With time , many recipes can be adjusted to using as little as half of the sugar content by using honey with the same sweet taste. Drinks as little as a quarter.
You still obviously have to take care in the amount of honey you consume because it is a natural sugar product. As much as my husband would love it , the Diabetes Society aren't going to be telling him he can gorge on honey any time soon!
Wow, thank you! I have added this to my collection of health information. I recently had a cough and consumed a £45 jar of jarrah honey in the interest of good health. Won't be buying another bottle for a while. Too tempting!
Yes, I don't think eating it by the jarful is recommended , no matter how tempting that may be!😄😄😄
Thanks Blearyeyed. Yes honey contains natural sugars and needs to be used in moderation especially where diabetes is an issue. My interest is in the potential benefits that may arise from the other natural elements that exist especially in honeyed such as manuka and ivy, absent in refined sugar. Honey is not ‘just sugar’ as I think someone suggested! These natural elements and their potential benefit in PMR are little understood, hence my inquiry to this forum.
I believe they are little studied for benefits in PMR because consumption would not make a great deal of difference to that condition. In fact, over consumption of honey of any variety can have the opposite effect and cause a proinflammatory response.I do really think you should listen to the symptoms that you are experiencing and consider taking the prescribed medication you have been given.
An ultrasound scan carried out earlier this year due to areas of concern in my aorta showed “areas of thickening”——-“suggesting this is vascular damage/ remodelling from previous inflammation “. As I hadn’t had any inflammatory illness pre-PMR, I have to conclude that the “previous inflammation” occurred during the period before diagnosis and resulted in aortitis. This won’t be true for everyone I hasten to add: my own personal experience only.
There has been a great deal of peer reviewed research over the years on the part of eminent rheumatologists and scientists across the globe. I have to say that if there were an alternative to steroids or a cure it would have been discovered by now.
I should also say I’m a believer in ‘belief’ as a positive emotion and it’s clear that your belief in an alternative treatment as a way to manage your own health issue is strong. Who knows what the outcome will be for you? Whatever it is, please keep in touch here: everyone’s experience is valuable.
PS. One last thing- you have talked about your blood test results but not about your physical symptoms. I would be interested in knowing what they were pre- diagnosis and what they are now.
Thanks Blearyeyed, really insightful comments
Hi Billrower. Honey is wonderful stuff and envious of your beekeeping. Father in law kept bees all his life but it didn't stop his heart attack or leg ulceration and eventual amputation. It's not a cure all. I tend to agree with PMR pro. If you had had it as badly as she or myself then I honestly don't think you would be experimenting with the condition. I hope you don't get GCA. 18hrs each day of unremitting pain for days on end made me want to throw in the towel. Please fill in your Bio with info that would be helpful to others in helping you. Sorry you've got this and welcome to the club.
Thanks Cycli. Yes I will fill in the bio, thanks for the prompt. Absolutely, not suggesting for a moment that honey is an elixir! My experience was specifically with ivy honey, which is difficult to source and to get out from the comb - quite specialist. Not like 'normal' honey at all, and some sources believe it has potential under-researched health benefits. Anyone interested can easily Google!
No one would take pred. if there were a better alternative. Its side effects are worse on some and this is a bit of a lottery. Some aren't so badly affected. When the condition has really taken hold no painkiller is effective. Many here had the symptoms and because they were similar to other conditions never had a correct diagnosis for years while they tried many alternative therapies to overcome the issues. If we had caught it earlier we may have been spared the high doses we eventually needed and got clear of condition and drugs sooner. It sounds like yours has been diagnosed early as I can promise you when this has set in the pain and incapacity are such that you wouldn't be attempting to cope without the pred. Good luck on your journey and the experiment. I hope for your sake it doesn't induce it to set in and escalate.
I have taken Manuka honey with yogurt ever since I was diagnosed with PMR. I am not sure if it helped or not. I don’t have my own bees.
Ibuprofen really does not help PMR. I think I may prefer to take long term steroids to ibuprofen myself anyway.
We have virtually grown up in Australia with Manuka honey and it has long been touted for, amongst others, its Anti Inflammatory properties.
All through my battle with GCA I had a spoonful of manuka every day. After 12 months of Prednisone...6350 mg in total to be precise, and now 18 months on Actemra with hopefully only 2 more months to go I may very nearly be in remission. I altered virtually everything I ate and drank during those 2 years and used manuka as a sweetner for anything and everything.
Wouldn’t it be useful to know if your daily spoonful of honey has sped up your journey to remission? Although I like honey I limit myself to a teaspoon a day and only have it on my porridge due to its higher (than sugar) carb content.
I hope the rest of your GCA journey is event-free and that you achieve remission soon.
PS. Are you sure you only had a spoonful of honey if you used it on almost everything you ate and drank that needed sweetening? How big was your spoon? 😁
I would have a teaspoon on my Greek yoghurt most days and if I made a cake I would put about 2 tablespoons in the mix and omit ALL sugar products. I never bought anything already made from the shops, even bread I made myself. Doing all this home cooking and food making gave me something to do when I couldn't really do anything else, especially when I lost most of my hair and I looked and felt like a walking nightmare ! I also made 500ml vegetable and fruit drinks which I sweetened with banana and water melon, never any honey or sugar in that either.👍
You did very well, MarksPoint. There’s a lot of truth in ‘you are what you eat’.
I sooooo agree with that 123. What u eat and drink has so much impact on well-being but sadly 90% of the population have no interest in this crucial subject.
Be very careful as PMR can turn into GCA and you can loose you sight with that nasty devil.
hi Billrower, I am 3.5 years into my PMR journey struggling to slowly taper after a couple of flares. Pred has been a saviour for me and I know I would not risk trying to live without it. I have a friend who is a homeopath and I have used homeopathy for several health problems in the past but I would never dream of using any alternative medication for PMR. Perhaps your pain is not so intense as mine was at the beginning I pray you do recover eventually whatever you use but thank you for looking after the bees we need them so much. Take care.
My inflammatory markers have never been raised, but I sure as hell have PMR, so perhaps those figures need to be interpreted with care.
As a fructose malabsorber, I don't think that honey will be joining my medication repertoire.
I think there are different degrees to the severity of GCA and PMR. My consultant told me as much. I expect you are on the lighter side of PMR which means you are just about able to cope. Many people wouldn't be able to because they are so debilitated by the symptoms that pred is a lifesaver.
Interesting approach - keep us posted how it goes.
Not even thought about honey for PMR but have a spoonful every day to ward off side effects of pred like mouth ulcers. I'm one of thise who gets all the side effects and damage done by pred
Hi Billrower, as a fellow beekeeper, how do you do an exclusive late harvest for your ivy honey? Do you put new supers on? How do you then leave enough honey to get them through the winter? How do you know its only ivy honey, bees being bees going everywhere?
Thanks MDT1. I never thought about the use of honey to help with steroid side effects….I wouldn’t as I’m trying to avoid steroids, per my posting above. So very insightful. If you can get Ivy honey (it’s quite rare) try it, it’s more ‘medicinal’ in flavour and it’s slow to dissolve in the mouth, which helps with it ‘coating’ sore throats and mouth ulcers. Been used for hundreds of years for fevers coughs and colds - long before we had modern medications. Thanks again for your post.
I found oilseed rape honey very medicinal - really liked it! Only good thing to come out of a rape field ...
Hello sillydogmum, fellow beekeeper. Good Qs and those of you interested in PMR/GCA rather than bees suggest you might move on….on the other hand it might be interesting! So how do I get Ivy honey specifically: by having empty frames in the hive ready for when Ivy flowers (last year was great and the ivy flowered for ages as we had such a warm autumn in southern UK). I know it’s Ivy because little else flowers Sept/Oct and I have huge quantities growing near me in the Surrey Hills. Plus it crystallises straight away, so you know it’s Ivy, and it has distinct smell taste and texture. I manage the bee colony to take ‘conventional’ honey down into their brood box in late August, then I temporarily remove the frames with conventional honey. Then the bees do their clever Ivy nectar collection and make the honey. Then I take the frames they’ve filled on a warm day in say October, replacing with the conventional honey frames. That’s how they get their larder for the winter. I don’t like leaving ivy frames in as the bees need water to dissolve it for food which can be difficult for them if it’s a prolonged frozen spell. Then the fun starts as it’s very difficult to get the Ivy honey out the frames because the melting point of Ivy honey (ie crystallised state to flowing state) is around 38C whereas melting point of the wax containing it is 42C! So scrape the caps off the honeycomb, very accurate heating, let Ivy honey flow into tray under gravity and then straight into jars. After all that effort no wonder it’s considered a magical substance! Sorry to those that want to read about PMR/GCA but I did warn you and it’s sillydogmum’s fault anyway!!
Hello Billrower
Very interesting! I have had pmr for 6+ years now, but down to 1 1/2 mg of pred. I take a tablespoon of local (Arizona) honey each day. Don’t know if it helps the pmr, but it seems like the right thing to do.
Question: I have a jar of New Zealand 🇳🇿 manuga honey in the house. It’s so expensive I probably should have it locked in a safe. My question is…how long is it good for? Does it go bad?
I’m assuming manuga honey behaves like your ivy honey with respect to degradation under storage.
With respect, Billrower, this forum is called PMR/GCAuk and has been set up for people with these chronic diseases for peer to peer support and the benefit of shared experiences so naturally that’s what members want to engage in. I’m not decrying your bee keeping and I’m not denying that your honey has many health benefits but to suggest that people ‘move on’ is inappropriate. Perhaps you could set up an online group for beekeeping and those aspiring to become one. Best wishes.
Thanks for the comment 123-go, perfectly appropriate, however I do feel that the purpose of the original inquiry about experience with specific honey in alleviating PMR was (and remains) in scope for the Forum. I also warned folk not to read the beekeeping post in response to a technical question from a member. Thanks again for your comment!
Interesting, but it is your fault not sillydogmum's. You don't have to answer 
But it is polite. We never bothered to extract crystallised honey but ate it comb and all. I presume you use a centrifugal spinner to extract runny honey. FIL used sugar solution in winter to feed the bees.
As cycli say, interesting. Honey is wonderful stuff.Folks, buy local unmanipulated multi flower honey from someone who doesn't dilute, heat or otherwise b.......r about with it.
For those of you struggling with symptom control, medical appointments and all of life's other slings and arrows pay not the slightest attention to the very unwise suggestion to use honey as your treatment of choice.
Dead right on all counts, smartdogsmum. Esp note the comment re ‘treatment of choice’… absolutely honey is never an elixir!
Interesting and I wish! But I think PMR with the threat of GCA far too frightening to not use steroids. My markers were never very high and also the symptoms were inconsistent - one day bad, the next better. However when the headaches started they were incapacitating but some days were better than others. I started on a low dose of Pred and voila in half an hour all pain frizzled away. I am so keen to get off Pred but nothing would induce me to put my sight at risk and I know that GCA can be symptomless but I have started using Manuka Honey to cope with the side effects of Pred. I think it definitely helps.
s een your Bio Bill. single skulls? Where? It's been quite a while without medication and I'm concerned it may escalate into worse or GCA. Be careful and watch for the symptoms. Good luck.
Hello Billrower. I wondered, if you felt able to share, as it’s been 3 months since your post about Ivy Honey whether you could provide an update viz. have you felt that your symptoms have changed?
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