I'm struggling to reduce my pred, had to go up to 20mg in Feb after the PET scan to get the flare under control, got down to 15mg and have had to raise again to 17.5mg, probably due to stress and a bereavement.
I am also one of those people that if i drink it brings the pain back for 2 days. On the back of that have been researching histamine and inflammatory foods and did an experiment last night where I drank gin and tonic as opposed to wine, beer or prosecco. I had no reaction 🙂
That makes me think histamine might be playing a part.
Any thoughts on this or useful research?
Thank You
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I can't have G&T but don't know if the gin, tonic or lemon is the culprit, or a bit of each. Very unpleasant palpitations ensue. Likewise most other spirits. Some organic white wines are OK but it's Russian roulette so I tend to stay clear
Yes, I have to be cautious taking any new meds, I always take them with someone with me just in case of reaction. Some OTC supplements eg magnesium and vitamin D tablets set me off, capsules aregenerally more likely to be OK than pills. My current Pred I have to wash the coating off before I take them. Am I right in thinking I can do that so long as they are not enteric coated? I cannot take ibuprofen in any form, not even as gel on the skin
What sort of coating then? We have suggested for years to wash the coloured outside of enteric coated pred - red, brown or yellow depending on the dose. All the other pred I have seen is just the same all the way through.
They're all white, just slightly glossy on the outside so I wash the glossiness off and it seems to help. This time the brand is Strides Pharma UK Ltd - from the hospital
Following a tip-off from someone in a Facebook group who is also histamine sensitive, I Googled the inactive ingredients of one brand of Pred (Actavis) that I get reactions to and they include sodium benzoate which is high histamine, so that explains it. This person also mentioned she was allergic to Balsam of Peru, which I have also googled and found it is in all sorts of fragranced products such as scented candles and cleaning products, so that might explain my reactions to things like that too.
I'm allergic to povidone. I get severe asthma. It's not a coating but it could be in the casting, but usually a filler. It is in some pred but not other brands..
Ps Its supposedly one of those inert fillers..and I react to inert I've found..synthetic stuff, like the synthetic bandaids, and latex is fine
I worked out I have histamine intolerance and wrote a very long post on it about 2 years ago. I have had to totally change my diet. My previous rheumatologist was very interested, thinks he has other patients w ith same problem and eventually I got a referral to a combined rheumatologist and immunology clinic, waited a year for it then it got postponed because of Covid. what I did was keep a very detailed journal of everything I ate and drank and worked out histamines and sulplhites cause reactions.
I cannot t tolerate gin, tonic or lemon or many wines unless they're fizzy like champagne. my reactions are dampened by high doses of Pred, I think there is a mast cell link and my current rheumatologist is also very interested
I have had a (probably) red wine problem for years - immunology agreed and just said "take an antihistamine before drinking red"! It was always a delayed reaction - starting about 2.30am which she said was typical. If I take an antihistamine when I wake it stops it in its tracks. When PMR appeared it was wheat - just causes a sort of eczema but that can take weeks to manifest, there is a gentle tickle immediately which is easy to miss! I know which red wines I'm safe with - nothing heavy now ...
My reactions are usually instant, within the first sip. I just don't risk wine or spirits anymore but i seem to be OK with the fizzy stuff, which is all I need for a celebration! Although I had an Aperol spritz the other day and it was fine
Interesting i mentioned all this to SM the other day and said I was convinced it was something to do with overactive mast cells, she didn't go into detail but briefly said mast cells were involved in vasculitis which is what is being investigated next ...... I'll leave that one with you ....
could also be the chemicals and sulfites in wine. You can get a 'wine wand' that removes histamines but they're expensive, adds a few quid to the cost of each glass of wine as you only use them once
I'm not holding out any hope - when the consultant rang to cancel my appointment we chatted for a few mintes and he said he'd never heard of histamine intolerance, that I couldn't possibly be allergic to that many things and it was probably spontaneous urticaria. I replied that I was, and said it wasn't spontaneous it was definitely triggered within a minute of eating and the main symptom was face and neck swelling, not rash. He said take antihstamines, and I said I'd tried high strength ones for over a year and they did nothing to help really but steroids seem to help. He said the next step would be blood and other tests but obviously not at the moment. There seems to be only one private specialist Immunologist in this in Britain and she is not taking on any more patients due to high demand. There is no treatment path for MCAS or histaimine intolerance on the NHS and guess what? The only thing that helps is a mast stabiliser or steroids! My best plan is to keep calm and carry on with a very limited range of foods I can eat, which is essentially a modified keto diet. Good luck to you, as the first step do the food diary for at least 6 months and see if you can identify triggers. Some of my worst ones were tomato, yoghurt, pickles, fish - all the things I was eating to try and cure my gut health!
In 1993, I was tested by an allergist for a wide range of allergies. I reacted to sterile water. This led to a suspicion that I had Graves Disease, a thyroid auto immune disorder which was confirmed on further investigation. It might be wise to have a thyroid panel run.
My dad & I worked out sulfites and azo dyes (E102, E110)and just found out the Gravox which had caramel 3 (ammonia caramel) E150c , already knew about 150d but thought that was the sulfites. I presume also E150b but it doesn't appear to be used? (150a is fine).
E150c in Gravox so that gave us both severe thick mucous reaction within minutes, and povidone for me(asthma), and if I took Histame contains DAO(which seemed to disappear) I felt better. DAO is, If I recall right, an enzyme to break down histamine?
Ive got histamine intolerance, I could drink gin and vodka but my tolerance has decreased and I get full blown reaction to it now. According to my allergies app, gin And vodka are a histamine and dao liberator. Enjoy it while you can! Histamine is part of the bodies immune response so its definitely a factor for many.
Sadly the most common symptom with me starts with flushing and urticaria/ eczema and before Ive finished a glass of anything Im off to the loo. Its a tragedy really! But in all seriousness, sometimes my face goes wonky (swells on one-side as does my tongue). I feel very sleepy instantly and feel I can’t catch a breath so I'm not the sort to pop an antihistamine and hope for the best anymore like I used to. I carry an epi pen for wasp allergy and the symptoms are getting closer to anaphylaxis. I should add its taken years to reach this state, i’ve had lesser symptoms since I was a teenager and Im 40ish now! I follow anti histamine diet now under the care of Guilford immunology.
That sounds horrid, I’m so sorry. My niece had all sorts of peculiar problems with examinations, hospital spells etc. Then some years down the line an antihistamine seems to have done the trick, (fingers crossed). So I take it all seriously!
I have similar reactions, the first thing is mouth, neck, throat and chest swell up and the lymph node on the left hand side of the base of my neck. Sometimes racing heart but not always. Then a sudden overwhelming fatigue as if I've been drugged or someone has taken my batteries out, I have to go and lie down and take strong antihistamines. A while later over-active bladder for 24 hours and gurgling guts. I am relieved there are people in the NHS who don't dismiss it but I suspect I shall just have to avoid the triggers that set it off. As well as things I eat, the other main triggers are smells, I can't go near any kind of scents from flowers, candles, woodsmoke, perfume etc etc. I can control what I eat but not if someone comes near me wearing perfume.
Exactly!!!! Thats how it goes and I've omitted a lot of the really embarrassing stuff too! I get a reaction from nsaids and a lot of drugs I was given when in labour. I wake up early during general aesthetic and presently my biggest problem is bleach!!! And your right, the NHS dies not take it seriously, I was allergic to the venom therapy I had Which was to help with my wasp allergy. The Immunologist referred me to the dietician but there’s no cure other than avoidance. It feels like i’m allergic to life and I think itS causing chronic fatigue!
My biggest problem ATM is hand-sanitiser, it sets off a big reaction, and the bleach everywhere too. I've managed to find a low-odour one I keep in my bag if I go out rather than use the ones in the shops. Walking down hospital corridors was a nightmare last week they are so heavily sprayed. Oh it is so nice to finally find a fellow sufferer who understands! Though obviously sorry we are in it together!
Yes all chemicals for me are and issue and I can smell mould ‘a mile away’ too. It’s hard to go shopping and wLk near the cleaning product aisles. Oh and people’s perfumes and cigarette smoke! Hahaha - my friends say Im becoming the ‘bubble woman’. I’m really hoping it goes away as it impacts so negatively on my life and that of people close to me. Going to the office is a nightmare too. May not have to worry about that soon though as I am probably going to be retrenched - work in food safety and most our clients are restaurants and hotels.
Me too - fragrances, smoke some flowers, essential oils.... As you say food you can control - so I follow a generally low histamine diet and include pasture fed meats and poultry and as mucg organic food as possible. Of course everything as fresh as possible too.
My face / head goes numb, brain fog - cant get words out, heart races, overactive bladder, flushing. I also seem to raect to sugars.
Have you any idea what has caused your HIT? I'm none the wiser despite loads of research. I think it might be linked to inflammation from the PMR, particularly in my airways, and possibly something to do with mast cells.
As Amy Myers describes it, like a battle-weary army shooting its own side mistaking it as the enemy. My symptoms also corresond a bit with mastocytosis which is too many mast cells or mast cell activation syndrome whch is over-active mast cells though, which I'd like to rule out, but no chance of that when the immunologist says I can't posibly be allergic to that many foods and has never heard of either of those things. He is infamous in Facebook groups for HIT and MCAS for saying there is no such thing as MCAS, and the NHS doesn't have a treatment pathway for it even if he did believe it existed. There is only one Immunologist who does private diagnostic work in England and she is so popular she can't take on any more patients. So there isn't much I can do then. As always, Germany and Switzerland are ahead of the game.
So I remember being very sensitive to fragrances just before being diagnosed with PMR. I was really ill too apart from the PMR symptoms. Had terrible gut pain - of course I was eating high histamine foods - to ‘restore gut health’.
Leading up to that - I had done 7 months as a live in carer - working 7 days a week from 7am to 11pm in a very large Manor House - would take me almost 10 minutes to answer the front door. Client was fine - but the family was playing Downton Abbey with me - except I had to be the carer, cook, housekeeper etc all in one. All the glassware and cutlery etc had to be set out for each meal. All a bit ridiculous. I had always been very strong but remember feeling more and more unwell and thought oh well I am about to go on holiday. Left for Perth to see my children there and onto Sydney to go on a cruise with friends. I struggled. On the cruise I got very sun burned (unusual for me - but had had limited sun for three yrs). Something stung me. Ate prawns (not allergic but don’t do well with them) and jarred me knee badly. Went into a spa bath with loads of chlorine. I could hardly walk from pain when I got back to Perth and my flesh in my legs ached so badly too. By the time I got back to the UK I was in agony and had to be helped in and out of bed.
I’m sure some of my symptoms even then were histamine intolerance / MCAS.
Eventually going on steroids must have controlled it. I’ve always struggled to go lower than 7mg. Also became sensitive to lavender and had a bit of hayfever. I had never had allergies as such before.
But all the while I was trying to be as healthy as possible and merrily eating all the high histamine foods - still using creams and fragrances..... and feeling just awful.
Had pneumonia in South Africa Dec 2018 - loads of antibiotics etc.... and it really went haywire then. Had a very bad reaction to my perfume - my heart race so badly, I wanted to faint and I started shaking. Had a reaction to banana. I started slowly figuring out that I had HIT. Saw a functional doctor in Wimbledon. Stool tests did show very low commensal bacteria and especially one strain that is responsible for DAO production. DAO degrades histamine. Also have an overgrowth of Candida which increases histamine.
I also have psoriasis.
I’m just happy that I am currently on 6.5mg. I do try hard with my diet but I’m not always good. Sugar is a problem for me.
Sorry this was so long but I think there were so many pieces to the puzzle.
I also have massive exposure to black mould two years ago.
That's all vry interesting, thanks for the info. I know mold is a trigger for MCAS. I too was trying to cure my PMR by 'curing my gut' which is when I discovered things like apple cider vinegar, bone broth, yoghurt, kefir etc made things worse. I did my own elimination diet and figured what I reacted too then found all these things were also high histamine. I was fine while i was on Pred but problems came to light when I came off Pred in 2017 and was trying to find a natural solution to PMR through diet, I think the Pred might have been working as a mast cell stabiliser as when I am on steroids I can tolerate more foods.
I know - I didn’t put it together that it was good - just always felt awful. Even blamed the Pred. I had read somewhere that steroids could cause an allergy syndrome - perhaps I would think the way it can negatively affect the gut.
A nutritionist I consulted at the start of this said that if I wanted a drink I should go for gin as it is ‘pure’. Needless to say that chimed with my natural inclination 🤣 but I think she has a point!
According to ‘Baliza’ Intolerance app its sadly a no no but we all have individual triggers and tolerance levels, so if it works for you I’m very jealous! 🤪
I wonder if I have MCAS, how did you find out? I can get by and survive on a histamine free diet but it is a very limited range of food. I particularly miss tea, strawberries, cheese, tuna, herrings .... and just being able to eat out in restaurants witout wondering if I'm going to be ill afterwards
I have not had a MCAS diagnoses. I am just piecing things together. I see a functional doctor in Wimbledon. She is a GP but now practices functional medicine.
I have pretty bad chemical sensitivity too - mostlyy react to fragrances. I have a couple of autoimmune diseases and have wondered about Ehlers Danlos too as I am hypermobile. Apparently MCAS is common in this condition.
Yes I read that MCAS is common with EDS in my research, there are good support groups for both on Facebook. I think mine is probably more related to inflammation as I don't have other things. Thanks for the info
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