Update - weird 'allergic' reactions

[Slosh]

I wrote a while ago about weird reactions that I had been having to chemical like perfumes, cigarette smoke, sprays and foods, supplements , any additives, pollens, antibacterials.

My eyes sight would be affected, feel dizzy, mouth gets very dry, have a burny /cold feeling and feeling under skin and through vascular system.

Turns out that I may have histamine intolerance.

I am going to see a Functional doctor in Sept. She said she has another patient PMR also around 7mg Pred - developed histamine intolerance.

I went back to up to 10mg - then went down to 8 and stayed there for about 2 months.

Started 7.5 two weeks ago and over the last 3 days feel more tired than usual, heavy arms and have become a bit more sensitive again.

I work full time but fortunate to work from home & only go into office in London 1 X week.

On a very limited diet at present.

Anyone else have similar?

Xxx

[PMRpro Ambassador]

I have had what may be histamine intolerance - for years I had reacted to something, possibly in some heavier red wines, but we couldn't pin it down to anything specific. The immunologist said "just take antihistamines if you want to drink an unfamiliar red wine!!! It seemed to work.

I also had some form of allergy in early PMR which caused a rash but that improved a lot on pred although I did think it was returning at 5mg but I didn't stay there long and was back to 15mg a few months later. On the way back down again but nowhere near 7mg yet. It was quite specifically something in wheat starch from highly commercialised wheats. So far spelt and kamut have been fine as is the sort of flour used in French bakery. Strange ...

[Slosh in reply to PMRpro]

Thanks. I did read something about steroid induced allergies.

I wonder how the whole naturally produced cortisol compared to taking Pred would have different physiological effects in the bide.

Never really had allergies before - now I re-act to so many things.

It was more under control on 8mg and being extremely strict with wheat, dairy, night shades - other inflammatory foods and of course high histamine foods.

Reacted earlier today to anti bacterial wipes.

[Blearyeyed in reply to Slosh]

Are they starting you on any antihistamine therapy during the wait?

It is a horror having histamine intolerance , it's surprising how many things your body begins to react to , even things like wind or heat , and as you say the diet can become very restrictive.

Did you also give up yeasts and fungi foods , that is often a histamine trigger too.

[Slosh in reply to Blearyeyed]

I've given up all the histamine foods from lust that I have found. Didn't know about yeast and fungi.

Reacted to anti histamine - haven't tried another - too scared.

Have you had histamine intolerance?

[Blearyeyed in reply to Slosh]

They are considering that as part of my Ehlers Danlos / Dysautonomia that I may have something similar , MCAS , Mast Cell Activation Syndrome.

It involves these similar types of over stimulation to enviromental factors and allergy reactions , producing high level of Mast Cell activity in the body and producing Auto Immune reactions. Flushing skin , Dizziness , Sweating, Rashes and Pins and Needles.

That also involves using the trial and error of discovering and reducing your triggers and possible use of histamine H1 and H2 therapy and a larger nutrient supplement cocktail to help restore your mitochondria and start to decrease the Mast Cells creating the reaction.

They are similar conditions with very similar treatments.

It isn't unusual with either for you to need to use trial and error on various antihistamines and other drugs that you use ( NSAIDS often cause side effects or intolerance too ) before they get the right formula for your allergy reaction type.

You'll get there xx

[Slosh in reply to Blearyeyed]

Thank you.

[Slosh in reply to Blearyeyed]

Do you get a very dry mouth?

[Blearyeyed in reply to Slosh]

Yes , I was checked very early on for Sjorgrens and diagnosed with Sicca Syndrome very early on in my attempts to find out what is going on , even before the GCA/ PMR.

I have dry mouth and eyes , it also affects my swallowing , digestion and skin.

I have special lozenges to help produce more saliva , and various drops for my eyes that don't cause allergy reactions.

[Mary63]

I have quite a few food intolerances. Since slowly coming down from 7mg to 6.5 I have several times (6x so far) suffered hives.

I might have been tempted to go on a low histamine diet, but have actually managed to isolate what is the cause...either rosehip or hibiscus which is in most but not all of the fruit teas I regularly consumed. My job is to test and advise people on which foods are affecting them adversely. So i did have a head start!

[Slosh in reply to Mary63]

Oh wow - yes you did have a head start then.

When I reacted to banana and avo - I realised that it could be histamine intolerance.

I also reacted to fruit tea.

Can't even drink Rooibos - which isn't a tea at all.

Glad that you got to be able to identify it.

Will you try and introduce at some stage.

Mine is not just food. I avoid most chemicals. I have also become a little fearful of food and don't think that my diet is balanced.

After I reacted to the anti-bac wipes today - it's still burning under my skin on my upper arms - few hours now. The blurry vision and dizziness disappeared in about 10 minutes - I took a natural anti - histamine. Can't take over the counter anti-histamine X either.

[Longtimer in reply to Slosh]

Don`t have anything perfumed..and friends and family know not to as well.....when OH has to do something with chemicals...even shoe polish...the windows or doors have to be flung open...we are such delicate little things aren`t we...well that`s what I kid myself anyway...

Many foods upset my stomach...I try to stick to the same safe things...

[Slosh in reply to Longtimer]

Hahahaha yes - I feel like done drama queen - would have rolled my eyes previously at someone like me now!

[Mary63 in reply to Slosh]

Have you read Janice Joneja’s book?

[Slosh in reply to Mary63]

Which book is that.

[Slosh in reply to Mary63]

Do you practice privately?

And from where?

[Mary63 in reply to Slosh]

I will send you a PM

[SnazzyD]

I definitely became more allergic after 7mg though it has eased quite a lot now. My assumption has been that it may be a rebound effect after long term suppression of mast cell release of histamine by Pred. 7-5mg seems to be a watershed for various things so why not this as well?

[Slosh in reply to SnazzyD]

Oh right - thank you - good theory methinks.

Mine seems to be 7.5

[Pongo13]

I had chelitis, around mouth and difficulty getting rid of this with two antibac creams prescribed which did nothing. Cutting out sugar, and lots of other things, I.e. gluten, alcohol, low carbs, no makeup, bleach toothbrush daily, kept it getting too unsightly (my positive thinking). Then it went to my nose, inside and out - so after over two and a half years I have just returned to Dr (suggesting Dr Google thought it might be perioral dermatitis which can be caused by steroids ). Whilst he didn't agree, he said it was an infection, and he did give me a different antibiotic cream, minus steroids which the first two creams contained. Some three weeks later, using said cream (Naseptin) four times a day, it is finally much reduced. Finally some Success. Wish I had pursued earlier as I have had this unsightly infection for two and a half years! P.s. I'm loving your name, slosh.

[Slosh in reply to Pongo13]

Thanks for sharing - must have been awful.

I've also developed some patches that's are not my psoriasis - much harder.

Slosh is a nickname that Ivd had since 9. Funny really was on he tennis court at boarding school and a bunch of us little girls decided to make up nick babes - that one was do funny it stuck throughout school.

[Hidden in reply to Pongo13]

Make sure there's no nickel in your cutlery. I can feel my lips and corners of my mouth tingle and fizz if I use a fork or spoon with nickel.

[Slosh in reply to Hidden]

Mmm interesting - I had a nickel sensitivity as a teenager. Lived on a nickel mind in the then Rhodesia.

[Hidden in reply to Slosh]

You probably still have it. I have had it since childhood. Worse now than before.

[Slosh in reply to Hidden]

I'll have to do some research to see what has nickel in.

[Hidden in reply to Pongo13]

Not that I am suggesting you shoved cutlery up your nose.🤥😉

[Pongo13 in reply to Hidden]

Haven’t resorted to that! Unless the tweezers for the steroid beard and moustache are the culprit! Ouch x

[Hidden in reply to Pongo13]

🤣🤣🤣 But funny you should say that....discussed scissors causing reaction in thumb. Even surgical grade steel ones can have nickel and chromium in them.

[Pongo13 in reply to Hidden]

I have wondered if I reacted to the pins in my hip! Pmr makes your mind go crazy!

[Hidden in reply to Pongo13]

They will probably be titanium alloy. 😂😂😂

[Blearyeyed in reply to Hidden]

Blimey there's another one to add to my list!

Didn't even think if the reaction I get off scissors , and oddly pencils and jeans buttons , not just sore skin but like mini electric shocks and a weird taste in the mouth.

Better get the silver spoons out as well 😋😁

[Hidden in reply to Blearyeyed]

I used to get a rash where watch backs used to touch. Don't mention non sterling silver/gold earrings. Bra underwires etc all removed.

[Slosh in reply to Pongo13]

😂😂😂

[SheffieldJane]

Well my tolerance for allergens has gradually got worse. Blocked nose, dramatic sneezing fits, itchy eyes, Sandpaper mouth, a taste like I’ve been sucking a salt block all night, in the mornings. Quiet avoidance of things like air freshener, incense, candles, fabric conditioner, dust etc. All new within the treated PMR period. What is a functional doctor?

3 years 5 months Pred treatment for PMR. GPs too busy to explore.

[Slosh in reply to SheffieldJane]

Yip - and don't think they understand it.

A functional doc will delve into root causes and explore all different avenues.

Very costly but my first visit will be 1 & 1/2 to two hours with the doctor and then 1,hour with the nutritionist. They don't just follow conventional medical styles but incorporate diet and other lifestyle causes. I had to fill in an online form - took me two hours! Basically went back to birth.

We will see. She came highly recommended.

I just don't think the NHS docs can do much or get a good overall picture in 10 minutes.

[Blearyeyed in reply to Slosh]

It isn't just that , like with many areas of medicine relating to auto immune and chronic diseases they just don't have the knowledge either.

Most haven't done anything but read a few introductory chapters on certain issues whilst in Medical School.

I have had three Specialists admit that to me in the last four months in relation to the Dysautonomia , POTS and MCAS.

You have to be referred to a Specialist and they are not available in every area.

It's the same for things like Genetics testing and most of the Rarer Diseases.

I am going to go private now just to stop the delays in treatment that are coming from being pushed from one Department to another.

[Slosh in reply to Blearyeyed]

So very expensive though - but in the end will be worth it.

[Slosh in reply to SheffieldJane]

Yes I can't tolerate those things either.

[SheffieldJane]

We are only treated very superficially. No wonder alternative medicine thrives. I am an itchy mess. Nobody warns us.

[Slosh in reply to SheffieldJane]

I am so sorry. I think much of it could possibly have to do with the Pred and our own adrenals not functioning.

[Snowy12]

I too was allergic to the back of jeans buttons watches and and any type of metal earring as a child strange.

[Slosh in reply to Snowy12]

Now that you mention that - I have had reactions at times in the past to jeans buttons, earings, the metal bits of bras.....

[PMRpro Ambassador in reply to Snowy12]

Nickel - often after having earrings with nickel in them and using them too soon after piercing so the nickel gets in the bloodstream.

[Hellyowl]

Poor you. All my allergies disappeared when I started taking pred. They are slowly coming back now I am down to 2.5 mg.

[Slosh in reply to Hellyowl]

Oh goodness - just the opposite then. Cortisone does control allergic reactions.

[Hellyowl]

It is difficult but after reading lots on this blog I wonder if for come people it is PMR/GCA that changes our bodies and results in sensitivities and allergies. And Pred is not enough. Dr.s don't seem to worry much about fide effects

[PMRpro Ambassador in reply to Hellyowl]

The underlying autoimmune part is very likely involved. It doesn't just cause PMR/GCA - in my case (and others) it damaged the electrical cells in the heart and caused arrythmias of various sorts.

[Slosh in reply to PMRpro]

Also being assessed now for electrical impulse issues in both upper and lower ventricles.

[yewtree]

Fascinating to read all your comments and to know that I am not the only person in the world with a host of intolerances and numerous auto-immune diseases - more coming by the minute! We just have to keep battling on and whistle a merry tune!

[Purplelamp]

This is interesting. I haven't read all the thread yet but I have developed symptoms of allergies. Nose closes up, throat seems swollen on one side, eyes dry yet one of them sometimes runs. It is awful when it starts. The whole inside of my head is affected. It can last a couple of days then disappear. Ive never had allergies before. I am on 8mg tapered from 30mg.

[PMRpro Ambassador in reply to Purplelamp]

What about keeping a diary of diet/activities to see if you can identify a link?

[Purplelamp in reply to PMRpro]

Good idea. I will do that.

[Slosh in reply to Purplelamp]

Sorry to hear - it's so frustrating.