New here to the glycol allergy page

[Balletmum71]

Hi . I'm new here to the allergy glycol page and I'm so pleased I've found a forum so I don't feel so isolated.

I have Rheumatoid arthritis and belong on their forum but I had an allergic reaction well full anaphylaxis to macrogol or polyethylene glycol in a biological drug I tried called cimzia.

I can't take antihistamines as it contains PEG or macrogol and since the anaphylaxis have now developed a high response to medicines with or without macrogol or PEG .

I'm currently suffering from pneumonia and a severe tooth abscess and I'm on steroids for asthma and breathing difficult ies

I'm viewed with suspicion at my local hospital whilst my immunology team are fab and are concerned about this macrogol allergy and altogether highly reactive immune response.

I'm learning how to avoid PEg in products but boy what a minefield

I'm lookn gfor a antibacterial mouthwash without peg or macrogol .

Are there any ?

Thanks for reading this and if I can help in any way I will .

Thank you again

Becky.

[findtheanswernow]

I finally found a PG free antihistamine. “Sleepinol” is basically two Benadryl’s at once. But no PEG.

[Balletmum71 in reply to findtheanswernow]

Okay , thank you for that findtheanswernow . Very useful .

[Mskin in reply to findtheanswernow]

Hi, are there PEG in Benadryl? For the past year, I developed severe dyshidrotic eczema and the corticosteroid cream was not helping at all. After insisting on taking allergy tests, it was discovered that I have severe allergy to PEG... which is also in the corticosteroid cream. The severity of the allergy is increasing and on 2 occasions I took Benadryl to reduce the swelling but it made matter worst. Half of my face developed a rash. I had Benadryl in the past but never had problem with it until now! Same with PEG, which is in wine. I drank plenty of wine before and now, I cannot drink it anymore without getting severe flare ups of dyshidrosis.

[Balletmum71 in reply to Mskin]

It's in Wine ?? I can't drink wine anyway because of my rheumy meds but I had the same reaction to you when I tried a few mouthfuls .

Wierd isn't it.

I'm going for testing on 09/01/20. For a skin prick test . Could be interesting!

Thanks for reply.

Oh do you have a anti histimin e you can take ?

Immunology has said try cetirizine in liquid form.

Maybe an idea for you as it shouldn't contain PEG.

I'm in the UK btw.

[Mskin in reply to Balletmum71]

Thanks for the information, I haven't found an anti-histamine I can take yet but I'm still looking. One month after stopping all wines and my skin is back to normal! No flare-ups!

[bestusedbyblue in reply to Balletmum71]

Try looking at children's medication. You might have to take it more often, but it doesn't seem like they are giving the kids all the chemicals, except in candy. This in one place I have had the most luck finding things I can take. And I am getting so tired of reading labels. To check out a medicine, Google: Label Fda-medicine name, ingredients are on the last or next to last page.

[findtheanswernow in reply to Mskin]

Yes- there is PG in Benadryl! It is VERY difficult to find medicine- both prescription and OTC that does not have PG or PEG. From whAt I understand it’s in the coating of the tablet or capsule to help make it extended type release.

The one substitute I have found is Sleepinol - it’s the equivalent of TWO Benadryl so may need to only take 1/2 of it.

[Mskin in reply to findtheanswernow]

Oh great, thanks, I will look for it!

[Jacquie7]

Coconut Oil is best for gums and teeth. I use it everyday for over a year now. My dentist can't believe the difference in my gums and teeth. My gums don't bleed and my teeth enamel has been restored. Very hard to find products.

Jacquie

[Balletmum71 in reply to Jacquie7]

Thank you Jacquie7 unfortunately I have to avoid all nut oils as well . They are investigating Mast cell disorder .

Although I believe an underlying infection that's been long standing in my lungs an gums caused the trigger as it weer.

I'm on immunosuppressive meds and it's suppressed things so much it's not until I'm seriously ill that things show .

But thank you for replying. I think maybe it is just salt water washes for now?

[Balletmum71 in reply to Balletmum71]

Hello .just to let you know I had the tooth extracted and two lots of antibiotics which I tolerated really well.

I've come off tramadol a pain killer because it made me breathless and my stomach sort of stopped working .

No PEG in it though.

I think my body has just had enough though .

Hope you are keeping well

[Olimum]

Thank you for this post. I have had strange unexplained rashes for YEARS along with numerous chest infections and asthma flare ups. Anaphylactic episode a few years ago following ibuprofen/paracetamol. Been on daily antihistamines for years, often prescribed Prednisolone steroid but these bring out rash reaction….finally getting to understanding that PEG/Macrogol is probably underlying issue and now realising that this is in my daily antihistamine too! Had reaction to recent flu vaccine which has brought all of this to a head. Anyway, your story sounds very familiar (especially being viewed with suspicion - it has been a hard slog getting anyone to think through possibilities) Thank You

[2dog5]

My anaphylaxis was also to Cimzia and not it has meant there are so many arthritis meds I can take. I am in Australia and I am still working out meds and I find that is I take meds with peg orally I realise when I get an upset gut so I’m like oops maybe shouldn’t have taken that. I took Zyrtec after the anaphylaxis but I didn’t know it was PEG then and I haven’t tried it since

[Debduck in reply to 2dog5]

I'm in Australia too- Chemists Own Loratadine is PEG free. I check everything before I take it on the TGA website- go to the ARTG search page and type in the brand or Aust R number (for prescription meds) or Aust L number for over the counter ones and it will give you all the inactive ingredients too. I would get an upset gut with some of them but then hives and puffy eyes with others and then eventually a more severe reaction where I used an Epipen. Have you tried having your medication made at a compounding pharmacy?

[2dog5 in reply to Debduck]

Thanks for that I find the over the counter meds the hardest to find info on.. So far most of my meds have been ok so I haven’t had to go compounding but I can’t find a reflux med that is can take the doctor just changed me to ranitidine but it has gone off the market.

[Debduck in reply to 2dog5]

The only way to be sure about over the counter meds is to check the inactive ingredients on the TGA ARTG website yourself !!! I had a nasty reaction to Zyrtec a few years ago - the pharmacist and the drug company had assured me there was no PEG in it. When I had the reaction I contacted the TGA and they confirmed there was PEG in it. I had oesaphgitis/reflux for a few months which was all related to PEG - once I cleaned up my diet and kept away from PEG it went. I had omeprazole made up at a compounding pharmacy. Good luck !! I can tell you what brands of over the counter meds I use let me know.

[gothchiq]

For mouthwash, I use hydrogen peroxide. Just don't swallow any. It is listed as "oral debriding agent" on the bottle, meaning it is considered safe for this use.