allergy immunotherapy

[Outoflife80]

Did anyone of you heared of allergy immunotherapy? If yes was it successful?

[JingleJohnsJulie]

Never heard of it. What does it entail?

[LNSL]

Yes - my son and husband have both had it for hay fever. Son is 90% better, husband 70%. It was quite expensive but worth it!

[RockNRollNerd]

DS had the peanut immunotherapy. It worked very well. He mustn’t actively eat peanuts but the risk of anaphylaxis if he accidentally has them is now tiny.

Basically he can’t go into an Asian restaurant and order satay but if there are peanuts in the noodles and he has a mouthful it shouldn’t kill him. He’s accidentally had peanuts once since the treatment - he knew straight away but piriton brought the reaction down straight away and he was fine.

[fairydustandpixies]

Yes for DS1 and a nut allergy. Worked brilliantly. No for me though, hayfever and other rhinitis type allergies.

[ChateauMargaux]

@RockNRollNerd. Thank you for sharing your son's story. That sounds amazing. How old is he? What age did he start the therapy? How long did it take? Does he have to carry on having small doses of peanut to retain his tolerance? Does he have other allergies or other health concerns like asthma or eczema?

Sorry for the list of questions... my son has peanut allergy but also has other allergies and asthma.

[RockNRollNerd]

He was 11 when he started. The treatment is full on - best part of half a day fortnightly 7 times while they increase the dose each time. You have to stay for a couple hours after the up dose to be monitored. Then you go onto maintenance dose for two years which is the daily dose. After that you scale back down over a few weeks until you are on the maintenance dose once a week. We are 4 years in now. The weekly maintenance dose phase continues for a long time but you get tested annually to see how far the reaction levels are dropping.

It is a big commitment in terms of time and money and I am so grateful we were in a position to do it. The peace of mind it gives me especially now he is older and I cannot control everything he eats is priceless. Similarly waving him off on school trips and scout camps etc is a lot less stressful these days.

He had eczema but not asthma and tolerated the uprising pretty well each time although it always made him feel a bit sick and strange in his stomach.

Happy to answer any questions no need to apologise.

[Onwardsandonwards]

We are doing it right now! My child is 18 months and has multiple allergies, we are doing it for peanut at the moment.

[Graffitiqueen]

yes both my kids have taken part in clinical trials. Was a huge time and money commitment, but has been absolutely life changing and potentially life saving.

[boobybum]

Can I ask where you go for treatment, how much it costs and also how one would get it - does the GP need to refer?

[Flippyferloppy]

I've just started it for my grass pollen allergy, which is severe (just walking through grass brings my legs out in hives).
Regime here is 1 per week 4 times 4 weeks, then 1 every other week 4 times, then 1 per month 4 times.
I'll be done in July, but I have to do it 3 years running.
It's a tiny injection under the skin, after which you have to hang around in case of an adverse reaction. I was at the hospital 2 hours-ish.
I've had quite a strong local reaction at the injection site, which is still itchy 4 days later. I used an ice-pack on it on the first evening, but the doctor told me it was fine to take an antihistamine if I felt the need.
It's a bit of a bind but, to be honest, my allergies had me at my wits' end, so any form of improvement will be a huge bonus.

[Graffitiqueen]

@boobybum my DC had treatment at St Mary's hospital in London on the SOCMA and BOPI trials. Treatment was free but we had to pay travel and accomodation costs. We had to travel to London every fortnight for updosing for a year so pretty onerous in terms of time and cost.

clinicaltrials.gov/ct2/show/NCT02216175

clinicaltrials.gov/ct2/show/NCT02149719

They aren;t taking on anyone new right now becasue of Covid, but they are looking for more volunteers once they are able to.

email Paul or bettina, email adresses in those links

[iamme21]

My DS had this treatment for his grass and tree pollen allergy (severe). He had the treatment over 8 weeks between January and March for three years- unfortunately for him it didn’t work and his heyfever is as severe as ever. He also has eczema and asthma.

[RockNRollNerd]

@boobybum

Can I ask where you go for treatment, how much it costs and also how one would get it - does the GP need to refer?

Addenbrookes in Cambridge offers immunotherapy for peanut allergy but only as private treatment. I can’t find prices on line anywhere but it’s not cheap. The first seven appointments were about £2k each I recall and then it’s a few hundred a year for the maintenance doses and annual check up.

[boobybum]

Graffitiqueen and RockNRollNerd Thank you for letting me know where you accessed treatment. We’re up in the North so unfortunately I don’t think either of those hospitals will be feasible. If anyone knows of any places in the North/North East that would be much appreciated.

[Allgirlskidsanddogs]

Yes, tested as having a severe reaction grass pollen.

Had 3 lots of 6 month courses of pollen pills, have to dissolve under the tongue. They say it’s a rule of thirds, a third will no longer need medication, a third will be better but still need to medicate and a third will see no or very little improvement. I’ve finished the final course and think I fall into the middle third, better but still needing medication.

Mine was done on nhs in regional hospital nearly an hour away. An assessment visit then had to wait fir a space to start and then a visit to start each course. I should have had a final testing visit to finish but COVID-19.

My allergy was restricting during pollen months. I’m glad I had the desensitisation.

[Xerochrysum]

Yes, my dc is going though this 3 years treatment at the moment, this is the final year. So far so good for my dc. But I heard others had mixed experiences, some had to stop due to severe side effects.

Basically we take a meds that contains tiny amount of concentrated allergen everyday, for 3 years. It need determination and routine. So it wasn't recommended for young children.

[Graffitiqueen]

It all seems to be in London boobybum. We're in Scotland and travelled down by train every two weeks. It was expensive but we were initially going to pay the £20k+ and the travelling to london on top. Would totally have been worth it but very grateful to have got it on an NHS trial.

[WoodpileHouse]

Yes. My friend's child had it, very successfully.

[monkeywrench]

My daughter had it but we had snot stop after the 3rd or 4th injection because her reactions became progressively worse. Her arm reacted badly at injection site from the first time, getting progressively worse until the final time she had breathing difficulties that didn't start until a few hours after the injection when we were back home. Luckily it was controlled with antihistamine. But then the doctors said we should discontinue the treatment. Last year her hayfever was I felt a bit better than normal but she did have to take antihistamines regularly.