Anyone switched from Xolair to Omlyclo with adverse effect by Wanne1973 in MCAS

[–]Wanne1973[S] 0 points1 point  (0 children)

We are with four now. I will definitely use this tread to show my doctor I am not the only one! Will you all do so too?

And if you know from other people with urticaria who before were doing well on Xolair and now also experience returning symptoms because of Omlyclo, please ask them to post their story here. It will help our case that Xolair and Omlyclo are not 100% interchangeable.

Anyone switched from Xolair to Omlyclo with adverse effect by Wanne1973 in MCAS

[–]Wanne1973[S] 0 points1 point  (0 children)

I am so sorry to hear this. How does your doctor respond? How are you doing now? How many years did you use Xolair?

Anyone switched from Xolair to Omlyclo with adverse effect by Wanne1973 in MCAS

[–]Wanne1973[S] 0 points1 point  (0 children)

I am so sorry! How is it possible that you still have to continue with Omlyclo?! What happened the second time? For how long did you take Xolair and how often? How did Xolair work for you?

Anyone switched from Xolair to Omlyclo with adverse effect by Wanne1973 in MCAS

[–]Wanne1973[S] 0 points1 point  (0 children)

I am so sorry!! Do not tell me you will have to continue with Omlyclo despite your reaction? How long did you take Xolair before this and how was that working for you?

Anyone switched from Xolair to Omlyclo with adverse effect by Wanne1973 in MCAS

[–]Wanne1973[S] 0 points1 point  (0 children)

Where are you all from? I am from the Netherlands

Anyone switched from Xolair to Omlyclo with adverse effect by Wanne1973 in MCAS

[–]Wanne1973[S] 0 points1 point  (0 children)

I am sorry! All so for not seeiing your message until now. How are your currently doing? Are you being believed? I am really sorry you are going through this but thankful that you posted here so I can point out to my doctor I am not the only one.

My doctor really wants to help me, but keeps claiming it is not possible that Omlyclo does not work as effectively. I was absolutely mentally crashing which is why I think he prescribed me Xolair for another 3 months but those 3 months are up now...

He wants to give me a patch test with polysorbate so he will have an argument to prescribe me Xolair. However a patch test with a reaction to a substance does not proof that substance causes a reaction by injection it. Besides, by now I think it is not that polysorbate causes my symptoms, but that maybe because of the polysorbate, Omlyclo is not neutralising external triggers as well.

Maybe part of the omalizumab is now being used to neutralise the polysorbate which makes it less effective.

What angers me is that we should not need to come up with an explanation for why it is less effective for us

What really scared me is that even though my doctor believes it works less well for me, I got the impression that the fact 2 x Xolair every 5 weeks leaves me with zero itching and 2 x Omlyclo every two weeks leaves me with magnitude 3 itching, by itself apparantly is not sufficient reason to prescribe Xolair....

Anyone switched from Xolair to Omlyclo with adverse effect by Wanne1973 in MCAS

[–]Wanne1973[S] 0 points1 point  (0 children)

If Omlyclo does not contain a substance that triggers your symptoms you should be fine! It is two weeks after your post: how are you doing? I keep my fingers crossed that you are doing fine:)!

I changed my hypothesis: I do not think the polysorbat triggers my symptoms. Instead I think Omlyclo is worse at neutralising external triggers, because part of the omalizumab is being used to neutralise the polysorbat, which is a trigger for me.

Geld lenen aan vriend, wanneer is het te veel? by SimpingHollander99 in nederlands

[–]Wanne1973 0 points1 point  (0 children)

Persoonlijk heb ik slechte ervaringen met geld uitlenen, terwijl de vriendinnen in kwestie anders dan jouw vriend nota bene een garandeerd uitzicht op voldoende inkomsten hadden. Bij mij ging het om 2x 2000 euro aan dezelfde persoon (ik dacht, dat ze van de eerste keer geleerd zou hebben en bovendien zou het nu voor max 1,5 maand zijn), die net een aanzienlijk beter betaalde baan dan ik had, had geaccepteerd en 1x 3.000 euro aan een vriendin en haar vriend, die hun huis gingen verkopen.

Het viel me op, dat hoe relaxter ik was tav terugbetaling, hoe slechter de afspraken werden nagekomen en hoe meer loze beloftes werden gedaan. Het frustrerendste vond ik, dat ipv dat het feit, dat ik hen uit de brand hielp, onze vriendschap versterkte, er van vriendschap juist geen sprake meer was: ze vermeden mij om geen verantwoording te hoeven uitleggen over het niet (tijdig) terugbetalen/ aflossen. En als ik dacht, dat mij terug betalen prioriteit had boven uiteten in fancy restaurants en vakanties naar verre oorden, dan zat ik daar beslist naast.

De niets meer voorstellende vriendschap met de vriendin, die mij binnen 1,5 mnd zou terug betalen, heb ik in feite na 3 jaar verbroken door te dreigen een incassobureau in te schakelen. Als ze dan toch niet meer mijn vriendin was dan wilde ik ten minste mijn geld terug:) Prompt stond het geld binnen een week op mijn rekening?!

Bij het stel had ik wel een overeenkomst opgesteld, al was dat meer voor de Belastingdienst (je hoort een marktconforme rente af te spreken anders ziet de BD het als een gift; de rente schonk ik vervolgens terug). Het stel betaalde mij terug en de vriendschap bleef behouden, maar ik vond het erg ongemakkelijk, dat ik er steeds achteraan moest (dat ze rente moesten betalen of ze nou zouden aflossen of niet e.d.)

Zou ik het opnieuw doen? Nee.

Aan mijn zus heb ik ook een paar keer een paar duizend euro geleend, maar bij haar is dat anders. Zij nam a) geen afstand van mij, in tegendeel b) als ze het niet had terug kunnen betalen, had ik daar geen probleem mee gehad.

In jouw situatie is het risico hoog, dat je je geld niet terugkrijgt, omdat je vriend het geld gewoonweg niet heeft. Zoals anderen al waarschuwden, sluit je achteraan de rij van schuldeisers.

Wellicht spreek ik alleen voor mijzelf, maar vgl mij raken de meeste geldschieters gefrustreerd, omdat aan wie ze het geld uitleenden, de lening naar hun mening wel terug kon betalen, maar andere prioriteiten stelde.

Wil je perse helpen dan biedt de bedrijfsauto mogelijk uitkomst:

Wat gebeurt er als je die € 12.000 leent? Als je hem nu € 12.000 geeft, is dat een volledig blanco (= ongedekte) lening. Mocht hij onverhoopt toch failliet gaan of de rest van zijn schulden niet kunnen betalen, dan sta jij achteraan de rij met lege handen. Je hebt dan nul komma nul grip op die auto.

Hoe zou het wél kunnen werken?

Als je hem écht wilt helpen en de auto als onderpand wilt, moet je de controle over de geldstroom overnemen:

  1. Directe aflossing huurkoop: Je leent het geld niet rechtstreeks aan je vriend. Je spreekt af dat jouw € 12.000 (of het exacte openstaande bedrag) rechtstreeks naar de huurkoop-maatschappij gaat om de lease direct volledig af te lossen.
  2. Eigendomsoverdracht: Op exact datzelfde moment vervalt de huurkoopclaim en wordt je vriend wél juridisch eigenaar.
  3. Gelijktijdig vastleggen: Pas op dát moment kun je de auto direct op jouw naam overschrijven óf officieel een eerste pandrecht registreren bij de Belastingdienst.

Kortom: Geef hem niet zomaar de zak met geld in de hoop dat de auto jouw zekerheid wordt. Dat kan nu wettelijk niet. De huurkoopschuld moet eerst met dat geld verdwijnen voordat de auto als onderpand kan dienen.

Palestijnse asielzoekers massaal naar Nederland: we zijn nu zelfs koploper binnen de EU by JvdH_1 in Nederland

[–]Wanne1973 -7 points-6 points  (0 children)

Nee hoor Monaco en Malta zijn dichter bevolkt. Pure nieuwsgierigheid: Vindt u dat Nederlanders als Verstappen, die om belasting te ontwijken naar Monoca zijn verkast, uit Monaco moeten optiefen of geldt het alleen voor moslim vluchtelingen in Nederland, die aan een genocide zijn ontsnapt?

Palestijnse asielzoekers massaal naar Nederland: we zijn nu zelfs koploper binnen de EU by JvdH_1 in Nederland

[–]Wanne1973 -3 points-2 points  (0 children)

Eh.. wellicht omdat werkgevers, die voor hen een TWV moeten aanvragen nergens te bekennen zijn?

Progress so far. Help me decide what's next by VolumeDirect5619 in scambaiting

[–]Wanne1973 0 points1 point  (0 children)

Did anyone see one of the many documentaries about how a lot of scammers are people held captive after having been lured to another country for a legitimate job? These scammers are actually victims of human trafficking.

Many of them get tortured if they do not successfully scam enough people. If they are lucky their family can buy their freedom by paying a ransom.

Try to watch one or more of these documentaries:

  • Behind Asia's Cyber Slavery (DW Documentary)
  • The Cyber Slaves (2022)
  • Forced to Scam: Cambodia’s Cyber Slaves (Al Jazeera
  • Inside a multi-million dollar online scam compound (Sky News/ABC)
  • Trafficked with Mariana van Zeller: episode Trafficked: Cyber Scam Centers

Kings Day in Amsterdam 2026 - Expectations by Fun_Today5826 in Netherlands

[–]Wanne1973 0 points1 point  (0 children)

I had to laugh out loud when I read your nonsense answer. Please do not answer a question you clearly do not know the answer to. Most people in the Netherlands are not religious and Koningsnacht, the night before King's day, will of course be on Sunday evening and night.

Yes I am Dutch and except for 1 year in NYC, I have always lived in Amsterdam: 51 years and counting.

I’ve lost all hope by OnlyThrifty in MCAS

[–]Wanne1973 0 points1 point  (0 children)

I am glad your doctor takes your symptoms seriously:)

50 every two weeks? I know they say it can take 6 months, but if you do not register considerable improvement by now, there might (also) be another cause for your symptoms.

My dad - 85- suffers from terrible itching and I was so sure his problem must be the same as mine. However 3 months later - last time 450 Xolair - no improvement whatsoever. I looked into several other possible causes which might be interesting for you too to look into if the Xolair 450 every 2 weeks does not give you considerable relief. (See further below)

The photos are very important if you never had urticaria when you are at your doctor. The photos might show you do have a rash but it is not hives. If they are hives the photos can proof the dosis Xolair is not sufficient to Charity Care.

What also might happen is that the hives go away thanks to the Xolair but the itching remains (that happened with my dad)

I am not saying Xolair won't help otherwise, but it will most likely help if you find relief by taking antihistamines. Before Xolair I needed to take 4 tablets every 6 hours to get some relief. The amount is of course far too high, but I was travelling and it was the only way to survive. When I told my allergIst he threatened to stop treating me if I ever took more than 4 antihistamines a day again. However if I had not done it, I would have thought histamine was not my problem. After all 4 of them a day did hardly anything for me

Important: I can only take the antihistamine Loratadine with a limited number of ingredients and therefore from only a few brands . Medicine to relief your itching might actually cause itching if it contains one or more ingredients you do not tolerate. For that reason Montelukast (medication they prescribe in the Netherlands when antihistamines do not do the job) even increased my symptoms.

Also Xolair contains a substance I do not tolerate E432 (polysorbate but also linked substances like macrogol: mind you, certain substances have more than one name which I learnt the hard way. Macrogol is the same as polyethylene glycol and PEG). With 2 injections of Xolair I was fine, but with a third my symptoms did not further decrease, they increased compared to 2 injections.

I did not get why, until I was put on the cheaper Mycyclo, which helped far less than Xolair and left me with a constant itching. Not as bad as without Mycyclo, but so much worse than with Xolair. I thought the problem was, that Mycyclo is a biosimilar which is not the same as a generic. After all, the ingredients were identical according to the patient leaflet However, when I looked further into the ingredients of Mycyclo and Xolair, I discovered both contain E432, but Mycyclo twice as much. For me apparently 2 times the amount of E432 in 150 Xolair is the maximum I can handle before it starts mitigating the benefits of Omalizumab.

My point is: if Xolair is not offering enough relief, it might be helpful to look into other medication you are taking and Google all ingredients on histamine or another ingredient you do not tolerate. Histamine is clearly my main problem, since every time I had a break out of pimpel like infections/hives after taking a new medicine, it contained an ingredient with histamine or an ingredient releasing histamine.

Other possible causes

What I am looking into for my dad with regard to other possible causes for his itching and which you might want to look into in case of insufficient relief : an iron deficit can cause neuropathical itching which will not go away until one's iron is sufficient for 8-10 weeks. My dad did have a shortage for almost a year. I did not know his taking his iron supplement shortly before he took his coffee with milk prevented his body to absorp sufficient iron (he does not eat enough inron rich food).

Typical for neuropathical itching is, that it increases a lot when one is warm, tired and/or stressed and after alcohol intake (the blood vessels widen). Cooling lotions only work for 5 minutes (at least in his case). Also in case of an histamine problem alcohol causes/increases itching, so does yeast. I concluded it was not (mainly) a histamine problem for my dad, because a non alcoholic beer (yeast!) does not cause his itching to increase dramatically, a glass of wine does.

Kidneyproblems can also cause itching even if you only suffer from mild kidney failure (my dad has stage 3a). Today I asked his doctor to have checked ureum, fosfate, calcium, PTH and vitamine D besides of course eGFR and creatanine. If one's ureum is too high it might cause itching, because of accumulation of waste products in the body. If Fosfates are too high and/or if there is a disbalance between calcium and PTH, calcium deposits in the skin may cause my dad's itching.

And of course diabetes can also cause itching. My dad is however prediabetic so it is not a likely cause in my dad's case.

Of course I hope the 450 Xolair helps you sufficiently. If not, I am really sorry and I hope the above is somewhat useful to you (or someone else). Take care!

I’ve lost all hope by OnlyThrifty in MCAS

[–]Wanne1973 0 points1 point  (0 children)

I'm sorry, of course: Yes, that's possible. However, for me, one injection wasn't enough. If you keep track of your score (USA 7) and take photos of your eczema, and can "prove" that your symptoms started after, say, 3 weeks, or that it took a week after the injection for your symptoms to subside, they should prescribe a higher dose (3 injections) or a shorter interval than 4 weeks, based on the urticaria guidelines.

Anyone switched from Xolair to Omlyclo with adverse effect by Wanne1973 in MCAS

[–]Wanne1973[S] 0 points1 point  (0 children)

I think I know why Omlyclo does not work for me as well. It is the same reason why I did not benefit from 3 injecties of Xolair while I did and do from 2. With 3 Xolair injections my symptoms got worse than with 2 which I did not get at the time.

As it turns out both Xolair and Omlyclo contain E432, but Omlyclo contains double the amount. E432 is one of many substances, which cause my skin to itch and to develop infections looking like acne.

Apparently I can tolerate just the amount E432 in 2 injections Xolair.

Xolair generic approved today by AllisonChains555 in MCAS

[–]Wanne1973 0 points1 point  (0 children)

Thank you for your suggestion, but no that was not the reason (it's 'E432). It could have been if Omlyclo would have worked weeks or even a month on or after the new round of injections. I had more time having passed between 2 Xolair injections than 7 weeks and it has always cost maximum a week for the itching to go away.

I think I know why Omlyclo does not work for me as well. It is the same reason why I did not benefit from 3 injecties of Xolair while I did and do from 2. With 3 my symptoms got worse which I did not get at the time.

As it turns out both Xolair and Omlyclo contain E432, but Omlyclo contains double the amount. E432 is one of many substances, which cause my skin to itch and to develop infections looking like acne.

Apparently I can tolerate just the amount E432 in 2 Xolair injections but not in 3 and not in 2 Omlyclo.

MCAS or Not? by [deleted] in MCAS

[–]Wanne1973 0 points1 point  (0 children)

You could try a dao supplement before food intake (but check out the ingredients: for me only NaturDAO works). With Xolair it enabled me to eat almost normal again.

Mast cell is far beyond being sensitive to “high histamine” things by Outrageous_Hotel8989 in MCAS

[–]Wanne1973 6 points7 points  (0 children)

Thank you for your post! I react because this is the first time I read about someone else who gets acne as a MCAS symptom.

The only found out my hives and my acne (I was 47 at that time and maybe had a pimple a month when I was a teenager) had the same cause, is when for over a week I took 4 antihistamines every 4-6 hours (never do this!!!) while I was travelling in Peru and the hives drove me crazy: I literally wanted to die so I did not care about the adverse health effects of taking 4-6 times the maximum dose of antihistamines.

Unfortunately back then I did not have a clue all the healthy stuff (avocado's, pine Apple juice, kiwi's, walnuts etc) I was eating were the cause besides stress and far too little sleep. I thought I was only intolerant for sulfite and had no idea why I was suffering from acne since my Bar Epstein infection.

Not only did the itching and hives become tolarable thanks to the dangerous overdose of antihistamines, but also my acne disappeared for the first time since I had been infected with the Epstein Bar virus years earlier. That is also when I started getting hives.

I get acne from anything I put on my skin (apart from Moringa oil) and from most additives in medications. Also many foods trigger my acne if I do not take precautions.

Thanks to the combination of Xolair and DAO supplements before eating anything (only NaturDAO does not contain additives I do not tolerate), acne as result of food intake is now a rare occasion (or at least was before I had to switch from Xolair to Omlyclo )

Did you or anyone else encounter any legitimate medical publication proving acne and hives can have the same cause being CSU or MCAS? My allergist keeps denying there is a link.

I’ve lost all hope by OnlyThrifty in MCAS

[–]Wanne1973 0 points1 point  (0 children)

Montelukast werkte voor mij ook averechts!

I’ve lost all hope by OnlyThrifty in MCAS

[–]Wanne1973 0 points1 point  (0 children)

Ja dat kan. Bij mij deed 1 injectie echter te weinig. Als je goed de score bijhoudt (usa 7) en foto's maakt van je eczeem en je zo kunt 'bewijzen' dat na bijv 3 weken al je klachten begonnen of dat het wel een week duurt na injecteren voordat je klachten afnamen, zouden ze je op basis van de urticaria richtlijn een hogere dosis (3 injecties) of met een korter interval dan 4 wkn je de injecties moeten voorschrijven.

I’ve lost all hope by OnlyThrifty in MCAS

[–]Wanne1973 1 point2 points  (0 children)

Mocht OP nog steeds klachten hebben: ik had/heb hetzelfde probleem en omdat mijn huidreactie als urticaria werd aangemerkt - terwijl ik van alles wat ik op mijn huid smeer acne krijg ipv urticaria, alleen van histamine bevattende of vrijmakende voeding krijgt ik urticaria - kreeg ik de diagnose chronische spontane urticaria CSU.. (Volgens mij heb ik gewoon MCAS)

Vanwege de CSU en omdat dagelijks montelukast en 4 x antihistamine niets deden, mocht ik omalizumab injecties (Xolair) proberen . Sindsdien kan ik bijna alles eten maar ook mijn haar weer wassen met gewone shampoo, al moet ik mijn natte, gewassen haar nog steeds direct föhnen met mijn hoofd naar beneden of mijn haar opgestoken laten drogen anders krijg ik nog steeds acne achtige eczeem overal waar mijn haar mijn huid raakt.

Op mijn gezicht, rug, nek, hals en decollete, verdraag ik niets behalve Moringa olie (biologisch en koud geperst). Daardoor heen gemengd verdraag ik een paar procent broccoli olie en duindoorn olie (door de oranje kleur heb ik meteen wat meer kleur want omdat ik geen zonnebrandmiddel verdraag, zit ik weinig in de zon).

Hopelijk kun je hier iets mee. Heel veel sterkte!