Montelukast and ChurgStrauss

[Ploverette]

I have ChurgStrauss vasculitis and asthma. Been prescribed Montelukast to help with cough but have heard of this medicine causing ChurgStrauss so rather worried about taking it in case it causes a flare up. Is anyone else in the same situation? Be grateful for advice. Thanks

[Xiave]

My understanding from what I've read is that the link between montelukast and churg strauss was because montelukast allowed the patients to reduce their steroid doses, and the steroids had previously been suppressing churg strauss syndrome - so it wasn't montelukast itself but the fact that it allowed them to reduce steroid doses. (This is my understanding from the studies and literature I've read)

I would say if you're worried about it definitely speak to your medical team about it. Churg strauss is reasonably rare so I think your doctors' specialist advice will be much better than anything anyone can give here.

[Ploverette in reply to Xiave]

Hi Xiave, many thanks for that, it does give me a clearer understanding of the dilemma. I have been in touch with my consultant to ask his advice and am awaiting feedback. Will let you know what he says. Thanks again

[Ploverette in reply to Xiave]

Just to let you know I heard from my consultant today re taking Montelukast. His advice is to avoid taking it and see doctor for an alternative. Didn't give any reason why, but this came via receptionist message so didn't speak to him myself. Will ask next time I have consultantation. Am awaiting CT scan in case it's Bronchiastisis (not sure that's spelt right) so will see how that comes out. Thanks for kind words.

[Hidden]

Hi there, I also have Churg Strauss syndrome EGPA as well as severe refractory eosinophilic Asthma.

I used to be on Montelukast but not for several years now.

I have read a lot of the studies and information regarding the supposed link & causal effect between Montelukast & Churg Strauss EGPA & the jury is out on that from what I gather.

I completely agree with Xiave that the best thing to do is speak to your consultant who diagnosed the Churg Strauss EGPA for further advice and help.

Good luck with it 👍

[Ploverette in reply to Hidden]

Many thanks for that. Am waiting to hear from my consultant today so will let you know what he says. Hard to make the decision yourself 🤔 But thanks.

[Hidden in reply to Ploverette]

Sending you good luck and positive vibes 👍

Are you on any other treatment for the CS/EGPA?

Look forward to hearing from you.

All the best! 🤞

[Ploverette in reply to Hidden]

Thanks. Am taking Prednisolone 5mg and MMF (immuno-suppressant) but also on tablets for high blood pressure. 🙁 Still waiting for response from consultant but realise it's a busy time for them. Will let you know

[Ploverette in reply to Hidden]

Just to let you know I heard from my consultant today re taking Montelukast. His advice is to avoid taking it and see doctor for an alternative. Didn't give any reason why, but this came via receptionist message so didn't speak to him myself. Will ask next time I have consultantation. Am awaiting CT scan in case it's Bronchiastisis (not sure that's spelt right) so will see what how that comes out. Thanks for kind words.

[Hidden in reply to Ploverette]

Hi there, thanks for keeping me posted as I wondered how you’d got on.

I think it’s a good idea not to take it as they stopped it for me too as their thinking was it can cause Churg Strauss EGPA or certainly that it was masking it.

They also checked me out for bronchiectasis too and did several bronchoscopies as well as lavage of my lungs.

I think some of the symptoms of Churg Strauss /EGPA are very similar to other lung diseases.

I have also had two heart attacks and they reckon they were because of the vasculitis aspect of CS/EGPA as I have never had any cardiac problems previously nor any family history of it.

Good luck with your appointment with your Consultant when you see him and please let me know how you get on as I will be thinking of you.

There aren’t too many of us who have been diagnosed with Churg Strauss /EGPA and it’s good to be able to compare notes.

Sending you my best wishes. Take cate & I hope you stay safe and stay well 👍

All the best of luck 👌

[Ploverette in reply to Hidden]

Many thanks rainbowbrite33. It is difficult when you don’t know anyone else with the same condition so good to hear from you. Sorry to hear about your heart attacks and hope you are ok just now. I think we do have to come to terms with the fact we are more likely to get other health issues with this but hope we have expert people to help us through. Good luck to you too particularly at this trying time. I will keep you posted. Take care 🙂

[Hidden in reply to Ploverette]

Hi Ploverette, I totally agree with you that it’s an awful feeling when nobody else knows or understands what you’re talking about when they ask you the name of your health condition, so it’s great that you know I am able to relate to you and vice versa👍👌

Did you have late onset severe asthma diagnosis as well?

I hope you’re well and staying sane during this shielding period.

Take good care and stay safe and stay well 🌺🌸🌼🌻

[Ploverette in reply to Hidden]

Yes, late onset asthma and sinus problems with nasal polyps. Started with extremely itchy rash, had kidney biopsy, which all led to diagnosis of CS/EGPA. Unfortunately it affected my kidneys too but at least don't need dialysis, thankfully. Seem to be in remission now, just the cough that needs sorting!!! Sorry to be a moan, must be the times we're in, I need to get out more😂 if only!

Hope you're coping with it all, at least today the sun is shining🌞

Best wishes👍🏻

[Hidden in reply to Ploverette]

Good morning Ploverette, I apologise for the delay in getting back to you but I’ve had a few bad days. I am so sorry to hear that about your kidney problems but thank God you don’t need dialysis 🙏👍

Churg Strauss/EGPA was something I had never even heard of before but the more my husband & I have educated ourselves about it over the past few years, the more you realise that pretty much any system in the body can be involved.

Were you ANCA positive or ANCA negative? The consultant who diagnosed me initially thought you had to be ANCA positive in order to be diagnosed with Churg Strauss EGPA but it then transpired that a lot of people are actually ANCA negative.

Sadly his uncertainty and hesitancy meant that a lot of time was lost.

It would seem that the USA know a lot more about the condition than in the UK & are much more switched on about it there. There are not that many real experts on the condition here - although the ones who are the experts on it in the UK do seem to be excellent.

I hope you are keeping well & staying safe (& sane!).

Take care & have a great day Ploverette 👌

[Kekememe1 in reply to Hidden]

I'm in the USA and we don't really know a lot about this condition. Matter of fact, I had stopped taking Montelukast and Symbicort and within a month was starting to regress horribly with severe SOB and Bronchitis. I started going through my medicine draw and decided to start taking some Zafirlukast that I had left over. It was while reading the side effects of Zafirlukast that I came across this Churgs disease. Zafirlukast gave me a constant headache so I switched back to Montelukast which is seeming to help. All in all, I realized that all these meds work TOGETHER to give me a better outcome. I take Symbicort, Montelukast, Zyrtec D and just started on Cromolyn and so far, so good. I have allergic asthma, so keeping the allergies under control is key to my quality of life.

[LuvJadeBloomEOS in reply to Ploverette]

Hey 👋 I’ve taken #Singulair in the past so when I was Prescribed #Montelukast it Didn’t seem to ME like it was the same Drug 🤬 it actually gave ME #Anaphylaxis which I have Never Experienced before & having Hives/welts besides being “Flooded” Post Nasal Drip 💧 more Mucus in My Lungs! I put Manuka Oil on it & and it helped! I made some Hot Water 💦 added in Manuka Honey 🍯 Cayenne Pepper, Lemon 🍋 & Turmeric cause My Inhaler wasn’t working & this stopped My Wheezing! Also Cleared My Throat! Then a few Days Later I found info about #MONTELUKAST Let ME see if I can find that Link to let you know more about what it can do

I told My Asthma Dr. years Later when I saw him, the Dr. that gave ME this prescription was an associate @ My PCP Dr. & My Asthma Dr. said it Doesn’t cause Anaphalaxis when he gave ME #Prednisone which always worked for ME! He wants ME to take #Dupixent which I’m Not sure 🤔 of #Biologics cause I tried #Xolair which was after having Pneumonia after Anaphalaxis from Montelukast & it took My Body about 10 Month’s to see very little Improvements!

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