Is montelukast necessary : I am starting gazyva... - CLL Support

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Is montelukast necessary

sept149 profile image
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I am starting gazyva infusions in one week Doctor asked me to take this stuff Side affects sound scary Anyone have experience with this

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sept149
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AussieNeil profile image
AussieNeilAdministrator

I don't recall mention of montelukast previously on our forum - and there's no entries mentioning it in the Related posts. That is surprising given that according to Wikipedia "In 2020, it was the fourteenth most commonly prescribed medication in the United States, with more than 31 million prescriptions." We also have 25 years of experience with this asthma medication.

Please keep in mind that side effects for any drug sound scary, but you need to look at the risk of actually experiencing one or more of those side effects versus the likely considerably higher risks to you if you don't take this prescription. Importantly, you've taken the time to acquaint yourself with the possible side effects. If you do experience a sufficiency severe one, it's important to discus this with your prescribing doctor and see if another medication is better suited to you.

Likewise when you go through your Gazyva treatment, bearing in mind that it's not uncommon to have an infusion reaction to your first infusion that can be rather scary, then go through the rest fine! (That was my experience.) Just be sure to let your infusion nurses know as soon as you feel in anyway different. They should quickly intervene to manage any infusion reaction, usually by stopping or slowing the infusion. Be prepared for long days - infusions take around 5 hours in total. There's plenty of shared experiences for Gazyva/obinutuzumab infusions here. Your lymphocyte and hence WBC counts should come down rapidly.

Neil

sept149 profile image
sept149 in reply to AussieNeil

thanks again. You have been a big help

Big_Dee profile image
Big_Dee

Hello sept149

I have been taking montelukast for years, long before I was diagnosed with CLL. Prescription was for sinus drainage. Blessings.

SeymourB profile image
SeymourB

sept149 -

Montelukast seems to be a standard thing at M.D. Anderson for my obinutuzumab infusions. I get montelukast 10mg plus acetaminophen (paracetamol) 650mg at each monthly infusion roughly 30 minutes before the infusion.

I suspect that they didn't like diphenhydramine side effects (drowsiness), and several studies of other monoclonal antibodies with montelukast looked promising. It's also not very expensive.

I think montelukast has a low rate of side effects when given once a month, but I cannot find evidence of studies for such a short duration. The vast majority of studies were in patients taking it daily for asthma and allergic rhinitis, in particular for pediatric patients.

There is an FDA warning about possible neuro-psychiatric effects for such patients, and it's been studied based on health records:

ncbi.nlm.nih.gov/pmc/articl...

Analysis of Neuropsychiatric Diagnoses After Montelukast Initiation

JAMA Netw Open. 2022 May

accessdata.fda.gov/drugsatf...

Singulair HIGHLIGHTS OF PRESCRIBING INFORMATION, Revised: 04/2020

See section 6, ADVERSE REACTIONS.

I have had a long term diagnosis of anxiety and depression, and I cannot say I notice a difference after infusions. But that's just my experience. I'm getting the hang of these infusions after having a major reaction to the initial 100mg dose of obinutuzumab (low blood pressure, diarrhea, fever). Fortunately, I was already hospitalized because I was also a risk for TLS (Tumor Lysis Syndrome). I never did the Day 2 900mg dose. They hospitalized me and split the Day 8 dose into two 500mg doses the following week. I had no problems with any infusion other than the original Day 1.

But I think drugs like montelukast and diphenhydramine are given as a precaution against various inflammation and allergy reactions based on best practices from days of yore. If you think it's causing you unnecessary trouble, by all means, ask your doctor if you can do without.

=seymour=

SofiaDeo profile image
SofiaDeo in reply to SeymourB

IMO one should not ask to stop a premed unless anaphylaxis is a problem. These protocols were designed because the drugs help everything work optimally with minimum side effects overall. Not having montelukast on board showed a significant difference in infusion related reactions. IMO the infusion related reactions are potentially much more serious than any potential monteleukast side effect.

theoncologypharmacist.com/t...

sciencedirect.com/science/a...

Most of the studies to date have been done using a different MAB, but 1/3 reduction in infusion related reactions is really really significant. Docs are also looking at using monteleukast with other MAB's.

ascopubs.org/doi/full/10.12...

There's a study out on this, we should have some overall numbers that include Gazyva at some point.

clinicaltrials.gov/ct2/show...

Please remember that many side effects are dose-and-time related. Most of them are seen with people taking the drug regularly, not once a month as a pre-med. The warnings are there in case *something* starts to happen, and you can help by telling someone "oh I have taken X which is known to cause Y on occasion."

SeymourB profile image
SeymourB in reply to SofiaDeo

SofiaDeo -

I did not mean to imply by saying "days of yore" that drugs to counter infusion reactions y are unnecessary. Quite the opposite. While the specific drug may be new to some, the need is as old as infusions, and predates chemotherapy itself. I can take the "days of yore" phrase out if it misleads anyone.

If anything, I wish I had a higher dose of montelukast if it could have prevented my 3 day ordeal. I had multiple doses of montelukast plus 50mg of diphenhydramine after the reaction. I have not gotten diphenhydramine since then, but still get the montelukast. Oh, and I have also been on fexofenadine (Allegra)180mg for pollen allergies. Antihistamines are not all alike, nor are all allergic reactions.

=seymour=

SofiaDeo profile image
SofiaDeo in reply to SeymourB

Sorry, I probably could have been clearer in my intent, by prefacing it about the "ask your doctor if you can do without" statement. That one, was what I was addressing. I think perhaps a "is there another drug that could possibly be used" might be a way to start a conversation. Then there could be a discussion about "monteleukast versus another agent" as opposed to "can I not have the premed". Depending on the patient, I have seen where a doc may be OK with modifying a premed protocol somewhat. But rarely do they agree to not give something, in my experience. So if a person feels strongly about a particular med, they may be happy if the doc agrees to change it. Where as if they lead with "Can I not take the premed" I think any discussion might be shut down.

It's not allergic reaction they are being given for, it's inflammatory responses from the large molecule MAB's. Even plain ol' immune globulin can cause these reactions. And 40 years ago, the premed protocols weren't as advanced, and reactions weren't handled as smoothly as they go nowadays. So IMO asking to "not have the premed" may shut a conversation down prematurely. At least with some providers; we know some of our docs are great and listen/are engaged, and others aren't. So asking "must I have *this specific drug* may generate some dialogue.

sept149 profile image
sept149 in reply to SofiaDeo

thanks for the help So far I think it will be ok

CoachVera55 profile image
CoachVera55

I am a childhood Asthmatic & so are all 3 of my children. As an RN for 31yrs, we just believe in prevention & as mentioned benedryl & tylenol is what is usually given before these infusion as a precaution or prophylactically. An ounce of prevention is worth more than a pound of cure. My respiratory medical history of Cardiac Arresting 3X from Asthma was completely ignored & I suffered so bravo to your responsible doctors 👏🏾👏🏾👏🏾 #GODSPEED🙏🏾

sept149 profile image
sept149 in reply to CoachVera55

thanks for the help

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