Nausea with Nucala

[HannahBenson]

Have started Nucala for eosinophilic asthma. Also taking MAC drugs, ethambutol, rifampin and Zithromax. Had my first injection of Nucala yesterday and after a few hours...vomiting and diarrea...next day (today) indigestion and nausea...stomach cramps. Does anyone experience this with the biologic injections like Xolair and Nucala? I don't see how I can continue the MAC regimen while taking this monthly injection if this is what is going to be the result. Has anyone experienced this and how long does it last? Thanks...am so sick! Hannah

[Josephone]

Good morning Hannah , I have been on Nucala for over two years and I haven’t had the side effects that u have described. In fact my eosinophilic asthma has improved significantly. After a few months you should b in a better position to determine whether the side effects u r getting can b attributed to the Nucala or another medication u r taking. My first six months were pretty rough but then things settled down and I hardly get asthma exacerbations and practicality live a normal life. Hope that’s helpful and that things settle down

[HannahBenson in reply to Josephone]

Thank you for your reply...today is the third day after my injection and my nausea is the same...I have stopped my other medications in an effort to pinpoint the mepo as the cause but my stomach cramps and indigestion tell me that my sensitive stomach due to years of medication for MAC infection in my lungs is going to make the mepo impossible to take but I am going to give it a while as my asthma is not responding to Prednisone the way it has in the past so this would be wonderful if I can tolerate it. Right now...the indigestion and nausea makes me feel as sick as I have ever been.

[kdr112]

Hi Hannah! I’ve been on Nucala for the past year and a half. I’ve had a bit of a headache and tiredness but never nausea and vomiting. Could you have possibly picked up a virus? Did you have fever?

Hopeful that you can continue with the Nucala and get this sorted.

Hope you are feeling better!

[HannahBenson in reply to kdr112]

I hope so...I am going to try as this is so important ... thank you for your response

[EmmaF91 Community Ambassador]

Hi

For me I had underlying nausea (but no vom), worse AM, whilst on mepo/nucala, along with other side effects. These built up over the 3 months I was on it. I was told it wasn’t the mepo and was reflux. I disagreed. I tried the gavison prescribes but It made no difference so I stopped it. When mepo was stopped the nausea disappeared.

It’s not an acknowledged side effect but that was my experience. Mepo did basically stop all my symptoms, however the nausea, frequent long migraines and the joint pain I experienced put a stop to it. Hope that helps

[HannahBenson]

Thank you EmmaF91...I am certain I will be told that the mepo is not the cause as well but I know how sick I feel and this level of nausea came after my injection 3 days ago. I am going to try to tolerate it as best I can and maybe will adjust but I doubt it. The Pulmonary Drs are going to want me back on the MAC meds which would be impossible as I will just throw them up. I was so hopeful that this would be the answer to my E asthma...still hopeful but doubtful.

[paula66]

I have reactions every month for the first few days ...I take an anti sickness drug that helps me ..hope your ok x

[HannahBenson in reply to paula66]

Thank you paula66...at least I know that this may ease up. Thank you for your encouragement.

[Lizzie1956]

Hi Hannah

I have had Xolair for 10 months & thankfully it’s working brilliantly. In fact I’ve just been given the ok to inject myself at home!

I have little or no side effects, so I’m sorry I’m not much use to your enquiry.

Good luck

Liz x

[Sparkimoore]

Oh Hannah I’m sorry you are feeling so poorly today. I’ve been on Nucala, .. MEPOLIZUMAB, since May 2016, & am now on triple dose as my eucinophillic asthma is assoc with EPGA or Churg Strauss vasculitis. I’ve had no episodes like this, but have had utterly overwhelming tiredness, which has grradually eased back somewhat. The real side effect is severe headache, some of us have severe muscle aches too. I don’t recognize the names of your other drugs & im on most things! It maybe an interaction. Don’t hesitate to get into the Consultant in Mon if this is continuing! Keep in touch & take care!

[HannahBenson in reply to Sparkimoore]

Dear Sparkimore...Thank you for your reply. Good to know the tiredness which is almost as bad as the nausea for me...will, hopefully, ease back like you say. My drugs are for Non-tubercular mycobacterium disease. I have been on these drugs before but never had this type of nausea...I am certain all of this is not a good mix so I am going to have to choose if I want to continue to fight NTM...then I am going to need to breathe and be able to function which I cannot do with this type of nausea so I will have to find another way around these drugs which can cause reflux etc. and nausea after 6 months on average ...and I have only been on them for 8 weeks. I am sticking with the Mepo for now as I really need a relief from the constant wheezing and shortness of breath.

[Sparkimoore]

Remember the consultants are in charge of sorting & fine tuning your drugs. It’s not down to you, but you need to pressure them to act if they aren’t prompt. When I first started taking the Mep I slept for a good 20hrs a DAY for about a WEEK. Was just out of it! I’ve been on it 3yrs now ( I got early access promptly after licensing by NICE as I’m in Jersey, & not NHS here. Remember there are several new drugs recently released which can be an alternative to MEPOLIZUMAB, so don’t think there aren’t any other options. I took Mycofenalate amofetil along with steroids when they were ineffective alone. It’s a nasty toxic drug with some nasty side effects ( aren’t they all??, these bumper ones st least) but it was WONDERFUL for the Asthma, til it suddenly stopped working in a matter of months, 3yrars later.. This could be an option & remember not everyone gets the same side effects! Good luck!

If you’d like to private message me ( not sure how.. thinkntheres a button at top you use.. ) I will give you my email address if you’d like to keep in contact.

Take care!

Rose

SPARKIE was my beloved cat😸😺😻

[HannahBenson in reply to Sparkimoore]

Hi Sparkimoore...thank you for your info and concern. I am in the stage with Mepo where I too could sleep all day...my nausea is slightly better but I attribute that to eliminating the MAC meds which have taken a toll on my stomach lining. I will give this a chance as I believe my breathing has eased up a bit. Waiting for the side effects to go away and then start MAC meds again to see if I can tolerate while on Nucala. I am in NYC...no advocates here for health care except oneself. I email my Drs. regarding my problems with tolerance and will discuss when I see them next week...Thank you again for your response...best regards...Hannah

[Sparkimoore]

Hi Hannah! How are you today? Email me if you want.. Hope you are feeling less nauseous. Email me if you want.. [e-mail] Rose

[HannahBenson]

Hi Sparkimoore, feeling less nauseated today but starting back on my MAC meds which I am sure will change things...but I have to take so no use complaining. Thanks for your concern. xxo

[LeighBernice]

I have had tons of side effects from Nucala (best my 3 doctors and I can figure out) and I discontinued the injections after my July injection. I have had hair loss, a constant sore throat, headaches (and I’m a chronic migraine sufferer already since having an aneurysm repaired 3 years ago, so I DO NOT like or want headaches, as they scare me), and after I discontinued it, things got even more scary as it takes about 4 months to get out of your system( as it takes months to build in your system). I have huge lymph nodes in my neck, still have the sore throat, but my headaches have finally abated somewhat.

My allergist sent me to ENT after concern for 3 month of sore throat brought on concerns for throat cancer. Thankfully, he scoped me and no cancer, but why the huge lymph nodes? So next I had a neck CT due to concerns of lymphoma. Nope, just big reactive lymph nodes, but no pathology. So strange!! My allergist now thinks I must have had a systemic reaction of some sort to the Nucala and I just have to wait it out as it leaves my system. Best wishes for a healthier you soon!

Leigh

[HannahBenson in reply to LeighBernice]

Hi LeighBernice...so sorry you are having so many bad reactions. I hope the drs will get to the bottom of it. I have joint and back pain with Nucala but that's about it...no sore throat or swollen glands. Did your asthma return after you stopped Nucala? Those flu like symptoms could be a number of things. You need a good diagnostician to find it. Good luck and hope you feel better. Hannah