Tagrisso and Hives

Posted by whahoo @whahoo, Jun 8, 2023

Hi,

I started Tagrisso on 6/5/23. Woke up in the middle of the night with hives but I didn’t connect the hives to the Tagrisso in second night, 6/6/23.

Oncologist dropped me down to 80 mg every other night and prescribed an antihistamine and a tub full of steroid cream.

Has anyone on this forum had a reaction like this and comeback to be able to successfully take Tagrisso?

Interested in more discussions like this? Go to the Lung Cancer Support Group.

Wow, you've been through quite a journey. I'm sorry about the skin rash you experienced while taking Tagrisso. Just know you're not alone in this, as many others have shared similar experiences on various forums. I also encountered a slight rash, which has become barely noticeable. It's likely due to the elapsed time (I've been on Tagrisso for about 2 1/2 years now) or taking 5 mg of Biotin daily. I started taking Biotin primarily because my nails were chipping and splitting like crazy. Fortunately, my oncologist has assured me that Biotin doesn't interact with Tagrisso or the Xarelto I'm currently taking.

On the bright side, I've noticed that some of the side effects of Tagrisso have lessened over time, which is encouraging. However, I've been dealing with some recent gastrointestinal and electrolyte level issues that might be related to the immune-suppressing effect of Tagrisso. It's always important to keep an open line of communication with your healthcare team regarding any concerns or symptoms you may experience.

Regarding the growth rate of this form of cancer, my oncologist has informed me that it is slow-growing. However, I also understand that "slow" can vary from person to person.

I genuinely hope that you're able to continue with Tagrisso, especially since there have been recent positive news about its effectiveness.
https://www.scientificamerican.com/article/lung-cancer-pill-halves-risk-of-death-in-some-people/

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Thanks for your thoughtful response.
For some reason the hives do not want to go away. I haven’t taken another pill and every day I wake up with hives. It’s more than just a rash. They’re itchy welts. They itch like crazy and they’re everywhere but my face.

I have notified my oncologist and they prescribed a antihistamine that I’m not sure is working and a topical steroid based cream that doesn’t work.

I take 10 mg of prednisone every day, for an autoimmune disease, and that seems to calm the hives down.

Not sure what to do.

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Have you consulted with a dermatologist?

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@privatenurse

Have you consulted with a dermatologist?

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I have an appointment with one in September but I don’t think they’ll be able to do much more than what is currently prescribed: antihistamine and steroid cream.

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Hi! So sorry for what you are experiencing. I started taking Tagrisso in Feb 2023. I had the bumps / rash on my face and they gave me hydrocortisone cream and an antibiotic gel (Clindamycin) to use simultaneously - this helped on my face. Now they are on my scalp with a vengeance - bumps and welts that are sore and itchy. When I finally think I got those under control new ones pop up. I have tried different shampoos - narrowed it down to a daily wash alternating between Ketoconazole and T/Sal and Clobetasol liquid scalp application. Tried steroid foams prescribed by my dermatologist and they did not work. I have shoulder length thick hair and I am about to cut it all off. I would appreciate input too if anyone has this issue. Wishing you all relief!

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@khameroff

Hi! So sorry for what you are experiencing. I started taking Tagrisso in Feb 2023. I had the bumps / rash on my face and they gave me hydrocortisone cream and an antibiotic gel (Clindamycin) to use simultaneously - this helped on my face. Now they are on my scalp with a vengeance - bumps and welts that are sore and itchy. When I finally think I got those under control new ones pop up. I have tried different shampoos - narrowed it down to a daily wash alternating between Ketoconazole and T/Sal and Clobetasol liquid scalp application. Tried steroid foams prescribed by my dermatologist and they did not work. I have shoulder length thick hair and I am about to cut it all off. I would appreciate input too if anyone has this issue. Wishing you all relief!

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Have you or your dr reported an adverse event at AstraZeneca? To me, the hives I had were more than just a “side effect”. My oncologist has me on it every other day. I just started up today. Second dose will be vb on Wednesday.

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@whahoo

I have an appointment with one in September but I don’t think they’ll be able to do much more than what is currently prescribed: antihistamine and steroid cream.

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I think September is too long a wait. You can do this with photos & a video appointment. There are ways to get someone back on Tagrisso after it was discontinued following wakening with itching, that morphed into burning by noon of day 3 on the drug. Seems very similar to your issue.
One is trying doxepin, if that alleviates the burning, in this case, the Tagrisso can begin again. If doxepin is not well tolerated, as in this case, gabapentin can be utilized in the same manner. Eosinophils were elevated in bloodwork, which indicates allergy. Lung oncologist was comfortable with it.
Once on the Tagrisso, the gabapentin can be tapered off of slowly or you might choose to stay on it or taper to a lower dose.
A dermatologist was the physician working on this.
There are many antihistamines. Also strengths of hydrocortisone cream.
If this is unintelligible, I'm sleep deprived.
The url Matthew K. posted is not only hot of the presses, but Tagrisso achieved unprecedented survival in early-stage EGFR-mutated lung cancer, with 88% of patients alive at five years in ADAURA Phase III. Keep the faith, Ms. Whahoo.

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@privatenurse

I think September is too long a wait. You can do this with photos & a video appointment. There are ways to get someone back on Tagrisso after it was discontinued following wakening with itching, that morphed into burning by noon of day 3 on the drug. Seems very similar to your issue.
One is trying doxepin, if that alleviates the burning, in this case, the Tagrisso can begin again. If doxepin is not well tolerated, as in this case, gabapentin can be utilized in the same manner. Eosinophils were elevated in bloodwork, which indicates allergy. Lung oncologist was comfortable with it.
Once on the Tagrisso, the gabapentin can be tapered off of slowly or you might choose to stay on it or taper to a lower dose.
A dermatologist was the physician working on this.
There are many antihistamines. Also strengths of hydrocortisone cream.
If this is unintelligible, I'm sleep deprived.
The url Matthew K. posted is not only hot of the presses, but Tagrisso achieved unprecedented survival in early-stage EGFR-mutated lung cancer, with 88% of patients alive at five years in ADAURA Phase III. Keep the faith, Ms. Whahoo.

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Hi @privatenurse. Thank you for the kind response. After day 2, I stopped Tag to let the hives clear up. Per my oncologist I restarted Tag this morning and we’re going to do it every other day to see how I respond to it. If I get covered in hives again, I’ll push up my dermatology appointment.

I take Lyrica which is a gabapentin alternative. I’ve been on it since I had my right upper lobe removed. Don’t remember then name of the antihistamine but it’s good at putting me to sleep. And I have a tub of white steroid cream. It doesn’t seem to do much.

So far it’s been 6 hours since I took Tag. Knock on wood … no hives yet.

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I had nearly the same experience several weeks ago. I took 1st tag (80mg) in the eve and next afternoon I had urticaria on legs, then arms and next day swollen hands. The on-call oncologist had me stop the tag. I slathered on hydrocortisone cream and had derm and allergy consults and the treatment plan was:
- 2 zyrtek bid (per allergist, but oncologist and I agreed on 2 in the eve only)
- pepsid bid
- Do the above for several days before restart Tag.
- Tag every 3 days until convinced no reactions, then every other day.

It's a guesssing game - only case reports and a mention from Astra-Zeneca that reduced dose of Tag is effective (and if it is, why start everyone on 80mg when there were so many drop outs from side effects in the famous/ifamous Aduara trial?) . I can't find any data on FDA website about effective dose. But there is a bit of info that half life is 48 hours (so again why 80mg every day when this drug is completely unaffordable without assistance?).

Are you doing OK now?

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@justanotherpt

I had nearly the same experience several weeks ago. I took 1st tag (80mg) in the eve and next afternoon I had urticaria on legs, then arms and next day swollen hands. The on-call oncologist had me stop the tag. I slathered on hydrocortisone cream and had derm and allergy consults and the treatment plan was:
- 2 zyrtek bid (per allergist, but oncologist and I agreed on 2 in the eve only)
- pepsid bid
- Do the above for several days before restart Tag.
- Tag every 3 days until convinced no reactions, then every other day.

It's a guesssing game - only case reports and a mention from Astra-Zeneca that reduced dose of Tag is effective (and if it is, why start everyone on 80mg when there were so many drop outs from side effects in the famous/ifamous Aduara trial?) . I can't find any data on FDA website about effective dose. But there is a bit of info that half life is 48 hours (so again why 80mg every day when this drug is completely unaffordable without assistance?).

Are you doing OK now?

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I'm taking Tagrisso now but can't afford it, are there any clinics that can help?

I paid for my first box of p[ills but not any more.

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