Benedryl ?

[Laurieanne]

Hi Guys,
Could someone please tell me if I could have an
allergic reaction to herceptin if I've had it 10 times.
Wednesday at treatment I had a serious reaction.
They think it was the benedryl because they had given double the dose. They have been thinking I have been reacting to the herceptin, but now because what happened this time. There telling me it's the benedryl.

The only concern I have with that is the reaction started
about 2 minutes after they started the herceptin. They say it wasn't long enough for the herceptin to even get to me. Today I go in to try again. This time no benedryl, but I'm freaking out. The last time landed me in the ER.

Hope everyone is doing well,
Laurie

[Pam P]

I have no insight into this - I've had herceptin with no problems. I've also had benedryl - no allergic reaction but it always knocked me out for the whole day, so now I don't get it anymore & i've done fine without it. I agree I don't think 2 minutes on herceptin would be enough time ... I hope everything if perfectly normal today.

[dlaxague]

Hi Laurie,

Allergic reactions can develop at any time (even after many exposures without trouble). Once an allergy has developed, it tends to be worse each time the allergen (thing that causes the allergy) is encountered.

I tried to search to see if allergy to Benadryl is common but most the hits were about giving Benadryl FOR an allergy, of course. However, some did discuss true Benadryl allergy, and some said that most were allergic to the additives in the pill but some allergies were to the drug itself. Was your Benadryl oral or IV?

What are you symptoms when you're having this reaction?

I'm sure that they will begin the Herceptin very slowly and be ready to turn it off immediately if you have any reaction. They may even give you some steroids as preventative. The severity of the reaction depends in part upon the dose so even if you do react to the Herceptin it should be mild. Just trying to ease your mind. Let us know how it goes, okay?

Love,
Debbie Laxague

[Vi Schorpp]

Laurie I can so relate.

I had a very interesting day this past Tuesday. I arrived at my job about 11:00 after running an errand. I worked for about 35 minutes and then got EXTREMELY hot (a major HOT FLASH) and then incredibly itchy. Felt like my clothes were on fire. Decided I'd cool down by putting water on me. Major welts on my face, neck, torso, arms, etc. Then, I got so itchy I wanted to rip off my clothes. About 1000 bumps appeared on my arms (looked exactly like spider bites) and my skin was beet red. I was having an allergic reaction. To what we still don't know!

Since I was all alone (not a typical scenario), it crossed my mind to call the rescue squad, but that seemed a bit extreme. I went to CVS and picked up a box of Benadryl tablets , but couldn't find the liquid. I asked the clerk to see the pharmacist and I asked him if he had anything more fast-acting. He said YOU ARE GOING TO THE HOSPITAL! He called the rescue squad and then he gave me 25 mg. of Benadryl orally. The rescue squad came and gave me more benadryl and took my vitals. My heartrate was at 220.,.not good.
They could not believe how red and swollen I was. We went to Hillcrest Hospital. They eventually stabilized me and then I was released.

Meanwhile, my daughter Erika could not reach me and she knew I was headed to the drugstore for Benadryl. She finally reached a dispatcher and the only thing the woman would say is "your mother is in very grave condition, not doing well, but that's all I can say." By the time I was admitted to the hospital my daugher arrived 10 minutes later.

What I'm trying to figure out is this...I stopped taking Aromasin in the middle of July because of excessive joint pain and switched to Femara on July 14th. I've been very happy with the Femara. On August 1st I woke up with swelling of my lips and arms and got a dose of Benadryl. It seemed to do the trick and I went back to sleep. Never knew what caused this.

In my lifetime, I've never had an allergic reaction to anything, so this was the first. The second one I had Tuesday was so much more severe. I hadn't even eaten anything that day, but had taken the Femara.

I'm waiting for the oncologist nurse to call me back, but I read that a small percentage of patients could have an allergic reaction to Femara. Does anyone else think that if I've only had two allergic reactions in my lifetime, since starting Femara on July 15th, that there might be a connection? Would the reaction have been quicker than this timeframe? One reaction two weeks after starting this medication, then another reaction six weeks later?

I am on no other medication -- nothing, except Voltaren as needed for knee pain once in a while.

The internist said that 95% of the time the source of the reaction is never known. The ER doctor said the next time this happens take the benadryl as I'm calling the rescue squad.

Any thoughts?

[dlaxague]

Hi Vi,

You had an anaphylactic reaction (highest level of allergy, can be life-threatening) to something. You should now also carry an epi (epinephrine) pen or inhaler (like people who are allergic to bee stings do). They should have told you that.

What you didn't tell us is if you're still taking the Femara. If so that would be very odd, to have reacted so strongly to it once and then not since.

I have had a similar reaction to yours although a little more involved, 3 times in my life. All within about 10 minutes of eating a meal (two times a potluck, alas for figuring out the allergen). But they were over a 4-5 year period and that was 20 years ago. Allergies are so weird.

As was mentioned about the oral Benadryl, allergies can be to the fillers in the drug and not to the drug itself.

But Vi, you had nothing to eat nor drink except the Femara? What a mystery.

Keep us posted, please - both about how you are doing and what your doctor has to say.

Debbie Laxague

[Vi Schorpp]

I've not taken Femara since Tuesday, and I'm not even sure that would be the source -- I'm grasping at straws I think. I wish I could make a connection, but I can't. I'll let you know what the oncologist says. I expect it will be a CYA answer like, "If you're not comfortable taking the Femara we can switch you to Arimidex." In fairness though, if the cause of most reactions are never solved, I can't expect another doctor to agree or disagree about the Femara (especially in the timeframe I've taken it).

Thanks for your reply! Take Care.

[Louise O'Brien]

Laurianne...

I'm not an expert but I have to wonder if it wasn't the double dose of Benadryl. I had a very strong reaction to my first Herceptin dose - but it didn't happen until I got home. I developed a very high fever and the shakes and my husband was about to take me to the hospital - when slowly the fever subsided and I returned to normal.

But after that, they insisted on giving me Benadryl with my Herceptin infusion and I hated it. I hated feeling like I was nearly unconscious and it made the treatments miserable for me.

I knew there were written warnings about reaction to the first, longer dose of Herceptin and I felt mine were classic.

After about the fifth treatment, I begged to be taken off the Benadryl because it just made me feel so awful. I wanted to go cold turkey and they were very reluctant to do this but I insisted.

And I was fine - and I never never had any problems after that. So I'm hoping that will be the case with you.

True allergic reactions aren't fun. I'm allergic to penicillin and ended up in ER so I know how terrifying it can be.

Good luck and let us know how it worked out.

I'm going to throw out a positive vibe here

[ElaineM]

Yes. It is possible to have a reaction to Benedryl. In some sensitive people it can cause some of the problems it is supposed to prevent. I can't take Benedryl in any form. When I took it I had more side effects than I would have had without it.

[Laurieanne]

Thanks Guys,
I had my herceptin yesterday with a steroid, no problems. Does anyone take herceptin with no premeds?
Laurie

[Pam P]

Laurie - When I was getting herceptin along I never had a premed of any kind.

[Sheila]

Laurie
I have never had a premed for herceptin in 5 years of being on it....but that is not to say some people require it...many chemo centers in the midwest give tylenol and benedryl standard before Herceptin.

[ElaineM]

See my previous post about taking Herceptin without premeds.
It is good to remember that every drug on our plant can cause side effects in sensitive individuals. The more we add the more potential we may have for side effects. I usually try new medicines without premeds. If I get side effects I ask the docs to help me solve those problems.

['lizbeth]

Laurieanne,

I had a terrible reaction to Benadryl. I had taken it before without a problem. When I ended up in the hospital in May I was on three IV antibiotics and one of them made me feel itchy. So the nurse gave me Benadryl. The next night I couldn't sleep so the nurse checked my approved meds list. There wasn't anything for insomnia - so she recommended, you guessed it, Benadryl. I didn't realize that it was the Benadryl that was giving me insomnia so when I came home from the hospital and couldn't sleep I took more Benadryl. My blood pressure went up to 150/100, my heart was racing. I felt like I was plugged into an electrical socket. People would talk - I could see the lips moving and I could only get a few words of the sentence. I was confused, irrational.

Needless to say I finally made the connection and stopped taking it. 10 days later it was out of my system and I was back to normal.

I learned my lesson with pharmaceuticals - less is more.

[hutchibk]

I take the standard dose of benadryl (25mg) before every Herceptin infusion. I take it as the simple little pink and white benadryl pill form that I have bought for years over the counter. (this is what the nurses give me at infusion time)

When I started Herceptin over 2 years ago, I learned that there is a difference in the way benadryl can be given. I can't tolerate it in any form other thay the 25mg pill.

When they drip it into my line in liquid form from a bag, it is too strong for me. Completely knocks me out. It's too strong for me to get it dripped into my bloodstream...

The one time that they "pushed" it into my line, via a syringe, it hit my bloodstream too fast and I had a terrible reaction to it... it was an arm and leg heaviness/paralysis, racing heart, and I couldn't talk - basically an out of body experience. The worst of it lasted a little over an hour, and we really couldn't do anything about it but give it time to wear off. It slowly wore off over the next 6-7 hours, but I was toast until the next day. Shakey and drugged.

Do you get pill form, drip form or syringe "push" form?

[caya]

Laurieanne,

I never had any kind of pre-meds while taking Herceptin. I also had the infusion over 60 minutes, instead of 30.

all the best
caya

[jones7676]

I'm not sure about Benedryl itself, but through the years what I'm allergic to has changed. I have a good friend who has developed different allergies also. I also have a good friend whos had improved allergy problems after having chemo - that is all I can offer.

[juanita]

if i take benadryl for anything my legs really jerk and jump. i have to be up and moving for about 45 minutes before they finally calm down.

['lizbeth]

Hutchibk,

I received the syringe push-type in the hospital, twice. Then I took 25 - 50 mg pills at home.

'lizbeth

[swimangel72]

I've been on Herceptin alone since August and never get pre-meds and have no SE's whatsoever, thank God. Once, while I was still on Navelbine, the new onc's nurse started me with a steroi, which gave me extreme constipation and insomnia.......I told her I didn't need the pre-meds, so she stopped and then I was fine.

[Sheila]

Brenda
I always get 50mg IV push....I feel the same way you did....gee, I thought it was a benefit...kind of put me in the "I don't give a sh*t mode!

[Diana1993]

I was on herceptin for almost two years and the only pre med I received was Tylenol. Like Caya, I had a drip of 60 minutes. Se were and are drippy eyes and nose. I have learned to live with it. I wish you all the success with this round.
Hugs,
Diana.

[hutchibk]

Sheila- that's how it affects me when they drip it, I don't give a S**t about anything, which was kinda nice, but still just debilitating enough that it started to bother me. For one thing, I couldn't drive myself home from treatment, which pissed me off, so we tried the pill form and it was the perfect dose...

[Sheila]

Brenda
I hate the fact that i can't drive home too....so I always have to have someone go with....they won't let me take the oral....I am taking it for the Taxol....mabe thats why....they want the big dose right before infusion...I know i must be drooling on myself after they give it to me !!!

[dlaxague]

Like Brenda, I negotiated the bendadryl during Taxol. First, I refused 50mg outright, as I knew how I hated that slow-mo feeling, plus I get migraines when benadryl wears off (lots of experience with benadryl when I was night nurse trying to sleep during the day). The first time they agreed to lower it to 25mg, but it was IV, not a pill. WAY too much sedation to suit me. I wanted to be able to drive (70 miles one-way for treatment - silly to make someone else come and waste a day).

The last three were 12.5 IV, at my insistence. I think my chemo nurse thought I was nuts but she humored me. I tried for none but she said since it was part of a clinical trial protocol she just couldn't delete it altogether.

I think I enjoyed wresting some smidgeon of control for myself as much as I enjoyed not being semi-conscious, as I would have been on 50mg.

Debbie Laxague

[Sheila]

Debbie
I have had so much Benedryl in the last 16 mos of Taxol that now when I take the Tylenol or Advil PM, it doesn't even phase me....used to be that 25mg of Benedryl PO would knock me out when I worked nights (also as a nurse)and had a hard time sleeping during the day.

[Unregistered]

I'm so glad these posts were made. I've been hating the Benedryl I've been getting with my weekly Herceptin tx. I get it on Fridays and I'm lethargic for the whole weekend...I've got a 5 year old boy, I need some energy for my weekends! I called my oncologist's nurse this week and asked if we could do it without benedryl this week. When I get there today I'll be demanding it, especially now that I've read these other accounts just like mine.

That's why this group is so valuable. Patients need to communicate with each other and research their own treatments, because there are things we can learn that our doctors and nurses won't tell us...or don't even have any idea about. They can learn from us as much as we learn from them. I've been in chemo and herceptin treatment for about 9 weeks now, and I'm learning how to speak up on any little thing I think or feel, because it could be a not so little thing, and there is probably something that can be done. You don't know til you ask.

Thank you all

[freyja]

Sorry I wasn't logged in when I responded...it's me "freyja"

[caya]

Freyja,

You are so right about this invaluable group, sharing information and advice- I started to get the Herceptin drip over 60 minutes instead of 30 because someone mentioned that issue here. Otherwise I doubt I ever would have known about that.

Lots of luck to you.

all the best
caya

[Unregistered]

I can say that I had a reaction to Herceptin. I had Herceptin from the start w/Chemo and all the pre-meds, including Benedryl with no reactions. Following that, I had Herceptin alone for a few months with no reactions. Then on my second to last treatment w/just Herceptin, I experienced a tightness in my chest, coughing and shakes. All within minutes!
The drip was stopped immediately and Benedryl was administered and continued with Herceptin w/no further reactions.

Sorry, I can't identify myself, I registered quite awhile back and forgot my password, and for some reason the site won't forward it to me because they doesn't recognize my e-mail address. ???

[madubois63]

I've always thought myself to be a little weird - I LOVE Benadryl. When in the hospital, I always make sure I have a Benadryl push ordered as part of my med's list. I get a great high from it and then fall asleep. It works better for me than any sleeping pill, especially when they wake you up in the middle of the night for vitals. One push, and I am back to sleep with a smile on my face. I currently receive a benadryl drip prior to getting Herceptin but have taken Herceptin without any premeds before. I get a little silly, tell stupid jokes and then fall asleep. I always carry Benadryl pills on my person - just in case. The pills don't make me tired or silly.

Anyway, several weeks ago I landed in the ER after receiving Herceptin with Benadryl. I started breathing very heavy and felt like I was having a heart attack. They did every test under the sun and didn't find anything wrong with me. Herceptin??? Benadryl?? Who knows....

[StillHere]

Juanita, you are the first person I have come across that has the jerky leg syndrome thingy. I can take a lot of Benadryl during the day, but cannot take after supper. If I do, I can't keep my legs still enough to sleep. Sometimes I forget to check cold medicines to see if they include bendaryl or generic form. If I take them just before bed I am up for hours tossing and turning. I know when I worked in CICU, there were some people who got very restless from Valium. I figure this is somewhat the same for me. Most people get drowsy/sleepy from Benadryl. I am tired, but very restless. Just nice to know there is someone else out there with the same symptoms. Peace Karen

[juanita]

i can't even take tylenol pm because it keeps me up. and i've learned the hard way, like you, to read labels.

[hutchibk]

If I take too much Benadryl, I get restless legs. It also used to happen to me when I took too much of another allergy med, I think it was an Eckerd store brand of cold/allergy combo years ago, and for the longest time we couldn't figure out what was causing it. Then I kept a log and it happened only during allergy season when I took that particular otc med... the doctor couldn't explain it as it didn't show up in potential side effects of any of the ingredients on the box... but then I also experienced it on the doses of Benadryl that hit my blood stream too fast. It doesn't happen on the pill, but it does with the drip or push...

I also got horrible RLS from the anti-depressant Effexor.