I placed this question regarding a possible Kalydeco induced rash a week ago on the Gene Therapy Talk forum but I thought I would try reposting here where I can reach out to a larger group of participants.
I am hoping to find someone who has either experienced a rash while taking Kalydeco or knows someone who has. I’m blessed to be one of the fortunate CFers whose gene mutation was just approved and on the recent list, and I was able to get the Kalydeco and start taking it Dec. 7.
I had been on the med. for two and a half weeks and although I had not yet noticed any obvious improvement in my condition, I hadn’t experienced any horrible adverse reactions either–until Christmas Eve when I noticed a rash starting to develop on my stomach, hips and thighs.
I hadn’t eaten anything new and Kalydeco was the only new drug that I was taking so it seemed the likely suspect. I emailed and then sent rash pictures to my CF doctor–just what she wanted for Christmas–and after seeing the photos, she emailed back that they looked suspect for drug rash and to stop the med, at least for now.
Rash is listed on the drug information as one of the most common adverse reactions and yet I don’t remember seeing it mentioned in any of the Kalydeco “personal experience” blogs that I’ve read.
Two clinical trials are referenced in the drug info. One lists rash as having been reported by 13% out of 109 patients taking the Kalydeco. The second listed 10% out of a group of 221 patients. That seems pretty high. Only 2% of participants in the second group discontinued the study because of an adverse reaction which means that at least some, if not all, rash “victims” remained the duration. The drug info doesn’t get specific with any of the data, but my doctor is attempting to get more detailed info, if available, from the pharmaceutical company. I can only assume that these participants either found a different cause for their breakouts or found a way to handle the rash while continuing on with the trial.
My rash continued to spread for two and a half days to all but my face, neck, and hands. By day six, it had mostly faded. It never itched and I never had a fever; as rashes go, it wasn’t hideously bad. I’m hoping to rechallenge the drug in the next couple weeks, but worry about the rash triggering or being the forebearer of a worse reaction, like anaphylaxis. I’m really a chicken when it comes to messing with the meds.
If anyone else on Kalydeco has had the rash experience, I would greatly appreciate your input. One can only go so far googling before madness sets in and it’s been my experience that even dermatologists can rarely give any sort of definitive answer when it comes to a rash.
Thank you for your knowledge and assistance.
FiftySomething posted on Sept 2 2016:
know your post is from awhile ago, but thought I’d respond. I developed a rash a year after starting the drug. I stopped it for about 8 months, then did a desensitization protocol with my allergist and I was able to get back to taking one pill a day (not two though) but even at one a day I felt like I was getting the same benefit (weight gain etc). A year later the rash came back and now I’ve give up! Such a total bummer. I felt so much better on the drug and my weight is now low.
Whats your update? Hope you were able to go back on.
JRB52 Responded:
Hi fiftysomething…
Thank you for your message.
I’m sorry to hear that you had to go off the medication, especially since it was helping you.
I waited for five months post having the rash before I got up the nerve to try the Kalydeco again. The rash doesn’t really scare me, but I get nervous about having an anaphylactic reaction although I’ve never had one, knock wood. Anyway, with epi pen in hand I rechallenged the Kalydeco at the end of May. I didn’t do the desensitization. I started with one pill a day for about eight days and then added the second daily dose. I passed the two and a half week mark at which I’d had the original rash and I was fine. I took the medication for nine weeks and then had to stop because of insurance issues. But, after three weeks off, I started back on the Kalydeco two weeks ago and so far, no rash.
It’s interesting that you were on it for a full year both times before the rash happened. Were their any changes to the medications that you take that may have given you an interaction?
I called a pharmacist at one of the specialty pharmacies when I was getting ready to rechallenge the Kalydeco to ask him for details on how taking clarithromycin or erythromycin can affect Kalydeco (I had read about this drug interaction on the literature provided with the med). It said that the Kalydeco dosing has to be cut back when taking these antibiotics because they heighten the potency of the Kaly. I asked if this was also true with Azithromycin and he said no, but actually, the opposite can happen; Kalydeco can heighten the potency of the Azithromycin. It must not be a huge concern because they don’t mention it in the literature, but I decided to stop my three times a week 500 mg of Azithromycin when starting the Kaly to see if that made a difference. That was the only change in my medications between the first time I took it and when I started again in May. It may have absolutely nothing to do with the rash, but I’m going to carry on without the azithro for now.
Did you stop the Kalydeco immediately when you started to rash, as I did, or did you continue the med to see if the rash would lighten up? My rash covered most of my body (not neck or face) but it disappeared within six days of stopping the med.
It’s just interesting that you took it for a full year both times before you got the rash. It seems like something else was factoring in. These rashes can be a mystery. Did you have any other “allergic” symptoms other than the rash.
I appreciate you sharing your story. Thanks so much for the input.
JRB52
I am hoping to find someone who has either experienced a rash while taking Kalydeco or knows someone who has. I’m blessed to be one of the fortunate CFers whose gene mutation was just approved and on the recent list, and I was able to get the Kalydeco and start taking it Dec. 7.
I had been on the med. for two and a half weeks and although I had not yet noticed any obvious improvement in my condition, I hadn’t experienced any horrible adverse reactions either–until Christmas Eve when I noticed a rash starting to develop on my stomach, hips and thighs.
I hadn’t eaten anything new and Kalydeco was the only new drug that I was taking so it seemed the likely suspect. I emailed and then sent rash pictures to my CF doctor–just what she wanted for Christmas–and after seeing the photos, she emailed back that they looked suspect for drug rash and to stop the med, at least for now.
Rash is listed on the drug information as one of the most common adverse reactions and yet I don’t remember seeing it mentioned in any of the Kalydeco “personal experience” blogs that I’ve read.
Two clinical trials are referenced in the drug info. One lists rash as having been reported by 13% out of 109 patients taking the Kalydeco. The second listed 10% out of a group of 221 patients. That seems pretty high. Only 2% of participants in the second group discontinued the study because of an adverse reaction which means that at least some, if not all, rash “victims” remained the duration. The drug info doesn’t get specific with any of the data, but my doctor is attempting to get more detailed info, if available, from the pharmaceutical company. I can only assume that these participants either found a different cause for their breakouts or found a way to handle the rash while continuing on with the trial.
My rash continued to spread for two and a half days to all but my face, neck, and hands. By day six, it had mostly faded. It never itched and I never had a fever; as rashes go, it wasn’t hideously bad. I’m hoping to rechallenge the drug in the next couple weeks, but worry about the rash triggering or being the forebearer of a worse reaction, like anaphylaxis. I’m really a chicken when it comes to messing with the meds.
If anyone else on Kalydeco has had the rash experience, I would greatly appreciate your input. One can only go so far googling before madness sets in and it’s been my experience that even dermatologists can rarely give any sort of definitive answer when it comes to a rash.
Thank you for your knowledge and assistance.
FiftySomething posted on Sept 2 2016:
know your post is from awhile ago, but thought I’d respond. I developed a rash a year after starting the drug. I stopped it for about 8 months, then did a desensitization protocol with my allergist and I was able to get back to taking one pill a day (not two though) but even at one a day I felt like I was getting the same benefit (weight gain etc). A year later the rash came back and now I’ve give up! Such a total bummer. I felt so much better on the drug and my weight is now low.
Whats your update? Hope you were able to go back on.
JRB52 Responded:
Hi fiftysomething…
Thank you for your message.
I’m sorry to hear that you had to go off the medication, especially since it was helping you.
I waited for five months post having the rash before I got up the nerve to try the Kalydeco again. The rash doesn’t really scare me, but I get nervous about having an anaphylactic reaction although I’ve never had one, knock wood. Anyway, with epi pen in hand I rechallenged the Kalydeco at the end of May. I didn’t do the desensitization. I started with one pill a day for about eight days and then added the second daily dose. I passed the two and a half week mark at which I’d had the original rash and I was fine. I took the medication for nine weeks and then had to stop because of insurance issues. But, after three weeks off, I started back on the Kalydeco two weeks ago and so far, no rash.
It’s interesting that you were on it for a full year both times before the rash happened. Were their any changes to the medications that you take that may have given you an interaction?
I called a pharmacist at one of the specialty pharmacies when I was getting ready to rechallenge the Kalydeco to ask him for details on how taking clarithromycin or erythromycin can affect Kalydeco (I had read about this drug interaction on the literature provided with the med). It said that the Kalydeco dosing has to be cut back when taking these antibiotics because they heighten the potency of the Kaly. I asked if this was also true with Azithromycin and he said no, but actually, the opposite can happen; Kalydeco can heighten the potency of the Azithromycin. It must not be a huge concern because they don’t mention it in the literature, but I decided to stop my three times a week 500 mg of Azithromycin when starting the Kaly to see if that made a difference. That was the only change in my medications between the first time I took it and when I started again in May. It may have absolutely nothing to do with the rash, but I’m going to carry on without the azithro for now.
Did you stop the Kalydeco immediately when you started to rash, as I did, or did you continue the med to see if the rash would lighten up? My rash covered most of my body (not neck or face) but it disappeared within six days of stopping the med.
It’s just interesting that you took it for a full year both times before you got the rash. It seems like something else was factoring in. These rashes can be a mystery. Did you have any other “allergic” symptoms other than the rash.
I appreciate you sharing your story. Thanks so much for the input.
JRB52