Notifications
Clear all

The Story Of My First Month On Accutane - Heart/swallowing Issues

MemberMember
1
(@thatainthay)

Posted : 05/17/2013 1:52 pm

 

Hey everyone. I have been on Claravis (40mg) for 4 weeks. I wanted share how this month has gone for me and see if anyone has similiar experiences or comments. Sorry for the long post, wanted to be thorough!

My history I can sum up pretty easily and probably alike to many others. I have battled acne for over 10+ years, and I have been on every prescribed topical/drug on the market, while also trying several natural remedies as well. Most drugs either didn't work or worked for small periods of time. The only drug that really worked wonders for me was Bactrim, but after an amazing few years I built resistance. My acne leaves very, very deep red marks that in many cases last 5+ years. After finally clearing things up for an extended period of time with Bactrim, it was really hard on me emotionally to go back to this battle and gain new cysts/scars. I also tried removing dairy from my diet, which in my case made a large difference, probably 75-80% more clear. Nonetheless, I still was ocassionally getting some deeper marks and using several topicals. I felt it was finally time to look for a more permanent solution.

My decision to take Accutane was not an easy one due to the severe, negative long-term damage it has done to many people. My brother had taken it in the 90s and suffers from some issues ever since, but in his case he still felt the trade-off was worth it. He hasn't experienced any acne since. I realize that there is a larger majority of people that it has been a miracle drug for, so after all of these years and many conversations with several dermatoligists, I started the drug a month ago. I was not worried about dryness or irritation, they seemed manageable to me and worth the outcome.

So I began on 40mg, obviously not a very high starting dosage, but the first month has been interesting...

The first 3 weeks went really well for me. Yes, I had some dryness in the lips and skin, some days worse than others, but that was all to be expected and not an issue to me. I already felt like my life had changed drastically just by the fact that I could get up, wash my face and moisturize and head out the door without extra topicals! There was a night where I felt a little anxious and panicky, which I was very aware of due to being on the drug, but it died down and went away. Everything was going great, and in the whole first month in general I probably have had two tiny little pimples that were barely noticable and went away.

About a week ago (the start of the 4th week), when laying in bed, I noticed my heart beating. Normally I am not extra conscious of my heart, but it felt like it was beating harder or maybe just a bit faster and was difficult for me to fall asleep. I brushed it off and went to bed, waking up a few times in the night. The next evening, I felt the same, and the next one as well, and so on. Still, I like to be patient and I know my body is adjusting so I pushed forward. I had the 1 month follow up with the dermatologist and told him everything. He seemed to think that the cardio issues were not related and told me to contact my primary doctor if it persisted and upped my dosage to 60mg.

That same evening of my follow-up appointment. Something strange happened. It felt like I couldn't swallow very well, I noticed almost a lump or blockage in my lower throat. I tried drinking some water and eating and could definitely tell the food and water was going down my tube much slower than normal. It made me a little panicky because I was conscious of it when I was breathing, but I went to sleep to see how I felt the next morning.

The next morning I woke to the same issue, and called a couple nurses to get their thoughts. Each nurse reacted very differently, one was very alarmed and told me I needed to rush to the emergency room immediately. Another told me it may be allergy related and said to follow-up with my primary. A pharmacist told me to head to urgent care to be safe. She originally had me try some Benadryl but it didn't end up helping so she was more concerned.

After waiting the day out and not taking my Accutane due to how I felt, I went to urgent care. It was a long, annoying process, but after several tests and examination, they determined that I had some "heavy secretion" in my throat perhaps due to my throat being dried out from (possibly) the Accutane, so my throat was creating this secretion in defense. They said to drink lots of liquids and continue on the drug. My heart rate/blood pressure was pretty high when they tested it, so they tested it three times, and figured it was high at first because I was anxious. They did blood tests and so forth and said everything looked good. The truth is, it seems like my heart rate is changing throughout different times in the day. The doctor told me to continue on the drug and re-assured me. I came home a little disappointed that I still had the feeling in my throat and went to bed, yet again noticing my heart beating a little hard.

Yesterday, I relaxed at home with no change in my swallowing. I talked to my dermatologist who said he did more research and was kind of on the fence on whether or not the Accutane was affecting my heart based on his resources. He told me to maybe get an EKG and check with my primary doctor and decided to change my dosage back to 40mg. He wants me to check in with him in 4-5 days and if the swallowing issue is still persistent and uncomfortable or the heart is keeping me awake, he will pull me off the drug.

Last night, even though a bit nervous, I took another pill. About 2 hours afterwards while trying to watch a movie, my heart felt like it was beating harder or more noticably, and it was hard for me to concentrate or relax. An hour or two later, it calmed a bit and I went to sleep. Again, I woke up a few times in the middle of the night feeling so-so.

Here I am today, I still have the secretion in my throat and it is slow to swallow, and I am a bit uncomfortable with my heart being so noticably here and there. I scheduled a doctor appointment for Monday, but I am not sure if I even want to take a pill today. It is really a hard thing for me to deal with because, of course, I want more than anything to continue a drug that I feel very confident about skin-wise, but now am feeling a little worried about health-wise. I know some people deal with some side effects for a short period of time and they go away, but things with the heart or swallowing feel a bit scary.

 

I am curious if anyone out there has experienced any similiar side effects, or specifically issues with the heart rate and/or swallowing? If so, how did they pan out and did you ever remedy them? What was your dermatologist or doctor opinion? Any insigh or similiar stories to share?

Would love to hear!

Quote
MemberMember
31
(@like-moonlight)

Posted : 05/17/2013 3:18 pm

That sounds pretty scary. I would stop taking the pills until you at least get an EKG. I did a 7 month course and was between 40 and 60 mg the entire time. 40mg the first 2 months and 60 the other 5. I never once experienced anything like this. I also had a large group of people on this site that we all chatted daily about our side effects and how to manage them and kind of compare. They never experienced anything like this either.

I started breaking out 3 months after I finished my course and now am on another medication to control that with great success. Spiro. Something to try if you haven't yet. I know you said you've been on every medication out there. I thought I had to and spiro was a new one for me and it is working awesome. Just 1 side effect you might need to pee more often because it is a diuretic. That side effect only lasted with me for a few weeks. Plus it clears up your oil but not to the extent that accutane does.

I suffered joint pains while on my accutane course and lower back pains plus all the drying effects. I got so dry to the point that I had to get eye plugs put in because I wasn't producing tears any longer... Still have those to this day. I've been off the medication since October. I still have the joint pains and need to take heavy medication when they flare up and my lower back is still sore all the time. These side effects never went away and I have hopes that they will in the future.

Im not one of those people who put the fear of god into accutane users. I used it and it did it's job and it cleared me up completely. But I am a huge advocate for listening to your body and stopping this drug if it is screwing with your body. I could deal with my joints being sore, and chapped lips and a sore back. Can you live with having heart palpitations that wake you? Or not being able to swallow?

My advice and your dermatologist's advice is very different. I would stop the medication until I know my body is in the condition that can handle the medication. For sure get the EKG and a ultrasound of your heart and make sure everything there is okay. You might just have heavy anxiety and that is causing the heart pounding and your anxiety is making it worse. This medication can cause mental issues and you could very well develop anxiety. I mean people get depressed to the point where they attempt to kill themselves and some actually do. So that is for sure a possibility. It can happen quickly there is a member on here that tried to kill herself in less than a month of taking the medication.

Just be careful and listen to your body and if it doesn't feel right it probably isn't. Stay smart about it.

Quote
MemberMember
10
(@lillyrose7)

Posted : 05/17/2013 4:16 pm

i suggest you stop taking the medication because although i have not taken accutane, i have never heard of this, but this drug might be causing the issues you are mentioning and in my opinion they sound quite severe/scary and you do not want to risk anything right now. stop taking it for sometime and see if this persists.

Quote
MemberMember
1
(@thatainthay)

Posted : 05/17/2013 5:55 pm

Hey thanks so much for replying so fast, I appreciate your thoughts.

I agree about anxiety. It can be almost like quicksand in a way, and create more physical symptoms as well as being overly-cautious so things such as the heart beat and breathing, so I have kept that in mind.

I took the pill earlier today (before reading your responses) when I was feeling calm. I'm gonna try to relax today and tonight and see how I feel in the morning. If this weekend still proves to have the same slow-swallowing sensation and noticeable heart beat, I'm definitely gonna stop taking the drug.

It feels so helpless with my 10 years of skin issues! I waited so long to finally make the Accutane decision and was hoping it would be the end of this long chapter in life. I can't imagine going back to where I was. I will have to look into the Spiro if this doesn't play out well, I haven't taken it, I remember hearing about that drug and thought it was only for women, but I see that men are taking it as well. A small part of me wants to try doing nothing if this fails, as in just washing my face, since I have been on topicals and other drugs for so many years I wonder how my face/body would react to a break. I do know for some people that can turn out pretty bad though...

I'm gonna stay positive and hope for the best and update in a day or so...

Quote
MemberMember
31
(@like-moonlight)

Posted : 05/17/2013 6:23 pm

Oh I never thought to check if you were male or female before I made that suggestion. You can take spiro as a female and some males are prescribed it as well but not for the same reasons. It's more for high blood pressure, if they use it for males. What men can take in place of spiro which is equally effective is called Saw Palmetto. I will attach a link here from a very informed member that does into great detail about that.

 

Something to look into and I would seriously consider stopping that medication until you can assure that you are in good enough health and see if those side effects go away. That way you can determine if it is the accutane that is causing these reactions or if it is something that just happened to pop up in your body at the same time and it is just a coincidence. Your health is much more important than your acne in the long run. I know how disheartening it is to think about needing to quit the medication but if this doesn't work out you WILL find another way for it to clear. I know that. Seriously try the saw palmetto!

Let me know how things progress. Best of luck and I hope this stops soon.

Quote
MemberMember
148
(@oli-girl)

Posted : 05/17/2013 9:39 pm

Stop the med and don't take it again! Did they test your thyroid? I developed hyperthyroid from Accutane, in which can cause rapid heartbeat, high blood pressure, feeling of lump in the throat and hard to swallow and anxiety! low iron levels can do the same, in which accutane can cause, Though Accutane in itself can cause anxiety alone.

I hope you feel better soon!

Quote