Blog Post from My Journey with Familial Hypercholesterolemia and Heart Disease
My lipidologist has recently recommended a change in my drug regimen, to try to lower my LDL values even more (read about this here: https://livingwithfh.blogspot.com/2017/12/the-tricky-balance-between-trusting.html). He recommended I would start taking Juxtapid (Lomitapide). Saying that I am nervous about starting this very potent and very much dangerous drug is an understatement. I have gone online in the Family Heart Foundation’s Discussion Group on Facebook to ask other patients and care givers if they have any experience with Juxtapid. I have had a couple of answers, with folks saying they have been on it and that it worked great for the numbers, but the side effects was pretty severe. Out of all the answers, Leitha Jordan Brogan’s was by far the most informative. She is a HoFH patient as well as a nurse. I thought adding her answers here about Juxtapid might help someone someday on their decision to go on it, or not. Read on, and Leitha, again: thank you for sharing! I started at 5 mg for 1 month, then 10 mg for a month, then 20 mg and my numbers finally normalized at 40 mg but that dose was hard on my gut. Dividing the dose lessened the discomfort but doubled the price. Yes!! Be concerned about the effects on the liver. I have fatty liver. The doctors don’t seem too concerned about it. When you first start Juxtapid the dietitian will counsel you about fat intake and based on your weight will calculate the appropriate percentage of fats for you. They teach based on “fat is fat” not, good vs bad fats. ALL fats will react exactly the same so, staying under the allowance for you personally will avert disaster. “Disaster” comes in the form of EXPLOSIVE diarrhea or vomiting like is depicted in a horror movie. (I wish I was joking). Like I said, you watch the fat grams and keep them under the allowance and never, ever eat closer than two hours to the capsule and you will probably be alright. I was very, very fortunate. 60 mg is the maximum dosage for Juxtapid and I know some of the folks taking it are at that dose. I don’t think I could tolerate it any higher than 40 mg and honestly, if I was to end up being able to go back on it, I don’t think I’d consent to 40 mg again. When part of the company’s sales pitch is, “… but you’d still qualify for liver transplant…”, it behooves you to pay attention. It’s a serious medication for a serious disease. They don’t take any of the warnings lightly. The Compass program sets you up with a dietitian who is always a phone call away. The pharmacist is also easily reachable. You have a caseworker who is easy to reach for any questions. Your prescribing physician becomes your new, best friend and you will find yourself on a “high priority” status in that office. (If you don’t…something is wrong). You will have lab work that includes LFTs (liver function tests…AST, ALT, etc.) at very close intervals to begin with but is later reduced to about every three months (after you reach your titrated, effective dose). You will have frequent appointments with your doctor. You will receive mailings with low fat recipes to try. The “welcome kit” has a fat counter for every fast food and chain restaurant known and it’s easy to eat out while maintaining the fat intake. I was calculated to be allowed 37 fat grams in 24 hours so I divided them up between my meals. I allowed 10 for breakfast, 14 for lunch, and 13 for supper. I would simply adjust for planned outings or special occasions but I tried to keep the majority of fats around lunch because of knowing I would take the Juxtapid at bedtime. I set my alarms in my phone to remind me about the last food for the day, (to be consumed by 7 pm) and the dose of Juxtapid that I took at 9 pm. I never missed a dose that way. Once I was finally at my acceptable dosage, I had very few issues. Breaks in taking Juxtapid causes you to have to re-titrate. When I had open heart surgery I had to stop it because of all the medication I was on in hospital. I tolerated going back on it okay but starting all over left me more open to the side-effects. I’m happy to answer any questions you may have. I spent 36 years as a nurse before I had to retire. … the cost for Juxtapid was right around $78,000.00 per month for the divided dose. Ordinarily it would have cost around $34,000.00. The commercial insurance I had approved the prior authorization and it operated on a “co-pay” (fixed amount out-of-pocket) as opposed to a “co-insurance” (percentage based fee). I paid the highest co-pay of $40 per month. Once I was priced out of commercial insurance (premium went from $684/mo to $2288/mo), I was forced onto Medicare and it has no out-of-pocket maximum, operates on a co-insurance of 80/20, and allows no third-party assistance with premiums or services. My portion of the monthly fees for Juxtapid was between $4-5,000.00 per month. LDL Apheresis costs around $11,200.00 per month and between my Medicare and the supplement I purchased for a little over $700/month, I don’t owe anything. I just have to drive five hours to get there and can’t drive home so my husband takes two days every two weeks off from his job and he takes me from Florida Panhandle to Atlanta. It works and has no effect on the liver so, I’m not going to complain. I’m thankful it’s available. Best of luck to you in making your decision. If I knew I wouldn’t be jerked off and on Juxtapid because of the chronic need to re-authorize, I’d go back on it if it again became available. You may consider a trial of it. Nothing says you can’t decide it isn’t for you and stop it. I’m still in a 10-year study for it, lol. Even though I lost access they still want to follow my progress. It’s a huge decision. I took Warfarin after my open heart. Ugh! I think I made it harder than it had to be. But the week I started Juxtapid I cried every time I tried to cook, and even just going with a friend for lunch. I finally found the Turkey, Bacon, Ranch at Tropical Smoothie was 17 fat grams. It’s a rather large (and tasty) sandwich and it saved my sanity. I ate half for lunch and took half home. It was about all I ate on my lunches away from home. I still like them. Best of luck. It’s an amazing medication but I certainly understand the hesitation.
To view original post visit: https://livingwithfh.blogspot.com/2017/12/about-juxtapid-lomitapide.html
Blog Post by A.W. About this Blog
In this blog I will follow my everyday journey of living with familial hypercholesterolemia (or FH). I am sharing my own experience with this inherited disorder, and how I manage it daily – from what literature I read on the topic and what my doctors say to how I live my life (what I eat, what medicine I take, how I exercise, etc). This is solely a personal account that might or might not offer some insight on what to expect when diagnosed with this condition. This blog does not offer advice, in any way, to anyone suffering from this disease.