A question for the Hemophilia A Community

Take a moment to describe how you or your loved one currently manage this condition, including any medical treatments. How did you or your loved one and doctor decide on this approach?

Answers from the Community

I’m currently on prophylactic treatment, ADVATE, so I take medicine every three days, every third day I have a shot. And my doctors thought that was the best thing to do when I was about two years old and I had a port from age of 2 to 10, and then I got that taken out, so I had that for eight years, but it’s been great for me and I’ve had no problems.

The treatment that my doctor and I have decided is to do prophylaxis one time a week, which is holding my bleeding very good. It’s also helping me be a little more socially active for being outside, not worrying as much about falling, and being able to have access to the treatment. Plus, I’m going out and doing things.

I manage my condition by taking prophylactic hemophilia medication. I specifically take Jivi right now, made by Bayer. Me and my doctor came to this conclusion. I’ve been on Jivi for a few years, but I’ve been taking medication prophylactically since I was probably three. It’s pretty standard and the only thing to really adjust is when there’s bleeds and then the way you deal with that treatment is more so just resting and being in a wheelchair or on crutches and, yeah.

We currently manage this condition with medication three times per week and additional medication if needed. We came to this conclusion when he was very young and we’ve just maintained the medical approach ever since.

So currently, I use ADVATE, which is injected intravenously. I usually use this on-demand, but sometimes prophylactically as well. This would be something that I would use basically anytime I get injured for the most part. It’s not ideal, there is definitely things that are about it that aren’t great, but it works well as far as actually getting the job done. This was decided by my doctor a long time ago. I have never switched off of it just because, we didn’t want to risk any type of development of inhibitors.

For myself it’s just on demand we use ADVATE, or Stimate until it was recalled. For my son who just turned two, we recently started HEMLIBRA so that he can do more things than he could before.

My child has mild hemophilia. And when he was diagnosed, we were just doing treatment on demand, because he kept having frequent nosebleeds and target joint bleeds. We discussed it with his doctor and we decided to start doing Prophylaxis.

Well, I discussed my treatment plan, which is every other day treatment with the factor VIII replacement. I discussed it with several different manufacturer reps in as far as deciding which medicine to use. I also discussed it with my wife and then ultimately with my doctor. And just having several good options, we decided to go with the one I felt most comfortable with. But it was definitely a group effort.

I am currently taking a factor VIII replacement therapy for my hemophilia. I also take pain management pills. I’ve dealt with this my entire life with my doctor. I’m currently taking Xyntha, which is a synthetic factor VIII. That is what’s covered by my Medicaid currently. There are more modern medicines that are not covered by Medicaid that I would like to get on eventually. But this is something that me and my doctor have been working with, and I know that groups are trying to support the medication coming through to the Medicaid.

We do a plasma-based product every single day due to his shortened half-life, which is part of how we determined to do that treatment. He used to have an inhibitor when he was a baby. We did ITI and overcame the inhibitor, so he no longer has an inhibitor. But because of the shortened half-life, we still have to do daily infusions. Again, that’s how we decided on the current treatment. We have been told we might be able to switch to every other day. But his levels are down to zero before his next treatment, and we’re not comfortable with his levels getting below 10% because of the possibility of microbleeds in his joints that we aren’t noticing. So, yep.

We decided with his infectious disease doctor and hemophilia clinic to do the once a week shot, and that just seems to be working so-

Our child was diagnosed from birth. He had a brother that had hemophilia as well, so we were kind of already aware of it. Both children I’m caregiver for are my… great nephews, actually. The first, this one we’re dealing with is a three year old. There’s the decision to make if it’s plasma based or blood based, there’s the different types you have to decide. That was difficult trying to decide what kind of approach to take, and then he actually came up with an inhibitor. We’re still going through the process of trying to get his body to accept the medicine. Meanwhile he’s on two different types of medicine. He’s on Kogenate, which is the longterm factor, which is given three times a week. And then he’s also on HEMLIBRA, which is actually what he uses for coverage right now. That one has less history, so we’re kind of leery on what the side effects are. So trying to determine what medicine is best for him and what works, I would describe as some of the hardest things to get used to.

Well, how we manage it is I do a prophylactic approach. In the spring and fall when I have my most bleeds, I take Factor every other day, the Factor VIII, and it does seem to help. My doctor and I came up with this solution and it has helped a great deal. Then during the winter and summer months, I usually take it as needed.

We currently do a once a week injection of a medication for our treatment plan right now. Our doctor and us decided on this approach because we had been through the once every other day infusions, and those were not really working for us. So we tried this and it has been working well.

I manage my bleeding disorder with daily infusions. It used to be three times a week, Monday, Wednesday, Friday. Then they switched it to every other day due to metabolizing the product. And then they switched it to daily with half the units to keep the peak and trough lower but the peak lower but the trough to be…Higher with daily infusions.

Well, at the beginning, it was a big surprise because, in my family, all the males have hemophilia. I’m the only female that suffers from mild hemophilia. It was a big surprise. I didn’t know. I found out when I was 45, around that age. It was a big problem because I was going through surgery and I almost died. But after that, I think we all coped with this problem, and now we are very informed and our doctors and the hemophilia centers help us a lot.

Recently, he had a visit with the Hemophilia Center. They called him through Televideo, and they made sure that he was taking his medicine, and if there were any breakthrough bleeds, or if anything was going on. Everything has been fine lately. Throughout the year, he has six to eight bleeds. Sometimes, he’ll grind his teeth at night, and then, he’ll wake up with a mouth full of blood. And then, he has to take Amicar and sometimes he has to double dose on his factor if he misses a few days or if he has the big bleed. It’s definitely been challenging, but the doctors have helped us so much. They’re always there for him when he needs to call them or ask any questions and that’s always really nice.