Belatacept

[Dna4christ]

Hello everyone. This year is my 14 years of transplant. My doctor mentioned coming off of tacrolimus due to potential scarring if on it for a long time and switching to belatacept. Could you please shine me your experience on this medication? Side effects? Pros and cons? How long it takes? Travel allowed? Is it flexible to schedule or dead set? Thank you in advance!

[Denise-80]

Hi - I am 10+ years post-transplant and switched from Envarsus (extended release Prograf) about 2 years ago. The whole process takes about 45-60 minutes….although the infusion itself is about 30 minutes. The appointment is every 4 weeks. There is a little flexibility but only +/-3 days. After my first few infusions, I was tired the evening after and during the next day. I found that drinking water before during and after the infusion was helpful for me. I’ve been able to travel with no issues. I have no side affects from this medication that I’m aware of. I take it with myfortic and prednisone.

Congrats on 14 years…wishing you the best.

D

[Dna4christ in reply to Denise-80]

Thank you so much for information. I think it would be nice not taking medicine anymore but then going once a month to get infusions for an hr might be tough too. I hate going to hospital in general! I'll have to ask my tx dr once I get my labs next week. Take care!!

[Denise-80 in reply to Dna4christ]

I get my bela at an infusion center. I don’t go to the hospital. FYI.

[Dna4christ in reply to Denise-80]

Thank you. I heard some people have a nurse come to their house. I think this be would be nice.

[Blue-Quilter]

My transplant was October of 2019. I was on tacrolimus, mycophenolate, and prednisone initially. In December, they pulled the mycophenolate because my white blood cells were critically low, even after two doses of the shot to stimulate their production. Over the first three years, I had blood draws AT LEAST every other week, and frequently every week. Those were followed by a traco dose adjustment, which was followed by a plethora of unpleasant side effects. And then the cycle repeated. I had over 90 draws those first three years because I could bot get a stable tacro level.

At the three year point, we switched to belatacept infusions, which are every four weeks. I'm diligent about drinking my 2.5 L of water ever day, which helps them find a vein. My appts are at 11:00, and I'm generally walking out around noon, though I don't schedule anything later that day ,just in case my med didn't get ordered or there was some other delay. I'm pretty tired the rest of the day, but that's the only side effect I've had. However, the fatigue could also be blamed on commuting into an out of Seattle -- our traffic is terrible! UWMC is only 10.3 miles away, but I have to allow an hour to get there because it often takes nearly that long!

As far as travel goes, I just have to time my trips around my infusions. The one time I had to change my appt (I make them about 6 months in advance) was when we were going to see the meteor showers. The peak show was the day I normally had my infusion, and where we were going was 2.5 hours away. As it turned out, there was too much cloud cover so we didn't see them anyway, but we had a great time! I'll have to adjust it again in October as we're going to hike the national parks in Utah, and we fly out on my usual day. My team is great about adjusting my appts when necessary.

One additional benefit of the infusions is my creatinine came down about half a point. This is a big deal because it didn't improve much after the transplant. The only downside that I've experienced is the cost. Because the infusion is administered in a hospital setting, it's covered under Medicare Part B, not the prescription drug part. My co-pay is $500 every 4 weeks. This is with a Medicare supplement. Your insurance may be better.

Talk with your team. Talk with the financial folks. Maybe even a social worker. Know what you're getting into. For me, it has been a God-send. I was so sick every time they adjusted my tacro dose. I feel like I have my life back finally! Best wishes to you! P.S. I love your handle!

[Dna4christ in reply to Blue-Quilter]

Oh wow! You're right..i haven't considered the coverage on this medication.. I have Kaiser. I will have to ask and look into it. I'm worried about the side effects as I'm pretty sensitive to new medicine! Thank you for your wonderful insight!!

[Hawk12]

I think that it is a great idea to get off the tacrolimus! It damaged my new kidney to where I am now in Stage 3B 3 years after my transplant, despite “normal” tacrolimus levels.

I am on regular Medicare and have no copay.

I have had no symptoms with the Belatacept. I bring my tablet and read or play video games. I go home and exercise.

As mentioned, you have to work your schedule around it. I tried to get the infusion elsewhere while on vacation without success. Hoping they will come up with a shot or pill! 😊

[Dna4christ in reply to Hawk12]

Yes i think that's what worries me..i go to korea every year for 10days or so. Usually this trip cant be worked around and wondering how that will go if I were to switch to belacept!

[Hawk12 in reply to Dna4christ]

I would talk to your Transplant team and explain the situation. If there is a transplant center near where you are when you are in Korea, they might be able to make arrangements with them to do the infusion.