← Return to Reduced intensity BMT

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Thank you all for a great conversation. Tacrolimus Sounds like a nightmare of side effects. As I read through the list I wonder how do you have any form of activity while taking this? How long do you take these drugs after a BMT?

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Replies to "Thank you all for a great conversation. Tacrolimus Sounds like a nightmare of side effects. As..."

Look at Tacrolimus as a lifeline. It helps protect you after a BMT by keeping the newly activated, overzealous stem cells subdued during the crucial early months of the stem cell transplant. As a BMT patient you’re carefully monitored and will have frequent blood work to make sure the tacro level in the blood is kept at a specific number called a trough.

Patients who undergo a solid organ transplant such as heart, liver, kidney are on anti-rejection meds generally for life because their body will want to ‘rid itself of the intruder’ which is the organ. In a BMT, our bodies are seen as the intruder. The new immune system is strong and over eager and may attack our bodies. Eventually, given time, most of us have the ability within 3 months or more to be off the tacrolimus. Some take longer. My husband and I used to joke about my new immune system, “the force is strong with this one”. I was on a reduced level of tacro for 2.5 years.

You will be on a number of meds during your time of recovery. Since your current, defective immune system will be completely wiped, you will be vulnerable to infections and illness. Enter the temporary fix of “better living through chemistry”. You’ll be taking an anti-viral med, antibiotics, an anti-fungal, anti-rejection med, usually ursodial for the liver and Protonix to protect your stomach and possible other meds as needed.
This regimen sounds intimidating. It was for me. I explained to transplant doctor upon hearing about the amount of meds I was going to require that I have never had more in my medicine cabinet than Vit D3 or Advil. He told me, that if all goes as planned, by next year at this time, I would be back to Vit D3. Well it took me a little longer but he’s right. I have only one prescription and it’s a very low dose statin.

It’s important to take these meds. Some may have side effects. Early on with Tacro, my hands had quite a tremor. Made my artwork take on a whimsical quality. But gradually my body adapted and with weaning from the meds, all systems returned to normal.

I was also on antibiotics for 2.5 years. No issues at all! Daily, I made sure to eat fat free, non-flavored Greek yogurt making sure it was life culture. I still eat it daily…to make it palatable I put in a small spoon of preserves.

Most of the drugs stop once you have your vaccinations anywhere from 6 months forward from the BMT. Hope this helps! I’m here along with our BMT posse to answer any and all questions for you! Hugs!

Such a great explanation from Lori. I just want to add that being a former nurse and generally inquisitive person, I usually would read all about the drugs and their side effects plus all the possible GVHD issues. However, someone (maybe Lori) encouraged m pentode to read all of that because it a feel overwhelmingly scary and most side effects won’t happen to you. For once I didn’t over research. The fact was I had Eosinophilic leukemia and needed a transplant so knowing every terrible potential problem wasn’t going to help me. The doctors follow you so closely and every medication you are on has a good reason. Certainly ask and know what medications you are on but don’t worry about all the potential problems because they may not happen and you’ll only stress yourself unnecessarily. And amazingly I have had no GVHD and no adverse side effects from the meds - and lol with a history of autoimmune disorders I have previously had many side effects and problems in my past so if I can have a good outcome anyone can. All the best to you.