Transplant anti-rejection medications. What's your advice?
Weight gain? Hair loss? Headaches? Never missed a beat? What has your experience with transplant medications been? Have you developed a methods to deal with a side-effect? Have your meds changed at all over time? What advice do you have for others in our community that may make their experience better?
Interested in more discussions like this? Go to the Transplants Support Group.
@nimalw I do the same for fasting, although since I take mine first thing in the morning I'm not concerned about before. I'm surprised that it's only an hour before though because if you eat it takes more than an hour for the food to leave your stomach. I've seen as long as four hours before taking a medication but I think two hours is generally the guideline.
It really does make a difference as proved by when I made the change. A lot of people are unaware of that and they feel that they get the same results no matter how they take it but I think it may simply be that without even thinking about it, on the day of testing, or on the day before, they generally do the same thing as usual so that's why it's consistent. Of course some people may just absorb their medications differently I suppose too.
JK
Yes…baby steps are always a good sign! Reducing prednisone may help your sleeplessness. I have hallucinations on prednisone so fortunately was taken off it soon after my transplant.
I do have sleep issues sometimes due to an autoimmune disease. I take melatonin once or twice a week. Have you tried it? If not, maybe ask your transplant team about it. It comes in various doses, so easy to find a dose that fits one’s body.
Best wishes for healthy sleep!
Hi Jk. Thanks for your reply yes I do my blood works every 2 weeks . I visit my Neph every 2 weeks as well . I was told fast an hour before and after immunosuppressants. I am on 4mg prograff and 2 grams cellcept daily .
Let's see how things progress. Stay safe . 🙏
Thank you Anthea . I need to sort my sleeplessness first but the good news is the prednisone dose was reduced to 7.5mg and 2 other drugs taken off last week . I feel a slight improvement let's see how things go . One day at a time
@nimalw I realized you addressed @rosemarya but I hope you don't mind if I also respond with my experiences with my immunosuppressant.
I have to go for tests every other month and that needs to be basically during the 23rd hour since I took my immunosuppressant - I only take it in the morning. So I generally take it shortly before 8:00 in the morning which allows me to get to the lab between 7:00 and 8:00 when I need to go for my labwork.
Initially I didn't bother to consider food vs empty stomach but then I realized that when they said to take it either with or without food they probably actually meant to be consistent with which way you did it. I spoke to my transplant team and chose to try taking it without food figuring that way I would be able to take less. At that time I was taking 4mg. When I started taking it without food (I wait an hour before eating) I was able to drop to 2.5mg a day and maintain the same level of protection. The transplant team followed me more closely than usual with more frequent testing to check the results of that change.
Do you have to coordinate your medications with getting lab work done? That can certainly make a difference. Also, if you choose to take it without regard to food and plan to eat either prior to taking it or soon after that too can make a difference, it certainly did with me.
JK
Saundrella, I recommend that you follow the Neuropathy group and join others talking about neuropathy and neuropathy related to diabetes.
Click this link to see all discussions: https://connect.mayoclinic.org/group/neuropathy/
Here are links to specific discussion in the group:
- Neuropathy due to long untreated diabetes https://connect.mayoclinic.org/discussion/neuropathy-2/
- Diabetic Neuropathy progressing? https://connect.mayoclinic.org/discussion/diabetic-neuropathy-progressing/
Thanks, JK. I’m hoping to explore options for meds when I see my transplant doctor in February and my new rheumatologist….on the same day! Very exciting…fingers crossed Covid doesn’t interfere.
@saundrella,
As Rosemary stated peripheral neuropathy is definitely not a transplant related or caused ailment. It may be a side effect of some meds and this may or may not be a lasting effect. But, many transplant recipients have few or different side effects of the meds and do not have PN. And, if they do get tremors or related PN symptoms these often go away.
For me, I have three autoimmune diseases, one of which, Sjogren’s, did manifest after my transplant and is causing peripheral neuropathy and other issues. Tacrolimus is believed to be aggravating this, as is the extended time I went without a diagnosis of liver cirrhosis and PBC, which had caused some PN in my feet and liver cirrhosis.
I think it important that you share your concerns with your transplant team. They are the best people to address your particular issues and concerns.
Yes the Nurse did . So I do fast . Bit annoying!!
I do not fast before my meds.
-I usually am awake 6 am. and will eat breakfast 7-8 (?). Take meds at 8;00 AM
-Dinner is 5 Take meds at 8:00 PM
My husband and I are retired, and so we have a flexible schedule. The only constant MUST is my med schedule.
Has your doctor/pharmacist told you that you must fast before your meds?