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Night sweats, Eyes all from meds?

Yes, Hello, I am Michelle, I had a kidney transplant 1 year ago. I am on the anti-rejection meds. I have a go round with them. But continue. I have a black spot when I look out of my left eye. Been to the doctor, but know that this is a side effect of meds. They say it will go away, but not sure. After I take my evening meds M eyes get really swollen and red all around my eyes and puffy. I get to the point that I can no longer read. My right eye drops sometimes. My check up say my eye site is the same. But these complications are from meds. I also am losing my hair. I have tried Super B vitamins as suggested by the transplant team. I have been afraid to cut or color my hair. I am on 10mg of steroids daily. My sugar runs high and I am on a low. Carb diet to try to stop form having diabetes. 

 

I know I am blessed to have a kidney and I should not complain. But I do not want to say anything at home to my husband. He has had to put up with so much since my operation. So I am letting it out here. I pray for strength to put up[ with all things, but my spiritual feelings seem to have been affected also. I would rather stay at home than go out. Which is what i have done for a good bit. 

I have nerve problems I have never had before too. Like Hip Bursitis, Bruising on inside of my knees from sleeping with my legs resting on each other. I also have gained about 10 lbs over a years time. my AC1 is 6.4 and they say I am pre-diabetic. I have never had problems with sugar before. I have seen a dietician but still not sure what to eat. Fruit has sugar, Bread has carbs. ?

I am better than when at first I came out of surgery but my GFR is still only 50. Cre=1.1 my team says that is fine. I am hoping tat they will be able to lower meds soon. But do not know.

I also get sores on tongue and I use Nystatin for that. I get blisters on my mouth but they do not last long. I get different things. I had one doc tell me in the ER when I bent over and my back just became extremely painful. that With the meds I am on with low immunity that any cells in my body could be affected at any time. Now I had some sharp pains in my new kidney yesterday and I am going for a culture. I wish I had a better handle on what I can do to help my body. I do take CBD Pure Hemp OIl. I do not think I could stand all these side effects without having this supplement. My docs know I am on CBD and they tell me it is good for transplants. 

At night after my second dose, I burn up on my backside. Sometimes I awaken soaking wet in the middle of the night, but that is getting less & less. 

I also do not sleep well. I am writing this because I want others to know what my side effects are and see if they have any of these. Blessing to everyone who is on the journey of a new life through transplantation.

 

 

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Replies

  • hi  sorry to hear about your problems.  i am 8 months post liver and kidney transplant.  i take prograf, myfortic and prednisone.  i am down to 1 mg a day of prednisone.  i also get night sweats around my neck and back they say it is due to the prograf.  i also gained weight since the transplant but team said it was good because i was very thin and undernourished  i also get a spot in my eye and eye doctor said i have a cataract which i will have to get removed soon this is also gotten worse due to the prograf.  there are always side effects of the medicine.  just try to relax and see what works for you.  i also had alot of hair loss the first 4 months now it is back to normal i take biotin everyday 10,000 mg and use biotin shampoo the trans team said that is ok.  i am also a diabetic for 30 years i take 2 kinds of insulin and watch my diet .  you have to eat alot of vegetables and a minimal amt of starch  no white flour like white bread also.  i eat fruit but not alot of certain ones like cherries grapes and watermelon they are high in surgar.  eat alot of strawberries, blueberries and any kind of berry is very good.  also peaches apples but bannanas are starchy so do not eat alot.  i hope this has helped you a little bit.  good luck  carol

  • Like KB said it is odd that all of that sounds normal.....it shouldn't but that is how it goes for some of us.

    I have other factors as well which contibute to the challenges but Tac and the others can really mess with us.  I am 3 years post, just 4 days ago, YAY - I use 5k mcg Biotin which really brought my hair back.  Lower doses always really help.  I went completely no sugar to fend of diabetes, which I had for a while but therapy induced and then just really took diet very serious.

    I do have FibroM or some version of chronic nerve pain.  Mine came after Shingles after over Immunosuppressed when they tried a new therapy combination.  I have only had one cold since my TX but some of these other things like nerves, brain (memory for me), etc. are how the side effects manifest.  Don't forget chronic fatigue.

    Again like KB said titrated meds will be huge, when that happens.  And we just learn to live with a lot of it.  How my body allows me to sleep with the pain, etc. I don't know but brain adjusts - as it does for all of us.

    Hang in there.

    • Hi There,

      thanks for your comments. I was hoping the Fatigue and memory loss would improve after they lowered my meds. Have they lowered yours yet? I also have these things too. I have good days and bad days with my thinking. this is extra hard because I research for our business bunches. By the end of the day, I cannot read at all. I know it is meds because I have visited an eye doc. I understand about the pain too. I just get used to it and then after so much I have to have a rest. I figure nothing is as good as God made it first and we must do our part to live. My husband says The meds are hell to take but life is heaven.

      That is the way I try to understand. but so many new things developed the longer I am on the meds. It just throws me off balance. I cannot seem to find a standard even though I have come a long way from where I was at the beginning. i thank everyone who knows and shares their experience on this site because it helps so much to understand what it going on. Helps me to learn.

      Thank you

       

      • Yes my meds have been titrated.  I am now on single therapy Tacro 2 mg BID and that keeps me at my desired levels currently.  I had a huge increase in everything once down from double that dose.

        I always mention that I had other factors, many due to infection post Tx, that have kept me with most of the symptoms many speak of.  Pain, foggy brain, fatigue, etc. and that is with following all medical regimens, eating perfect and exercising as much as my body allows.  So it may or may not change moving forward but much better.  Not better enough for me to return to my career, which also involved redearch, but still hope.

        I attribute most of my challenges to post Tx complications vs meds and recovery.  But time does heal/improve all wounds.  Along with med changes it should improve greatly.  Sounds like you are doing pretty great!

  • Hello Michelle,

    Everything you described relates to one medication or another prescribed for a solid organ transplant. Both Prednisone and Tacrolimus interfere with blood sugar management with about twenty percent of Tacrolimus users developing Type II diabetes. Many recipients gain weight as well from this combination. Tacrolimus has a number of "party favors" for those, who must take it, like hair loss, nerve issues, neuropathy, insomnia, and so much more. Members have stated that including a Biotin supplement helps with the hair loss.

    The "night sweats" may be related to the lack of kidney function, Cellcept, MMF, or myfortic (a rose by another name...) can cause GI issues and the mouth sores, I experienced this early on, I am not sure why these are short-lived but mine was. All the secondary meds (BP, Statins, and the rest have their own side effects that confound our sense of well-being.

    The key is to lower doses of these meds to the lowest possible effective dose (coordinating with your Tx team, of course.) This normally starts to happen about six months post-op. I suggest, at your next appointment, you discuss and review all your medications and their doses. I do this yearly and my Tx team complies and fully understands why.

    As I read your post, I kept thinking, "ya, that sounds about right!" It is amazing what you get used to, as it becomes your new "normal.

    • KidneyBoy,

      Your post is so important. You have helped me to accept the side effects. Sometimes it just gets to be too much. I hate to complain. I am trying hard to adjust to my new life. It is so strange because I spent 15 years preventing dialysis and now I have all these other complications. I just do not have a handle on this yet. I am getting better but still, I have to accept all of it and do the best for my health. I know others who have it much worse than me. I just want to keep my kidney and live a life that is a standard and not so many things that just crop up from nowhere. Will, it ever settle down? Prayers & Thanks. 

      • Hi Michelle,

        It does get easier, for me, it settled downafter  about a year. Hopefully your meds have been reduced, the side effects, as well. Setting good routines does prevent surprises.

        All this was so fun, I did it twice (ya...right!) Networking with friends here can help you know what to respect.

        As for being grateful and not complaining, you owe it to yourself and your donor to make this second chance as good as it can be. Don't hesitate to complain, confer, or ask your Tx neph or team about what you are experiencing, it's how we all learned and changes get made. If you don't have a right to complain, who does?

        • Thank you for your suggestions it helps so much!  I can't even think of going through this twice. But if I have too I would. Blessings to you. I got for my nex check up on Nov 30. My year was Nov. 11. I sure hope I am able to lower meds.

          Michelle

          Michelle

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