WORRIES-anti rejection meds: Hello! I... - Kidney Transplant

Kidney Transplant
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WORRIES-anti rejection meds

Trouper
Trouper

Hello!

I hope everyone is safe.

Next month is my 1st Kidneyversay (Thank you Jesus!)

I just have some worries, and i’m not sure if its the anti rejection meds or its just the prednisone itself.

-My tummy looks like im pregnant now(is this accumulation of fluid)

-My hairs is starting to fall off again

-and most of the time im feeling tired

-is on and off pain at the surgery normal still even if its almost a year now?

Meds: 5mg prednisone, 2mg twice a day of prograf and 1,000mg twice a day of cellcept.

Thank you!

27 Replies
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Dear Trouper,

Can I give you a 'quick' answer first... Then a more 'detailed' one after. The short answer is YES, quite Normal.

Prednisolone DOES, as with all Steroids, tend to lead to weigh gain- typically a 'Moon' face. As regards, your pain, around the Transplant area- again quit Normal. Have you noticed any 'Strange/ Odd' feelings down you leg... the 'Numb' one? Basically your Nerves are beginning to Regenerate. A slow process that, I too, began to 'Notice' about a year later.

Maybe, just perhaps, try 'Speaking' to your Doctors/ Consultants about reducing the Prednisolone down- very slowly, over the next six months or so. The 'Prefered' level is 5mg, per day... I can't 'get' below 6mg... but Do ask Trouper. While your at 'it, why not,' ask for ALL your Medication to be Reviewed- one, or more, could be causing the alopecia...Hair Loss.

As regards your Fatigue, continual tiredness, I can't comment- I don't know enough about you 'Condition'. Again please DO see your own Doctors/ Consultants, regarding this.

Finally... Congratulations, on 'Reaching' your first year.... Well done indeed. I'm a 'tad' further Down The Line, than you- my Transplant was July 2013, almost Seven years now... Amazing.

Good luck, for your Future, my friend... if you have ANY further questions the please DON'T hesitate to ask- any of us.

Kind Wishes, from us all

AndrewT

Trouper
Trouper in reply to AndrewT

Thank you AndrewT!

I have asked my transplant team regarding about my medications. Tho they understand my concerns they said it is the protocol of the transplant center to have a lifetime of prednisone 5mg.

Congratulations for your soon to be 1st anniversary! How is the function of your transplant kidney? I think that is the number 1 thing your transplant team will care about. If your creatinine and GFR have remained stable for a year, I think it would be likely that they will agree to reducing your meds gradually. I find it helpful to talk to them about any new symptoms immediately so adjustment of treatment can be tried. Let us know how your visit goes. Congratulations again!

Trouper
Trouper in reply to LisaSnow

Thank you Lisa! my creatinine baseline is 0.6 to 0.8.. its been like that since i got my transplant. They said there wont be any changes especially with my prednisone :/. It's okay, what matters is my labs are normal and I am healthy.. just gotta deal with the side effects i guess.

LisaSnow
LisaSnow in reply to Trouper

Your creatinine is amazingly good! Was it from a living donor?

Trouper
Trouper in reply to LisaSnow

Yes it is. Thank God!

No Lisa, it was froma deceased donor. Family members and some friends tried to donate before but nothing match. Almost loss hope but trusted that his plans are wayyy better.❤️

LisaSnow
LisaSnow in reply to Trouper

That's amazing! In the US, deceased donor transplants rarely achieve such high function in recipients. My team said I should expect a 1.4 or higher creatinine as my "best" in fact. Thank goodness I am a little lower than that. Your team certainly did a great job for you so despite the side effects, you can feel very good about that!

Congratulations. While some of this may be along the lines of normal, please be sure to discuss with your care team and stay in regular contact with them.

I am on an NO steroid treatment regimen so perhaps you might talk with them about this option. I am allergic to steroids and this causes swelling all over, rash, itching (for me) I am not saying that may be your concern but talking about other options is always a good idea.

Steroids may also be the culprit in your hair loss as well but the other meds may also play a part in this. I lost a lot of hair, my eyelashes etc., and its really never been the same. I take 8mg Tacrolimus (4am, 4pm) and Mycophenolate (Myfortic) 360mg 1x day.

I still get phantom pains at my incision site, even 5 years post transplant, sometimes extreme itching along the incision line as well. Good luck to you and congratulations again.

Wow you get up at 4am everyday? That's impressive!

That was intended to mean 4 pills in the AM and 4 in the PM. But I do get up not much beyond 4am, unfortunately. ha ha!

Hi Donald! Thank you. Yes i have loss mines a lot as well. I have to wear a wig on my wedding day. lol! for the prednisone, I wont be out of it per Transplant center. Will find some ways how to work on side effects

WYOAnne
WYOAnneNKF Ambassador

As others have said, have you talked to your transplant team regarding these side effects? They have heard this before, believe me. They cannot do anything about your issues if they don't know about them. Prednisone is a likely suspect, but the others can cause some of the problems you are having too.

If your renal lab values are stable the doctors should be able to decrease your dose. I had a lot of GI issues that first year and my transplant team was able to reduce my dose of Myfortic, similar to cellcept just easier on your GI tract. After a couple years out I was able to ween myself off the prednisone. I am 20 + years post transplant and continue to take Myfortic and Neoral (cyclosporine).

So, call or make an appt. with your team and ask for their help. Don't suffer needlessly...

Best of luck!

Trouper
Trouper in reply to WYOAnne

Hi WYOAnne, Yes i have brought my concerns to the Transplant team and they said the protocol is to have 5mg prednisone lifetime. Apparently they cant stop it even if my labs are all in good numbers.

My baseline creatinine is 0.6- 0.8 since i got my transplant.

I will just have to focus on how the meds are working on my body and find ways how to decrease or work on side effects.

Thank you!

WYOAnne
WYOAnneNKF Ambassador in reply to Trouper

If I were you....every time you see your nephrologist or transplant team ask them again about getting off prednisone? I think my team got tired of me asking! I think I was about 5 years post transplant when they agreed I could slowly stop the prednisone with the condition if my labs changed I would have to restart. There are some on this site, that take no immunosuppressants at all. I am 20 years out and I had asked my nephrologist if I could wean myself off my immunosuppressants (Neoral and Myfortic)? Even though I am stable he said NO!!!!!!!! But I am off prednisone and the other meds have had their dose reduced over time

With time, you will figure out what works for you and your body, as far as when to take your meds...do you eat with them, eat first and then take or eat and then take your meds Everyone of us is different, so you are kind of on your own. I figured out what works for my body, because I had some pretty horrible GI issues that first year and a half.

Things do get better....I never even think about it any more.

I wish you only the best! Let me know how you do

Jjjjxxxxxxx
Jjjjxxxxxxx in reply to WYOAnne

Was your kidney a very good match ? I’m desperate to stop Pred and will def try to bite them to death over it. 10 months on the journey !

WYOAnne
WYOAnneNKF Ambassador in reply to Jjjjxxxxxxx

My kidney was a 4/6 match from a 16 year old deceased donor. Within that first year they were able to reduce the dosage of my other immunosuppressants - Neoral and Myfortic. For me it was about 5 years before they agreed to let me wean off the prednisone. Labs were stable and remained stable even after stopping the prednisone

Hello Trouper,

First-congrats on your 1st Kidneyversay!

I celebrated mine April 21. Although I am taking slightly different meds, I have been having problems with the side effects too: hair loss, dizziness, constant diarrhea, and strangely-sadness and a feeling that things will never get better.

I have little energy and although I promise myself I will accomplish at least 2 tasks every day, sometimes I am so tired and achy that I'm lucky if one thing gets done. Also, I have bone and muscle pain especially in my lower back and legs.

The Transplant Clinic has indicated that I should be 100% by 1.5 years after the surgery, that will be in October. At lot of things will have to get very much better in the short time that is left.

I used to be a very active person. I want to have the energy to clean and shop and cook that I did before all this happened. It makes me so sad that I am a mere shadow of what I used to be.

I am very sure that my complaining is of little help to you except for the fact that you are not alone and that all of us HEAR you and we will pray that you will be better soon.

Trouper
Trouper in reply to Ynnep

Hi Ynnep!

Congrats on you Kidneyversary as well! <3

I am an outdoor person as well. Before I got sick I do hikes almost twice a week but now i barely made half.

Still praying for FULL recovery and been doing little by little will make it better.

With my meds, they said it wont be change especially my prednisone. I have to take it lifetime per Transplant centers protocol.

Did you get your transplant from a living or deceased donor?

Talk to you soon!

Ynnep
Ynnep in reply to Trouper

Donor was deceased, gave both kidneys and a pancreas. I have met the other kidney recipient, but have not seen her at Kidney Clinic. Really hope she is doing well. We both had some issues after the actual transplant.

I am assuming that you are younger than I, since you are hiking. I'd be thrilled to have the super clean house that I had before the transplant.

I have adopted the "fake it 'til you make" attitude, as I am 72 now and they don't do youth transplants!

My best and special prayers for you.

Hi Trouper!

Congrats on your first year of transplant!!

We are almost identical in our medications and its doses minus the cellcept (5mg pred and 2mg tac). I can completely understand and relate to the side effects that you have mentioned above even after 9 years! I was recently showing my belly of what looked to be about 4months pregnant (not pregnant tho lol) to my sister's family. I told them its the accumulation of fluids. I joke about it here and there, but it is quite annoying. Second, my hair fell off for 1.5 yrs after 4months of transplant from the tacrolimus. It eventually went back to normal- hair grew out fine and weak..

And as everyone else has said, ask your transplant team and keep yourself hydrated!! :)

Take care~

Trouper
Trouper in reply to Dna4christ

HI Dna4-christ!

Sorry for responding late. I have to make sure I meet my transplant team and come back here with some informations.

Yes to the look like pregnant lol. I was a lil shock when i notice it and people really see me as pregnant sometimes. Apparently prednisone can't be stop and have to be in my system forever per my transplant team.

With my hair loss, it gets to a point where I have to wear a wig on my wedding day because theres only maybe 10left! haha.

Any diff thing you did with the belly problems?

I hope you are well!

Dna4christ
Dna4christ in reply to Trouper

I dont do anything particular for my bulging stomach which is much more noticeable than some days except limit my salt and water consumption. If I eat really salt that day and drink a lot of water, then my stomach will make me look. Its definitely the salt intake. Other times, I walk around outside proudly- letting others assume that I am pregnant. Hahaha

Hi my anniversary for 1 year transplant will be September 9 2020. I did have swelling around the surgery site after my biopsy but it went down after 4 weeks. My hair was thinning also but I started taking Viviscal daily and it has really helped. You can order it online, please ask your doctor first. I feel really grateful and blessed also. Hope this helps you. Plus I drink a lot of water. It helps keep everything moving. Good Luck and I hopr you feel better soon. The dose of Prednisone is so low it should not affect your weight. Exercise is very good.

Advance Happy Kidneyversary bakermaker!

My doctoros dont advise me to use any OTC drugs. My hair is slowly growing but not as before anymore.

Yes, I will stay active since they said I cant stop my prednisone even if my labs are all good.

Grateful and Blessed for the second life as well. I think few side effects is just little compared to the big things that im experiencing right now.

Hi Trouper, do you know what your tacrolimus trough level in the blood is?

Trouper
Trouper in reply to LisaSnow

Hi Lisa, they want me to stay at 5-5.1 now.

I used to be at 8-9 before my transplant month.

LisaSnow
LisaSnow in reply to Trouper

That is a good range, and your creatinine again is the best of the bunch!

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