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Author Topic: Is anyone who has had a tx NOT on prednisone???  (Read 1399 times)
KeenString
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« on: January 29, 2019, 07:05:15 PM »

My tx will be at Miami Transplant. On my initial appointment, they gave me a list of medications and said "These are the medications you will be on after the transplant." They were Prograf, Myfortic, and Rapamune. I am assuming that this means that I will not have to take Predisone. Let me explain, I have an awful fear of this drug. I took a mild dose of it for a short period of time when I was younger (I believe my third year of high school) and it not only gave me very violent mood swings, but also made me suicidal. I can't explain how this drug messed with my emotions, but my doctor at the time took me right off of it. Now understand that I have never suffered from any kind of mental disorder, depression, or suicidal thoughts, ever. This was a whole... deal. I don't think I need to go into detail about 'violent mood swings' to explain how horrible being on this drug was. Use your imagination.
That said, I understand I'll probably be on a dose of solu Medrol for the surgery, and maybe on a dose of it after surgery, and I think this is what scares me the most. I'm terrified that I'll explain this to the surgeons and they'll blow it off, give me the "sorry you have to" spiel, or worse, they'll find my complete unwillingness to go on this drug to be a reason to not grant me a transplant. I'm not sure what to do in this situation. On one hand I want to tell myself to quit being a p*ssy and get used to the idea of being on this drug. On the other, I don't know what the point of going through the whole surgery and transplant is if I'm going to be miserable, spend days crying in bed for no reason, get into fights with people for no reason, lose interest in everything and everything, and want to kill myself, anyway. What would be the point of getting a new lease on life, if I just want to end it because a drug I'm taking makes me a different person?
On the other hand, I just don't KNOW what kind of med regimen I'll be on, and when I try to get answers from the coordinator, she says I'll have to ask the surgeons. I won't get to meet with the surgeons until I have a psych eval (which no one seems to have heard of, either.) I can't get answers. What I'm wondering is, are there any transplant recipients who DO NOT take ANY prednisone, or any kind of drug that is it's equivalent? I hear all these things about "no steroid" hospitals, but I have yet to actually hear about someone who is not on this dreaded drug. Someone please tell me there's hope!
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kristina
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« Reply #1 on: January 30, 2019, 04:34:00 AM »

Hello KeenString, please ask your doctor about this. The medical world seems to have moved on because after my transplant weeks ago I was not being "put" on steroids. Mind you, in my medical file it is noted that when I was being put for a few days on steroids many years ago, it did not go well with me and I was found to be allergic to steroids and therefore I had no steroids ever since. So yes, there is hope. :bow;
Good luck from Kristina. :grouphug;
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iolaire
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« Reply #2 on: January 30, 2019, 05:18:29 AM »

They were Prograf, Myfortic, and Rapamune.
Those are the very expensive drugs that will have high copays. There will be many more medications and minerals that may be needed at least initially. 

Prednisone is an established (still) low cost generic that costs about $6/month so it would not be mentioned.

But as Kristina shares its possible to do things steroid free these days, so make sure you talk about that at your evaluations with both the nurses and the physiologist.

I will say personally I had very unpleasant dreams during immediately after transplant when I was on 60 mg of prednisone. So I believe you when when you said it messed with your mind. Those dreams tapered off as the levels fell and I donít have them now on my maintenance doses in the 5 mg - 15 mg range.
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Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
UkrainianTracksuit
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« Reply #3 on: January 30, 2019, 05:33:19 AM »

I haven't used any prednisone for almost 6 months. Once I had a clear kidney biopsy, they weened me off. I was on the maintenance for around 4 months of a measly 5 mg. There were no side effects but compared to the earlier high doses (in hospital and shortly after discharge) I was a fire breathing dragon, but it was tolerable, just not for the people around me.
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MooseMom
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« Reply #4 on: January 30, 2019, 08:21:58 AM »

I still don't understand what you are envisioning when you talk about a "psych eval".  Are you thinking that this is some special off-site questioning or something?

THIS is exactly why I've said that the pre-tx evaluation is YOUR opportunity to tell the team your concerns and ask them your questions.  Do you remember the dosage of the prednisone you took earlier in your life?  I have read on this forum of people taking quite high amounts for reasons that are not transplant related.  I started on 30mg but was quickly reduced to 5mg, which is what I still take 6 years on.  But patients can have different reactions to different drugs, and while it is true that there is the usual cocktail, there is a whole arsenal of medications out there at your team's disposal.

Your tx team knows very well that the point of getting a transplant is NOT so that you can spend your life crying into your bedsheets and wanting to take out everyone you may pass on the street. 

May I suggest that you alter your perspective a bit?  Tx teams have many patients.  You have only one.  Your team is going to rely on you to give them the information they need to help make your transplant a success.  You do not need to defiantly declare, "I refuse to take that drug."  Instead, you can present your case in a more informative, helpful way.  You can say, "I have experience with this drug in the past. (Can you get your hands on your previous doctor's notes or any evidence that this drug had an adverse effect?")  This is what happened at that time, and I am concerned that taking this drug will not make the transplant a success.  What do you think we might do about this?  Perhaps now is the best time to address this issue."

Good luck!
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« Reply #5 on: January 30, 2019, 09:43:46 AM »

I had my transplant this past October. I was on high doses of prednisone the first week or so then rapidly tapered to 5mg daily. That dose is so low you won't notice it. (wish I could blame it for being hungry, but that's probably just boredom from the bad weather) Yes there are lots of meds to take, but you are probably already on lots of meds for kidney complications.I'm on prograf, myfortic, prednisone, and Bactrim. Antifungal med was the first month, and antiviral med for 3 months. All my old blood pressure meds are gone except for a low dose that is for my heart.

My mood the first 2 weeks was definitely irritable and jumpy. I couldn't wait for everyone to go away and leave me alone!

I've had a little setback with a post op wound infection, but I just keep telling myself--no machines! My creatinine is 1.1! As soon as my immunity improves I am gonna jump on a plane and go somewhere! (Current temp here in Illinois is 13 below with windchill in the minus 30's and my kitchen pipes are frozen) I took a big bag of old meds to be recycled and that felt good.

Moose Mom is right-your transplant team wants you to have a good outcome and can work around any issues you have. People sometimes are afraid to be their own advocate-get over that!
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PD for 2 years then living donor transplant October 2018.
MooseMom
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« Reply #6 on: January 30, 2019, 10:52:08 AM »

(Current temp here in Illinois is 13 below with windchill in the minus 30's and my kitchen pipes are frozen)

Oh no!  Frozen pipes are no good.  Isn't this weather astonishing?  And it DOES make you hungry!
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
justagirl2325
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« Reply #7 on: January 30, 2019, 01:10:17 PM »

My guy was tapered down to 5mg of prednisone within a week of the kidney transplant.  But when he experienced acute kidney rejection he had three doses of 1,000 mg (by IV) to stop the rejection.  After that it was monthly step downs of 20, 15, 10 and 5.  That took a long time to leave his system.  He was really agitated for a long time. 

The pancreas transplant Sept 2018 brought him back to 20mg.  After that it was monthly step downs again 20-15-10-5. He has just been finally been stepped down now to 5mg and will likely stay that way forever.
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KeenString
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« Reply #8 on: January 31, 2019, 06:00:36 PM »

Oh wow, I haven't even checked the copays of the meds they told me about yet. Would it be worth it to ask them if there are less expensive drugs I can take? I assume there is going to be a financial adviser available to me. One of the things they told me is that they will make sure that I can afford to pay for my meds, so it would probably be a good idea to research this...

Also, I take not a single med for my kidneys, other than binders. On occasion I have to pop a hydralazine for my bp, but usually that's only when I wasn't able to do dialysis. I take a reno vitamin as well. What kinds of other medicines do people with kidney problems take?

So, here's the thing. I was on a LOW dose when I was on the prednisone years ago. I'm pretty sure it was 5mg, def no more than 10. This wasn't a matter of just being irritated, this was... I don't know how to describe it. It was some kind of mania. Moosemom, you are absolutely right, and that's a great perspective to look at all of this. I find that I am constantly having to alter my way of thinking about many things pertaining to this transplant. You actually suggested the same thing my Nephrologist suggested when I spoke to him again today. He said rather than to go in absolutely refusing anything, just tell them about what happened in the past. Unfortunately I do not have any documentation of this from a doctor, because my doctor has since then passed away. (He was an amazing PCP, too, and I miss him dearly.) I did ask my current doctor if he had any records of this, as the one I see now is the dr that took over his practice, but he was not able to find anything before a certain date.

I suppose I'm just very jumpy about it because I never want to feel like I felt when I was taking it ever again.

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Simon Dog
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« Reply #9 on: February 01, 2019, 07:14:25 AM »

Transplanted on 9/7/18.   Given prednisone in the hospital and if I remember correctly one dose after.   Now on Tacro (Program) 1.5 BID and Mycophenolate (Cellcept) 250 QD.  Noi prednisone.  Low dose Cellcept due to low WBC/ANC.   Taking occasional Granix (subq) for low WBC.
« Last Edit: October 24, 2019, 03:50:43 PM by Simon Dog » Logged
KatieV
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« Reply #10 on: February 01, 2019, 07:59:13 AM »

Oh wow, I haven't even checked the copays of the meds they told me about yet. Would it be worth it to ask them if there are less expensive drugs I can take? I assume there is going to be a financial adviser available to me. One of the things they told me is that they will make sure that I can afford to pay for my meds, so it would probably be a good idea to research this...

Also, I take not a single med for my kidneys, other than binders. On occasion I have to pop a hydralazine for my bp, but usually that's only when I wasn't able to do dialysis. I take a reno vitamin as well. What kinds of other medicines do people with kidney problems take?

So, here's the thing. I was on a LOW dose when I was on the prednisone years ago. I'm pretty sure it was 5mg, def no more than 10. This wasn't a matter of just being irritated, this was... I don't know how to describe it. It was some kind of mania. Moosemom, you are absolutely right, and that's a great perspective to look at all of this. I find that I am constantly having to alter my way of thinking about many things pertaining to this transplant. You actually suggested the same thing my Nephrologist suggested when I spoke to him again today. He said rather than to go in absolutely refusing anything, just tell them about what happened in the past. Unfortunately I do not have any documentation of this from a doctor, because my doctor has since then passed away. (He was an amazing PCP, too, and I miss him dearly.) I did ask my current doctor if he had any records of this, as the one I see now is the dr that took over his practice, but he was not able to find anything before a certain date.

I suppose I'm just very jumpy about it because I never want to feel like I felt when I was taking it ever again.

Not all transplant programs use prednisone as part of their immunosuppressant regime.  I'd definitely mention your past history with it to the team.  I have several medications that I don't "do well with" and any transplant program will need to decide whether or not to modify their program to accept me (if they even use those drugs).

Not long after my sister's transplant, having dinner one night, she was convinced the washing machine was playing music!  And there was no music playing at all!  She had a couple other weird things around the same time.  It was chalked up to prednisone.
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~~~~~~~~~~~~
March 2007 - Brother diagnosed with ESRD, started dialysis 3 days later
April 2007 - Myself and sister also diagnosed with Senior-Loken Syndrome (Juvenile Nephronophthisis and Retintis Pigmentosa)

Since then, I've tried PD three times unsuccessfully, done In-Center hemo, NxStage short daily, Nocturnal NxStage, and had two transplants.  Currently doing NxStage short daily while waiting for a third transplant.

Married Sept. 2011 to my wonderful husband, James, who jumped into NxStage training only 51 days after our wedding!
~~~~~~~~~~~~
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