I hate Prograf

[cariad]

I am reluctant to complain on here, but I feel like I am losing my grip.

I am convinced that most of my physical problems are down to Prograf. I mentioned that I have terrible joint and muscle pain all over, what Prograf's PI sheet calls "arthralgia" and shortness of breath, or in fancy medical speak, "dyspnea". From the bit of Internet research I've done, these are not terribly rare side effects, and yet the nurses seem to have no idea what I am talking about. Yesterday, the hospital rang to say I should up my Prograf dose. UP my dose?! I told the nurse that I really need to discuss other options with the doctor, because I feel like this drug is poisoning me. I upped the dose because I'm trying to follow all of this to the letter for the sake of the trial, but the arthralgia continues to get worse and worse and worse. I could barely make it down the stairs tonight. I spend the majority of most days in bed, going out twice a week for blood draws, and not much else. I feel like I have a sunburn everywhere - it does not hurt when I am still, but when I have to grab a railing, or Gwyn puts his hand on my shoulder, or whatever, I recoil from the pain. Even the heater blowing air on me right now is uncomfortable.

I do not think I can endure this much longer and I honestly don't know what the surgeon will say on Monday. I am not supposed to come off Prograf for over a year, and I suspect that because this is a trial, I will not be able to have my drug schedule tailored to me as much as most transplant patients. I can tell you what I don't want, which is to be dismissed and told that Prograf is not the cause. I know it is the cause and I don't want to waste a year of my life over this. I want to ask about Rapamune, but the two must be chemically related because the possible side-effects are nearly identical. I have even discussed withdrawing from the trial with Gwyn if I cannot get off the Prograf any other way.

I feel like I am letting so many people down by not rebounding faster. The parents at the school where we send our kids really pulled together to help us, forming a chain of people who took over the care of our kids for two weeks as schedules allowed. Whenever I return to the school I inevitably get people stopping me (sometimes I don't even recognize them) asking how I am doing. People want to hear the classic human interest story, that I was desperately sick for so long, true love saved me, and now I am restored to health. I would love to be able to tell them that story, but I cannot even fake it right now. Obviously the surgeon took a chance on me and went to a special effort to include me in the trial, so I feel like I am somehow insulting his work by not reacting appropriately.To be honest, I would trade this for how I felt before the transplant. That's rather a depressing thought.

Maybe I over-stated this trial when explaining it to others and inadvertently convinced myself it was going to be something it cannot be. My kids are disappointed, too, but I don't think they know how to express it. When I saw the kids after transplant, my 3-year-old's first question was "Are you better now, Mommy?" At this point I feel like I've lied to them, since I told them I would be able to do a lot more with them after the transplant. I am starting to worry that I have just ruined all of our lives by getting this surgery.

Thanks for reading.

[Chris]

Sorry to hear cariad. This is the typical responce from the transplant clinic there, or attitude. I would complain again though how you are feeling worse. I wonder if you talked to Tricia, the head nurse b%$#h there. I would say nothing gets to the doctor unless it is utterly important, which is usually when your there for a clinic visit and not over the phone. I have a strong feeling thatmost of the things we mentioln to them never make it to the doctor because they, well she thinks she can manage everything without the doctors because the doctors have more important things to do. Which I have found to be a common feeling when talking to others when I have gone to the transplant seminars put on by the NKF.
 
Keep a log of who you talked to and when, what you are feeling so yo can go over them with the doctor on your next visit. Keep complaining to them too, not everyone can handle Prograf and are switched  to other meds which the trial should have been prepared for.
 
Good Luck cariad

[okarol]

How much Prograf are you taking?
What are the trough level numbers on your lab results?

[jbeany]

My  - and pardon the language - screw the trial.  Patients agree to be in one to help others in the long run.  Great, noble sentiment.  But you have to put your life and your family first.

[monrein]

So sorry to hear about this pain cariad and I wasn't aware of the joint pain associated with Prograf.  My hands and feet and one knee are very painful pretty much all the time but I was thinking it's arthritis and inflammation related to ESRD and of course all the drugs together + years of prednisone blah blah blah.  My right thumb joint is a nightmare as is my right heel (plantar fascitis) and the ball of my left foot is always a bit swollen with a badly twisted second toe that's trying to climb on top of the big toe. 
I've had new orthotics made and started back on Rheumashield ( a homeopathic preparation for arthritis that my neph has OKed) and I'm exercising pretty much every day which seems to help keep things moving around.  Having said all this, I'm quite a bit older than you (56) and been doing D and transplants for 30 years with kidney problems since 8 months old so I think our situations are quite different.
You definitely need to talk to your doctor and be brutally honest about the struggles you're going through.  If you need to pull out from the study then so be it but I'm really hoping that you'll find a way to hang in there and eventually be off all these meds.  I say this because they all have side effects that don't diminish really over time plus they're all related and to be transplanted but not immunnosuppressed would of course be the dream.  I know you know all that and I also completely understand the toll this is taking on your family life. 
I'll be curious to know what your doctor thinks of it all and also if other patients are experiencing similar symptoms.  I also agree with jbeany that the study itself is irrelevant in the long run and although NO drugs in the long run would be be such a gift to the body, in the shorter run you don't want to be so miserable. 

[Rerun]

I would walk into that clinic like a crazy woman and demand some other antirejection drug.  You are having a reaction to this drug or one of the others and you need to find out which one and drop it.  You could go on Cyclosporine!  That was the drug of choice before Prograf.

[Sunny]

Be completely honest with your transplant doctor about your side effects.
Maybe they already have a back-up plan in mind.I am so sorry you are having these terrible side effects froms the meds.
I hope they can find a way to resolve these issues for you so that you can remain in the study. A possible lifetime without immune suppressant drugs may be worth a few weeks of pain, as long as you know the pain will end at some point.I know that when I went off of prednisone after 6 months of being on high doses I was in a lot of pain for a few months.
But I also knew the pain would end so it made it barable, though at times I wondered if I was going to feel like a 90 years old forever.Feel better soon.

[cariad]

Thanks so much for the suggestions and encouragement, everyone.

Karol, trough levels are something I don't really know a lot about being so new to this drug, but my level when they decided to up the dose was 6.4. I guess they are aiming for above 8. Is the target the same for everyone? I went from .5/.5 to .5/1. I think I must be quite sensitive to this drug, because I was on the low dose steadily for the past 6 weeks, and the doctor described the dose I was on as "the medical equivalent of just showing you the bottle".

Chris, I don't think it was the head nurse, but I honestly cannot remember her name. Good idea, though, I should start taking note of what is being said and by whom. How can I train them to stop calling me with major changes on a Friday at 5:15? They know full well that any question I have they won't be able to answer, and I won't be able to talk to a doctor until Monday.

Monrein, I'm sorry that you have these pains keeping you constant company, but it sounds like you have found excellent ways to manage. I thought arthritis at first, too, but this all came on so quickly and the pain seems to come and go in every joint I have, so I began to suspect that there was more to this. It's interesting that you mention your homeopathic remedy, because I was thinking of asking them about taking velvet elk antler capsules. It is supposed to be excellent for the joints. I did a search for yours and it sounds like it is made from chicken cartilage, so perhaps this one would be an option for me. I am just a touch hesitant as there is a theoretical risk of chronic wasting disease with products derived from the deer family.

I would walk into that clinic like a crazy woman and demand some other antirejection drug.

Rerun, I can totally do this. Never been on cyclosporin, perhaps they would let me return to Imuran? The only problem I ever had with Imuran was some hair loss, and as I'm bald now, I won't be missing out on anything. I'll take bald over pain any day. Plus, perfect strangers are really nice to you when they think you have cancer. (As opposed to the ho-hum that kidney failure often gets....)

Jbeany, you're right, in the end if they cannot fix this somehow and it doesn't get better, we will have to part ways and I'll let the guilt go.

Thanks, Sunny, I hadn't thought of the idea that I may still be in the temporary adjustment period. Things were a little easier today, so maybe??

I really appreciate you all taking the time to respond.

[Bajanne]

I can't offer you any advice, but I do send my caring thoughts   I do hope that this situation can be regulated expeditiously.
Please don't hesitate to share when you are going through your stuff.  That is what we are here for.

[jbeany]

Protocol for tacro (Prograf) levels is ideally between 8 and 10, closer to ten.  I'm on 1.5 twice a day.  I was on 1.0 twice a day when I was still on TPN (Iv nutrition) with no food or liquid by mouth.  It absorbs less efficiently when you have food in your system, apparently.  .5 is low, but not that low.

 

[Chris]

Cariad, do you get monthly labs or weekly labs? I think I asked before, but forgot. If so, do you get a print out of the results?
I would ask Northwestern what they would like your range to be at. My protocol is different from jbeany's. Mine is 6.4 to 9.5. Mine has changed over the years also, at the begining they wanted it higher to where 11.4 was the maximum level they were comfortable with. Mine hovers around 6.2 - 6.7.  So be sure it is something to put on your "To ask" list.
 
Did Northwestern also give you a binder (organ(s) specific? It contains information they have printed up or have copied that may answers some questions. If not, they should have still given you one. All you have to do to get one is go to the transplant floor (11th floor of the hospital portion) and ask for one. Just give date of transplant and tell them the transplant clinic sent you over. That is what they told me to do to get an up to date binder, no calls necessary.

[kellyt]

OMG!  I just read the first sentense and had to reply!  I'm going back to read the rest!   I just posted a question about high Prograf and body/joint aches!   I'm going to go read the rest.  ha ha

If you are in 1/2 the amount of pain I am in, Cariad, I feel for you soooooo much!   I feel 100 years old!  Or my body does, anyway....  BRB....

Okay, finished reading...I also mentioned that I, too, feel I have a sunburn, but only after I take my evening dose.  I currently take 3/2, but I just now got a call from the doctor and was told to drop back to 2/2.  I see him on June 2nd and I'm going to get as much info as I can on this, Cariad.  My doctor is pretty good about giving me info, but he goes way too deep into "medical lingo", so I'll do my best.  I hope we can both get this over and done with.  I, too, feel like I lied to my husband when I told him my transplant would "bring me back to life", cause I'm still worthless when it comes to wanting to go do anything, travel, etc.  I'm in just too much pain.  I'm thinking about you Cariad!!!!!

[cariad]

I'm back, and feeling much calmer about all of this, although the pain is as severe as ever.

First, thanks Bajanne for the thoughts and the invitation to share troubles. I know I have it ridiculously easy compared to some here, but I so appreciate everyone's understanding when it comes to my health concerns.

Jbeany, thanks for the info. You were right, my Prograf target is 8-10.

Chris, thanks for the tips. I get labs twice a week, but they are done locally, and mistakes are made frequently. (Ooops, we forget to run a Prograf level. What, since when do you want a WBC diff? And so on....) I did get a post-transplant folder from the hospital, but all the info was quite general. I'll reread the Prograf section and see if I missed something. By the way, are you aware that the transplant clinic has moved? They are at 676 N St. Clair (across the skyway from Galter) on the 19th floor. Today was their first day in the new space, so it was a touch chaotic. The waiting room is windowless and a bit claustrophobic, but everything else is an improvement on Galter.

So, at the appointment I met with the two research nurses who are complete sweethearts, and one of them wrote down every issue I had. The surgeon was not told about this appointment, but when he found out all the problems I was having, he decided to be late to a meeting to come down and see us.

When the surgeon arrived I told him all about the severe pain and the breathlessness after mild exertion, and he took me entirely seriously. He explained that they could transition me to cyclosporin or Rapamune, but that Imuran was not an option because it serves the same function as Myfortic. He did say that both cyclosporin and Rapamune can also cause arthralgia, so I hardly saw the point of bothering. As much as the pain is awful, it is really the only side effect I've had far as I can tell, and I would hate to trade this for possibly pain and other issues.

The surgeon said it was too early to withdraw me from Prograf altogether because if I am going to reject the stem cells, it will happen in the first three months post-transplant (I am 2 months post right now). He said if it was bearable for me, that the best course of action would be to wait  for the chimerism results (which take 1-2 weeks from the draw), and decide what to do from there. Perhaps I am just hearing what I want to hear, but it almost sounded like if the results were good and I could make it to the 100 day mark, they would consider withdrawing me from Prograf at that point. There was never any talk of my leaving the trial.

For the breathlessness, the nurses agreed that I really should not be having this problem so long after the transplant. I don't have any other symptoms that were concerning, though, but the surgeon had me get a chest x-ray anyway. I am so glad he did! Sure, there's the checking that I don't have a dangerous virus part, but what's more, Gwyn and I really enjoyed going to the imaging center. It is totally new and like a spa in there. They have a large bar with a Keurig where you can make yourself tea and coffee, and changing rooms with wooden slatted doors, and private bathrooms that would not look out of place in a luxury hotel. The waiting area has large windows and little seating areas, each with it's own flat panel television and remote control. (I wonder if they actually read my last survey from their other imaging center where I stated that my only complaint was being stuck in that waiting area with trashy, exploitative court programs blaring across the room. I asked that, seeing as we were all adults, couldn't we at least get the tv set to a 24-hour news station?) When I finished my x-ray, Gwyn and I actually stayed a few minutes longer in their waiting area, finishing our tea and coffee. The surgeon said that it would be highly unusual for me to have a lung problem, so the complete lack of worry added to the light mood.

As for my kids, I apologized to them Sunday morning because they wanted to go play in the park and I told them I just couldn't do it, and started explaining to them why. My 3-year-old interrupted with "I know, because you have problems and you're sick". OK, the "you're sick" I understand, but when did I ever tell my 3-year-old I had "problems"?

Thanks again, all. I have high hopes that these problems are solvable.

[cariad]

Kelly, I just read your reply! I am so sorry that you are going through this as well. The pain got so bad in my right wrist as I was typing that I had to go put on a wrist brace to finish my post. It really, really sucks!!!

I, too, hope that there is a solution for both of us. How long have you been experiencing this? I figure if I am feeling it at .5/.5, I'm pretty well hosed when it comes to Prograf. I hope your lower dose gives you some relief and that your doctor has some answers for you.

Thanks so much for telling me about your issues. I was starting to feel like it was all in my head! I am off to read your post, and if I learn anything more about this, I will be sure to let you know. Feel free to PM me if you need to vent. I am living through it with you. 

[Chris]

Cariad, no they did not tell me they have moved and I see them Wednesday     I knew they were planning to move, but that plan has been going on for several years. Nice of them to call and let me know, typical of them 
 
As for local labs, do you have a copy of your orders? Bring them with to double check what they are doing it right. Before long you will know how many tubes, what color, and codes are used to order them. Hopefully you get copies of the results to make sure the transplant center gets them and to take with to a doctors appointment.

[cariad]

Oh, Chris, I am not surprised. Apparently everyone was going over to Galter first only to be sent to the far side of the world for their appointment. I received a call on Friday, but it came from a research coordinator. I keep telling people, they treat you better in a clinical trial. Oh, and a word of warning about timing your visit. The elevators are smaller, slower, and there are no private staff elevators so everyone waits around together. Gwyn and I had to let 3 elevators go before everyone who was there before us got on. They are also divided into two banks, like Galter, depending on which floor you need.

I have a number to call for patient services at the local lab, but last I called them, many years ago, they would not give patients results, just send it to the doctors and let them hand them over. In WI, hospital labs are usually independent companies. I need to call patient services to complain about yet another screw-up, so I'll ask if I can just get labs myself from now on. I like the idea of learning the codes - I will have to do that so that when they show me the tube to verify they wrote my name correctly, I can also check that the code matches.

Thanks for the suggestions.

[Chris]

I am familiar with that building, I have 2 doctors in that building.
What about going to patient records to get results? That is where I go to get my results, just have to fill out a form each time. Sometimes the lab will print them out, but only the people who know me through the years will do that.
 
Yes, probably the research group treats you better there, just like how they treat us pre transplant for the rest of us there

[cariad]

Not sure patient records would even get my results, since I don't think I am an official patient of the local hospital, they'd probably just hand me the same number that everyone else hands me when I complain.

Yes, probably the research group treats you better there, just like how they treat us pre transplant for the rest of us there

Yes, this is a nationwide phenomenon. If they don't treat you well pre-transplant, run for your life, because it's not getting any better!

[kellyt]

You are surely not alone.  THe severe pain has been in the last few months.  And what a coincidence my last doctor visit was in Feb.  At that time I was on 2/2, but my level was a little low (in the 4's I think), so he increased to 3/2.  The want me between 6-8 and I think.  I feel good at that level anyway.  When I get in the 10's I get the sunburn feeling.  It was just today that it occured to me that maybe my joint pain and muscle weakness was due to the higher level.  Then when I read your post I was, sorry to say, happy.  I'm hoping I hit on the right answer.  When I wake up in the morning I can barely walk because my feet, back and hips are so painful.  If I'm up for a while the pain will subside in the back and hips, but only to return about midday and stay with me.  Pain meds help a little, but I want to be pain free without taking meds.  Now that I"ve dropped back to 2/2 I will watch my symptoms more closely and let you know.

P.S.  my spellchecker isn't working so pardon any wrong spellings. 

[cariad]

Hey, Kelly, I completely understand feeling 'happy' when you see someone else going through what you're going through, bringing you one step closer to the answer.

After a positively miserable day, I have concluded that this HAS to be the Prograf, since my dose is slightly higher and things seem to be getting worse. I am now experiencing this pain in the area right where the neck meets the shoulders - it is like someone is squeezing that area really hard for a moment, and it is a sharp pain that gives new meaning to unbearable. I have decided I need to take the chance and ask to be switched to Rapamune. I plan on phoning the hospital tomorrow and waving the white flag at them.

[cariad]

I rang the hospital today and amazingly got the right nurse right away and the surgeon happened to be there, so she was able to consult with him and phone right back.

He doesn't want me to switch to Rapamune until the chimerism results come in, which should be another week to ten days. Not exactly sure what the fear is, but I suppose it is related to disrupting the stem cell engraftment somehow. I told them that was fine - what else could I possibly tell them? If it is unsafe to transition off the Prograf right now then demanding it isn't going to do me any service. I really want this to work, so I guess I will just have to accept another week or so confined to the house.

I am also getting extra labs tomorrow to check for viruses and something called myositis. This is an autoimmune disease that affects the muscles. I appreciate that he is aggressively trying to find the answer here, but that would be one tough autoimmune disorder to keep chugging along even with me taking two different immunosuppressants. So I am just on hold for now, taking Tylenol which only helps a little.

[Chris]

You were lucky to get called back so soon, but since I was at the clinic today, no wonder why the doc was able to call back so soon. It was a mad house there today, but I'll email you about that later.
Wasn't the only mad bout not being notified that they moved. They said they had signs on the second floor they moved and I'm thinking what good is the second floor if we are coming up from the 1st floor. Plus there where no signs on the second floor to begin with. I'll email about that also on their next excuse to why no one was notified.
 
Anyway seems like they don't get that we talk to others who have had a transplant and share our stories or concerns about medications and so forth. However with you being on a research throws a slight kink on protocol. In a way it is almost better to have something than having to switch a medication to solve a problem if you are limited to what can be switched, but on the other hand you wish you could be switched so you can feel better quicker. Hopefully they can figure something out cariad and it isn't an autoimmune issue which I have doubts also that it is the cause especially with what you had to go through prior.
 
Maybe I'll hold off on that email, all I'm gonna do is tell you what happened there which would be a big rant.

[cariad]

Chris, you know I would welcome an email from you, rants or whatever. Hearing about your experiences over the past year has helped me prepare for interactions with this hospital, knowing whom to trust and whom to avoid. Talking to other patients is the best! They always seem a little surprised when I say "Well, I know of someone who had this exact same issue, and this is what helped." They must think I live in a commune in Wisconsin where only kidney patients reside. I seem to know a kidney patient for every possible situation.

Sorry you had such a rough visit with them. The signs on the second floor excuse is pitiful. They've never heard of cabs, or walking, or public transportation, or just getting dropped off at the door by a friend? Crazy.

Thanks for the encouragement. Labs are drawn and I should know the results tomorrow.

[cariad]

I have had a fabulous two days. I credit the weather. 80+ degrees. I am one of those that likes it hot. I still wake feeling like each movement is agony, but after my iced tea and tylenol, I have felt almost normal. I hope it means I am adjusting to the Prograf.

I saw my GP today and of course he said "Well....?" with that expectant light in his eye. I told him it's been a rough go, but he immediately said he wasn't surprised and that I have been in decline for a good five years and so it won't be "like flipping a switch".

For the first time since the surgery, I feel immense hope that it will be possible for me to turn this corner soon.

[Sunny]

a few fabulous days sounds like a glimmer of of what is on the way for your future. good news.