High Prograf levels

[Angiepkd]

Hi everyone!  I just had labs drawn Monday and my Prograf number jumped from 7.9 to 10.  For the past couple of weeks, I have had an increase in symptoms.  Tingling in my feet and hands, blood pressure up, terrible headache, shaking like a leaf, upset stomach...you name it, I've got it.  My lab results were great.  Creatinine 0.9, all other results within range.  I see the CNP tomorrow instead of the tx doc, because they are swamped and I am 9 months out with no problems to this point.  My target Prograf level is 8-10, but they keep me on the lower end when possible.  Have any of you had a jump in Prograf levels accompanied by increased side effects?  I know it makes sense, but my original target levels were much higher and my symptoms were nowhere near this bad.  Thanks in advance!

[Deanne]

I'm 10 months out and my Prograf level tends to bounce around a bit yet. I haven't had bad side effects from it to deal with, just a bit of a hand tremor. It makes sense that your side effect would be worse as the levels in your blood increase. I was on 2 am, 2 pm and my level bounced from 8 - 11 a few weeks ago, so they reduced my dose to 2 am, 1 pm. Then it dropped to 4 last month so I just went back to 2 am, 2 pm.

[MooseMom]

It is things like this that make the first year post tx so aggravating.  In my first year, my tac levels were all over the place and my dosage was changed several times.  But I never had the side effects that you are describing.  My first year target was also 8-10, but looking back at my records, I had levels anywhere from 4 to 15!

I'm sure you're going to discuss this with the CNP today; what did s/he say?  I'm really eager to know.  Could it be something other than raised tac? 

[Angiepkd]

Thanks for the responses!  My appointment isn't for another couple hours.  I will let you know what they say.  At this point, I am ready to remove my head just to get rid of the awful headache lol!

[Deanne]

Prograf causes headaches? I missed that when I first read your post. I knew that had to be from one of the meds. I get headaches fairly often, but they don't last very long so I kind of forget about them.

My stomach is upset pretty often, too, but I'm almost positive that's from magnesium supplements. They took me off the supplements for a while because my magnesium level finally bounced up and the stomach upsets almost disappeared. Unfortunately, I had to restart a reduced dose of magnesium and the stomach upsets came back.

[jeannea]

Usually, a level of 10 does not cause any symptoms. However, everyone is different. I hope they can help you figure it out.

[Angiepkd]

When the CNP looked at my labs, she noticed that my white cell count was 12+ and it normally runs 7.  Soooo, looks like I have some kind of infection.  It would've been nice for them to notice that on Monday and save me from 3 additional days of suffering.  Due to the headache and other sinus symptoms, they are thinking sinus infection.  Prescribed 10 days of Augmentin sp?.  Told me to call if the headache didn't go away.  Also lowered my Prograf by one mg in the morning.  That puts me at 6 and 6.  Still quite a bit.
Thank you all for the replies!

[MooseMom]

Perhaps it is a good thing that your symptoms are possibly caused by an infection than by Prograf.  An infection is (usually) temporary, but having to switch drugs/dosages can get complicated.

I hope you feel better soon!

[Angiepkd]

Update.  The headache did not go away, and seemed to get worse, so Friday night I went to the ER.  Doctor was super nice and immediately gave me some nausea meds and toradol for the headache.  It was the first bit of relief I had in 6 days.  Labs were normal, but white cell count was up to 17.  Told me to continue antibiotics. Then the nurse came in and said I was discharged.  I started to panic because doctor had no prescriptions for me to take home.  I asked her what I was going to do when the headache came back after meds wore off. She spoke to the doc and came back with an NSAID and nausea script.  I immediately knew this was not going to work, but said I would try.  3 days later, still no headache relief and woke up to 101 fever and throwing up,  Back we went.  Different doc thank goodness.  Did labs showing white count down to 9.  Felt the sinus points on my face which hurt!  Agreed sinus infection, but prescribed me 3 meds:  prednisone for 5 days, a pain killer and a headache barbiturate.  Was discharged at 8 this morning and the headache hasn't bothered me one bit. Thank goodness!  I am so thankful for the relief that I haven't gotten angry yet, but the anger is coming.  Transplant clinic missed the white cell coop unit for three days.  Did not prescribe anything to help with pain.  1st ER doc completely blew it.  Finally found relief after 3 separate doctor visits.  I had a pounding headache that kept me from sleeping or functioning for almost 12 days.  I was getting close to jumping off a cliff.  Is this always what to expect?  It's the first problem I have had since my transplant 9 months ago.

[jeannea]

Is this what to expect? That's awfully complicated.

ER doctors are often intimidated when dealing with a transplant patient. There is so much information, so many meds, strange lab values, etc. If you are able, it is better for the ER doc to send you home. Then you should call transplant. Are you calling the coordinator on call before you go to the ER? You should. They may want you to have the ER doc call them back. The ER should keep you hydrated and control your symptoms until you can go home or they can talk to a transplant doc. Unfortunately, you or a family member has to speak up and ask for the communication to start.

Pain meds are more complicated. You should not be taking NSAIDs. At all. They will hesitate to give you narcotics. Often you have to get something in an injection there and go home with nothing. It sucks but you need to be safe. My transplant team doesn't let me have much in the way of pain meds no matter what the problem is. I use meditation, visualization, self hypnosis. It's not perfect but it helps.

The lab stuff is tough. At my hospital, they receive the blood test results from where I got blood drawn. Then someone has to enter those results in the computer. Then the coordinator gets a message they're available. That can take 3 days. Never hesitate to call for results. If there is a system where you can log in and look at them, do it. Then you can call and ask questions.

I know this is hard. I know it's tough to have to be in charge of your care, even when you're throwing up. I have been there. If at all possible, take someone with you to the ER to help you get what you need.

I'm glad you're doing better. I hope pain free continues.

[Angiepkd]

Thanks, Jeanna.  Unfortunately, all of the things you mentioned were done. Transplant doc was consulted, labs for my transplant were back in a day and I called to see if anything was abnormal, but was told no.  Guess the elevated white cell count was overlooked.  ER doc said NSAID meds were approved by transplant doc.  I think the biggest problem I have is an extremely high tolerance for pain.  If I go to the ER, I am seriously in need of medical intervention.  Even if I am able to function like a normal person.  Since no one at the ER knew this, I was treated like a pain-med seeking whiner.  The second trip, I made it perfectly clear that I was at the end of my rope and not going to be able to continue with the pain.  I jokingly call this the good German catholic schoolgirl syndrome.  Pain is weakness, never show it, tough it out, etc.  sometimes this does not work to my advantage. I am currently doing well, as long as the pain meds are on board, but when they wear off....watch out.  I am going to call my clinic tomorrow and let them know the situation.  My antibiotics are finished on Sunday, so the headaches should be gone.  This is certainly not the worst thing I have gone through, but it's getting close!  I had the stomach flu start on Thanksgiving morning and had to cancel my dinner.  Took several days to get my strength back.  Was good for two weeks until the headaches started and still have them.  This year is going down in the record books as the strangest ever.  I have managed to make it to two events out of 7 lol.  Family is not very happy with me, since most don't really get it.  I also still have two Christmas presents to pick up.  I think God is showing me how much I have to be thankful for haha!  If that's the case, he can stop with the lesson....I get it!  Happy Holidays!

[MaryJoe]

I hope your clinic can do something to stop your headaches today. I'm sorry your Christmas wasn't merrier.