Lowering my Prograf again

[kellyt]

I got a call this morning from my doctor's office and he wants me to reduce my Prograf to 2/2.  He lowered it from 3/3 to 3/2 a couple of weeks ago and now wants to go to 2/2.  I'm not complaining.   

When he originally dropped it from 3/3 to 3/2 my Prograf level was in the 9's.  We made the reduction to 3/2 and one week later my labs showed my Prograf level to be in the 10's.     I only have feelings of "vibrating" after I take the evening dose and lately I've been feeling sortof like restless legs, as well.  But only in the evenings.  I take my evening dose at 9 and these "feelings" begin at about 10 or 10:30.

So starting tomorrow I'm dropping to 2/2 on my Prograf.   

Question to others who are taking Prograf or have taken it in the past, if your level is too high can that also make you really tired?  I just haven't had the energy to stay awake lately.  Could it be the high Prograf level?   

[willieandwinnie]

  Kelly. They are also still discussing Len's prograf levels as he can't walk across the room without being exhausted. He goes Monday for labs. He is only taking .5 am and pm and he is having the horrible I am so tired thing also. The transplant folks say that with Len at 21 months out that his level is too high, 6.4. They want it lower then that so I guess at his June 8th appointment they will decide something. It has been so crazy getting this adjusted right. Len was taken off of cellcept long ago and that has had me worried. He is getting labs still once a month, more when they make changes. Please keep us posted. 

[vandie]

If your Prograf levels are too high, it can make you tired for sure.  I was in bed for a week last year thinking it was the flu and my levels were through the roof.  I take 2/1 and I have trembling to the point people notice.  Irritating, but a small price to pay for a happy kidney.

xoxo

[kellyt]

I totally agree, Vandie. I don't mind the "trembling", which is minimal for me, but the "vibrating" feeling at night is annoying.  And I can't stand the restless leg stuff.  Apparently, he wants my levels between 5 and 10, but apparently at 9+ I have this strange feeling.  I'm so glad to hear that the tiredness is due to the Prograft level.  I am tired of being tired.  I was expecting all this extra energy after transplant, but I still just want to sleep.

Willie, if Len is only on .5 mg am/pm, where is he supposed to go after that if his level remains high?  That is crazy!  I have noticed that when I am cleaning the house or making my bed, etc. I get so winded.  I just chalked it up to the extra 20 lbs and just being out of shape.

Thanks so much for the info.  I'll do labs again a week from Friday.

[willieandwinnie]

kelly, this came right from webmd site:

Shaking, headache, diarrhea, nausea/vomiting, upset stomach, loss of appetite, trouble sleeping, or tingling of the hands/feet may occur. If any of these effects persist or worsen, tell your doctor or pharmacist promptly.

Remember that your doctor has prescribed this medication because he or she has judged that the benefit to you is greater than the risk of side effects. Many people using this medication do not have serious side effects.

Tell your doctor immediately if any of these unlikely but serious side effects occur: mental/mood changes, seizures, dizziness, change in the amount of urine, tiredness/weakness, fast/pounding heartbeat, hearing problems (e.g., hearing loss, ringing in the ears), pain/redness/swelling of arms or legs, easy bruising/bleeding, muscle pain/cramp, yellowing skin/eyes, dark urine, persistent nausea/vomiting, stomach/abdominal pain, swelling ankles/feet.

Seek immediate medical attention if any of these rare but very serious side effects occur: fainting, irregular heartbeat, vision changes, chest/jaw/left arm pain, black stools, vomit that looks like coffee grounds.

Tacrolimus may cause your blood pressure to increase. You may be required to check your blood pressure periodically and/or take another medication to control your blood pressure.

Tacrolimus may cause diabetes. Tell your doctor or pharmacist if you experience any of the following symptoms of high blood sugar: increased thirst/hunger, frequent urination.

A very serious allergic reaction to this drug is rare. However, seek immediate medical attention if you notice any symptoms of a serious allergic reaction, including: rash, itching/swelling (especially of the face/tongue/throat), severe dizziness, trouble breathing.

[kellyt]

Thanks.  That's good information for everyone to see - pre and post transplant.

I can honestly say that my "symptoms" are a vibrating sensation at night, tired and some nausea after I eat.  But only if I overeat. None of my symptoms do I feel are extreme or severe.  Not yet, anyway.  I have talked to my doctor and he's pretty sure that my high level (not toxic level) is causing these symptoms.  Hopefully, coming down another mg will help.

Thank you SOOOO much.  You have done your homework!  Len is very, very, very lucky to have you.  I sure wish you and Len would come to Vegas this year.  I'd love to meet you both!   PLEEASE?

[charee]

Thanks all that has answered some of my questions too, i take 2.5 morning and night they want my level between 8 and 10 because i was high risk (with the antibody's) i am tired too my last labs it was 9.3 so maybe that is why. In the first few days after transplant my level was in 30 and at the last biopsy it showed some damage to the kidney from the high level . I'm off today to have a follow up scan on the artery to see if the ballooning i had last month has worked so fingers crossed and thanks again gotta love this place so much to learn

[willieandwinnie]

charee, that is an awful high level. Are they going to reduce your meds?

Willie, if Len is only on .5 mg am/pm, where is he supposed to go after that if his level remains high?  That is crazy!  I have noticed that when I am cleaning the house or making my bed, etc. I get so winded.  I just chalked it up to the extra 20 lbs and just being out of shape.

Kelly, I have ask just that question. I was told by the transplant coordinator and the local Neph that reducing the prograf is done by doing .5mg on Monday, 1mg on Tuesday (.5 twice a day), .5 on Wednesday and repeating that for the week. That ought to be enough to drive somebody crazy. 

[kellyt]

Oh Lord.  Let's hope that he can just stay at the dosage he's currently on.  That is nuts!

[Romona]

I have talked to someone on another message board that takes 1mg once a week. It was a close match from his sister. My coordinator and I noticed I feel best at 4. when mine gets to 6-7 I feel terrible.

[MandaMe1986]

I missed this before. yey