Prograf

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nycpetit
Posts: 262
Joined: Fri Apr 23, 2004 11:00 pm
Location: Miami Beach

Prograf

Post by nycpetit »

Hi there. A question about lovely Prograf.

When I got out of the hospital a month ago, I was on 2mg in the am and 2 mg in the evening, then went to 2/3.

By the end of that first week, I went to 3/3. Although with time I've noticed that the blood levels take about a week to show the increase in Prograf dose.

The next week it was still a little low, so up to 3/4.
So the following week, it was suddenly rather high at 14.4. And I am very small, so 10 had really been the goal

So back to 3/3. And for two weeks it was stable at 12.2 which still seemed a bit high for me, but he wanted to wait until one month to change it. Fair enough.

However, just as he was going to lower it, last week, it suddenly was only 9.5 even though I had NOT changed the dose at all. I guarantee had I gone in the next day, it would have still been about 12.2. But with that 9.5 reading, he was not going to lower it.

So today was essentially my 1 month appt. And I go only once a week (since last week). Last week I'd been feeling that the dose was too high. A burning sensation with my hands and legs, and somewhat tired, and some overall leg pain. But by this past Saturday, it was arm pain too, and bad, very bad. Like in the joints, but every joint. It was keeping me awake at night too.

Today I asked again about it being lowered, but again with the 9.5 reading last week, it wasn't really in the cards. But if today's was too high,he would lower it, since the side effects I was complaining of did seem to be due to Prograf. Also, my creatinine went up from 1.0 to 1.1 to 1.2 today.

Well, my Prograf level today was 14.7!!

Can anyone explain how by not having changed the dose at all it went from 12.2 for two labs, down to 9.5 and then 14.7 today, which is the highest it's ever been, even higher than when I was taking more Prograf!

So obviously I am now going down to 2/3, but I don't understand how it could jump around like that? Is that normal, par for the course? My hands have started to tremor as well. Eventually they feel my maintenance dose will be 1/1 but that's a way's off.

I was just a little peeved because regardless of that low reading last
week, which I think was really a fluke, I have had the increasing side effects. My potassium is hard to control so I am still on a somewhat restricted diet (and it does seem to correlate with the Prograf dose) and now the pains. The pain in my arms now was so great that I needed to get Vicodin painkillers today. And just to think, I never even needed it for the incision, only to combat the Prograf. Crazy. I also started getting the hand tremors now.

Can someone else share their experience with Prograf? Blood levels bouncing around even though the dose didn't change, or the side effects you had? And one last question, can an elevated level of Prograf in the blood slightly increase your creatinine as it seems to have with me? I was at 1.0 when I was closer to the 10 Prograf blood level, but when the dose is high it seems to elevate slightly to 1.1 and today's 1.2

Thanks
Natalie
Cheryl in CT
Posts: 412
Joined: Wed Apr 21, 2004 10:17 pm
Location: Connecticut, USA

Prograf

Post by Cheryl in CT »

Geez, Natalie, I don't know....

They started me on 2 & 2, then 3 & 2, then 3 & 3, and now, for about 18 months, I've been on 4 & 4 a day.... I don't have the side effects that you're having, tho, and I never have.

Are you taking the Prograf at the same times every day? They told me "every 12 hours" and NEVER fewer than 12 hours before a blood test, and my levels have been steadily the same after each change in dosage, whether "too low" or "just right".... At 4 & 4, I'm where they "want" me to be, level-wise, and the blood test results (thus far) have always been the same, just as long as I take the pills 12 hours apart. Is that what they have you doing, too?

Maybe I've just been lucky, but up till now, at least. I haven't had any problems with the Prograf.

Will talk soon... Incidentally, I'll be back in town on Thursday - any chance you'll be around?

love,
Cheryl
nycpetit
Posts: 262
Joined: Fri Apr 23, 2004 11:00 pm
Location: Miami Beach

Hi Cheryl

Post by nycpetit »

Yes, I will be around Thursday. You let me know what time. I met Hal last night, and showed him my apt. and FEElix my kitty. I was to have met him today too, but I just felt so awful so I am taking him tomorrow for Matzo ball soup and around the Upper Westside, my fav area. I felt really bad about today, but I needed to just take the Vicodin and pass out.

I have no idea why I am all over the map. Took the 2 tonight. I am very careful with doses. At most I have been maybe fifteen minutes off one way or the other. But I tend to always match that with the am. Like if I was fifteen minutes before nine in the morning, then I do the same at night.

My potassium is definately affected by whatever the dose is. A bit better on 3/3 than it was on 3/4 should be even better now on 2/3. But I know in reading that these side effects I am complaining of are not uncommon if you are going to get some with the Prograf. That said, maybe it could be Cellcept too. I was taken of the blood pressure meds last week, and i don't need it for now.

But the arm pain is just bugging me. Before that it was my legs, again not uncommon. And also because the incision was so low, that caused some leg pain. One other possibility is a serum sickness from the thymo in the hospital. Or that I just can't tolerate Prograf. A lowered dose should help however. They said that later on a Prograf level of 7 or even 5 will be fine for me.

In any case, do let me know if you are coming and when I can meet you!!!

love
natalie
Anne in Va
Posts: 246
Joined: Fri Apr 23, 2004 11:28 am
Location: Virginia

Post by Anne in Va »

Hi Natalie,

Seemingly this is typical for Prograf in the initial months. I had similar problems with the level bouncing around at the beginning. I had a high of 24 and a low of 5. I started at 3/3. Kept reducing until now I take 1.5/1.5 - nine months out. My blood levels have now remained consistant for several months.

My creatinine also rose mostly because of the Prograf but also because of the Septra. Once I stopped the antibiotic and my Prograf levels settled my creatinine level also came down. It scared me when my creatinine started to rise and I found it difficult to believe my doctor when he explained why it was happening. Of course, I was thinking of all sorts of awful reasons.

I also had high Potassium but that settled once the Prograf did. remember that Prograf does not stay at a constant level during the day and there are various things which influence it. The type and amount of foods you eat can cause changes so morning trough levels may not be exactly the same though, in time, they should become more consistant.

When my levels were too high I would also have hand tremors and leg aches. Again these have gone now. Did not have the arm pain. That sounds awful!

As Cheryl says, be sure to take the pills 12 hours apart and make sure you have a good twelve hours before blood work - I'm sure you are doing this. At some point, I can't remember when exactly or what it is called, they will draw blood several times over a few hours to measure your level from trough to peak.

Hope this helps a little. Take care and Drink, Drink, Drink!

Love, Anne
Last edited by Anne in Va on Thu Sep 16, 2004 2:36 am, edited 1 time in total.
SteveUK
Posts: 524
Joined: Fri Apr 23, 2004 10:50 am
Location: The Bourne that was made for Sitting

Post by SteveUK »

Hi Natalie

I can relate entirely to these circumstances. I take Neoral now 25mg mornings/evenings. Now I say Neoral, because I know that Neoral and Prograf are very similar drugs and have very distinct similarities in how they work, how they react with the human body etc.

I had some very high levels of the neoral in my blood and I'd too get the burning sensations in my legs, particularly when I was walking for about 10-15 minutes. Now as the dosage has come down to what it is now, I have had a lot less of this, and for that matter other side effects.

I wouldn't know how your levels of Prograf have been quite erratic, although I can say if you religiously take your meds at the set times at the exact times that you are given, there should be no problem. My neoral doses are 8/8 everyday, although, I admit to sometimes doing 9/8-8.30, which wouldn't cause a major change in my levels, but a change nonetheless.

Hope this helps.
Steve
~I close my eyes, and This Is Yesterday~
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JMan
Posts: 3470
Joined: Fri Apr 23, 2004 10:21 am
Location: Lives in a slightly weird bit of Shropshire called Telford!

Post by JMan »

Tacrolimus (Prograf) and Cyclocsporin (Neoral) may be similar drugs (I've never been on Tac. one of the newer drugs so I don't know much about it.) but I believe that Tac is far more potent (requiring dosages in 1 - 3 mg whereas with Cyclosporin you'd be talking of 100's of mg???). I'm not sure how much bearing this has on Natalie's Q however. Best to ask a doc that one. I can only offer my own experience.

That said, the best thing I found to reduce side effects was to drink, drink, drink. I tend to try and keep a 500ml bottle of water with me at all times when out and keep talking drinks from it, and leave the breakfast table with a pint glass of fruit juice and water.. (thats 586 mls :D) which I try and drink before I go out.

That said I've never been given any advice regards taking tabs as long as they are 'roughly' the same time apart. They certainly didn't bother with the precision that some people seem to mention even in the ward. I take my meds after food, as Neoral based in a castor oil suspension /gel I believe. Tends to turn the stomach if empty. currently on 100mg/100mg of Cyclo (neoral).

Pain in the leg.. well could be a 'nicked' nerve.. I had twinges and odd skin sensations (my kidney is also very low down there) almost nestling above/in front of my hip. Not sure about the pain in the arms but most of these things ease off or become more manageable as time goes by.. The first 'year' is probably the most 'annoying' in terms of stuff changing.. working out the new challenges and just weaking to a point of stability..

HTH
Last edited by JMan on Wed Sep 15, 2004 1:06 pm, edited 1 time in total.
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SteveUK
Posts: 524
Joined: Fri Apr 23, 2004 10:50 am
Location: The Bourne that was made for Sitting

Post by SteveUK »

OK JMan - I made my own comment for Natalie to benefit on - no need to rip apart my opening sentence. I do not proclaim to be an expert on all things renal - just handing out the benefit of a personal experience - I'm not a doctor - a patient like yourself.

Sorry if this appears as brusque or abrasive, but I don't like to see my own comments brushed aside and I hope you don't feel uncomfortable with that.

Back to the subject. I'd like to ask a question.

Is Prograf monitored throughout having a transplant? Because as far as I know, my cyclosporin doses are not monitored anymore, would anyone know why at all?

Thanks,
Steve
~I close my eyes, and This Is Yesterday~
My Band myspace!
JMan
Posts: 3470
Joined: Fri Apr 23, 2004 10:21 am
Location: Lives in a slightly weird bit of Shropshire called Telford!

Post by JMan »

SteveUK wrote:OK JMan - I made my own comment for Natalie to benefit on - no need to rip apart my opening sentence. I do not proclaim to be an expert on all things renal - just handing out the benefit of a personal experience - I'm not a doctor - a patient like yourself.
Ditto
SteveUK wrote: Sorry if this appears as brusque or abrasive, but I don't like to see my own comments brushed aside and I hope you don't feel uncomfortable with that.
Not quite sure what you mean about brushed aside and sorry if you read it that way? Like you, I was answering Natalies post. If I come across as brusque or abrasive its usually because I'm tired and can't think straight (as was this am) I've edited the post now, hope it makes you feel better. I'm not uncomfortable, just think its a bit odd??
We don't want 'handbags at dawn now' do we :lol:
SteveUK wrote:Back to the subject. I'd like to ask a question.
Is Prograf monitored throughout having a transplant? Because as far as I know, my cyclosporin doses are not monitored anymore, would anyone know why at all?

Thanks,
Steve
You still get bloods done? Thats when it gets monitired I'd think? Unless your unit has a VERY different policy from anywhere else. Thats when mine are done anyways. Its all I can suggest:D
HTH
J (not a doc, thank god:D:D:D) :lol:
"Dialysis! What is this? The dark ages!"
L. 'Bones' McCoy, ST"
Read my blog:)
Live to Fly
Image
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Lorna
Posts: 510
Joined: Fri Apr 23, 2004 5:15 pm
Location: Aberdeenshire, Scotland

Post by Lorna »

Can't help much Steve, though my Tacrolimus (Prograf) level is checked at every clinic visit. I've not to take my tacrolimus until after bloods have been done that morning. My dose has remained the same for more than 2 years now, they never say what the tacrolimus level in my blood actually is, so I can only presume it remains pretty much the same all the time.

Lorna
xxx
SteveUK
Posts: 524
Joined: Fri Apr 23, 2004 10:50 am
Location: The Bourne that was made for Sitting

Post by SteveUK »

Certainly no handbags at dawn no hard feelings as well.

No - they don't seem to include the cyclosporin test on my blood form, all the time. I could assume, that they aren't that bothered seeing as I am such a low dose, but I was just referring to how Prograf seems to be tested more because the dosages are much smaller. I feel a bit cautious, but saying that I expect by my next appointment, I will have done away with cyclo altogether. Saying that, still a bit apprehensive that my immune system may react to there being no cyclo at all.

Oh well,
Steve
~I close my eyes, and This Is Yesterday~
My Band myspace!
Goldie
Posts: 14
Joined: Tue May 18, 2004 2:09 pm
Location: NY

Post by Goldie »

Hi Natalie,

I'm not that familier with it.. but here's something that I know Rachel was told at one point.

Some dr.'s say you should take it with food, some say without, some say 'it doesn't make a difference'. What DOES make a difference is that whatever way you choose, you're consistent about it.

Her dr. went as far as to tell her - "If you're gonna take your prograff with potatoes, take it with potatoes every day. If you want to take it with juice, make sure to take juice every day.".

With this medication, consistency is the key. So taking it exactly 12 hours apart, and with exactly the same food (or no food) that you do every day, should regulate things somewhat.

Taking it at 7 in the morning with breakfast, and at 7 in the evening without food - and then day 2 - 7am with a cup of coffee, and 7pm with dinner... well - that's INCONSISTENT. ANd WILL result in un-evenness and inconsistent absorbancy.

So for a week or so try taking it spaced apart by 12 hrs., and with the same kind of food, and see if that has any effect.

Good luck.. feel better.
johnsor
Posts: 69
Joined: Fri Apr 23, 2004 4:03 pm
Location: Northern ILLINOIS

Post by johnsor »

Natalie:
My first transplant required I use 2/2 per day. The second only 1/1 per day. Consistency when using is key, but I do believe prograf levels are a little more volatile in range than neoral over time. My level runs between 4- 5. High levels of FK definitely affect creatinine results and high levels over a long periods of time (yrs) will affect long term renal function. Hope things "settle down" for you soon.
nycpetit
Posts: 262
Joined: Fri Apr 23, 2004 11:00 pm
Location: Miami Beach

Thanks

Post by nycpetit »

Thanks everyone for your responses. I have always been very good about taking it at the same time, exactly 12 hours apart. Well, let's say there's never been more than 5-15 minutes one way or the other. And every time I go to the clinic, I end up taking it after nine am. because at times they have't taken my blood before 9:45 am. They don't seem to be concerned about it.

G, I do recall wondering why the books, and bottles say that Prograf and some of the other drugs should be taken with food, or not, or an hour later, or an hour before, etc. I have tried to always be relatively consistent with having had something small to eat whenever I take it. Never a large meal. And I tend to eat the same sorts of things, not high fat, or heavy ever really.

The arm pain i am sorry to say is still horrendous. I would be happy to find out I injured it somehow, but can't imagine how that would have happened. I am taking two Vicodin each day, more than I had to take after the transplant itself! It bothers me because here I am feeling otherwise ready to roll and then my arm hurts. It's like, Huh?

I do seem to have an overall pain. Although it's worse in the left arm. But the joints in my hands hurt, and it radiated down the back of my arms. After surgery I had some ankle, foot, and leg pain, which seems to be largely gone now.

The doctor mentioned serum sickness from the thymo which can happen to some people. Or that if I can't tolerate the Prograf, as some patients just can't, then i'd have to take steroids. Which I do NOT want to do.

Natalie
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