Myfortic vs Cellcept, and low platelet counts

Thumps · Post by **Thumps** » Fri Jun 12, 2009 7:38 am

Hiya

At the end of April the neph I saw mentioned he thought my MMF (CellCept) dose was too high (500mg 4 times a day), and got my level tested, but the guy I saw two weeks later didn't follow up on it and when I questioned it he told me they wouldn't drop the level cos as I had an unrelated tx it was too risky

I also said I was suffering terribly with gut problems as a result of it, so he gave me a prescription for Myfortic instead (720 twice a day)

.... which NONE of my local chemists could fill!

Then, yesterday when I went back again, and had the same conversation. The new doctor gave me another prescription to take to the hospital pharmacy, who did actually have it, so I started taking it yesterday lunchtime. I asked again about my mmf blood level, and when he checked it he immediately said it seemed to high at 7 - I asked what it should be and he said "we don't have a target but that's a high number"

Anyone else ever had their level tested? What did your nephs say?
Anyone else using Myfortic instead of CellCept? Any comments?

Also - I've been feeling really crappy the last week, tired and dizzy, like pre-transplant.

Then yesterday morning my transplanted kidney started to ache!

I was really worried, but the doc said they'd just wait for the blood results to come back.

I've just checked 'em on RPV and while my cret and urea, K, phosphate etc are all fine, my white blood cell, haemoglobin and platelet counts have all taken a big nose dive, so basically my blood is very poor for some reason. Is there anything I should be doing diet-wise to help with this? I started cycling to work a couple of times a week last week, could that have contributed?

Finally, how forceful can I be/should I be with the nephs in asking/doing something about these things? I've got another appointment next Wednesday (only 6 days from my last one), but the pain in my kidney is really freaking me out!

I've never had any rejection issues or anything since the op so I'm probably going mad unnecessarily, but as usual I figure any experiences I can draw on from you people would be helpful!

Yours in a bit of a tizzy

Thumps x

MandyV · Post by **MandyV** » Fri Jun 12, 2009 8:27 am

Thumps, I have never been on either drug so cannot offer advice, but my suggestion would be to be polite but firm in getting them to address your concerns. Perhaps request to see the same neph each time.

If you are in pain that is not normal so get hold of the unit (we have a rapid assessment unit we can contact, not sure of your process) and get them to look at you and investigate or explain why it is not necessary. I would do that this morning as you don't want to fret over the weekend.

Thumps · Post by **Thumps** » Fri Jun 12, 2009 10:19 am

Re: seeing the same neph each time - I've mentioned it before but just been told it's basically impossible cos they're not all here all the time.

Not unreasonable I suppose, but bloody irritating.

I know the team have some sort of clinical assessment meeting on a Friday so I'm gonna wait til this afternoon and see if I hear back from them re: the results; if I don't, I'll call them.

lizzyie · Post by **lizzyie** » Fri Jun 12, 2009 10:58 am

Hi Thumps, I am on Myfortic twice per day (360) and Tacro 8ml twice per day. I was on cellcept when I first had transplant (4 months ago) and had bad stomach problems - Myfortic seemed to sort that out. My HB has always been on the low side since taking it but it doesn't seem to worry them at the clinic. I seem to have lots of side effects but am taking so many other tablets - pred, BP tablets etc. not sure which one causes the problems. Hope this helps you a bit - any other questions you have just ask.
Lizzie

lizzyie · Post by **lizzyie** » Fri Jun 12, 2009 11:05 am

Thumps, Sorry forgot to give the ans. to your question!!! I have never had levels for Myfortic done, the only level they worry about at my clinic seems to be the Tacro level plus all the usual ones such as CR, HB calcium and so on, it was the same when I was on Cellcept and I was on that for 2 years.
Lizzie

Thumps · Post by **Thumps** » Fri Jun 12, 2009 2:07 pm

Thanks

my white count has suddenly dropped from 7 or 8 to 5 in the last two weeks, while at the same time my platelets have dropped from 200 to 148 and hg from 13 to 11.3, so it seems everything's kinda screwed up a little bit at once for some reason

and none of this explains why my tx kidney has been aching the last day or two.

Glad that some others are on the tacro/myfortic combo, as I was alarmed when I read in the literature that it was really recommended for use with Ciclo (I've no intention of going back onto that).

I'm going back to see the neph again on Wednesday next week, but might go in on Monday to get more blood tests done to see if the Myfortic has had any negative effects if I'm still feeling poorly, and also cos I'd like to have more bloods done *before* I see the doctor again rather than after!

I guess I'm just twitchy cos I'm meant to be going to Glastonbury in a couple of weeks (a real milestone since my tx!) and I'd hate to have to miss it! I'm camping backstage so clean toilets and showers will make it a do-able experience health-wise, hopefully!

squiggles · Post by **squiggles** » Fri Jun 12, 2009 10:07 pm

I was switched from cellcept to myfortic because it gave me the runs,i had the same issues with myfortic a couple of months later until my dose was lowered from 540mg to 360mg bd and seem to be doing alright so far.I also take 2mg tac bd along with pred and the usual bp and asprin.My myfortic level isnt checked that i know of,just the tac trough level which has to be between 4-8.Ive just had a look at my latest labs WBC=10.8,platelets 370 and HB 14.7.

tommc · Post by **tommc** » Sat Jun 13, 2009 12:22 pm

They also switched me from cellcept to myfortic becasue of dihorea (Spelling i know). They hav only een measuring my tarc levals not the myfortic ones as far as i know.

Tom