The Team Tibbs Results are in...

[Tibbs]

Had a call today - I need to reduce my dose of MMF to 250mg twice a day down from 500mg. I forgot to ask why but I'm guessing thinner person fewer meds!

This'll mean I have bloods to do for the next few weeks until my new baseline is sorted.

Such a shame as I have boxes of 500mg tabs in the cupboard as I just got a delivery. You can't split them to use them either because of the coating.

Hopefully this will give me some leverage about my Pred levels as well - a smaller appetite would definitely help my weight loss!

[Tibbs]

More surgery for me!

Not so serious this time - turns out my ingrown toenail (oh yes!) needs some surgery to fix. I think they could have done it in the medical centre if it weren't for my interesting medical history.

[Dixie1]

Eeek! They are not taking your nail off completely are they??

[Tibbs]

I don't think so, just a bit down the side so it doesn't jab back into the skin.

[sanela]

How weird is that…I've been having a similar problem lately but mine started from an injury exactly a year ago when I lost the nail. It grew back lovely and healthy but on one side it's pushing into the flesh more than it should. I think I might end up having the same procedure if it gets worse.
I suppose your GP arranged for it?

[Tibbs]

How weird is that…I've been having a similar problem lately but mine started from an injury exactly a year ago when I lost the nail. It grew back lovely and healthy but on one side it's pushing into the flesh more than it should. I think I might end up having the same procedure if it gets worse.
I suppose your GP arranged for it?

Yes, though I mentioned it in clinic last week that I had it and that I was seeing podiatry.

They were fine with it all going through my GP.

[rheaybou]

Had a call today - I need to reduce my dose of MMF to 250mg twice a day down from 500mg. I forgot to ask why but I'm guessing thinner person fewer meds!

This'll mean I have bloods to do for the next few weeks until my new baseline is sorted.

Such a shame as I have boxes of 500mg tabs in the cupboard as I just got a delivery. You can't split them to use them either because of the coating.

Hopefully this will give me some leverage about my Pred levels as well - a smaller appetite would definitely help my weight loss!

I just can't understand how unopened stock/meds can't be returned and reused, the waste is criminal!

The renal unit at Sheffield no longer supplies 500mg capsules of MMF, so I have lots of 250mg boxes to make my 500mg dose.....shame we cant do a trade to save the waste.

[Tibbs]

Had a call today - I need to reduce my dose of MMF to 250mg twice a day down from 500mg. I forgot to ask why but I'm guessing thinner person fewer meds!

This'll mean I have bloods to do for the next few weeks until my new baseline is sorted.

Such a shame as I have boxes of 500mg tabs in the cupboard as I just got a delivery. You can't split them to use them either because of the coating.

Hopefully this will give me some leverage about my Pred levels as well - a smaller appetite would definitely help my weight loss!

I just can't understand how unopened stock/meds can't be returned and reused, the waste is criminal!

The renal unit at Sheffield no longer supplies 500mg capsules of MMF, so I have lots of 250mg boxes to make my 500mg dose.....shame we cant do a trade to save the waste.

I spoke to our lovely renal Pharmacist about the 500mg tablets and she said to keep them as I may go back up in the future. The change was all about the different levels in my blood. Interestingly, we got talking about different levels of Tacro people take, and it's often not related to size or gender, though people of Afro-Caribbean descent often need to take more. I'm on a lot at 10mg twice a day, but that's a relatively normal amount for Afro-Caribbean people who can be on doses up to 16/17mg twice a day!

Interestingly, when I asked my I couldn't split the tabs I had, she said it wasn't about the coating, but more about the difficulty of breaking the tablets exactly in half to get the same dose all the time. She also said that there was a risk from other people breathing in the dust that you get from splitting them and becoming accidentally immunosuppresd. Even she said that this was a theoretical risk at best!

[Tibbs]

I got a phonecall last week to see if I could come to clinic the next day. Odd, but not unusual.

Except this was for the Royal Free, a hospital I'd never even been to! It was for dermatology, which I must confess I'd been a bit lax in keeping up with since I moved into London. I assumed it was for my venous insufficiency - the socks (I refuse to call them stockings - stockings are for the weekend, or that special third date! ) that I'd been given a couple of years ago still seemed to be working so I hadn't really worried about it.

It wasn't that at all - apparently they were looking at my ingrown toenail, which I thought was more a podiatry or orthopaedic thing, but there you go.

They took the opportunity to give me a full body check for skin cancer, and give me some foot cream for my athlete's foot, some sun cream (who knew you could get THAT prescribed on the NHS!) and another appointment for some new socks. They also referred me back to podiatry to have my toe sorted there. Looks like they might be removing a sliver of nail (or all of it) as there's a curl and I need to avoid the infections which have been plaguing me for the last year or so. The dermatologist also referred me to their transplant dermatology clinic in 6 months' time for another checkup, which is great. I had no idea that clinic even existed!

Back to being a 3 hospital person again - at least this one is just a short train ride away.

[Tibbs]

Well, I've managed to go quite a while without a fuckup (occasional missed meds aside) and yesterday I had a doozy!

Having a bit of a time of it at work at the moment, and upon finishing a fairly stressful meeting at 11, I thought, hmm, have I taken my 10am tabs? Couldn't find my med box and so I thought I'd left them at home (again) and went to my trusty backups. 10 minutes later I moved some crap on my desk and there was my pill box, minus my 10am tabs!

So I took 2 lots of anti-rejection drugs - oops...

Quick call to the hospital and the vedict was no evening drugs and a trip to RAU this morning. Result was my creatinine was up a bit, but still within range, and they're looking at my fk profile later on. No call means all ok.

So a near miss, and I'm rather surprised this is the first time I've done it tbh.

Must think of a way so this doesn't happen again...

Proper clinic on Thursday next week, so a bollocking incoming I'm sure!

[AmandaClare]

I don't know how many times I've done that... I mean I really don't know. Sometimes I forget whether or not I've taken my meds, then spend ages trying to remember, looking for evidence in the bin etc. Then the debate of whether it's better to take them twice or not at all.

I use a meds pot these days so it hasn't happened recently.

[Tibbs]

I would be utterly screwed without my medicine boxes.

I was originally given a medimax box by Hamnmersmith when I had my transplant



Which was great but a bit too big, especially since I don't need to take pills 4 times a day.

I wound up buying a couple of the medidos boxes



which are smaller but have removable compartments so I can just have 3 compartments. My tabs just fit in, and they're really easy to carry around. Downside is, they're easy to lose on my desk...

[rheaybou]

I have gone through about 5 of the 7 day pill wallets over the last two and a half years. Easy to lose at work, in the car and around the house.

I also made a mistake today, taking this mornings tablets last night and my evening meds this morning. Called up and was just advised to return to normal tomorrow - taking an additional 5mg pred this morning - luckily my anti rejection meds only differ between 5mg pred in the am.

[Tibbs]

I've been back at hospital a bit more than usual over the past month or so since my cretinine has been higher than normal since June.

They've been monitoring my Tacro levels, which have fallen from over 5 to 3.5 in the at time. The result is that my Tacro has gone up to 11mg twice a day.

Hopefully that will sort it, and I'm back at clinic in a month to see if it's worked!

I'm also off to Mexico at the end of the week, which I'm VERY excited about...

[rheaybou]

Not sure what doese you are on but it shows that the rate of absorbtion is variable. Do they have any idea why your TAC level has dropped to a point where you are on increased dose.