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crackers
06-18-2009, 05:07 AM
i'm on 500mg once a day for a week then 2x500 a day after that.pred is down to 10mg a day from 20 with weekly blood checks.fingers crossed everything goes as it should.
john.

Jack
06-18-2009, 05:27 AM
Hope the new meds suit you! :) It sounds very much like the sort of regime I was on for years with good results. What else are you taking? Anything for the stomach or blood pressure?

My only comment would be that a drop from 20 mg to 10 in one step is too fast, or has that taken some time?

crackers
06-18-2009, 06:19 AM
yes jack the drop from 20 to 10 was done over a few weeks.i'm on lisinopril for the blood pressure and omeprazole for the stomach.
john.

Luce
06-18-2009, 06:27 AM
Hey John

I started Cellcept today! I'm on 1500mg a day and 10mg pred - wonder why we have such a difference in dosage?

Not sure I'm too much of a fan at the moment, I've had a headache all day and an upset stomach. I'm sure this will calm down in a few days though, fingers crossed.

crackers
06-18-2009, 06:46 AM
hi luce.they tried me on cellcept in 2007 on 2000 a day but i ended up with pneumonia because of it.then the cancer came along and everything else went out the window.so i think this time she's taking a more gradual approach.even so i'm itching like a mad thing tonight,hope that passes quickly.
john.

Jack
06-18-2009, 06:54 AM
Itching?
Are you sure this is not an allergic reaction?

crackers
06-18-2009, 07:44 AM
it's in the long list of possible side effects.don't remember having it last time but hopefully it will pass.
john.

RCOSSIO
06-18-2009, 12:16 PM
Well I am a month on CellCept 6xdaily 500mg each pill...so far so good...no stomach issue

jola57
06-18-2009, 02:44 PM
I hope that good things come of cellcept for you all. Just wondering why cellcept and not metho or imuran? or didn't they work and this is next step.

pberggren1
06-18-2009, 06:15 PM
I think Cellcept is supposed to be the least toxic and have the least side effects.

crackers
06-18-2009, 06:28 PM
that's my understanding too phil.
john

Luce
06-18-2009, 10:39 PM
I was put on Imuran/Azathioprine after my first 12 week course of cyclo but it didn't work for me and I flared. In fact I flared so badly I needed another 12 weeks back on cyclo to get my ANCA right back down.
I think Imuran was given before anything else as it's probably the cheapest drug to try - that's the way the NHS tends to work.Methotrexate has never been mentioned to me, I was told after my flare the options were Mycophenolate (Cellcept) or Rituximab. So we've gone with Cellcept, fingers crossed eh?

Jack
06-19-2009, 12:05 AM
Nothing to do with the cost Luce. The established treatment regime (such as there is) moves from Cylophosphamide through Azathioprine to Cellcept. The exact drugs used and their names vary from country to country Each in turn is less effective at controlling the disease, but far less toxic.
I don't know if you have seen the original packaging for IV Cyclophosphamide. It is black and yellow with DANGER written on it! :eek:

crackers
06-19-2009, 02:16 AM
the itching went a step further this morning.i was sat on the chair with the little dog asleep next to me.my inner forearm was resting on her back and after about 5 minutes my arm started iching.when i looked it was covered in white lumps where it had been touching the dog.i've had dogs all my life and this particular dog 2 and a half years and i've never had an allergic reaction before.as it happened my wife was at the hospital this afternoon for a test so i called in to rheumotology and told them about this.their response was to get a book on side effects and said "well it doesn't say anything here about itching".i told them that it does on the leaflet that comes with the tablets so they consulted the book again and said "nope nothing here".they said i must be allergic to the dog so i told them what i posted above but they seemed unconvinced.anyway the outcome was to stop taking the cellcept for a few days,see if the itching stops and then start again.has anyone else had a similar experience?
john.

pberggren1
06-19-2009, 06:38 AM
I do get itchy sometimes on my face and neck. I don't know if it started when I started taking the Cellcept in January or not. There could be a link here. I don't get any lumps or rashes that I know of.

RCOSSIO
06-19-2009, 11:45 AM
That's what I have been told least toxic...and I believe "not sure" but Meth and Cyto are carcinogen, whereas Cellcept is not.

RCOSSIO
06-19-2009, 11:47 AM
no fairly good no itching

Geoff
06-23-2009, 05:36 AM
[quote=crackers;3292]hi luce.they tried me on cellcept in 2007 on 2000 a day but i ended up with pneumonia because of it.

Hi Crackers, Like you I am on Cellcept (MMF) for over a year now and at present am taking 4x500mg daily. Concerned to read about your pneumonia problem. What was the link with Cellcept? My other meds are Omaprazole for stomach protection, 15g pred and pill for blood pressure. Only problem at moment is bad sleep (which my doc says is down to the Cellcept)

Luce
06-23-2009, 05:49 AM
Hi Geoff

I always thought it was the pred that affected my sleep as I've suffered since being diagnosed, no matter whether I was on cyclophosphamide, azathioprine or Cellcept. I don't nicely come round from sleep any more, I wake up 3 or 4 times in the night and am instantly wide awake! Quick nip to the loo for a tinkle, a good half an hour staring at the ceiling and I'm back in the land of nod.

I'm also taking omeprazole and co-trimoxazole, an antibiotic to prevent PCP lug infection. Do you not take this one Geoff?

Geoff
06-23-2009, 06:33 AM
Hello Luce,

I guess you mean Lung infection and not something to do with my Lug Holes! Speaking of which my ears have been playing me up of late. No I dont take co-trimoxazole. When I was first admitted to hospital, the scan of my lungs was quite good. Not to say I shouldnt be taking a preventative medecine tho.... So many parts of the body to think about!.. Love your part of this country. My favourite place in the world is Durdle Door. Many happy childhood holidays in a caravan.

crackers
06-23-2009, 09:54 AM
geoff, to be honest i wasn't aware that the cellcept had caused the pneumonia until a couple of months ago when the subject of trying cellcept again came up.my rheumy asked why i had come of it previously.i said i think it was to do with some bleeding i experienced,she looked back through my records and said " no it was because of the pneumonia ".so i askedf her if the cellcept had caused that and she said yes.if you look at the list of possible side effects it is in there,along with the bloody itching for which by the way i bought myself some allergy tablets which have appeared to solve that problem.
john.

Geoff
06-24-2009, 02:48 AM
Good News Crackers with your allergy tablets. Its crazy how we all react differently to medicines. I guess the adage 'different strokes for different folks' rings true. I will be aware with regards to the pneumonia risk and raise it on my next hospital visit.

shazny
06-26-2009, 10:00 PM
Hi there i too am taking cellcept 4 x 500mg daily along with 10mg pred, 150mg efexor M.R antidepressants, lansoprazole, trinovum and ethinylestradiol. I was originally presecribed cyclo for a course of 6 over 12 weeks, probably because it had taken 6 years to diagnose. This however didn't work and ended up being 25 doses over the course of a year. I was then given azathioprine along with septrim which again didn't work more cyclo, then told methotrexate was not an option as i had liver damage?? from where? i don't drink or smoke!! anyway after yet a third course of cyclo which again didn't work i was given two rituximab infusions over a fortnight which again didn't work so am now on what i am told appears to be the last option cellcept which isn't exactly keeping it completely under control but the flare ups have reduced. Seems my body is just awkward me thinks lol.

Geoff
06-28-2009, 02:25 AM
Hi Shazny, I wish you all the best with Cellcept and I have to say that I have only had one minor flare in the past 14 months since my diagnosis. Reading your post, the one thing that eally caugfht my eye was the '6 years to diagnose'. I guess I have been very lucky in so far as it was about 4 months from the first 'serious' set of syptoms until I was diagnosed. Having said that, the more I read about MBF the more confused I get as it seems that all of us have such a wide variety of syptoms and resulting 'damage' all being treated by a wide selection of drugs!! I dont think its your body thats being awkward.....just this fliiping disease.

Doug
06-28-2009, 04:04 AM
Couldn't agree more. I walked around for 10 months before diagnosis, yet I haven't had any serious effects to speak of (peripheral neuralgia, right foot; a bit of same in hands, but that may be related to years of computer use at work). It would be difficult to define a "standard treatment", other than commonality of drugs and procedures used, yet even that varies from Weggie to Weggie, as you note.

jola57
06-30-2009, 04:37 PM
Agree with you Doug, but like in Josh's story it seems that a huge number of docs completely misdiagnose weggs. Coming from a medical family I am first to admit that I -immunologist, my hubby -anesthetist, and my friend family doc missed wegs and went for polymyalgia. But at least we were close. Mind at that time I was so far gone that I could hardly move. Still if it wasn't finaly for the 70 yr old neurologist who diagnosed vasculitis, even my rheumy was treating me fo poly.
There is a lesson in Josh's story for physicians, that persistant ear, nose "infections" should be tested for weggs.

Doug
07-01-2009, 02:59 AM
Yes, and Jolanta brings up the impossibility, sometimes, of a right diagnosis even when the people involved in Weggie issues are immunologists, like Jolanta. That's further reason for people with the initial symptoms- or more- remember to write down- or at least remember- what's happening to their bodies so they can relate those things to the doctors involved in diagnosis. They are trying to do the impossible of remembering every symptom and every convergence of symptoms and try to pinpoint just what you have! The more you can describe what's wrong with you, the better your chances of helping them come to the right diagnosis. :) (Doug apologises for pontificating so much, but he just ate some yummy banana muffins and is sugared up. Ha!)

Geoff
07-01-2009, 09:50 PM
So right Doug. Who would think of mentioning a nose bleed or ear ache in conjunction with joint pain etc. It pays to right it all down. I can remember seeing my 3rd consultant with my syptoms (fed up with being told I had a virus and that it would clear up) and the guy said "lets look at the bigger picture, perhaps its one thing causing all these problems". That was the first day on my step to recovery. (the more I read your 'post' and the 'yummy banana muffins' the hungrier I feel!- Do you do mail order or is it your own recipe?)

Doug
07-01-2009, 11:35 PM
I use a standard muffin recipe and add three mashed, ripe bananas to the batter. I use cinnamon, ginger, and ground cloves to spice it up, as well as vanilla. When I have shredded gorgettes (I think you call them that ~ zucchini here), I add three cups of that and vanilla. I'm a "add a bit of this, add some more of that" kind of baker, so amounts tends to be heavier than typical recipes, to compensate for some of the smell/taste loss due to Weggie medications. "If the batter smells good, it will taste good," is my standard. My brother, sister, neices great neices, and great nephew apparently thought them tasty, too, as they, the muffins, are history now! :) p.s. I added a cup and a half of mostly broken walnuts, but pecans are an even better choice. If I use pecans, I substitute dark molasses for part of the sugar. It's all "to taste" and my basicrecipe is so bland (no spice, nuts, or vanilla) that I can't imagine the farm wife I got it from actually made muffins that way. Umm. As you can tell, Prednisone is only part of my weight problem! Ha!

Jack
07-02-2009, 12:33 AM
Isn't there some sort of rule about not publishing recipes on a site where everyone takes steroids? If not, then there should be.
:D

Doug
07-02-2009, 01:19 AM
Point well taken! Andrew can amend the "no politics ~ no religion" dictate to include no recipes or provocative references to food ("yummy banana muffins...."). Even I could support that. Oh, and chocolate. People can go delirious imagining variations on that theme!:p

Luce
07-02-2009, 02:50 AM
Also you were nearly right with gorgettes, they're actually called courgettes but I can't stand the things and can't imagine what place they have in a muffin!

Your muffins are safe with me around, but did someone mention chocolate???

Doug
07-02-2009, 02:54 AM
They add moistness to the muffins so no one suspects he's eating the nasty things! I'm in deep enough: no chocolate.:) In a pinch, I add applesauce in the same proportion as the unnamed vegetable, and it probably is the better choice. Doesn't anyone have anything better to do today than avoid the thread theme of CellCept?

Doug
07-02-2009, 03:06 AM
YouTube - The Royal & National Anthems of Canada (http://www.youtube.com/watch?v=tnzQF7JCF0o)

Please let us not forget the importance of today in history. Happy Canada Day to you up north! In hono(u)r of this brilliant day, I added a link that should satisfy everyone on the forum!

Luce
07-02-2009, 03:38 AM
Bah CellCept, what's to discuss?!

Food is always far more preferable a discussion than medication, I'm afraid those purple pills and blue/orange capsules don't get me salivating quite as much as talk of sweet treats.

Happy Canada Day everyone!

crackers
07-02-2009, 05:47 AM
as the originator of this thread i reserve the right to change the direction of the theme away from sweet stuff(which i don't eat) to a more pressing personal dilemma.fish,chips and curry.the fat and calorific values are off the scale and it's definately a no no where cholesterol is concerned,but i miss it so much.also bacon and sausages.oh i'm drooling on the keyboard.got to go this is all getting too much.
john.

Doug
07-09-2009, 02:35 AM
as the originator of this thread i reserve the right to change the direction of the theme away from sweet stuff(which i don't eat) to a more pressing personal dilemma.fish,chips and curry.the fat and calorific values are off the scale and it's definately a no no where cholesterol is concerned,but i miss it so much.also bacon and sausages.oh i'm drooling on the keyboard.got to go this is all getting too much.
john.

John- Isn't it the UK where deep fried Snicker bars originated? I mean, every bad thing didn't originate in the dear, old USA, though we Americans like to think so! Our contribution is the corndog: fatty sausage on a stick, dipped in a cornmeal batter (perhaps made with beer- these tend to be secret recipes, batter recipes!), and deep fried in fat! The only way to top it calorically speaking is to eschew the mustard, and eat it with Heinz catsup! Fish and chips are better, if only because fish tend not to contribute to the fat: I like to think of f&c as "health food"! Ha!:)

crackers
07-09-2009, 04:49 AM
doug,you've convinced me.fish and chips is health food.i can now stand in the queue in the chippy with a clear conscience.:D
john.

jola57
07-09-2009, 09:03 AM
A belated thank you from a northern canuck. Here I am snacking on a chocolate covered vanilla icecream and I blame it on my son who had a wooden end of his icecream on his end and it got me thinking etc etc. It is a rare treat since I usualy don't eat chocolate that much anymore.

Terri
07-13-2009, 12:39 PM
I sure could go for some deep fried hot dogs or maybe......hmmmm
I think a banana muffin with a miniature snickers bar added to the center while it is hot.;)
This morning I had a boring bowl of oatmeal with fresh raspberries added to it.
My husband asked how I could stand to eat oatmeal every morning. I showed him the handful of pills I had to take and explained I would rather eat oatmeal in the morning then to take another pill. It seems to keep me "regular" if you know what I mean.:D

Sangye
07-13-2009, 12:56 PM
I'm having so much fun catching up on these posts. They're just a riot if you read a thread all the way through, you know? So glad John exerted his "Starter of the Thread" rights. The snickers in a hot banana muffin--hoooooly cow.

Doug
07-14-2009, 05:49 AM
A few walnuts or pecans, cinnamon, cardamom, ginger, ground cloves, a splash of vanilla, and a modest amount of brown sugar (unrefined/white/honey/whatever sweetener you wish, if you must have sweetness), some dried cherries or raisins ,and that oatmeal becomes unrecognizably good! Exact amounts are to taste, as are the spiuces. Nutmeg's good. The dried fruit add to the qualities desired. For hardcore folk, prunes (dried plums afterall!) can be added for greater efficacy. Ha!:)


July 18, 2009 NEWS UPDATE~ Blueberries were three pints for $5.00 (a very good price here!), so I've made blueberry pancakes and blueberry muffins. At the price, I loaded the muffins to the point they barely could hold any more blueberries. I must say they turned out very well, and those and a nice black coffee made part of breakfast today. (Apple juice and a banana finished the menu....)