started on cellcept today.

[crackers]

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]

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]

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]

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]

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]

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]

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]

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]

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]

Isn't there some sort of rule about not publishing recipes on a site where everyone takes steroids? If not, then there should be.