Hey Rob,

They just put me back on cellcept as well, it didn't work the first go round but they think I wasn't taking enough and/or was taking it wrong (didn't realize it had to be taken on an empty stomach at first). For me it started in my mouth, throat, and head. And with each flare up while we tried to decrease the prednisone it eventually spread all over last flare up was the worst. I'm not saying it's going to spread everywhere for you though that's just what happened with me, it's a hard battle but you can do it!

Another thing you'll have to deal with is the exhaustion, it's gotten a bit better now that they've started me on vitamins but I'm still constantly exhausted plus insomnia seems to be a side effect of the medicine so that doesn't help much, at the moment though I'm stabilized and on 4000 mg cellcept and 80 mg prednisone and haven't had a flare up in a while now, slowly lowering the predinose by 10 mg. I've had pemphigus for 9 months now and more then ready to get rid of it but I'm glad to be stable at the moment. If there's any way I can help let me know.

Hello Becstorm,

Thanks for the reply. I hope this time around with Cellcept will work for you.

I know what you mean by the exhaustion and insomnia, I have had both, but lately I seem to be having more engergy and shorter periods of exhaustion and I have been sleeping a little better.

I'm hoping that I started treatment early enough so that it will not spread. I have my good days and bad days with my throat and mouth, but I think overall it's getting better and not worse.

Since I've been on Cellcept, I don't eat anything at least 2 hours before and at least one hour after taking it.

You are on a pretty high dosage of Cellcept at 4000mg. When I was on 2000mg I felt more exhausted and couldn't sleep. So I can imagine that it is having a pretty bad effect on you. I bet you will start to feel much better when they can back you down to 1500mg or less.

But when I backed off from 2000mg to 1000mg, I started to get worse, so don't back off too quickly. I'm currently on 1500mg, and that seems like the right dosage for me at this time.

Again, thanks for the reply. I hope you continue to get better and please keep me up-to-date on any changes. And let me know if I can be of any help to you as well.

I think this site is great and it helps to talk to others with this condition. I look forward to the day we all are free of these flare ups and feeling much better.

Take care and I'll be posting more and please do the same.

Rob

Hey Rob,

It seems to be working now so far so good. I only noticed one tiny new blister on my arm, we are working on lowering it very very slowly since I'm still recovering from the last bad flare up. Glad to hear at least I'll be able to sleep better when it goes lower. It's been making me a bit grouchy I think! I'll post as much as I can, recently just started back to college and it's taking what little energy I have.

Still doing good overall though, I just think I caught something again as usual, it's hard having having a lowered immune system but what can we do? So now a sore throat on top of everything else. I hope you feel better as well.

And yes, this site is very helpful! Most of the time people don't even know what the heck you're talking about when you say pemphigus and it's hard to explain sometimes it's good to know that their are others out there fighting it in their day to day lives too and that there's still hope.

God bless and you take care too!

Rob,

You have mentioned you get steroid shots every other week. I assume you are taking it through IV (drips). What is the doasage and does that mean you are not taking any steroids orally.

My derm is planning to put me on 3 days a month 100 mg steroid through IV. I am currently taking 60 mg/day steroid. I was given Cyclophospemide 100 but that is hampering my liver function so we are considering alternatives inclusdinc cellcept.

In the meanwhile I cought Pneumonia last week so curently on antibiotics for that.

Like you I had Pemph only in the mouth but even after starting the treatment it spread to the otther areas. Now I have it on chect, scalp and back. Those on scalp are really worst. I do not know how to deal with them and reduce the irritation. Very troubling and frustrating. Wish my derm had started me with higher dosage. He intially put me on 30 mg/day which has been increasd to 60 mg but I think the infactions and all had added to the problems.

I am meeting my derm thjis week and hope my pneomonia will come under control by then. Keeping my fingers crossed.

Hope you get bettr soon.

I am taking 3000 mg of cellcept. I am on 20 mg of prednisone. I hate how the the prednisone makes me look. I now have a round face. I am much better at 3000 mg. I was on 1500 mg with no results. My blisters are just in the mouth and seem to be getting much better. I get very very very tired. I also have night I go without sleep and days I can't get enough because I have been up for days. Heres is another thing. My short term memory is being affected. I don't know if anyone else is having problems with the short term memory.

yeah Vicki, I feel your pain on the sleeping thing. The only way I get a full nights sleep without waking up is when I finally pass out from exhaustion. I try and keep myself busy and the vitamins and things help a bit to keep me awake during the day it's hard though and I'm worried with finals coming up. But I'm glad the pemphigus is under control. Hope you all get to feeling better soon. The rounded face does take some getting used to, but they say it should go away the lower you get on prednisone or when you come off it completely so no worries. It has so many side effects, I'm constantly surprised by all the things it causes.

My doctor want me now to get chemo treatment and take me off of everything. I think another month I will be getting the chemo Rutaxin.

Hi Rob,

I haven't looked at the daily strength website for a while so I only just saw your letter. I hope the follwing comments are of assistance.

My pemphigoid sounds identical to your however it was diagnosed as Mucus Membrane Pemphigoid or Pemphigoid Cicatrical. The latter is what it is called when it goes into your throat. My understanding of Pem Vulgaris is that it is essentially an external form of pemphigoid, that is outside the mouth. My understanding od it is that it requires a specimen to be taken and examined by a pathologist.

One of the things I have noticed is that it is very much a sub specialty of dermatology, very few dermatologists have a good understanding of it. I have been very lucky because I have 'collected' a couple of highly skilled professors to trear my condition.

The first thing I would seek is an eye examination by an opthomolgist as pemphigoid can develop an"occular involvement" which can cause scaring of the cornea.

I have, as I think all pem suffers do, been ob varying doses of Cortisone, which has some short term benefits but also has a wide variety of side effects. I gave also been on cyclophosmidine before going onto Dapsone - another common treatment of pemphigoid.

I have also just begun a IV course in Mabthera - a drug normally used to treat Non-hodginkinsons lymphona. Apparently in rare cases the medical profession are trying this out and if you are interested I will let you know how it went. (it's an immuno-suppressant)

In general, try and keep your spirits up. It can be a very frustrating condition as it seems, in my case anyway, to vary from day to day. You can have some good days and some bad days.

Let me know how you are progressing, if I can assist in any way it I would be delighted to do so.

Cheers

Phil

Hallo Rob,
As regars Cellcept I am doing it at a dosage of 2000mgs./day associated to prednisone.I suffer of p.v.for almost 14 years.As the situation at the moment was sevear,involving all the mucosa and the skin,I was hospitalized on 300mgs.of prednisone together with azatriopine.In fact some 20 days later all the lesions subsided.However Igot a severe complication-a sepsis due to an abcess.Inever succeeded keeping cortisona.Ihave had remissons frequenly.Generally the first target is the mouth mucosa.A year back I started with Cellcept 2000mgs.day.At the moment I am with 25 mgs.prednisona,due to reactivation of P.V. It is resulting. Seven months back I sufferd another complication-Pulmonary Tuberculosis.Did 6 months treatment and have to take 1 tablet of Isoniazide(antibiotic for tuberculosis)during the time I take immunodepressors as a prophilctic measure.I now suffer of side effects :sevear tinnitus and some dizziness,blurred vision lacrimation(i wass already operated of catarret resulted of cortisona,insonia despite 3 tipes of sleeping pills,I sleep some 4 to 5 hours,weekness with muscle atrofy,sevear osteoporosis.I Thank for the information on Cellcept ingestion i. e. 2 hrs.after meals.I have done it with the meals.I HOPE TO RECEAVE NEWS FROM THE GROUP.My regars to all the P.V.family.thanks ROB.

After my letter,which was more a clinical report of my illness just to show the treatment I did,and the possible complications that can appear,I would like to put the following questions:firsly I would like to say thet I am doing well with cellcept,but consider the prednisone is the commanding fector.I was to do i.v.immunoglobulin,to avoide cortisona.However my pulmonary situation did not permit it.Another question:INSONIA-how you ressolve it?I tate loranzepan2.5mgs.But as it no longer resulted I added(I mean the DOC.)MELATONINE together with Trazodone.EVEN SO I sleep some 4 hrs.Second question:BLURRED VISION.I didnt find this complication mantioned.Most probably it is a later situation as in my case. Till later.RUI(RSS)
ng

Hey Rob,
After answering twice,I realized that I was not fair.After all I only gave mad news insted of good ones.I really apologise fof that.Till the next.Bye-Bye.

I was taking off of cellcept. I had short term memory problems, yes vision was not good, and started to have a problem with walking. I am now on imuran. Any thoughts on this.

vicky,as I said previously I did IMURAM for 11 years.As the recurrecies were frequent I was swiched to cell_cept.I HAVE NO COMPLAINTS on it
.I alweys associate it with PREDNISONE,which go reducing graually.I am now with 20mgs.Pred.and 2000 of Cellcept.I am cured from my tuberculosis with 6 mts. treatment.Thank GOD.However I have vision prob lems and weakness.Hope you good luck.

My dad was diagnosed with pv of the mouth a year ago. We have had a hard time finding doctors that have ever treated someone with this disease. Finally we found one willing to give him cellcept. He is due to begin this at the end of the month. Since I read the date of your post as 2009, I wondered if you had success with this med??? He also has begun having blisters on his back , nostrils and eyes. Please any info you can share would be a great help. He has lost over 80 pounds due to the lesions in his mouth. I love my dad and will do anything that can help him.

Thank you!!!!

Sandy