[samour]

Hi all,

Sarah has been on cellcept since March starting with low doses, taking on a empty stomach. Started, stopped started, all instructed by the Rheumie because she couldn't stop vomiting. The last 3 weeks its just been nausea not vomiting and we are at a 1000mg. dose.

I had call the Rheumie nurse, and she bumped up our appt. a week as I am little concerned about her symptoms.
Her reynauds is even more prevalent, nasal and mouth sores. Her hands hurt so much she finds it difficult to write at school, and daily headaches that are bad enough even she decided that she thinks she needs a CT. Her fatigue is relentless.

My question, all those symptoms had minimized with the chemo infusions times 7 months. The cellcept seem like it's not slowing her immune system I am worries we are going to go backwards.

How long does it take for cellcept to work?

If it is not working what next?

The poor girl has went through **** and back, she has been so positive since July 2007, but I think she is loosing spirit. Daily even the nausea is draining let alone all the other symptoms. She just wants to be a normal teen.

Hopefully someone can give us a little light at the end of this tunnel.

Sharon

Sarah:
SLE,Reynauds,APS, stoke,seizures, CNS Lupus hers affecting her brain.

 

[cmfinnis]

Gosh, I am sorry to hear that Sarah's not well on the cellcept. I took it from May 2005 until July 2007 and I didn't stop it because of side effects. The sickness etc for me wore off within a month of two but to get good effect I had to go up to 3000mg per day for about six months and then settled on my normal dose of 2000mg per day. My symptoms got better between flares, but I think my flares were actually worse than before I was on it (more intense). Overall I thought it was a pretty good drug and did help my lupus more than any other immunesupression (except iv steroids and I've never had cyclophsophamide).

I think if she's feeling worse on it, could you talk to her Rheumy? There are other drugs to try, and if that one doesn't suit her, perhaps another one could be tried. I'm just about to embark on ivig treatment - tomorrow infact - do you think you could ask about that?

I do hope she feels a bit better soon, this illness is so horrible, especially for one so young. I got ill at about late teens, diagnosed 25years, now 30 and so I have a bit of an insight into that. I do feel for her, I really do

Best wishes, and take care, all of you
Cathy x

 

[Jnp01]

Oh dear - the poor thing. The higher doses of cellcept made me sick as well so I'm now on Myfortic which is the same makeup as cellcept except with the enteric coating. The sickness is not there. When I've changed meds over the years the dr usually ups the prednisone until the new one kicks in. I've even had IV pred to help...however I don't have the issues that Sarah has. I hope it settles down soon & you get the meds sorted.

 

[samour]

Hi Cathy,

Maybe she needs to be patient then, or maybe go on a higher dose, I did read you could go up as high as 3000mg. I also hope the nausea lets up a little she already has lost about 30 lbs since all this has happened(she is quite petit). I plan to have all the info I can when we go in for the next appointment. The worse part is that we are slowly going to be transitioned to adult care in other hospitals as she is now 18 and to old for a childrens hospital.

I have a book that I write everthing into so I am always prepared, or write what the specialist says as it can be so overwhelming at times. Something to note if any newbies are reading.

My aunt is this week making her prom dress. It is a beautiful teal satin, long that criscrosses near her neck and has a low back with cross straps as well. She has the most darkest big brown eyes with long lashes, and dark short hair She had a try on yesterday and she looked stunning, it was definitly red carpet worthy. Life still does have some wonderful moments like seeing her look so beautiful in her dress.

Thanks for your help

Sharon

 

[samour]

Again thanks for any responses.

Sharon

It helps to hear from others who have experiences to share.

 

[Jirel]

When I upped my Cellcept dose it only took me about a week to start feeling better. But I have mild Lupus and I'm very sensitive to medications so I usually feel an effect at low dosages.

 

[Mysticred]

I can relate to this one, by the time my Rhuemy got me to 2000mg I was a mess, and like your Sarah I was not getting better. By the 2000 mg I was eating maybe once a day, my acid reflux was back full strength and I was talking like I had swollowed cut glass because of it.

We had great hopes the cellcept would work, simply because I needed a more kidney friendly drug for my lupus. Well cellcept may have been more kidney friendly but it was not friendly any other way.

I have been off the cellcept for almost a month now, my next drug of choice is Rituxan if my insurance company ever gives in and allows me to have it.

I hope Sarah gets a better answer to her meds than what I did. My prayers and hopes are with you and Sarah.

 

[samour]

Thanks Mysticred,

Yesterday, Sarah stayed home, she was just too sick. We are going to Sick Kids in Toronto next Wednesday. Hopefully they will decide what's next. The symptoms she had prior to chemo are slowly starting to return. I worry she is regressing back to where we were last July 2007.

I will take note of the medication you are on, write it in the "book", that goes with me to every appointment. Its just sooooo stressful to see her suffer, just not fair for a young girl.

Thank you all for the support,

Sharon

 

[lazylegs]

Hi Sharon,

Cell Cept took about 6 weeks to kick in for me. The doctor gave me prednisone to help until it did. I worked up to 3000 mgs. When the cns symptoms once again started to increase we added Rituxan to the mix.

It may be Sarah isn't on a high enough dosage yet. It could also be that Cell Cept isn't the drug for her. I hope the doctor can find a solution for Sarah soon.

Take care,
Lazylegs

 

[raggedyann1]

Hi Sharon,

I wonder if she could be prescribed a nausea medication? I have gastro-paresis and the 8 months before it was all figured out I lived with daily nausea. I can tell you that it is almost more miserable than the joint pain and the fatigue. The nausea medication is the same one she was probably given for after chemo at home. It is called Zofran/Ondansetron. The other suggestion is to get some ginger from the grocery store and make ginger tea.

Take care,
Karen

 

[samour]

Hi Lazylegs and raggedannel,

I am just on hold for the fellow from Rheumatology. Sarah is now stated she is having trouble talking,writing,speech repeating herself, vision seems foggy this afternoon. I am still on hold, it may be awhile. Like you said Lazylegs maybe her dose isn't strong enough, maybe we need to up her prednisone, she is on 20 mg, or maybe we need another medication on board

Raggedannel, she has been on ondrnasadone for nausea, ginger pills, gingerale, gravol the works. I think she is very sensitive to medication. She also takes losec 2 a day as well.

I will keep you updated at to what the fellow said.

Sharon

Good thoughts for Sarah

 

[Raglet]

can she get rituxan ? Cytoxan and everything else was pretty useless for my cns lupus, but rituxan has helped. It was a heck of a fight to get it though (18 months of fighting through medical committees - my rheumie was fab and really went into battle for me)

hang in there, that's all you can do

raglet

 

[jackiegraham7880]

I had a problem with cellcept when i first start taking it and so now i take all four of my prescribed pills at bedtime.