[erinhermes]

Hello all! Spoke with Dr. I and he feels that the Cellcept just isn't working anymore so my last option is Cyclosporene - any thoughts?

My Gram was on it after her heart transplant and to my recollection it was a BEAR - anyone else on it? How do you feel?

Love,
Erin

[Pat 110]

Hey Erin,

I don't take it, but I do recall others posting about it. I'm sure they will have some info on it. Sorry to hear the cellcept isn't working any longer. How are you doing on the 20mg pred? Take care and feel better.

Big Hugs,
Pat

[Joanmarie63]

Erin,

I am sure I must have asked this before but my brain fog is getting worse. Do you think you may be going into remission? Maybe taking to much meds? Have you spoken to your Dr and asked him about it?

I mean thats how I knew I was going into remission, because the MG was getting worse so I was weaned off the meds and bam, that was the problem, to much meds.

[erinhermes]

Hey hon! How are you feeling today? Actually, I have been feeling a bit "sassy" as of late - other than it being "that time" for me! LOL!

The Neurotin has been GREAT for my pain, but it males me really sleepy, so I have been sleeping a lot , but that's OK by me!

We HAVE talked about remission ad neaseum and he DOES believe it is in the cards for me - though maybe not the full blown, no meds remission that others achieve.....fine by me! I'll be happy taking 20 mgs of pred as long as I can feel a bit more like my old self.

Love,
ERin

Originally Posted by Joanmarie63

Erin,

I am sure I must have asked this before but my brain fog is getting worse. Do you think you may be going into remission? Maybe taking to much meds? Have you spoken to your Dr and asked him about it?

I mean thats how I knew I was going into remission, because the MG was getting worse so I was weaned off the meds and bam, that was the problem, to much meds.

[JCPA]

Hey Erin,

Glad to hear you are better....How long have you been on the CellCept?

JJ

[erinhermes]

Hi sweetie! How are you today? Yep, I'm still on 20 mgs of pred and have had some really great days! LOL! I go in for my IV IG on Thursday - yippee!

It DOES stink that the cellcept isn't doing it's thing any longer but when I see Dr. I on Friday I'm going to ask him if I can start cyclosporine and see how that goes - after all, it worked for my Gram!

Can't wait from you!
Love,
Erin

Originally Posted by Pat 110

Hey Erin,

I don't take it, but I do recall others posting about it. I'm sure they will have some info on it. Sorry to hear the cellcept isn't working any longer. How are you doing on the 20mg pred? Take care and feel better.

Big Hugs,
Pat

[erinhermes]

Hey honey! How are you? Are you feeling better?

I've been on cellcept for many months now.......tried the imuran but it caused horrible peeling of my feet and hands.....now I think it is time for cyclosporine..,.we'll see how it goes!

Love,
Erin

I've been on the cellcept

Originally Posted by JCPA

Hey Erin,

Glad to hear you are better....How long have you been on the CellCept?

JJ

[Pat 110]

Erin, I'm so glad you get your IVIG on Thurs! I know that always makes you feel better. I hope this new med will work for you. I'm doing pretty good. A little weaker and more tired than usual. I think maybe it's the beta blocker. I hope after I have the nuclear stress test on the 22nd, I can stop taking it. My bp is fine when I take it at home and I think it was elevated because I was in the ER and hospital! I'll keep you posted. Take care.

Big Hugs,
Pat

[Maxwell'sMom]

Hi Erin, I'm on CycloSporine. Cellcept worked great for me, but it started to shut down my kidneys. And then they thought maybe the CycloSporine was doing it as well, so I was lowered to 300mg daily. I was on 400mg daily. Two in the morning, and then two at night.
I've not had too many side effects from it. Other than mild nausea.
The brand name of it makes a difference too. Mine is actual CycloSporine, and I don't have any bottles on hand at the moment to read the company info for you.
Some cyclosporines can cause a person to have a certain smell to them when they sweat, I'm so thankful, mine does not do that. But have heard from some, that theirs does do that to them.
If you have any questions at all, please feel free to ask away.
Love Lizzie
P.S. While taking Cyclosporine, of any brand, you CANNOT eat any grapefruits, or juice with grapefruit. It can become very dangerous. It causess the med to concentrate in the blood, which can be life threatening.

[erinhermes]

Hi sweetheart! How are you? I have been dragging TAIL since my pred has been reduced - miss my energy, but it will get better!

I am @ 100 mgs for this week - I go up to 200 next week......still a little leery of this med - guess cuz' my Gram had such a hard time, but that was due to the heart transplant......

I was so glad to see you were on...how are you? Are you OK?

Love,
Erin

Originally Posted by Maxwell'sMom

Hi Erin, I'm on CycloSporine. Cellcept worked great for me, but it started to shut down my kidneys. And then they thought maybe the CycloSporine was doing it as well, so I was lowered to 300mg daily. I was on 400mg daily. Two in the morning, and then two at night.
I've not had too many side effects from it. Other than mild nausea.
The brand name of it makes a difference too. Mine is actual CycloSporine, and I don't have any bottles on hand at the moment to read the company info for you.
Some cyclosporines can cause a person to have a certain smell to them when they sweat, I'm so thankful, mine does not do that. But have heard from some, that theirs does do that to them.
If you have any questions at all, please feel free to ask away.
Love Lizzie
P.S. While taking Cyclosporine, of any brand, you CANNOT eat any grapefruits, or juice with grapefruit. It can become very dangerous. It causess the med to concentrate in the blood, which can be life threatening.