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talentx7
10-11-2010, 09:05 AM
I can't find any info here about myforic? Carter had a reaction to Cellcept ( of course he did, my poor baby reacts to everything) so the just gave me Myforic to try. They are starting him on 180 mg 2X a day. Dr. said this should have less GI side effects. Does anyone take this, or know anything about it?

elephant
10-11-2010, 09:45 AM
Myfortic is cellcept but it's not suppose to hurt the stomach so much. What kind of reaction did your son have?

lafounk2
10-11-2010, 10:18 AM
My son, Joshua (age 16) did not tolerate Myfortic at all. Symptoms started in Dec 09 and it wasn't until March or April this year that they figured out the cause was Myfortic. Terrible GI issues. Gagging, throwing up. Severe anemia. Josh switched over to Immuran and (knock on wood) is tolerating this drug very well. I know of one other child that couldn't tolerate Myfortic also. I think it varies depending on the person.

Sangye
10-11-2010, 10:52 AM
It's very hit-and-miss with Cellcept. It gave me diarrhea, but I could live with it. Some people get it so much worse, like Dee-- no way to stay on it in that case.

talentx7
10-11-2010, 12:43 PM
Carter got terriible diarrhea and stomach cramps immediately, with the starter dose of 250 mg 2x a day. He couldn't go to school because he spent the day in the bathroom doubled over. The switched him to the myforic because they think it will be easier on his tummy. Today was his first dose, and im keeping my fingers crossed. Is immuran the same type of drug, with less side effects?? I wonder if that might be a better choice??

Sangye
10-11-2010, 12:45 PM
I hope it goes well for him. Imuran is chemo-- much lower dose than cytoxan but still chemo. Like any of our drugs, the side effects really vary.

talentx7
10-11-2010, 12:48 PM
Sangye, Sorry im still learning...is myforic a chemo too?

Sangye
10-11-2010, 01:08 PM
No worries... Myfortic is not chemo. It's in the class of targeted therapies. It specifically targets the B cells (the WBCs that are associated with Wegs) and reduces their population.

Chemo drugs (ctx, methotrexate, imuran) are cytotoxic (cell-killing) and work by killing rapidly dividing cells like blood, hair, gonadal and some cells in the immune system.

Rituximab is a biologic agent-- a genetically-engineered antibody that selectively binds to B cells and destroys them.

DEE
10-11-2010, 03:56 PM
fingers crossed i changed from Cellcept to Imuran and things seem t o be better sh sh !
can understand what was said about reaction the stomach pain was worse than been in early stage of labour :ohmy:
when i first explian this to my wg consult he smiled and said he had never heard it described like that
still get slight diarahoea (sp) but not sure if Imran or Warfarin course it
was alittle disappointed that ive had to take the lower dose chemo route
but will accept it sooner or later.:unsure:

Jack
10-11-2010, 07:14 PM
I changed from Cellcept to Myfortic in an attempt to reduce the diarrhoea problems I was having, but very little changed. It is the same drug as Cellcept, but in a coated, slow release form that bypasses the stomach before it begins to dissolve. I've been taking it since it was first available for trial and it seems to have few other side effects.

talentx7
10-12-2010, 01:18 AM
Cater got up this morning complaining of stomach pain again. Could it be from cellcept still in his body, or now the myforic? But he has only had 2 pills? I don't know what to do , hes got to be able to take something?

Sangye
10-12-2010, 01:43 AM
When I was on Cellcept I had a bit of heartburn that was relieved by drinking aloe vera twice a day. It's very healing to the gut. Add 2 oz of aloe vera GEL to a glass of juice (diluted apple juice is good; OJ is too hard on the stomach) and whisk it to dissolve. Drink it twice a day. Aloe won't interfere with any of our meds. You can buy it in a health food store. The gel is cheaper and works better for this particular use.

freakyschizogirl
10-12-2010, 05:46 AM
Sangye i love your hollistic approach to wegs. Anything to cure dizzyness? Or a sore throat from the Pred??

Sangye
10-12-2010, 06:51 AM
LOL-- Dizziness can be caused by many different things and needs to be checked out. If there is no medical cause, I'd consider chiropractic and/or acupuncture.

I wonder if your sore throat is being caused by acid reflux. Are you on an acid-blocker with the pred? Otherwise I have no idea why pred would cause that. You might try a generic treatment for sore throat-- swallowing a teaspoon of honey a few times a day.

freakyschizogirl
10-12-2010, 06:55 AM
On an acid blocker now...wasnt for the first few days...and fingers crossed the throat hasnt been that bad today. Pred goes down to 30mg tomorrow. Had first dose of Methotrexate today. fun fun fun.

I had Labyrintits earlier this year so i'll keep an eye on the dizziness...its only fleeting but enough to disorientate.

elephant
10-12-2010, 07:00 AM
Freaky it takes about a week to really kick in the acid blocker, esp if you have some esophageal damage. Give it a few more days, my throat use to hurt when I stopped taking the acid blockers.

freakyschizogirl
10-12-2010, 07:18 AM
thanks elephant, will do!

Sangye
10-12-2010, 07:28 AM
If you have residual dizziness (or swooshiness) from labryinthitis, ask your docs to refer you to Vestibular physical therapy. It's very different from just balancing exercises that they might teach in regular PT. It can make the dizziness go away or at least diminish it.

JanW
10-12-2010, 09:05 AM
Are you doing mtx injectables, Freaky?

jola57
10-12-2010, 03:11 PM
Freaky, for me its a horrible heartburn - one from hell - that just would not go away. It took about 8 days for the acid blocker to work. After 4 years, I can sometimes go for 2 days without but I don't think that I could survive without my Nexium. Keep taking it and you will see a wonderful difference.

talentx7
10-13-2010, 02:45 PM
I don't have any health food stores aroung me, does GNC carry Aloe gel? Is there a specific brand I want to look for? I am also going to look for a vestibular PT ( for me, not Carter) I have suffered with balance problems for years and can't figure out anything that helps. Does insurance cover that?

Sangye
10-14-2010, 12:41 AM
You can get any brand of aloe gel--GNC will have it.

Do you have balance problems due to vertigo/ residual vertigo or just balance problems? If it's "just" balance problems, regular PT will help. Otherwise you need Vestibular PT. Insurance will cover it if you have the documentation you need. (Some don't require referrals to PT) If they require a doc's referral, I suggest you have an ENT or otologist write the letter. It's their specialty and they'll do it best.

Also, many balance problems are helped with chiropractic adjustments. Even people without balance problems notice their general balance improves after a treatment.