Re: Immunosuppression options....

[Guest guest]

You can take the Mtx as an injection. I know many have done that, in part to bypass the liver. Has your doc mentioned that as an option?

Ramblin' RoseModerator

"How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these."

~ Washington Carver

> To: Neurosarcoidosis > Date: Fri, 18 Jun 2010 08:18:18 +0000> Subject: Immunosuppression options....> > I saw my opthal and neuro yesterday. My opthal said the cellcept is just not helping my eyes enough and given the nausea and vomiting I would be best to stop. He gave me steroid injections under both eyes and said I had three options: 1. have steroid injections every 6 - 8 weeks, 2. have an infusion of methylpred every 6 - 8 weeks, 3. try another immunosuppression.> > My neuro was keen to try 2. or 3. because he is worried about the sarcoid in my chest (he manages it because he found it! and it's one less doctor to see). > > I have tried Methotrexate - which I vomited up immediately on taking it. So stopped early. Imuran I was on for nearly a year but again it didn't help my eyes enough and my neuro symptoms were still pretty strong. and Cellcept. Lasted 7 months but then the nausea and vomiting became too much. I don't have a great stomach.> > I would like to know what immunosuppresants others have been on, what side effects and has it helped, especially if you have ocular sarcoid.> > Thanks> Rach> > > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > > > Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages> > Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database > >

[Guest guest]

Hi Rach, I'm on Methotrexate, I have an iron stomach, and Plaquanil, and have Remicade infusions every 5 weeks, and I am doing better with the Neuro symptoms, I've been told my eyes are fine, but my vision will get really blurry when I get tired, and they don't tear, but get wet if that makes sense.  I say the Remicade has helped me the most, but my doctor took me off Methotrexate,  and I stopped getting better, even a little worse, so he put me back on it, then tried taking me off the Plaquanil, and my skin went crazy and I got worse, so he put me back on it.  So I do best when I am on all 3 of the drugs, not just one.

When I'm really not doing well I get an IV infusion of Solumedrol for 3 days, and that is a great booster, really helps me out. In fact I talked to my doc about getting them when I have something big to do, so I don't have to be wore out play catch up.  Hope this helps. 

Blessings, Marla

 

I saw my opthal and neuro yesterday. My opthal said the cellcept is just not helping my eyes enough and given the nausea and vomiting I would be best to stop. He gave me steroid injections under both eyes and said I had three options: 1. have steroid injections every 6 - 8 weeks, 2. have an infusion of methylpred every 6 - 8 weeks, 3. try another immunosuppression.

My neuro was keen to try 2. or 3. because he is worried about the sarcoid in my chest (he manages it because he found it! and it's one less doctor to see).

I have tried Methotrexate - which I vomited up immediately on taking it. So stopped early. Imuran I was on for nearly a year but again it didn't help my eyes enough and my neuro symptoms were still pretty strong. and Cellcept. Lasted 7 months but then the nausea and vomiting became too much. I don't have a great stomach.

I would like to know what immunosuppresants others have been on, what side effects and has it helped, especially if you have ocular sarcoid.

Thanks

Rach

[Guest guest]

jenny is on cellcept now. She had the nausea issues so the neurologist decreased the dose until her body adjusted and now she is doing ok with it. The cellcept seems to be helping us. Be wellMattSubject: Immunosuppression options....To: Neurosarcoidosis Date: Friday, June 18, 2010, 4:18 AM

I saw my opthal and neuro yesterday. My opthal said the cellcept is just not helping my eyes enough and given the nausea and vomiting I would be best to stop. He gave me steroid injections under both eyes and said I had three options: 1. have steroid injections every 6 - 8 weeks, 2. have an infusion of methylpred every 6 - 8 weeks, 3. try another immunosuppression.

My neuro was keen to try 2. or 3. because he is worried about the sarcoid in my chest (he manages it because he found it! and it's one less doctor to see).

I have tried Methotrexate - which I vomited up immediately on taking it. So stopped early. Imuran I was on for nearly a year but again it didn't help my eyes enough and my neuro symptoms were still pretty strong. and Cellcept. Lasted 7 months but then the nausea and vomiting became too much. I don't have a great stomach.

I would like to know what immunosuppresants others have been on, what side effects and has it helped, especially if you have ocular sarcoid.

Thanks

Rach