Guest guest Posted December 29, 2002 Report Share Posted December 29, 2002 Sandy, I know P was on cellcept and I think Kathy G is. I just wrote to Kathy and will see what she has to say and pass it on. Her son just had major surgery so I don't know when I'll hear, but am sure it will be soon. Everything I have heard about it is good. I am even considering asking my dr if she wants to change me from Plaquenil to Arava. I think the cellcept had the least side effects. ( but don't quote me) How are you doing? You know I think of you all the time. Did you and your family have a nice Christmas? How is doing. Know you are all in my prayers. hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2002 Report Share Posted December 30, 2002 Hi Everyone, I've been on CellCept since last February and haven't had any problems with it. My Doc said it was less toxic than Imuran and it seems to work better for me. He said nausea can be a problem with CellCept but I haven't experienced that. I do pay strict attention to the directions of taking it on an empty stomach (2 hours after eating and at least 1 hour before). I've been able to drop down to 4mg of pred - the lowest I've ever been. Hope this helps! Patty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2002 Report Share Posted December 30, 2002 Patty, what wonderful news about your pred. I have heard all "good" things about cellcept. So glad to hear from people first hand. So GOOD to hear from YOU!!! LOL I hope you had a great holiday season and a more wonderful New Year. Keep up the good work and give all the great Billingsly kids a hug from me. hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2002 Report Share Posted December 30, 2002 Patty, Thanks for the info. I hope it works for me too. I am happy to hear you are doing better. 4 mg. of Pred! I am jealous...LOL Sandy -- Re: Cellcept Hi Everyone,I've been on CellCept since last February and haven't had any problems with it. My Doc said it was less toxic than Imuran and it seems to work better for me. He said nausea can be a problem with CellCept but I haven't experienced that. I do pay strict attention to the directions of taking it on an empty stomach (2 hours after eating and at least 1 hour before). I've been able to drop down to 4mg of pred - the lowest I've ever been. Hope this helps!PattyDISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2010 Report Share Posted January 21, 2010 Beverley, I'm so glad you are seeing your PC in the morning. Please just try to stay quiet and rest tonight. I'll be thinking of you! Please let us know what the doc says. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Thu, January 21, 2010 10:45:38 PMSubject: CellCept I'm having more than tummy problems but I have that too. I can't sit up for very long. I've had chills for 2 days and I can barely eat anything. I have an appointment with my PC in the morning. When I was off pred my diabetes went away. Now I am back on 5mg. and I think it may be back. I was feeling good before these new meds. I was alright on 2 of the Cellcept pills a day. A lot of my pain even went away but Friday I doubled the dosage and now I am SO sick.Beverley Joy,71,PF, Chronic HP, birds and mold 1-09,Sjogren' s,Fibromyalgia Idaho I am so frustrated, I went for a 6min walk today at the hospital. When I got there to sign in they tried to tell me I was at the wrong place I said no I am supposed to be here. Finially she found my name but it was for PFT's, I said no I am having a 6min walk, she called somebody on the phone and got it straightened out. I sat down and I almost started crying there at the hospital. I am so tired of always having to fight for any kind of treatment I get. I have learned so much from this board, because of everyone here I know what I need, I just have to fight to get anythingIn June I started Pulmonary Rehab and I could finially prove to my Dr. that I needed 02. In July I started on 02, 2 lpm with exertion. I've known for a while that that wasn't enough. In Dec. I finially got an oximeter to check my sats. For the last couple weeks I have been checking my sats while walking, I need at least 5 lpm to keep my sats in the low 90s. So I called my Dr. to ask for the 6min walk test. They acted like I didn't know what I was talking about, but I insisted that I have one. So that is why I am here today. I am so tired of hveing to insist that I be given tests all the time. I think today was my breaking point. I would like to say the .... with all of the doctors, just give up on everything and sit home waiting to die. I just hate this disease, and the doctors that don't know anything.I'm sorry about this I guess I just needed to vent. I don't have anybody at home to talk.. I wish I lived closer to somebody so we could get together and talk. I feel so alone fighting this disease.Jo Ann 53 MI UIP 9/07 No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.725 / Virus Database: 270.14.143/2624 - Release Date: 01/15/10 04:47:00 No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.730 / Virus Database: 270.14.151/2633 - Release Date: 01/19/10 09:49:00 No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.730 / Virus Database: 270.14.151/2633 - Release Date: 01/19/10 09:49:00 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2010 Report Share Posted January 21, 2010 oh Bev please please take care of yourself Gascoigne SD, 50 yrs old, Renaud's 2008, IPF 7/2009To: Breathe-Support Sent: Thu, January 21, 2010 9:45:38 PMSubject: CellCept I'm having more than tummy problems but I have that too. I can't sit up for very long. I've had chills for 2 days and I can barely eat anything. I have an appointment with my PC in the morning. When I was off pred my diabetes went away. Now I am back on 5mg. and I think it may be back. I was feeling good before these new meds. I was alright on 2 of the Cellcept pills a day. A lot of my pain even went away but Friday I doubled the dosage and now I am SO sick.Beverley Joy,71,PF, Chronic HP, birds and mold 1-09,Sjogren' s,Fibromyalgia Idaho I am so frustrated, I went for a 6min walk today at the hospital. When I got there to sign in they tried to tell me I was at the wrong place I said no I am supposed to be here. Finially she found my name but it was for PFT's, I said no I am having a 6min walk, she called somebody on the phone and got it straightened out. I sat down and I almost started crying there at the hospital. I am so tired of always having to fight for any kind of treatment I get. I have learned so much from this board, because of everyone here I know what I need, I just have to fight to get anythingIn June I started Pulmonary Rehab and I could finially prove to my Dr. that I needed 02. In July I started on 02, 2 lpm with exertion. I've known for a while that that wasn't enough. In Dec. I finially got an oximeter to check my sats. For the last couple weeks I have been checking my sats while walking, I need at least 5 lpm to keep my sats in the low 90s. So I called my Dr. to ask for the 6min walk test. They acted like I didn't know what I was talking about, but I insisted that I have one. So that is why I am here today. I am so tired of hveing to insist that I be given tests all the time. I think today was my breaking point. I would like to say the .... with all of the doctors, just give up on everything and sit home waiting to die. I just hate this disease, and the doctors that don't know anything.I'm sorry about this I guess I just needed to vent. I don't have anybody at home to talk.. I wish I lived closer to somebody so we could get together and talk. I feel so alone fighting this disease.Jo Ann 53 MI UIP 9/07 No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.725 / Virus Database: 270.14.143/2624 - Release Date: 01/15/10 04:47:00 No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.730 / Virus Database: 270.14.151/2633 - Release Date: 01/19/10 09:49:00 No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.730 / Virus Database: 270.14.151/2633 - Release Date: 01/19/10 09:49:00 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2010 Report Share Posted January 21, 2010 BJ,How many mgs of Cellcept are you taking at a time? You say you were on 2 pills a day and then you doubled it. I was told the max Cellcept you can take is 3000 a day which is what I am on. Just checking to make sure you're not taking too much.Kathy ILD/Hypersensitivity pneumonitis 3/08 I am so frustrated, I went for a 6min walk today at the hospital. When I got there to sign in they tried to tell me I was at the wrong place I said no I am supposed to be here. Finially she found my name but it was for PFT's, I said no I am having a 6min walk, she called somebody on the phone and got it straightened out. I sat down and I almost started crying there at the hospital. I am so tired of always having to fight for any kind of treatment I get. I have learned so much from this board, because of everyone here I know what I need, I just have to fight to get anythingIn June I started Pulmonary Rehab and I could finially prove to my Dr. that I needed 02. In July I started on 02, 2 lpm with exertion. I've known for a while that that wasn't enough. In Dec. I finially got an oximeter to check my sats. For the last couple weeks I have been checking my sats while walking, I need at least 5 lpm to keep my sats in the low 90s. So I called my Dr. to ask for the 6min walk test. They acted like I didn't know what I was talking about, but I insisted that I have one. So that is why I am here today. I am so tired of hveing to insist that I be given tests all the time. I think today was my breaking point. I would like to say the .... with all of the doctors, just give up on everything and sit home waiting to die. I just hate this disease, and the doctors that don't know anything.I'm sorry about this I guess I just needed to vent. I don't have anybody at home to talk.. I wish I lived closer to somebody so we could get together and talk. I feel so alone fighting this disease.Jo Ann 53 MI UIP 9/07 No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.725 / Virus Database: 270.14.143/2624 - Release Date: 01/15/10 04:47:00 No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.730 / Virus Database: 270.14.151/2633 - Release Date: 01/19/10 09:49:00 No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.730 / Virus Database: 270.14.151/2633 - Release Date: 01/19/10 09:49:00 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2010 Report Share Posted January 21, 2010 Beverley, I am so sorry to hear that you are so sick, I'm glad you have a doctor's appointment tomorrow. Depending on what the doc says, if he thinks its related to the meds, you should contact Dr. Raghu's office and talk to one of his nurses. Did you double your meds by mistake? I did that once with prednisone, I forgot that I had already taken it, I was miserable but only for that day. Now I make sure all of my meds are in my pill box by the day. I have a separate pill box for am/pm meds. I hope you feel better soon! C_53_Familial IPF_5/09, Washington HOPE doesn't disappoint! To: Breathe-Support Sent: Thu, January 21, 2010 7:45:38 PMSubject: CellCept I'm having more than tummy problems but I have that too. I can't sit up for very long. I've had chills for 2 days and I can barely eat anything. I have an appointment with my PC in the morning. When I was off pred my diabetes went away. Now I am back on 5mg. and I think it may be back. I was feeling good before these new meds. I was alright on 2 of the Cellcept pills a day. A lot of my pain even went away but Friday I doubled the dosage and now I am SO sick.Beverley Joy,71,PF, Chronic HP, birds and mold 1-09,Sjogren' s,Fibromyalgia Idaho I am so frustrated, I went for a 6min walk today at the hospital. When I got there to sign in they tried to tell me I was at the wrong place I said no I am supposed to be here. Finially she found my name but it was for PFT's, I said no I am having a 6min walk, she called somebody on the phone and got it straightened out. I sat down and I almost started crying there at the hospital. I am so tired of always having to fight for any kind of treatment I get. I have learned so much from this board, because of everyone here I know what I need, I just have to fight to get anythingIn June I started Pulmonary Rehab and I could finially prove to my Dr. that I needed 02. In July I started on 02, 2 lpm with exertion. I've known for a while that that wasn't enough. In Dec. I finially got an oximeter to check my sats. For the last couple weeks I have been checking my sats while walking, I need at least 5 lpm to keep my sats in the low 90s. So I called my Dr. to ask for the 6min walk test. They acted like I didn't know what I was talking about, but I insisted that I have one. So that is why I am here today. I am so tired of hveing to insist that I be given tests all the time. I think today was my breaking point. I would like to say the .... with all of the doctors, just give up on everything and sit home waiting to die. I just hate this disease, and the doctors that don't know anything.I'm sorry about this I guess I just needed to vent. I don't have anybody at home to talk.. I wish I lived closer to somebody so we could get together and talk. I feel so alone fighting this disease.Jo Ann 53 MI UIP 9/07 No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.725 / Virus Database: 270.14.143/2624 - Release Date: 01/15/10 04:47:00 No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.730 / Virus Database: 270.14.151/2633 - Release Date: 01/19/10 09:49:00 No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.730 / Virus Database: 270.14.151/2633 - Release Date: 01/19/10 09:49:00 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2010 Report Share Posted January 22, 2010 beverley glad you called your doc and are going to see him Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: CellCeptTo: Breathe-Support Date: Thursday, January 21, 2010, 10:45 PM I'm having more than tummy problems but I have that too. I can't sit up for very long. I've had chills for 2 days and I can barely eat anything. I have an appointment with my PC in the morning. When I was off pred my diabetes went away. Now I am back on 5mg. and I think it may be back. I was feeling good before these new meds. I was alright on 2 of the Cellcept pills a day. A lot of my pain even went away but Friday I doubled the dosage and now I am SO sick.Beverley Joy,71,PF, Chronic HP, birds and mold 1-09,Sjogren' s,Fibromyalgia Idaho I am so frustrated, I went for a 6min walk today at the hospital. When I got there to sign in they tried to tell me I was at the wrong place I said no I am supposed to be here. Finially she found my name but it was for PFT's, I said no I am having a 6min walk, she called somebody on the phone and got it straightened out. I sat down and I almost started crying there at the hospital. I am so tired of always having to fight for any kind of treatment I get. I have learned so much from this board, because of everyone here I know what I need, I just have to fight to get anythingIn June I started Pulmonary Rehab and I could finially prove to my Dr. that I needed 02. In July I started on 02, 2 lpm with exertion. I've known for a while that that wasn't enough. In Dec. I finially got an oximeter to check my sats. For the last couple weeks I have been checking my sats while walking, I need at least 5 lpm to keep my sats in the low 90s. So I called my Dr. to ask for the 6min walk test. They acted like I didn't know what I was talking about, but I insisted that I have one. So that is why I am here today. I am so tired of hveing to insist that I be given tests all the time. I think today was my breaking point. I would like to say the .... with all of the doctors, just give up on everything and sit home waiting to die. I just hate this disease, and the doctors that don't know anything.I'm sorry about this I guess I just needed to vent. I don't have anybody at home to talk.. I wish I lived closer to somebody so we could get together and talk. I feel so alone fighting this disease.Jo Ann 53 MI UIP 9/07 No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.725 / Virus Database: 270.14.143/2624 - Release Date: 01/15/10 04:47:00 No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.730 / Virus Database: 270.14.151/2633 - Release Date: 01/19/10 09:49:00 No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.730 / Virus Database: 270.14.151/2633 - Release Date: 01/19/10 09:49:00 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2010 Report Share Posted January 22, 2010 cellcept for me started at a low dose, then in two weeks it was doubled to the goal dose the reverse of weaning off of a med -- don't know what the name is for the gradual increasing of a med to the desired dose Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: CellCeptTo: Breathe-Support Date: Thursday, January 21, 2010, 11:51 PM Beverley, I am so sorry to hear that you are so sick, I'm glad you have a doctor's appointment tomorrow. Depending on what the doc says, if he thinks its related to the meds, you should contact Dr. Raghu's office and talk to one of his nurses. Did you double your meds by mistake? I did that once with prednisone, I forgot that I had already taken it, I was miserable but only for that day. Now I make sure all of my meds are in my pill box by the day. I have a separate pill box for am/pm meds. I hope you feel better soon! C_53_Familial IPF_5/09, Washington HOPE doesn't disappoint! From: Beverley Joy <sparrow_98367@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Thu, January 21, 2010 7:45:38 PMSubject: CellCept I'm having more than tummy problems but I have that too. I can't sit up for very long. I've had chills for 2 days and I can barely eat anything. I have an appointment with my PC in the morning. When I was off pred my diabetes went away. Now I am back on 5mg. and I think it may be back. I was feeling good before these new meds. I was alright on 2 of the Cellcept pills a day. A lot of my pain even went away but Friday I doubled the dosage and now I am SO sick.Beverley Joy,71,PF, Chronic HP, birds and mold 1-09,Sjogren' s,Fibromyalgia Idaho I am so frustrated, I went for a 6min walk today at the hospital. When I got there to sign in they tried to tell me I was at the wrong place I said no I am supposed to be here. Finially she found my name but it was for PFT's, I said no I am having a 6min walk, she called somebody on the phone and got it straightened out. I sat down and I almost started crying there at the hospital. I am so tired of always having to fight for any kind of treatment I get. I have learned so much from this board, because of everyone here I know what I need, I just have to fight to get anythingIn June I started Pulmonary Rehab and I could finially prove to my Dr. that I needed 02. In July I started on 02, 2 lpm with exertion. I've known for a while that that wasn't enough. In Dec. I finially got an oximeter to check my sats. For the last couple weeks I have been checking my sats while walking, I need at least 5 lpm to keep my sats in the low 90s. So I called my Dr. to ask for the 6min walk test. They acted like I didn't know what I was talking about, but I insisted that I have one. So that is why I am here today. I am so tired of hveing to insist that I be given tests all the time. I think today was my breaking point. I would like to say the .... with all of the doctors, just give up on everything and sit home waiting to die. I just hate this disease, and the doctors that don't know anything.I'm sorry about this I guess I just needed to vent. I don't have anybody at home to talk.. I wish I lived closer to somebody so we could get together and talk. I feel so alone fighting this disease.Jo Ann 53 MI UIP 9/07 No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.725 / Virus Database: 270.14.143/2624 - Release Date: 01/15/10 04:47:00 No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.730 / Virus Database: 270.14.151/2633 - Release Date: 01/19/10 09:49:00 No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.730 / Virus Database: 270.14.151/2633 - Release Date: 01/19/10 09:49:00 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2010 Report Share Posted January 22, 2010 I had blood tests this morning. They were good. I'm just having side affect from the CellCept. I was doing good on two a day but when I doubled it I have problems. I quit taking it yesterday and I am feeling better tonight. She told me to start on 2 a day again and try to work up to 4 slowly. If I still can't tolerate it Dr. Raghu has to be contacted. I have an appointment with my pulmo Monday.Beverley Joy,71,PF, Chronic HP, birds and mold 1-09,Sjogren's,Fibromyalgia Idaho I am so frustrated, I went for a 6min walk today at the hospital. When I got there to sign in they tried to tell me I was at the wrong place I said no I am supposed to be here. Finially she found my name but it was for PFT's, I said no I am having a 6min walk, she called somebody on the phone and got it straightened out. I sat down and I almost started crying there at the hospital. I am so tired of always having to fight for any kind of treatment I get. I have learned so much from this board, because of everyone here I know what I need, I just have to fight to get anythingIn June I started Pulmonary Rehab and I could finially prove to my Dr. that I needed 02. In July I started on 02, 2 lpm with exertion. I've known for a while that that wasn't enough. In Dec. I finially got an oximeter to check my sats. For the last couple weeks I have been checking my sats while walking, I need at least 5 lpm to keep my sats in the low 90s. So I called my Dr. to ask for the 6min walk test. They acted like I didn't know what I was talking about, but I insisted that I have one. So that is why I am here today. I am so tired of hveing to insist that I be given tests all the time. I think today was my breaking point. I would like to say the .... with all of the doctors, just give up on everything and sit home waiting to die. I just hate this disease, and the doctors that don't know anything.I'm sorry about this I guess I just needed to vent. I don't have anybody at home to talk.. I wish I lived closer to somebody so we could get together and talk. I feel so alone fighting this disease.Jo Ann 53 MI UIP 9/07 No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.725 / Virus Database: 270.14.143/2624 - Release Date: 01/15/10 04:47:00 No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.730 / Virus Database: 270.14.151/2633 - Release Date: 01/19/10 09:49:00 No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.730 / Virus Database: 270.14.151/2633 - Release Date: 01/19/10 09:49:00 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2010 Report Share Posted January 22, 2010 Thank you. I am. I at least got someone to take me to the doctor and fix me a quick breakfast. Now I'm alone again.Beverley Joy,71,PF, Chronic HP, birds and mold 1-09,Sjogren's,Fibromyalgia Idaho I am so frustrated, I went for a 6min walk today at the hospital. When I got there to sign in they tried to tell me I was at the wrong place I said no I am supposed to be here. Finially she found my name but it was for PFT's, I said no I am having a 6min walk, she called somebody on the phone and got it straightened out. I sat down and I almost started crying there at the hospital. I am so tired of always having to fight for any kind of treatment I get. I have learned so much from this board, because of everyone here I know what I need, I just have to fight to get anythingIn June I started Pulmonary Rehab and I could finially prove to my Dr. that I needed 02. In July I started on 02, 2 lpm with exertion. I've known for a while that that wasn't enough. In Dec. I finially got an oximeter to check my sats. For the last couple weeks I have been checking my sats while walking, I need at least 5 lpm to keep my sats in the low 90s. So I called my Dr. to ask for the 6min walk test. They acted like I didn't know what I was talking about, but I insisted that I have one. So that is why I am here today. I am so tired of hveing to insist that I be given tests all the time. I think today was my breaking point. I would like to say the .... with all of the doctors, just give up on everything and sit home waiting to die. I just hate this disease, and the doctors that don't know anything.I'm sorry about this I guess I just needed to vent. I don't have anybody at home to talk.. I wish I lived closer to somebody so we could get together and talk. I feel so alone fighting this disease.Jo Ann 53 MI UIP 9/07 No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.725 / Virus Database: 270.14.143/2624 - Release Date: 01/15/10 04:47:00 No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.730 / Virus Database: 270.14.151/2633 - Release Date: 01/19/10 09:49:00 No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.730 / Virus Database: 270.14.151/2633 - Release Date: 01/19/10 09:49:00 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2010 Report Share Posted January 22, 2010 My pills are 500mg so I was taking 2000.Beverley Joy,71,PF, Chronic HP, birds and mold 1-09,Sjogren's,Fibromyalgia Idaho I am so frustrated, I went for a 6min walk today at the hospital. When I got there to sign in they tried to tell me I was at the wrong place I said no I am supposed to be here. Finially she found my name but it was for PFT's, I said no I am having a 6min walk, she called somebody on the phone and got it straightened out. I sat down and I almost started crying there at the hospital. I am so tired of always having to fight for any kind of treatment I get. I have learned so much from this board, because of everyone here I know what I need, I just have to fight to get anythingIn June I started Pulmonary Rehab and I could finially prove to my Dr. that I needed 02. In July I started on 02, 2 lpm with exertion. I've known for a while that that wasn't enough. In Dec. I finially got an oximeter to check my sats. For the last couple weeks I have been checking my sats while walking, I need at least 5 lpm to keep my sats in the low 90s. So I called my Dr. to ask for the 6min walk test. They acted like I didn't know what I was talking about, but I insisted that I have one. So that is why I am here today. I am so tired of hveing to insist that I be given tests all the time. I think today was my breaking point. I would like to say the .... with all of the doctors, just give up on everything and sit home waiting to die. I just hate this disease, and the doctors that don't know anything.I'm sorry about this I guess I just needed to vent. I don't have anybody at home to talk.. I wish I lived closer to somebody so we could get together and talk. I feel so alone fighting this disease.Jo Ann 53 MI UIP 9/07 No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.725 / Virus Database: 270.14.143/2624 - Release Date: 01/15/10 04:47:00 No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.730 / Virus Database: 270.14.151/2633 - Release Date: 01/19/10 09:49:00 No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.730 / Virus Database: 270.14.151/2633 - Release Date: 01/19/10 09:49:00 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2010 Report Share Posted January 22, 2010 I didn't double them by mistake. Dr. Raghu told me to take 500mg twice daily for two weeks then up the dosage to 1000mg. twice daily. I do the pill boxes too. I will call his office if I can't get myself back up to the 2000. Two a day was good. He said it might help my pain a little. It helped a lot. It would be good if I could just take 1000 a day.Beverley Joy,71,PF, Chronic HP, birds and mold 1-09,Sjogren's,Fibromyalgia Idaho I am so frustrated, I went for a 6min walk today at the hospital. When I got there to sign in they tried to tell me I was at the wrong place I said no I am supposed to be here. Finially she found my name but it was for PFT's, I said no I am having a 6min walk, she called somebody on the phone and got it straightened out. I sat down and I almost started crying there at the hospital. I am so tired of always having to fight for any kind of treatment I get. I have learned so much from this board, because of everyone here I know what I need, I just have to fight to get anythingIn June I started Pulmonary Rehab and I could finially prove to my Dr. that I needed 02. In July I started on 02, 2 lpm with exertion. I've known for a while that that wasn't enough. In Dec. I finially got an oximeter to check my sats. For the last couple weeks I have been checking my sats while walking, I need at least 5 lpm to keep my sats in the low 90s. So I called my Dr. to ask for the 6min walk test. They acted like I didn't know what I was talking about, but I insisted that I have one. So that is why I am here today. I am so tired of hveing to insist that I be given tests all the time. I think today was my breaking point. I would like to say the .... with all of the doctors, just give up on everything and sit home waiting to die. I just hate this disease, and the doctors that don't know anything.I'm sorry about this I guess I just needed to vent. I don't have anybody at home to talk.. I wish I lived closer to somebody so we could get together and talk. I feel so alone fighting this disease.Jo Ann 53 MI UIP 9/07 No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.725 / Virus Database: 270.14.143/2624 - Release Date: 01/15/10 04:47:00 No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.730 / Virus Database: 270.14.151/2633 - Release Date: 01/19/10 09:49:00 No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.730 / Virus Database: 270.14.151/2633 - Release Date: 01/19/10 09:49:00 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2010 Report Share Posted January 22, 2010 Gosh BEV.I thought all of you would be tucked up in your Beds by now...you've been having a miserable time of it....YUK Tummy Trouble is the Pits...I think I'd rather be in Pain than have a crook Tum! Feeling all alone makes it even more miserable....do you ever listen to the Radio to keep you company.. I find a nice Radio Voice, some good Banter & nice Music can make it seem like I've got friends visiting...good company & fills up the quiet space. I have mine going all day long oin the Background. Here's hoping you adjust to those pills sooner rather than later.. Good Luck, love, in Oz > > > > > > > I am so frustrated, I went for a 6min walk today at the hospital. When I got there to sign in they tried to tell me I was at the wrong place I said no I am supposed to be here. Finially she found my name but it was for PFT's, I said no I am having a 6min walk, she called somebody on the phone and got it straightened out. I sat down and I almost started crying there at the hospital. I am so tired of always having to fight for any kind of treatment I get. I have learned so much from this board, because of everyone here I know what I need, I just have to fight to get anything> In June I started Pulmonary Rehab and I could finially prove to my Dr. that I needed 02. In July I started on 02, 2 lpm with exertion. I've known for a while that that wasn't enough. In Dec. I finially got an oximeter to check my sats. For the last couple weeks I have been checking my sats while walking, I need at least 5 lpm to keep my sats in the low 90s. So I called my Dr.> to ask for the 6min walk test. They acted like I didn't know what I was talking about, but I insisted that I have one. So that is why I am here today. I am so tired of hveing to insist that I be given tests all the time. I think today was my breaking point. I would like to say the .... with all of the doctors, just give up on everything and sit home waiting to die. I just hate this disease, and the doctors that don't know anything.> I'm sorry about this I guess I just needed to vent. I don't have anybody at home to talk.. I wish I lived closer to somebody so we could get together and talk. I feel so alone fighting this disease.> > Jo Ann 53 MI UIP 9/07> > > > > > > > > > > No virus found in this incoming message.> Checked by AVG - www.avg.com > Version: 9.0.725 / Virus Database: 270.14.143/2624 - Release Date: 01/15/10 04:47:00> > > > > > > No virus found in this incoming message.> Checked by AVG - www.avg.com > Version: 9.0.730 / Virus Database: 270.14.151/2633 - Release Date: 01/19/10 09:49:00> > > > > > > No virus found in this incoming message.> Checked by AVG - www.avg.com > Version: 9.0.730 / Virus Database: 270.14.151/2633 - Release Date: 01/19/10 09:49:00> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2010 Report Share Posted January 22, 2010 Thank you. I was able to eat today so I am feeling better.Beverley Joy,71,PF, Chronic HP, birds and mold 1-09,Sjogren's,Fibromyalgia IdahoSubject: CellCeptTo: Breathe-Support Date: Friday, January 22, 2010, 6:08 AM Beverly, Sorry to hear you are under the weather..... let us know what the doctor says. Patti Indianapolis PF 2007 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2010 Report Share Posted January 22, 2010 , I am feeling like I should be tucked up in bed but it isn't 10 o'clock yet here. I watch either the the ten o'clock or the 11 o'clock news before I go to bed. I'm an old lady. I don't have to get up early. I'm one of those people who actually prefer quiet. As soon as Bob walks in he turns on the TV. Before I divorced him my ex had one preacher after another on TV all day and half the night. I about had more noise than I could handle. He was a member of a cult and he taped those preachers for the cult leader. The cult leader didn't watch then but it was a form of control. No one could watch TV. I wound up living in my bedroom. The cult leader is in prison and my husband is dead. I think his leader going to prison for molesting the girls shortened his life. We were married for 45 years and I still miss him. We could always laugh and joke until he got too obsessed with the cult.Beverley Joy,71,PF, Chronic HP, birds and mold 1-09,Sjogren's,Fibromyalgia IdahoSubject: Re: CellCeptTo: Breathe-Support Date: Friday, January 22, 2010, 8:35 PM Gosh BEV.I thought all of you would be tucked up in your Beds by now...you've been having a miserable time of it....YUK Tummy Trouble is the Pits...I think I'd rather be in Pain than have a crook Tum! Feeling all alone makes it even more miserable... .do you ever listen to the Radio to keep you company.. I find a nice Radio Voice, some good Banter & nice Music can make it seem like I've got friends visiting...good company & fills up the quiet space. I have mine going all day long oin the Background. Here's hoping you adjust to those pills sooner rather than later.. Good Luck, love, in Oz > > > > > > > I am so frustrated, I went for a 6min walk today at the hospital. When I got there to sign in they tried to tell me I was at the wrong place I said no I am supposed to be here. Finially she found my name but it was for PFT's, I said no I am having a 6min walk, she called somebody on the phone and got it straightened out. I sat down and I almost started crying there at the hospital. I am so tired of always having to fight for any kind of treatment I get. I have learned so much from this board, because of everyone here I know what I need, I just have to fight to get anything> In June I started Pulmonary Rehab and I could finially prove to my Dr. that I needed 02. In July I started on 02, 2 lpm with exertion. I've known for a while that that wasn't enough. In Dec. I finially got an oximeter to check my sats. For the last couple weeks I have been checking my sats while walking, I need at least 5 lpm to keep my sats in the low 90s. So I called my Dr.> to ask for the 6min walk test. They acted like I didn't know what I was talking about, but I insisted that I have one. So that is why I am here today. I am so tired of hveing to insist that I be given tests all the time. I think today was my breaking point. I would like to say the .... with all of the doctors, just give up on everything and sit home waiting to die. I just hate this disease, and the doctors that don't know anything.> I'm sorry about this I guess I just needed to vent. I don't have anybody at home to talk.. I wish I lived closer to somebody so we could get together and talk. I feel so alone fighting this disease.> > Jo Ann 53 MI UIP 9/07> > > > > > > > > > > No virus found in this incoming message.> Checked by AVG - www.avg.com > Version: 9.0.725 / Virus Database: 270.14.143/2624 - Release Date: 01/15/10 04:47:00> > > > > > > No virus found in this incoming message.> Checked by AVG - www.avg.com > Version: 9.0.730 / Virus Database: 270.14.151/2633 - Release Date: 01/19/10 09:49:00> > > > > > > No virus found in this incoming message.> Checked by AVG - www.avg.com > Version: 9.0.730 / Virus Database: 270.14.151/2633 - Release Date: 01/19/10 09:49:00> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2010 Report Share Posted January 23, 2010 Beverley after you adjust to 2 a day, ask about going to 3 a day before going to 4 a day also, i take 2 in the morning and 2 in the evening maybe a more gradual increase is what you need since it helps me, i really want it to help you Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: CellCeptTo: Breathe-Support Date: Friday, January 22, 2010, 11:22 PM I had blood tests this morning. They were good. I'm just having side affect from the CellCept. I was doing good on two a day but when I doubled it I have problems. I quit taking it yesterday and I am feeling better tonight. She told me to start on 2 a day again and try to work up to 4 slowly. If I still can't tolerate it Dr. Raghu has to be contacted. I have an appointment with my pulmo Monday.Beverley Joy,71,PF, Chronic HP, birds and mold 1-09,Sjogren' s,Fibromyalgia Idaho I am so frustrated, I went for a 6min walk today at the hospital. When I got there to sign in they tried to tell me I was at the wrong place I said no I am supposed to be here. Finially she found my name but it was for PFT's, I said no I am having a 6min walk, she called somebody on the phone and got it straightened out. I sat down and I almost started crying there at the hospital. I am so tired of always having to fight for any kind of treatment I get. I have learned so much from this board, because of everyone here I know what I need, I just have to fight to get anythingIn June I started Pulmonary Rehab and I could finially prove to my Dr. that I needed 02. In July I started on 02, 2 lpm with exertion. I've known for a while that that wasn't enough. In Dec. I finially got an oximeter to check my sats. For the last couple weeks I have been checking my sats while walking, I need at least 5 lpm to keep my sats in the low 90s. So I called my Dr. to ask for the 6min walk test. They acted like I didn't know what I was talking about, but I insisted that I have one. So that is why I am here today. I am so tired of hveing to insist that I be given tests all the time. I think today was my breaking point. I would like to say the .... with all of the doctors, just give up on everything and sit home waiting to die. I just hate this disease, and the doctors that don't know anything.I'm sorry about this I guess I just needed to vent. I don't have anybody at home to talk.. I wish I lived closer to somebody so we could get together and talk. I feel so alone fighting this disease.Jo Ann 53 MI UIP 9/07 No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.725 / Virus Database: 270.14.143/2624 - Release Date: 01/15/10 04:47:00 No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.730 / Virus Database: 270.14.151/2633 - Release Date: 01/19/10 09:49:00 No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.730 / Virus Database: 270.14.151/2633 - Release Date: 01/19/10 09:49:00 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2010 Report Share Posted January 23, 2010 beverley i am glad to hear that 2 a day would work for you Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: CellCeptTo: Breathe-Support Date: Friday, January 22, 2010, 11:34 PM I didn't double them by mistake. Dr. Raghu told me to take 500mg twice daily for two weeks then up the dosage to 1000mg. twice daily. I do the pill boxes too. I will call his office if I can't get myself back up to the 2000. Two a day was good. He said it might help my pain a little. It helped a lot. It would be good if I could just take 1000 a day.Beverley Joy,71,PF, Chronic HP, birds and mold 1-09,Sjogren' s,Fibromyalgia Idaho I am so frustrated, I went for a 6min walk today at the hospital. When I got there to sign in they tried to tell me I was at the wrong place I said no I am supposed to be here. Finially she found my name but it was for PFT's, I said no I am having a 6min walk, she called somebody on the phone and got it straightened out. I sat down and I almost started crying there at the hospital. I am so tired of always having to fight for any kind of treatment I get. I have learned so much from this board, because of everyone here I know what I need, I just have to fight to get anythingIn June I started Pulmonary Rehab and I could finially prove to my Dr. that I needed 02. In July I started on 02, 2 lpm with exertion. I've known for a while that that wasn't enough. In Dec. I finially got an oximeter to check my sats. For the last couple weeks I have been checking my sats while walking, I need at least 5 lpm to keep my sats in the low 90s. So I called my Dr. to ask for the 6min walk test. They acted like I didn't know what I was talking about, but I insisted that I have one. So that is why I am here today. I am so tired of hveing to insist that I be given tests all the time. I think today was my breaking point. I would like to say the .... with all of the doctors, just give up on everything and sit home waiting to die. I just hate this disease, and the doctors that don't know anything.I'm sorry about this I guess I just needed to vent. I don't have anybody at home to talk.. I wish I lived closer to somebody so we could get together and talk. I feel so alone fighting this disease.Jo Ann 53 MI UIP 9/07 No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.725 / Virus Database: 270.14.143/2624 - Release Date: 01/15/10 04:47:00 No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.730 / Virus Database: 270.14.151/2633 - Release Date: 01/19/10 09:49:00 No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.730 / Virus Database: 270.14.151/2633 - Release Date: 01/19/10 09:49:00 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2010 Report Share Posted January 23, 2010 I'm back on 2 a day and still having some side affects but I am feeling a whole lot better. I can eat. I'll talk to my pulmo Monday and see what he says. He may want to contact Dr. Raghu. I was feeling good on 2 a day. It helped my pain so much. I didn't reslize how much pain I was having until it stopped. Thank you so much for caring.Beverley Joy,71,PF, Chronic HP, birds and mold 1-09,Sjogren's,Fibromyalgia Idaho I am so frustrated, I went for a 6min walk today at the hospital. When I got there to sign in they tried to tell me I was at the wrong place I said no I am supposed to be here. Finially she found my name but it was for PFT's, I said no I am having a 6min walk, she called somebody on the phone and got it straightened out. I sat down and I almost started crying there at the hospital. I am so tired of always having to fight for any kind of treatment I get. I have learned so much from this board, because of everyone here I know what I need, I just have to fight to get anythingIn June I started Pulmonary Rehab and I could finially prove to my Dr. that I needed 02. In July I started on 02, 2 lpm with exertion. I've known for a while that that wasn't enough. In Dec. I finially got an oximeter to check my sats. For the last couple weeks I have been checking my sats while walking, I need at least 5 lpm to keep my sats in the low 90s. So I called my Dr. to ask for the 6min walk test. They acted like I didn't know what I was talking about, but I insisted that I have one. So that is why I am here today. I am so tired of hveing to insist that I be given tests all the time. I think today was my breaking point. I would like to say the .... with all of the doctors, just give up on everything and sit home waiting to die. I just hate this disease, and the doctors that don't know anything.I'm sorry about this I guess I just needed to vent. I don't have anybody at home to talk.. I wish I lived closer to somebody so we could get together and talk. I feel so alone fighting this disease.Jo Ann 53 MI UIP 9/07 No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.725 / Virus Database: 270.14.143/2624 - Release Date: 01/15/10 04:47:00 No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.730 / Virus Database: 270.14.151/2633 - Release Date: 01/19/10 09:49:00 No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.730 / Virus Database: 270.14.151/2633 - Release Date: 01/19/10 09:49:00 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2010 Report Share Posted January 23, 2010 Mmmmm Bev Yep I can understand why quiet is preferable to Radio in the Background..what an experience....to live with someone hooked into a Cult when you weren't....I wouldn't last long in that situation. My guess is that you miss the Earlier relationship you had with your Husband. I still miss my 1st Hubby, even though we were separated at the time of his Death. He came to me in a dream the other night (it was his Death Anniversary on Jan 12th)..it was so REAL...I was crying & hugging him & telling him I was so sorry for not being more mature at the time, to be able to handle what had happened in our lives at that stage. (I was 30 when he became Brain damaged after a motor bike accident & we separated 3 years later!) He died 6 months after he moved out of our house, where I still live! He's taught me a huge amount since his death & oin a way he's still with me! We meet everyone for a reason ...whether it's on cyberspace or in reality land! Lotsa, > > > > > > > > > > > > > > I am so frustrated, I went for a 6min walk today at the hospital. When I got there to sign in they tried to tell me I was at the wrong place I said no I am supposed to be here. Finially she found my name but it was for PFT's, I said no I am having a 6min walk, she called somebody on the phone and got it straightened out. I sat down and I almost started crying there at the hospital. I am so tired of always having to fight for any kind of treatment I get. I have learned so much from this board, because of everyone here I know what I need, I just have to fight to get anything> > In June I started Pulmonary Rehab and I could finially prove to my Dr. that I needed 02. In July I started on 02, 2 lpm with exertion. I've known for a while that that wasn't enough. In Dec. I finially got an oximeter to check my sats. For the last couple weeks I have been checking my sats while walking, I need at least 5 lpm to keep my sats in the low 90s. So I called my Dr.> > to ask for the 6min walk test. They acted like I didn't know what I was talking about, but I insisted that I have one. So that is why I am here today. I am so tired of hveing to insist that I be given tests all the time. I think today was my breaking point. I would like to say the .... with all of the doctors, just give up on everything and sit home waiting to die. I just hate this disease, and the doctors that don't know anything.> > I'm sorry about this I guess I just needed to vent. I don't have anybody at home to talk.. I wish I lived closer to somebody so we could get together and talk. I feel so alone fighting this disease.> > > > Jo Ann 53 MI UIP 9/07> > > > > > > > > > > > > > > > > > > > > > No virus found in this incoming message.> > Checked by AVG - www.avg.com > > Version: 9.0.725 / Virus Database: 270.14.143/2624 - Release Date: 01/15/10 04:47:00> > > > > > > > > > > > > > No virus found in this incoming message.> > Checked by AVG - www.avg.com > > Version: 9.0.730 / Virus Database: 270.14.151/2633 - Release Date: 01/19/10 09:49:00> > > > > > > > > > > > > > No virus found in this incoming message.> > Checked by AVG - www.avg.com > > Version: 9.0.730 / Virus Database: 270.14.151/2633 - Release Date: 01/19/10 09:49:00> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2010 Report Share Posted January 25, 2010 , I have been having computer problems and I somehow missed this post. You are right about me missing that relationship. I have been having those kinds of dreams since I've been sick.I'm so sorry about your husband. What a terrible thing. My son in law was hit by a car when he was his bike,too. He was thrown against a tree and his leg and hand were crushed but they put him back together pretty good. Now I forget he has a disability. He is still able to work. He is a designer for Boeing's.Beverley Joy,71,PF, Chronic HP, birds and mold 1-09,Sjogren's,Fibromyalgia IdahoSubject: Re: CellCeptTo: Breathe-Support Date: Saturday, January 23, 2010, 3:26 PM Mmmmm Bev Yep I can understand why quiet is preferable to Radio in the Background.. what an experience.. ..to live with someone hooked into a Cult when you weren't....I wouldn't last long in that situation. My guess is that you miss the Earlier relationship you had with your Husband. I still miss my 1st Hubby, even though we were separated at the time of his Death. He came to me in a dream the other night (it was his Death Anniversary on Jan 12th)..it was so REAL...I was crying & hugging him & telling him I was so sorry for not being more mature at the time, to be able to handle what had happened in our lives at that stage. (I was 30 when he became Brain damaged after a motor bike accident & we separated 3 years later!) He died 6 months after he moved out of our house, where I still live! He's taught me a huge amount since his death & oin a way he's still with me! We meet everyone for a reason ...whether it's on cyberspace or in reality land! Lotsa, > > > > > > > > > > > > > > I am so frustrated, I went for a 6min walk today at the hospital. When I got there to sign in they tried to tell me I was at the wrong place I said no I am supposed to be here. Finially she found my name but it was for PFT's, I said no I am having a 6min walk, she called somebody on the phone and got it straightened out. I sat down and I almost started crying there at the hospital. I am so tired of always having to fight for any kind of treatment I get. I have learned so much from this board, because of everyone here I know what I need, I just have to fight to get anything> > In June I started Pulmonary Rehab and I could finially prove to my Dr. that I needed 02. In July I started on 02, 2 lpm with exertion. I've known for a while that that wasn't enough. In Dec. I finially got an oximeter to check my sats. For the last couple weeks I have been checking my sats while walking, I need at least 5 lpm to keep my sats in the low 90s. So I called my Dr.> > to ask for the 6min walk test. They acted like I didn't know what I was talking about, but I insisted that I have one. So that is why I am here today. I am so tired of hveing to insist that I be given tests all the time. I think today was my breaking point. I would like to say the .... with all of the doctors, just give up on everything and sit home waiting to die. I just hate this disease, and the doctors that don't know anything.> > I'm sorry about this I guess I just needed to vent. I don't have anybody at home to talk.. I wish I lived closer to somebody so we could get together and talk. I feel so alone fighting this disease.> > > > Jo Ann 53 MI UIP 9/07> > > > > > > > > > > > > > > > > > > > > > No virus found in this incoming message.> > Checked by AVG - www.avg.com > > Version: 9.0.725 / Virus Database: 270.14.143/2624 - Release Date: 01/15/10 04:47:00> > > > > > > > > > > > > > No virus found in this incoming message.> > Checked by AVG - www.avg.com > > Version: 9.0.730 / Virus Database: 270.14.151/2633 - Release Date: 01/19/10 09:49:00> > > > > > > > > > > > > > No virus found in this incoming message.> > Checked by AVG - www.avg.com > > Version: 9.0.730 / Virus Database: 270.14.151/2633 - Release Date: 01/19/10 09:49:00> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2011 Report Share Posted April 22, 2011 , That is fantastic news. I hope that it works for You. takes 750 mg twice a day. It seems to keep her brain lesions in check along with the 20 mg dose of prednisone. I will continue to keep you in my prayers. Have a blessed Easter. MattSubject: CellCeptTo: Neurosarcoidosis Date: Friday, April 22, 2011, 8:14 PM GUESS WHAT?!!! My immunologist just called (yes, on Easter Saturday) to tell me that the hospital has approved my CellCept prescription, and this means that THE HOSPITAL WILL PAY FOR IT!!!! It won't cost me a penny!!!! I still can't quite believe it!!!!!!! So I just have to get the medication from the hospital pharmacy each month, but it's completely covered. My god, I'm so relieved ... I've been panicking and sick with worry about it all week. I kind of wish he'd explained better last Monday about what "getting approval" meant - he never mentioned that that process would mean the hospital would cover the costs, he just said "It's very expensive", which implied that it would be expensive to *me*. I pick up the script and first batch on Wednesday, and then can start to taper off the Prednisolone again. My Eye Clinic results from last week showed some deterioration in my peripheral vision, but not a huge amount. Anyway! Best Easter Present Ever! Now I just have to hope that it WORKS, but that's another matter ... very very VERY relieved. xxoo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2011 Report Share Posted April 22, 2011 , That is awesome news, what a great Easter gift!!   Now will pray this works for you, and you can get off the Pred. Yeah!! Marla " Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours. " - Irish Proverb   GUESS WHAT?!!! My immunologist just called (yes, on Easter Saturday) to tell me that the hospital has approved my CellCept prescription, and this means that THE HOSPITAL WILL PAY FOR IT!!!! It won't cost me a penny!!!! I still can't quite believe it!!!!!!! So I just have to get the medication from the hospital pharmacy each month, but it's completely covered. My god, I'm so relieved ... I've been panicking and sick with worry about it all week. I kind of wish he'd explained better last Monday about what " getting approval " meant - he never mentioned that that process would mean the hospital would cover the costs, he just said " It's very expensive " , which implied that it would be expensive to *me*. I pick up the script and first batch on Wednesday, and then can start to taper off the Prednisolone again. My Eye Clinic results from last week showed some deterioration in my peripheral vision, but not a huge amount. Anyway! Best Easter Present Ever! Now I just have to hope that it WORKS, but that's another matter ... very very VERY relieved. xxoo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2011 Report Share Posted April 22, 2011 , that's great news! We'll cross our fingers AND pray that it works for you. Ramblin' RoseCo-owner/Moderator "I child-proofed my home and they STILL get in!" (Bumper sticker) > To: Neurosarcoidosis > Date: Sat, 23 Apr 2011 10:14:13 +1000> Subject: CellCept> > GUESS WHAT?!!! My immunologist just called (yes, on Easter Saturday) to tell me that the hospital has approved my CellCept prescription, and this means that THE HOSPITAL WILL PAY FOR IT!!!! It won't cost me a penny!!!! I still can't quite believe it!!!!!!! > > So I just have to get the medication from the hospital pharmacy each month, but it's completely covered. My god, I'm so relieved ... I've been panicking and sick with worry about it all week.> > I kind of wish he'd explained better last Monday about what "getting approval" meant - he never mentioned that that process would mean the hospital would cover the costs, he just said "It's very expensive", which implied that it would be expensive to *me*. I pick up the script and first batch on Wednesday, and then can start to taper off the Prednisolone again. My Eye Clinic results from last week showed some deterioration in my peripheral vision, but not a huge amount.> > Anyway! Best Easter Present Ever!> > Now I just have to hope that it WORKS, but that's another matter ... very very VERY relieved.> > xxoo > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> 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 > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.