Guest guest Posted February 20, 2004 Report Share Posted February 20, 2004 Marla, How have you been hun, Sorry I haven't been talking with you much but I have been so sick lately and haven't been posting that much I'm trying to keep up with the post I do read them as much as possible tho'. How are you doing? I hope that you are doing as well as anyone can with this aweful disease. My prayers are as always with you and your family. I just wanted to say hello and see how you were doing. Take care my friend. Love and prayers, Time is a very precious gift of God;so precious that it's only given to usmoment by moment.............. ~~~~~~Amelia Barr Jan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2004 Report Share Posted March 13, 2004 , Thanks for your kind words, I will try and post more often, I am praying for us all! Marla > Hi Marla honey, > > I read your post to Jan, and even though you think your problems are > nothing compared to others here, we still like hearing from you > sweetie....... > > Please don't ever feel that you can not write and post just > because..... We like reading those posts too.......... > > OK??? > > Love ya lots from Iowa > > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > The Neurosarcoidosis Community > > Live Group Chat:- > Mondays & Fridays 10pm EST USA > http://www.elderwyn.com/neurosarcoidosis/chat.php > > 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...
Guest guest Posted April 29, 2004 Report Share Posted April 29, 2004 Re: Rose/neurontin Hey Rose, its Me Marla, I don't post too much anymore, same old thing going on with me, like you said, not worse, but not remarkable better. I did want to mention however, that I am Neurontin 800mgs three times a day, and I take 100mgs prn pain, that seems to work for me. I was told this dose by the pain doc I saw, and trust, he is an anestheologist I use to work for at the birthing center. he did great epidurals, so I figured he knew what he is talking about. I'm also on Methxo now, 15mgs once a week, I don't notice much different, In the begining it created terrible irritable bowel like symptoms, but even that is better. I see a little improvement. I would very much like to try Remicade, I heard it is $3000 per infusion!! I will take the research info I have, I got it from the drug company, get this, they will only give to someone in the medical field, so I said OK, not only do I have multi symptom Sarc. I am an RN, and she said good enough for me and sent!! How easy was that.My little na did her first communion this past weekend, and so I was busy getting ready for it, then a lot of relatives, and fun. But guess what, been sick and woren out since Sun. and now have bronchitits, went to the doc yesterday, put me on the Z pack, inhaler, and cough med. Sometimes it doesn't pay to do extra???? I will attache a picture of my sweet girl, with me and Daddy, if anyone is interested in looking.Rose, I think of you often, do you miss the birthing babies as much as I do??? Love you,Marlaps. I'm not sure how big the picture will open, let me know if you can't see it. >> Hi Rose. First of all I have systemic sarc, skin and joints and it > also is affecting my neuro system, but they haven't confirmed that as > of yet. I don't have pulmonary sarc. I started on MTX & folic acid > last Sept. I take it on Sunday nights because it would make me sick > for a day maybe two, usually weakness, body aches, nausea(dr. can give > you something for that), headaches - just like the flu. It took a few > months to actually notice any change. It did help a little with the > arthralgias and fatigue and weakness and the night sweats and > neuralgia pain ,but not enough. So in December when I couldn't stand > it anymore and then the Rheumy talked about Remicade as being the > next step. YOu still take the MTX with it, though. Anyway I do. It > took me 3 mos. for the insurance co. to approve it, but they finally > did and I got my first infusion in March. I had the same symptoms the > day after the Remicade as the day after MTX. But I was willing to go > on and got the 2nd infusion 2 weeks later. I still hadn't felt any > worth while effects, but they told me it takes anywhere from the first > to the third even the fourth or fifth to feel the effects. The next > infusion was supposed to be last week. But 4 days before I went in > for my reg. followup with my rheumy and he did some bloodwork (they do > it every 2 mos on a reg. basis). Two days later he calls me and says > he has to stop all treatment for me cause my white blood cell count > dropped to 2.4 and my immune system was TOO low. I have to stop the > MTX and Remicade for 3 wks, then take another blood test . If the > white blood cell count is up again, then I can resume treatment. But > now a week and a half later I am feeling the old symptoms coming back. > I didn't realize how much the MTX was helping, but Im afraid Im gonna > slide back to how bad I felt last summer. I am starting to get very > anxious. Hopefully, I have to stick it out and my next blood test will > be okay and I can resume the Remicade & MTX. (I asked if he thought > it was the Remicade that affected the white blood cells and he says it > was the MTX . He has seen it before in other people . All of a > sudden it will drop.)> As for the Prednisone I had been off and on it since I was a kid for > my asthma, that's what they used a lot back then. So I knew the side > effects and such. I refused to go on it. ANd since I didn't have > pulm. sarc the drs agreed. It would just be like a band aid if > anything. Help for awhile, but as soon as I got off it would come > right back. AIsha has told me that too. > As for your Neurontin, I am on it for the sarc headaches and the pains > around my joints.> The neuro started me on 100 mg 3x day then slowly increased it to 400 > mg 3x day until it was working. But he told me it could go up to 1200 > mg a day if needed (usually that amt is for epeleptics).> So I don't know if this LONG post helps, I hope you talk to your dr > and try something more effective. The least you can do is try, what > have you got to lose? That was my attitude...... > Good luck Rose. I hope this helps. Luv, Debbie T.> */Rose /* wrote:>> Hi, guys. I read a lot of posts reporting the effects of> different drugs on symptoms, but often there is nothing specific. > Like, someone will say that MTX is helping their symptoms, but I> don't know what those are. I'm considering trying Methotrexate or> Remicade, but I'm not even sure what they're supposed to help. I> think I read somewhere that Remicade wasn't much good for> pulmonary sarc, but better for skin & neurosarc. I don't think> I've seen anything about systemic symptoms, like fatigue & muscle> weakness.> > I'm still on Pred 10mg daily & Imuran 50mg 3 times a day. I don't> feel a lot worse, but no better. Seem to have "slumps" every 2-3> weeks, with worse fatigue, then back to the usual fatigue. The> neuropathic pain in my feet is getting worse; I don't know if I> should ask for an increase in Neurontin for that. I'm on 600mg 3> times a day. I don't know what the highest safe dose is and I'd> hate to top out too soon. Does that make sense to anyone?> > Can some of you describe the symptoms that have responded to> various drugs? I know everyone responds to drugs differently, but> that would give me something to go on. Thanks for any input. > Ramblin' Rose>>> ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community>> Live Group Chat:-> Mondays & Fridays 10pm EST USA> http://health.groups.yahoo.com/group/Neurosarcoidosis/chat.php>> 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...
Guest guest Posted August 7, 2004 Report Share Posted August 7, 2004 Hi Marla, Sorry you have so much pain. My disease seems to have spared me that. I actualy prefer the Pred to the MTX. But the stuff is working I just am soooo happy to be dropping down. Have you found good doctors yet?? Bobbie > > > > > >>Bobbie, > >>I'm on 15mg, which is as high as my doc would take me, are you on > >> > >> > >any > > > > > >>other meds, when I started the neurontin and went up to fast, I got > >> > >> > >that > > > > > >>way, but never from the methotrexate?? > >>Marla > >> > >> > >> > >> > >> > >> > >>>hey gang. > >>> > >>>I have been taking 25mg Im Methotrexate for about 6 months. I feel > >>>like the inside of my skull has been shot full of novocaine. my > >>> > >>> > >head > > > > > >>>is numb I can't think my way out of a box and I am worried about > >>>losing consciousness. What dose are people on? I don't know if > >>> > >>> > >it's > > > > > >>>the sarc or the meds but I am very worried. I see my rheumy today > >>> > >>> > >but > > > > > >>>thought i'd ask the experts first...... > >>>Bobbie > >>> > >>> > >>> > >>> > >>> > >>>~~~~ *** ~~~ *** ~~~ *** ~~~~ > >>>The Neurosarcoidosis Community > >>> > >>>Live Group Chat:- > >>>Mondays & Fridays 10pm EST USA > >>>www.mirc.com download the program, follow instructions find Server > >>> > >>> > >Dalnet then type in /join #NSChat. If you need help please notify > > at topdat@b... or topdat on yahoo messenger. > > > > > >>>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.