Guest guest Posted May 7, 2010 Report Share Posted May 7, 2010 Hi Jerry, Welcome to our family. We are happy you found us but sorry you had to under these circumstances. We have many knowledgeable people here and they are willing to share and answer questions, so do not be afraid to ask them. The only thing I would ask is to be patient in getting an answer -- we are ALL sick here and sometimes it might take a day or two, but you will get an answer. Also, we have very good archives -- with lots of info there. I have been cleaning them out the last few months to get rid of the non-essential messages and make it easier and quicker to do the search feature. Besides that, we have a FILE and LINK section that also has very good info. We have over 600 members from all around the world, so we get lots of different inputs. What kind of IV are they wanting to do on Loretta?? Most of us started out treating this disease with Prednisone and then graduating to stronger immuneoppressents like Imuran, Planquil, and etc......there are several out there and what might work on one person does not work on another. For instance, several on this list are taking (or have taken) Remicade. It works wonders on some but when I tried it, I almost died from it. It is not for everyone. This is a long, tiresome, road to getting the right meds figured out for someone, so please be patient and stay in there fighting....... Again, welcome to our family.........I hope I have helped a little or at least given you something to think about and ask the Doctor about. Please keep us updated on Loretta and BE THERE for her. That really makes a difference! Hugs, Darlene NS Co-Owner/Moderator IVIG infusion > My name is Jerry,and new to this support group.My wife Loretta found out > she has sarcodosis last year,and its been a tough battle ever since.At the > Cleveland clinic she had a test done where it came back that she has nerve > damage and now he wants her to have a Ivig infusion,which he said will > have to be done every three weeks or so.She is always so exhausted and > tired all the time,and complains of chest pain and her legs hurting.Was > wondering if this infusion will help that much,or if there is a medication > that would work as well.I guess this procedure could last around 6 hours.I > know she is getting really depressed about being so tired all the time,and > nothing seems to work.Have any of you had this infusion treatment,and does > it seem to help?? Guess were needing some insight on this whole matter.She > was always so active before. > I would really appreciate any feedback. > > Thank you !! > > Jerry Nulk > > > > ------------------------------------ > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > 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...
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