Guest guest Posted November 11, 2008 Report Share Posted November 11, 2008 Bonnie and group; Bonnie no I havent been on retoxin. I just wanted to tell you how sorry I am that you have, let me abrivate it cause its long. UCT. yess that sounds like an aweful thing to have. I have RA, bursitis, and osteo A. I use to cry a lot. I am taking effexxor for crying and it helps so much. still cry when I watch a sad movie or hear a sad story. My heart goes out to you. We have to give up so much when these deseases attact us. You will be in my prayers. please don't be scared, I am sure it will be alright. gentle hugs Clora ********************************************************** > > Hello all, > As some may recall, I have been diagnosed with undifferentiated > connective tissue disease... (wow thats a mouth full) For me that > means I have symptoms of several connective tissue diseases with out > enough proof in my blood work to actually name any of them... My main > symptoms seem to be that of RA with small mixtures of some others.... > I have been taking Enbrel for the last nine months,as well as > methlytrexate and planquinile > > Anyway, I am finding it extremely difficult to type (thats why I > haven't been on lately) and even harder for me to hold a pen for > longer then one to two sentences. Unfortunately I'm a paper pusher > and I must type 5-6 page summaries on a daily basis as well as take > notes during interviews (no computer available for the interview).. I > had a doctors appointment today where I explained my increased > discomfort, and he suggested having me drink the liquid methlytrexate > in Orange juice (instead of pills and increasing the dose) and also > begin taking Retoxin through infusion. > Ahhh! Another new drug, I'm just scared to death of what I'm doing to > my body that all I seem to want to do is cry... > > Please, has anyone been put on Retoxin, or know of anyone on it... > Did everything go alright... The only thing I can think of on the > positive side, is that I will no longer have to take weekly > injections... I really hate needles! Oh, and also that it may help > me more... but the last point is not a certain.... Ugh! > > Thank you all again for being here for me... The only thing better > would be having you all here in my living room so that I don't have to > type....lol > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2008 Report Share Posted November 12, 2008 Clora, Thank you so much for your heart felt reply... I am having a terrible time dealing with this problem... Just the change in everyday activities is nearly hell on earth. I am equally sorry that you have been dealt an equally poor hand... I don't think its fair that anyone has to deal with these issues.. If I cant pull myself out of this, I will look into the effexore. I guess noone on this site has had to take retoxin... That is so strange...Thanks again... Bonnie > > Bonnie and group; > > Bonnie no I havent been on retoxin. I just wanted to tell you how > sorry I am that you have, let me abrivate it cause its long. UCT. > yess that sounds like an aweful thing to have. > > I have RA, bursitis, and osteo A. I use to cry a lot. I am taking > effexxor for crying and it helps so much. still cry when I watch a > sad movie or hear a sad story. My heart goes out to you. We have to > give up so much when these deseases attact us. You will be in my > prayers. please don't be scared, I am sure it will be alright. > > gentle hugs > Clora > ********************************************************** > > > > Hello all, > > As some may recall, I have been diagnosed with undifferentiated > > connective tissue disease... (wow thats a mouth full) For me that > > means I have symptoms of several connective tissue diseases with out > > enough proof in my blood work to actually name any of them... My > main > > symptoms seem to be that of RA with small mixtures of some > others.... > > I have been taking Enbrel for the last nine months,as well as > > methlytrexate and planquinile > > > > Anyway, I am finding it extremely difficult to type (thats why I > > haven't been on lately) and even harder for me to hold a pen for > > longer then one to two sentences. Unfortunately I'm a paper pusher > > and I must type 5-6 page summaries on a daily basis as well as take > > notes during interviews (no computer available for the > interview).. I > > had a doctors appointment today where I explained my increased > > discomfort, and he suggested having me drink the liquid > methlytrexate > > in Orange juice (instead of pills and increasing the dose) and also > > begin taking Retoxin through infusion. > > Ahhh! Another new drug, I'm just scared to death of what I'm doing > to > > my body that all I seem to want to do is cry... > > > > Please, has anyone been put on Retoxin, or know of anyone on it... > > Did everything go alright... The only thing I can think of on the > > positive side, is that I will no longer have to take weekly > > injections... I really hate needles! Oh, and also that it may > help > > me more... but the last point is not a certain.... Ugh! > > > > Thank you all again for being here for me... The only thing better > > would be having you all here in my living room so that I don't have > to > > type....lol > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2008 Report Share Posted November 12, 2008 Hi Bonnie, currently I'm on enbrel. However I am a nurse in an infusion clinic where we give Rituxan. I've given it to about a dozen RA patients. None had immediate bad side effects. Most have made Rituxan their treatment (with methotrexate). However, we also have a ton of ra folks on remicaide that also do well. and orencia and tocilizumab and so on. We also give the rituxan to lymphoma patients typically they are the ones that have bad reactions (respiratory problems). All premedicated to help prevent the reactions but some still do react. The usually have very high lymphocyte counts. Knock on wood none of my ra patients have had bad reactions, but a few do take benedryl and or a steroid as a premed. Hope whatever treatment you choose does well for you Diane > > Hello all, > As some may recall, I have been diagnosed with undifferentiated > connective tissue disease... (wow thats a mouth full) For me that > means I have symptoms of several connective tissue diseases with out > enough proof in my blood work to actually name any of them... My main > symptoms seem to be that of RA with small mixtures of some others.... > I have been taking Enbrel for the last nine months,as well as > methlytrexate and planquinile > > Anyway, I am finding it extremely difficult to type (thats why I > haven't been on lately) and even harder for me to hold a pen for > longer then one to two sentences. Unfortunately I'm a paper pusher > and I must type 5-6 page summaries on a daily basis as well as take > notes during interviews (no computer available for the interview).. I > had a doctors appointment today where I explained my increased > discomfort, and he suggested having me drink the liquid methlytrexate > in Orange juice (instead of pills and increasing the dose) and also > begin taking Retoxin through infusion. > Ahhh! Another new drug, I'm just scared to death of what I'm doing to > my body that all I seem to want to do is cry... > > Please, has anyone been put on Retoxin, or know of anyone on it... > Did everything go alright... The only thing I can think of on the > positive side, is that I will no longer have to take weekly > injections... I really hate needles! Oh, and also that it may help > me more... but the last point is not a certain.... Ugh! > > Thank you all again for being here for me... The only thing better > would be having you all here in my living room so that I don't have to > type....lol > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2008 Report Share Posted November 13, 2008 Diane, Thank you so much for your reply... I'm glad to hear that others are getting this medication without terrible side effects... I am mostly worried about the PML (brain dysfunction) Had you heard anything about it? I was beginning to think that I am a guinea pig... I have a coworker that has JRA nearly all her life, and she hasn't heard of it or known of anyone else using it... That there was enough to cause me lack of sleep, and everything is down hill from there... It feels like double jepordy... Ugh! Being that I'm in what my doc calls a " gray area " he says I limited to my treatment and must follow a path... Well if my condition is so uncommon, I don't see how there is a path to follow. This is all very confusing and I just tend to get one headache after the next... Needless to say, your post did make me feel a little better... and for that Thank YOU! Bonnie > > > > Hello all, > > As some may recall, I have been diagnosed with undifferentiated > > connective tissue disease... (wow thats a mouth full) For me that > > means I have symptoms of several connective tissue diseases with out > > enough proof in my blood work to actually name any of them... My > main > > symptoms seem to be that of RA with small mixtures of some > others.... > > I have been taking Enbrel for the last nine months,as well as > > methlytrexate and planquinile > > > > Anyway, I am finding it extremely difficult to type (thats why I > > haven't been on lately) and even harder for me to hold a pen for > > longer then one to two sentences. Unfortunately I'm a paper pusher > > and I must type 5-6 page summaries on a daily basis as well as take > > notes during interviews (no computer available for the > interview).. I > > had a doctors appointment today where I explained my increased > > discomfort, and he suggested having me drink the liquid > methlytrexate > > in Orange juice (instead of pills and increasing the dose) and also > > begin taking Retoxin through infusion. > > Ahhh! Another new drug, I'm just scared to death of what I'm doing > to > > my body that all I seem to want to do is cry... > > > > Please, has anyone been put on Retoxin, or know of anyone on it... > > Did everything go alright... The only thing I can think of on the > > positive side, is that I will no longer have to take weekly > > injections... I really hate needles! Oh, and also that it may > help > > me more... but the last point is not a certain.... Ugh! > > > > Thank you all again for being here for me... The only thing better > > would be having you all here in my living room so that I don't have > to > > type....lol > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2008 Report Share Posted November 13, 2008 Bonnie I have heard of PML (progessive multifocal leukoencephalopathy). It is real and very uncommon. It is an infection in the brain and if caught early reversible. There are many drugs that can contribute to it, mostly monoclonal antibodies. That is why you have to be diligent about reporting infections and " new " symptoms ie dizziness, trouble with balance, eyesight, walking etc. At the infusion clinic I work at we have refused to infuse a patient and contacted her physician due to suspecting PML. Luckily her MRI was normal and I think it turned out to be an ear infection. All meds have risks and benefits and I believe if your doctor and nurses watch you closely the risks will be limited. Best of Luck Diane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2008 Report Share Posted November 14, 2008 Thank you so much! Just in this one post, you've eased my worries and a huge weight has been lifted... I'm still concerned, but I assume most people are when they are given a new drug... Thanks Bonnie > > Bonnie I have heard of PML (progessive multifocal > leukoencephalopathy). It is real and very uncommon. It is an > infection in the brain and if caught early reversible. There are many > drugs that can contribute to it, mostly monoclonal antibodies. That is > why you have to be diligent about reporting infections and " new " > symptoms ie dizziness, trouble with balance, eyesight, walking etc. > > At the infusion clinic I work at we have refused to infuse a patient > and contacted her physician due to suspecting PML. Luckily her MRI was > normal and I think it turned out to be an ear infection. All meds have > risks and benefits and I believe if your doctor and nurses watch you > closely the risks will be limited. > > Best of Luck > Diane > Quote Link to comment Share on other sites More sharing options...
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