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Medical Forum / Diseases and Disorders / Lupus / January 2007More Rutuxan updates :)
Good afternoon all, it has been awhile since I posted. I hate to sound ike a salesman, because I am not, but I am about11-12 weeks out from my last Rutuxan treatment and I am doing great. I know there have bee two fatalities recently because of it but for me there are no reactions that are negative. I just got my latest labs back and they are the best they have been in 3 years. My ANA is down by more than half, my DNA is a low positive, one more point and it will be negative. My renal failure is back to stage 2 from stage 4 and best of all I have yet to have joint pain since I had the first Rutuxan treatment. I know that this drug is not for everyone and that there are serious side affects that are possible but talking to a good doctor about it and weighing the odds are what I did. I would do it again in a heartbeat. That will be my last rant about the new drug. I hope everyone is doing good and had a great holiday season. Like most I think I over did it a little and needed a vacation from my vacation. I almost forgot, I am not in a flare right now but I still seem to have the sun sensitivity, does anyone else have this problem? I do not know if I should expect to be super photo sensitive for the rest of my life or does it come and go? -Steve After 25 years of lupus I am still getting more sun sensitive. Sure hope it doesn't happen to you. Good luck ruth > Good afternoon all, it has been awhile since I posted. I hate to > sound ike a salesman, because I am not, but I am about11-12 weeks out [quoted text clipped - 21 lines] > > -Steve Don't know if the sun sensitivity will go away or not. Seems like my body is so acclimated to dim lights I'll never be able to go back. Especially my eyes... You know it's bad when you can't find ivory makeup light enough (problem for the ladies LOL). Good luck, ask your doc if there's anyway to retrain your body? I'm intersted in seeing how the results are long term. So please do keep bragging on your wonder drug LOL. > Don't know if the sun sensitivity will go away or not. Seems like my > body is so acclimated to dim lights I'll never be able to go back. [quoted text clipped - 4 lines] > I'm intersted in seeing how the results are long term. So please do > keep bragging on your wonder drug LOL. Regarding the Ivory make-up, have you tried Avon, I always use their really pale foundation, it is really pale!! Regards Janet PS I am not a rep!! lol  Signature-- Snake Lady I'll have to give that one a whirl. Truth is, if I weren't so cheap I could probably find a shade in a brand like Chanel. But Avon is a great idea thank you. > Regarding the Ivory make-up, have you tried Avon, I always use their really > pale foundation, it is really pale!! Regards Janet > PS I am not a rep!! lol Well, Ladies I can honestly say I have no advice to give on the makeup. :) It is kinda ironic that I am dark complected and always tanned darker in 2hr than my wife did in the entire summer. So my winter tan (only tan) is still pretty dark. I guess I am lucky in that aspect. -Steve Yes, Steve, This is a sensitivity the rest of your life. It has to be treated like a super allergy. The ultra violet rays damage the DNA in the cells in your dermis; the resulting antigen-antibody autoimmune complexes move thru our bodies and clog up joints, glands, livers, kidneys, etc thus causing inflammation. This goes on in a cumulative way all our lives. I'm now 66 and Boy! Do I regret the lying out in the sun days of my teens! My lupus seems to be in remission or at least inactive but I now also have Sjogren's Syndrome (AI attacks tear glands, salivary glands and all mucous membranes like the GI tract) and Autoimmune Pancreatic Insufficiency (AI causes pancreas to digest its own tissue, causes duct problems and blockages) and diabetes II. Nancy F, SoCal Christ, Chorus, Cats, Computers > Good afternoon all, it has been awhile since I posted. I hate to > sound ike a salesman, because I am not, but I am about11-12 weeks out [quoted text clipped - 21 lines] > > -Steve Thank you for the info Nancy. So I am going to assume that once I get my Kidneys under control that there will always be something? Seems to be a pretty good list of illnesses that Lupus goes hand in hand with. I truly love being in the sun, it is the hardest thing for me to give up. But we all do what we must. I gave up drinking and smoking with no problem, but the sun is another story. Last summer I stayed inside alot and my wife just doesn't understand and thinks I am a home body but I try hard to stay inside or in the shade as much as I can. IT is also very hard with a young son in T-ball. I bring an umbrella to the games and everyone kinda looks at me funny. I am a pretty big scruffy guy and the site of me weilding a sun umbrella must be amusing but I will admit that I am learning to understand the constraints of my new life. Sorry didn't mean to ramble, seems to another problem of mine lately.... Hope everyone is doing well. -Steve > Thank you for the info Nancy. So I am going to assume that once I > get my Kidneys under control that there will always be something? [quoted text clipped - 14 lines] > > -Steve Steve, I understand where you're coming from. I also wear the big & tall sizes and live in Arizona. People look at me a bit strange as I sport my enormous brimmed hats, long sleeved sun blocker shirts with hand covers while the thermometer hovers at 115 degrees. Especially on the golf course! The ironic part is I have found I am more comfortable dressed this way! Another thing I have noticed is my sensitivity seems to cycle. There are times when riding in the car even in the winter the sun coming through the windows feels like little needles poking my skin. I keep a towel to cover up when it gets unmanagable which also gets a few strange looks. Here's hoping you can continue to cope... George I bring an umbrella > to the games and everyone kinda looks at me funny. I am a pretty big > scruffy guy and the site of me weilding a sun umbrella must be amusing > but I will admit that I am learning to understand the constraints of my > new life. The image of you with your umbrella brought back thoughts of my sun tricks early on. I am a fairly large lady with strong shoulders and never below 170 lbs. Now picture me with a flowery parasol wearing a complete black & white soccer referee's uniform!!! That makes ME laugh these days! (My kids were embarrassed) One time I wrapped up in shiny puffy athletic jackets and long pants and sat in a lawn chair critiquing the refs (my DH and our good friend). Only thing was, I didn't yet know that the UV rays come through clouds like they aren't even there!!! I paid with a sunburn on my face & hands and a flare of at least a week of misery. Boaz Robinzin on the Lupus List (Acor.org site) soon set me straight! Sun block should become your constant companion. I use mine as much as regular hand lotion. I realized my hands are really exposed when driving . Crashing today - worked 4 hours picking up old clutter. Folds were coming to take my 7' recliner couch and we are planning to get new chairs. PfffT! 8^P It is so big they couldn't get it our withour movcing the entertainment center. But the result is: I have no more spoons!!!!!!!!!!!!!!!!!!!!!! I almost fell aseep in Jim's dinner tray at the rehab center - yuck! Some nasty institutional stew. GAG. ;^). Nancy F, SoCal Christ, Chorus, Cats, Computers |
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