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Medical Forum / Diseases and Disorders / Lupus / May 2004Maggie
Got your e-mail. Love you big time ( ( ( Maggie ) ) ) J Love you more, girl! : ) Maggie update soon. Hi Guys! I saw the rhuemy yesterday, my favorite (he) doc. He talked to me for sooo long about my illness & lack of dx. Do I have Cogan's Syndrome, I asked? He doesn't know & I agree with that. Too hard to tell. He just said that I'm likely dealing with at least 2-3 AI diseases & could still end up with Lupus. I'm back up to 25mg of MTX & if that doesn't do it, then I'm to lower it to 15mg & start the Sulfasalazine. He was impressed with that one "Nina." I fessed up & told him it was you that told me though. : ) He also mentioned to the student doctor & myself that so much needed to be learned about AI hearing loss. They can't figure out which antigens & such are causing it. He assured me I'd be first on his list if a study became available. I told him about the Enbrel study, but he agreed that it would have to be given during a flare & it would only stop the hearing loss from progressing. Then I dropped the bomb. I asked him for eye drops so that I could actually get to the eye doctor when & if my eye(s) became inflamed. He said he was leary. I countered! Maaaan, I can't even open the door when it happens & they want me to come up to the office, get my eyes dialated & spend 3 hours examining me, just to tell me that my eye is inflamed? Then I have go home in the sunlight with dialated eyes & no pain relief? Then HE dropped the bomb: Have you seen my daughter up there, he asked? I almost said a bad word....my face turned 3 colors of red & I said, "uhhhhh, no, but I LOVE the doctors up there....I just HATE the process!" He gave a hearty laugh, patted my shoulder & told me to take 20mg of prednisone the next time it happened & then go see his daughter! lol! <sigh> That's workable...sure glad I asked. : ) Take care & Hugs4all, Maggie Hi Maggie, Hope the 25 mg MTX will do the trick, or that you'll at least be able to tolerate the Sulfasalazine well. Prepare to pee yellow! Post on how it works for you, ok? Have you been able to start folic acid? It's extra important if you are going to be on both MTX and SSZ. Glad you seem to have a good doctor. Hopefully he'll be able to get you into some study. Maybe if he could pinpoint one of your diseases to be ankylosing spondylitis or psoriatic arthritis, you could get enrolled into some Humira study? Nina Hi Nina! Thank you! I can see the difference in the increase of MTX already! All symptoms are gone now. I did start the Folic Acid in early March & I feel much better now. What a difference a milligram makes! : ) He did say he believed I could have Psoriatic Arthritis, but then countered because of the hearing loss. Then said I could have a few different AI diseases, so I'm back to no dx. : ) Seems safer that way sometimes, I guess. How are you doing with your increase of MTX? Did you ACE the test? Oh man! I keep thinking butt-crack pants, whenever I see your name. lol! Hugs, Maggie -------------------------------------------- Nina Wrote: Hi Maggie, Hope the 25 mg MTX will do the trick, or that you'll at least be able to tolerate the Sulfasalazine well. Prepare to pee yellow! Post on how it works for you, ok? Have you been able to start folic acid? It's extra important if you are going to be on both MTX and SSZ. Glad you seem to have a good doctor. Hopefully he'll be able to get you into some study. Maybe if he could pinpoint one of your diseases to be ankylosing spondylitis or psoriatic arthritis, you could get enrolled into some Humira study? Nina Sounds good to me Maggie! Hopefully you'll get less nausea over time. My MTX increase helped the ulcers and vascular stuff a little, but didn't do a thing for my spondylitis, so my RD switched Enbrel for Humira, which helped really quickly. I was able to walk without crutches already after the first injection. My sed rate went from >100 to 20 in 6 weeks and everything else up or down until it was normal. Very good stuff! Apart from your ear disease, we have lots of similar symptoms. Sometimes I wonder if we have the same AI diseases? 2 of mine are pinned down, but the third one isn't quite figured out yet. Could you tell me more about your eye problems? I've been having some problems with my left eye and my RD has referred me to an eye doctor. The test went well, but I have 3 more to go start Monday. Speaking of butt crack pants, as a punishment for making fun of the girl with the butt crack pants, my new pants ripped in the butt when I was in school the other day. Probably why they were on sale, though. Sigh. Nina Gosh Nina, that is good news. Great to be walking without crutches and to see the difference so quickly. That is so funny about your pants. That does sound like a gotcha! BJ-Sk. Canada > Sounds good to me Maggie! Hopefully you'll get less nausea over time. > [quoted text clipped - 16 lines] > > Nina LOL! I laughed sooo hard at your butt ripping adventure that I was forced to change my seersucker pants & wear something non tearable. I knew I'd get a karmatic rip after keeling over with laughter at you! So sorry, I really am. Must have been mortifying. Okay! <sigh-chuckle-sigh> I'm so glad the Humira is working, Nina! I would love to try something, if only in a study. They've never mentioned them to me though. Simply because of the co-pay, I'm sure. The MTX is a good one though. Scares me alot less than Imuran & yet, I'd rather take Imuran as it worked so much better. It always put me in remission much quicker. Maybe I will switch back when our national insurance kicks in. My left eye became inflamed, for the first time, after a long regimen of prednisone. I had taken 60mg for like 5 weeks, trying to save my hearing. My body became so used to the long term use that when I went off of it, the eye became inflamed. (so did my inner ear) It looked like conjunctivitis, but I could not open a door, even on a cloudy day. The pain was intense, even inside. They have never said if it was Uveitits or not though. They continue to say auto immune. I had a coupla bouts with it after that. One was mascara, another was dust from the Fall leaves. My next prednisone experience caused the right eye to become inflamed. I later got an ingrown eyelash & it flared big time. My symptoms before each flare were an inability to focus & an increasingly dull headache. I still have this sometimes, but I think it's turning out to be just like any other part of a flare. It's gonna act up, even though it may not become full-blown, you know? They just give me prednisolone eye drops & it goes away in time. What is your eye doing? Hugs, Maggie Hi Maggie, I had to read that one twice. At first I thought you had to change your pants for a reason other than tearing them. <g> > LOL! I laughed sooo hard at your butt ripping adventure that I was > forced to change my seersucker pants & wear something non tearable. I [quoted text clipped - 31 lines] > Hugs, > Maggie >LOL! I laughed sooo hard at your butt ripping adventure that I was >forced to change my seersucker pants & wear something non tearable. I'm glad you added the last 5 words :)  SignatureAndy Taylor [Chair, N E Lupus Group] See http://www.northeastlupus.org.uk for more! > LOL! I laughed sooo hard at your butt ripping adventure that I was > forced to change my seersucker pants & wear something non tearable. I > knew I'd get a karmatic rip after keeling over with laughter at you! So > sorry, I really am. Must have been mortifying. Luckily both my pants and my panties were black, so it didn't show too much unless someone'd watch my butt very closely (at least this is what I keep telling myself). > I'm so glad the Humira is working, Nina! I would love to try something, > if only in a study. They've never mentioned them to me though. Simply > because of the co-pay, I'm sure. I've seen that both Enbrel, Remicade and Humira have assistance programs for US patients without insurance, f?r example Humira has a Medicare assistance program. They talk about it every now and then on alt.support.arthritis. Would you be eligible for that? You'd have to get a diagnosis first - if only for this purpose, though. > My left eye became inflamed, for the first time, after a long regimen of > prednisone. I had taken 60mg for like 5 weeks, trying to save my > hearing. My body became so used to the long term use that when I went > off of it, the eye became inflamed. [...] Hmm..light sensitivity is one of the hallmarks signs of iritis (aka anterior uveitis). Also, the pupil on the affected eye often gets smaller. Does your eye do that? Iritis is treated with pred drops and, in some cases MTX, anyway, so at least you're on the right treatment already if it's iritis you have. > What is your eye doing? It becomes moderately painful and slightly light sensitive every now and then, plus that I had veins on the outer side of the eye swell up. The weird thing is, often during those "episodes" my pupil dilates (in opposite to iritis). I've also developed lots of floaters. Both Humira and pred have helped, but I've still had some minor flares. Despite that I have the tissue antigen (HLA-B27) that is associated with iritis, the symptoms don't fit. My RD didn't say what it could be, but has referred me to an eye doctor. Nina Hi Nina! Your eye does sound a lot like mine. They did notice that my pupils were different sizes, but for the life of me, I cannot recall if the affected eye had a larger pupil or a smaller one. The doctor mentioned a brain tumor to the student doctor. Upon losing it, she assured me that the pupil variation wasn't enough to suspect a brain tumor. However, they still wouldn't say. Nobody wants to give me a name. The programs you talked about for Enbrel & Humira...yes, I would most likely qualify. The dx will not be easy, however. I would think that if I kept having continuous eye problems, then they would work to get me on something that would keep the damage to a minimal. Maybe even if they had to take a wild guess at a dx. Please post what the eye doctor says, k? And....ahem....keep wearing pants that coordinate with the undies. :-Þ Hugs, Maggie You two just couldn't help yourselves, couldya? :-Þ I suppose I fell right into that one though.... |
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