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Thread: Grumblings

  1. #11
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    Wow, I'm so sorry to hear how bad you are feeling.... I hope you have told the doc, if you think it's from the Imuran! I hope those effects are only very temporary.

    I'm SURE you made the right decision about the gala, given how you would have felt about doing it, how uncomfortable you would have felt. You are not the grinch!! Anything where you have to plaster on a smile doesn't sound like what any of us needs.
    Anne, dx'ed April 2011

  2. #12
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    Quote Originally Posted by annekat View Post
    Wow, I'm so sorry to hear how bad you are feeling.... I hope you have told the doc, if you think it's from the Imuran! I hope those effects are only very temporary.

    I'm SURE you made the right decision about the gala, given how you would have felt about doing it, how uncomfortable you would have felt. You are not the grinch!! Anything where you have to plaster on a smile doesn't sound like what any of us needs.
    I agree with Anne, but I am worried about your migraines. You need to be seen for these.

  3. #13
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    Carrie ...did you tell yr dr. about the headaches.just because the test says u can take it maybe this is a side effect you should mention to him. And maybe it's best yr not around a bunch of people right now..you don't want to catch something.lol
    And about the weight thing,one of the drs. in the kidney group I see is into holistic medicine and nutrician (sp) instead of all the medicine so I went and had a consult with her Tues, nite. Now I am almost 5'2" and now way about 117 lbs ...gained 15 lbs through all this and she told me that alot was from the preds and also this is a inflamatory disease and some of the food we eat can cause inflamation.She did a bmi test on me and I am 42% body fat!!!!! and told me to stop eating sugar, wheat, corn,soy, dairy,meats..the things I can eat are freash or frozen fruits,veggies,nuts,seeds. I called my boyfriend when I left crying ...2 days before Thanksgiving and I can't eat. Well I threw that theory out the window.I am gonna watch more ( but not starve ) and start up a more excerise regiment along with yoga.
    Sorry to ramble ..hope u start to feel better and really talk to the dr. about yr headaches and stop worring about yr weight. Stress and worring only makes things worse.
    Life isn't about how you survive the storm, but how to dance in the rain !

  4. #14
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    Quote Originally Posted by carriej22 View Post
    Hi folks,

    Thanks for all your advice and kind words. I wasn't sure how to reply, still not quite sure... I ended up turning down the gala this year, I just told them the truth - I am going through treatment for an autoimmune disease and I just am not feeling up to it. Not only would I have to deal with the stares from people I haven't seen since last year, but I just don't feel like plastering on a smile and doing it to be honest.. lol.. Call me the grinch, but I just can't deal with it this time around.

    I am in a bit of a rut. I am over the weight thing sorta because once again I am feeling lousy. Really puts things in to perspective, when I feel good I start fussing about weight and appearance and how this disease has made me ugly. However the past week has been terrible. My doc had me TMPT (or tpmt.. I dont know.. something like that) to see if I could take Imuran and I can. So he put me on that.. AND YAK.. Hair is falling out, monster migraines... Like I'm talking about massive migraines that make me gag when I move they are so bad. Hopefully this goes away....
    Sounds like you are making some progress in accepting some things. It is good that you have the enzymes needed to safely take Imuran but if you are still having serious side effects, there can be other issues that warrant attention. I have been on generic Imuran for almost two years now and do not having any discomfort from it or notice any thing other than my liver enzymes are more elevated so I had to cut back on my cholesterol meds.

    Did you start with a small dosage and have a small taper up to therapeutic levels? I started at 50 mg and went up 50 every two weeks till I got to 200 mg daily. I had lab work weekly during this time too to be sure I was handling it OK? All our meds have risks and side effects so the goal is to find the ones that work best for you with least amount of problems. I hope they can find some thing for you that works well without lot of bad side effects. Best wishes for better health.

  5. #15
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    I started at 125mg and that's where I still am. Other than the hair loss and headaches I am not having any vomiting or anything (which is the one my doc seemed to be concerned about).

    I go for bloodwork on Monday, so I guess I will find out what's up then. I am also going weekly, but since I started on a Saturday and the hospital where I live was overbooked I could not get in until Monday - So like.. 10 days on it.

    My eyes have been bloodshot for a little while too (since before imuran) but appear to be getting worse.. Wonder what is going on there.

    I'm just getting so frustrated. At this point, I feel like if I didn't care so much about my health I would be in a way worse state. I fight for every test, every appointment, every issue. I wish I lived in a bigger city with more available to me medical wise. It takes so long to get an appointment anywhere. For example I am seeing an eye specialist for my eyes on Dec 4. I want in NOW.. I am terrified of going blind with this disease, especially since my eyes have gone south on me a few times during this disease. God only knows what will transpire between now and Dec 4. There is only the 1 specialist in my city. He is a lovely man, but I understand he is swamped.

  6. #16
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    I know what it is like to wait and wait and wait Carrie. I am in a small city and find just the opposite now that my Wegs doc is right in my town. Just hang in there and continue to be persistent and fight for what you need. At the end of the day you have to be your own best doc, no way around it.

    So how is your vision? Is it getting worse?
    Phil Berggren, dx 2003

  7. #17
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    Preserving your vision is important and one can quickly go blind from Vasculitis damage. I was told at my first meeting with my Wegs doctor after discharge from the hospital that I needed to find an eye doctor that would see me within 24 hours if I had any serious changes in my vision. His comments made a big impression on me when he said you lost your hearing from the Wegs so we want to try preserve your vision. I found a local optometrist near my nursing home at the time who assured me she would see me in those circumstances in less than 24 hours and get an opthamologist involved for treatment (surgery) if that was necessary. Blood shot eyes can mean many things. I had scleritis as one of my first signs of Wegs before I had been diagnosed and I got treated by an optometrist who worked with my opthamologist who I saw regularly (every four months).

    I would make sure they knew your diagnosis and symptoms and ask about their emergency services.

    I don't think bigger cities always provide better services. I have a relative who almost died in the ER room of one of NYC biggest hospitals and had to fly back home very sick to get the care needed to save his life. I know when I was first admitted to local hospital with Wegs my daughter (big city girl) could not believe how quickly they did all the tests and put me into a room. Unfortunately they had no idea of what I had or how to treat it so I almost died, but I did get in quickly. And once they figured out my Weg diagnosis they had me transferred to a bigger hospital within a few hours where I could get proper treatment.

  8. #18
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    My eyes are nasty. They have been "goopy" since diagnosed with wegs. 3 months ago when I seen the ophthalmologist he said there was NO sign of vasculitis in eyes and I was relieved. He wanted to see me every 3 months to make sure it stayed that way (which is the appointment coming up on the 3rd). However one of the first things that happened to me was light sensitive, blurry bloodshot eyes. My eyes are not hurting me, but I do find myself rubbing them a lot and they are definitely blurry. HOWEVER - saying this I am not seeing double anymore like I was when I was on high doses of pred.

    It's complicated because I wear glasses (used to wear contacts, but too scared to irritate my eyes now) and I do have bad vision. I don't get up to pee during the night without putting on my glasses. So it's like.. is this normal vision loss (my prescription tends to go up every few years) or is this wegs related. Sometimes if I blink and rub my eyes my vision clears. I just find I'm always picking at them or digging at them because they're irritated.

    On the plus side I did lose 10lbs.

  9. #19
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    After Wegs but before the cataract surgeries I had an extremely strong prescription for myopia. I couldn't look for my glasses till I found them. The meds missed up my vision a lot with excess dryness causing excess tears much of the time. The dryness would cause a film that sometimes got a bit better with blinking but generally returned with a few minutes or seconds. Artificial tears helped me a lot to reduce irritation caused by dryness. Refresh was the brand my optometrist recommended.

  10. #20
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    At your age, you may be getting a bit more myopic with the passage of time. I remember that my vision didn't fully stabilize until I was in my early 40s. Shortly after that, I developed the need to wear bifocals. My concern for you would be if your eyes continued to be bloodshot and you continued to have a lot of matter forming in and around your eyes. I'm like you - very nearsighted. I don't think I can think without my glasses on.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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