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SmurfyShadow
Veteran Member


Date Joined Dec 2008
Total Posts : 2386
   Posted 12/30/2008 5:28 AM (GMT -7)   
Hi, I'm new. So new, this is my first post. Recently I got diagnosed with WG (Wegener's), an autoimmune disease. Anyhow, where would I post a question about that? Reason why I am asking here is because I am aware Lupus is an autoimmune disease as well. Any help would be greatly appreciated...

FW
Regular Member


Date Joined May 2007
Total Posts : 477
   Posted 12/30/2008 7:44 AM (GMT -7)   
Try:

http://www.angelfire.com/ga/wegeners/

I googled it and this is what came up.

Good Luck!
Take care,
Fran

Dx: Lupus, sjogren's, celiac, severe allergies.
Daily Meds: Plaquenil, Zyrtec. Aciphex, Nasacort, Prozac, Ambien CR.
Daily Supplements: Calcium, B-100 Complex.
As Needed Meds: Epinephrine, Benadryl, Proventil, Xopenex, Tylenal, Darvocet, Prednisone.


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 12/30/2008 9:17 AM (GMT -7)   
Hi Smurfy,
 
I think you can post here with us.  Wegener's is a form of vasculitis which is one of the main Lupus symptoms.  So many of Wegener's symptoms are the same as Lupus.  Were your doctors thinking you had lupus in the early diagnosis stage?  Do you have kidney or lung involvement?  What is your course of treatment?  If you are going to be on Azathioprine and/or Prednisone,  you've come to the right place!  We can answer a lot of your questions about meds. I think you'd do well here!  
 
I'm sorry for your diagnosis.  I really hope your treatment plan gets you into a remission very quickly. We'll do our best to help you with your questions.  We're a very supportive group, so if you need someone to listen, or a place to vent frustration, etc, we're here for you.
 
Blessings,
Ginny 
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 12/30/2008 6:25 PM (GMT -7)   
Hi. I just wanted to add my welcome to you. I'm sorry to hear about your diagnosis. Like ginny said, we are a very supportive group and will do our best to try to help you out. Take care and I'm glad you joined us.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; UC 2008; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



SmurfyShadow
Veteran Member


Date Joined Dec 2008
Total Posts : 2386
   Posted 12/31/2008 2:51 AM (GMT -7)   
Chuckles, you guys knew my own medication..that was great!Azathioprine AND Prednisone are the meds. Imuran (azathioprine) is at 200mg daily and prednisone is down to 20mg (orginally was at 100mg but I'm being weened off). Anyhow, The doctors told me origannly no drinking. My question, its my birthday this coming weekend (go figure) and I was wondering why the doctor said I couldnt drink. Also if I only drank a couple drinks with light vodka and soda if it would hurt? My friends want to take me out. I am not much a drinker, and cant stand taste or smell of alhocol, so usually when I do drink its vodka with about a 1/16 inch, rest of the glass is the juice/soda. Has anyone drank whilst on azathioprine and prenisone? What happens? Why do doctors say not to drink on it?

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 12/31/2008 9:21 AM (GMT -7)   
Hey Smurfy!
 
I have no idea why they would tell you not to drink while taking these meds.  Are you taking anything else?  I'm wondering if there is a condition of Wegener's that makes drinking a no-no?  Do you have any liver involvement or blood clotting issues?
 
 
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


SmurfyShadow
Veteran Member


Date Joined Dec 2008
Total Posts : 2386
   Posted 12/31/2008 10:54 AM (GMT -7)   
No liver or lung damage. Lets see medications I take
 
Imuran
Prednisone
Zantac
Prilosec
Protonox
Advair
Cingulair
Calcium + Vitamin D
Tri-Nessa
Oxycodone/Apap
Metformin
Promethazine
Rolaids (heh)
 
Oh and my rescue inhaler during asthma attacks

SmurfyShadow
Veteran Member


Date Joined Dec 2008
Total Posts : 2386
   Posted 12/31/2008 11:19 AM (GMT -7)   
Oh, DX: Wegener's, Necrotizing Gramultous Inflamation of eye, Diabetic type 2, PCOS, Asthma, ADHD, Asperger's Syndrome, migraines, Benign Heart murmer, acid reflux, lactose intolerant

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7018
   Posted 12/31/2008 8:23 PM (GMT -7)   
The reason we do not drink on these medications is they are h*ll on our livers. Add an alcoholic drink to an already stressed liver and very serious consequences arise. Our livers are then stressed by our disease, our medications (almost all of them), AND the alcohol -- it just isn't worth risking our lives for.

Sorry to be so short about it, but the liver is very important to keep safe

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, Seasonal Affective Disorder, Depression, Herpes Simplex 1
Plaquenil, Prednisone(15 6mg), Piroxicam, Xanax, Trazodone, Boniva, Wellbutrin, Valtrex

Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions

"Life is far too important to be taken seriously." –Oscar Wilde, 1982

 


SmurfyShadow
Veteran Member


Date Joined Dec 2008
Total Posts : 2386
   Posted 12/31/2008 11:04 PM (GMT -7)   
Ohh ok. So while we are at it...got any cures for the hanging over the toilet due to side effects? The promethizine is only somewhat working.

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 1/1/2009 10:42 AM (GMT -7)   
Hi Smurfy,
 
Yeah, the Imuran is making you feel yucky isn't it... That will go away.  Your body just needs time to get used to it.  Have you tried Gravol for the nausea?  If you're having a lot of trouble, just give your pharmacy a call and tell them what's going on.  They'll have some suggestions for you that won't interract with your meds.
 
Happy New Year!
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
 
Moderator for the Lupus and Fibromyalgia forums


SmurfyShadow
Veteran Member


Date Joined Dec 2008
Total Posts : 2386
   Posted 1/1/2009 6:23 PM (GMT -7)   
havent tried gravol, will give anything a shot. i go wednesday to doctor. i hang my head over so much thaat i usually get dehydrated and win an iv in er and zofran being pushed in the iv. i usually wind up iin er 2-3 times every 2 weeks. i started the imuran in mid november.

HAPPY NEW YEAR too!

pst ginny, phillipians 4:13 is my fav verse. I swear, if it wasnt for Him and my congregration I dont know what I would of done. He's even brought me and my family closer (I'm the stray sheep for being non demonational Christian and family Roman Catholic). All of this is a real test on us isnt it? I wonder at times how and why but then I remember the verse and book of Job (my other favorite).

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 1/1/2009 7:16 PM (GMT -7)   
You're vomitting that much?  Hmmm.  Did this all start when you began your meds?  It takes 6-8 weeks for Imuran to take effect and for the negative side effects to go away.  That is if your body will tolerate them.... I'm glad you see your doc on Wednesday. 
 
Have a lovely birthday weekend!!  scool smurf tongue smilewinkgrin
 
I have 3 other verses of scripture that give me a lot of hope and strength.  2 Corinthians 4:8-9, 1 Peter 4:12-13, Peter 1:8-9. 
Yes, living with these diseases is a huge test on our faith.  I have also grown closer to God through all of this. I know that part of why I'm here and why I have AI diseases is to help others through support and encouragement. We were never promised that life on earth was going to be easy!  But the destination we're headed to is!!!! In the meantime, let's lift each other up!
 
Have a good night!
 
 
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
 
Moderator for the Lupus and Fibromyalgia forums


SmurfyShadow
Veteran Member


Date Joined Dec 2008
Total Posts : 2386
   Posted 1/1/2009 8:05 PM (GMT -7)   
Naseau was before the medication, it was assumed it is how my body is reacting to the stress of everything. Vomiting started after a few days on Immuran. Drug reaction to something maybe? It gets so bad I do the sweating, shaking, feeling like I'm gonna collapse, dry heaving, abdonial (stomach) cramping with it.

SmurfyShadow
Veteran Member


Date Joined Dec 2008
Total Posts : 2386
   Posted 1/1/2009 8:20 PM (GMT -7)   
I'm such a dork..forgot to mention im on oxycodone/apap 5/325mg for pain (forgot to mention it as I litterly only take it when needed took my 2nd one in 2 weeks just now)

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 1/1/2009 10:03 PM (GMT -7)   
Imuran takes 2 weeks to start giving you the bad "stuff".  So a couple days after taking it is too soon. I don't think that's the cause.
 
I had the feeling that your Oxycodone might be the culprit. I checked the side effects for it and here's what I found.. Your nausea, vomitting, etc, falls in the the less severe category. Some people are super sensitive to these types of meds.  Even one or 2 doses like you've taken can be too much if you're suseptable to being sensitive or allergic to them. Definitely inform your doctor okay!
 
Also, I found out why you aren't supposed to drink alcohol! It's the Oxycodone! I read that mixing alcohol with this med can be fatal. Very serious side effects can occur.  So that's very likely why your doctor said, "No drinking."  Good to know! You'll have to order virgins this weekend cry  

Oxycodone side effects

Get emergency medical help if you have any of these signs of an allergic reaction: hives; difficulty breathing; swelling of your face, lips, tongue, or throat. Call your doctor at once if you have any of these serious side effects:
  • shallow breathing, slow heartbeat;

  • seizure (convulsions);

  • cold, clammy skin;

  • confusion;

  • severe weakness or dizziness; or

  • feeling light-headed, fainting.

Less serious side effects are more likely to occur, such as:

  • nausea, vomiting, constipation, loss of appetite;

  • dizziness, headache, tired feeling;

  • dry mouth;

  • sweating; or

  • itching.


I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
 
Moderator for the Lupus and Fibromyalgia forums


SmurfyShadow
Veteran Member


Date Joined Dec 2008
Total Posts : 2386
   Posted 1/1/2009 10:11 PM (GMT -7)   
Allergies: Cipro, Doxycycline, z pack, flagyl (all antibiotics there) , dogs, bees, molds, cats, pollen, dairy, some plastics, bandaids, silvadine (ointment they use to keep infection out fresh wounds or operative spots), motrin, asprin, salicylates (pain relievers)

SmurfyShadow
Veteran Member


Date Joined Dec 2008
Total Posts : 2386
   Posted 1/1/2009 10:14 PM (GMT -7)   
All wierd things been happening: severe acid reflux (worse than normal), muscle cramps and spasms and locks (i think its prednisone). Other things: loss apetite, weight gain, water retention, swelling in fingers, itchyness in feet and legs, really dry skin, weird "Bruise" color stretch marks, naseau, vomiting, losing handfuls of hair, forgetfullness, tiredness (took to taking naps)

PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 1/2/2009 11:17 AM (GMT -7)   
I suffered a severe allergy to Imuran within 30 minutes to an hour of taking it. Uncontrollable vomiting and diarrhea that lasted for hours and left me sprawled on a cold bathroom floor unable to get up by myself. I don't know if the symptoms of a drug allergy can be similar to yours, but I believe that the first thing I would do is to check with my pharmacist. It might be unrelated to the Umuran, but I'd check to be sure - drug allergies aren't to be taken lightly.
SLE, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis, gluten intolerance.

prednisone, cellcept, plaquenil, celebrex, neurontin, synthroid, triamterene, ultram, actonel, tri-est, imitrex, cymbalta, tricor, acifex, multivitamin, calcium w vit D, fish oil, aspirin


SmurfyShadow
Veteran Member


Date Joined Dec 2008
Total Posts : 2386
   Posted 1/2/2009 2:32 PM (GMT -7)   
Ok I'll do that. Thanks everyone for hlep.
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