help please :-(

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poohbear37
Regular Member


Date Joined Feb 2007
Total Posts : 98
   Posted 11/2/2007 3:16 PM (GMT -7)   
So I am beyong confused, frustrated and now just depressed...I have been being treated for my ulcerative colitis for 7+ months. Over the summer i started developing really extreme fatigue and the most painful symmetrical joint pain I have ever experienced. I finally got my doctors to believe me that I thout it may be the remicade..they did an ANA test it came back positive. Then i got sent to a Rheumatologist. He did more tests and I came back with a positive ds-dna test. he told me the only way to know for sure would be to come off teh remicade for 3-6 months and see if the symtoms disappeared. Today, two days later, my Gastro calls me and said i shoudl stay on the remicade and that the Rheum. sent him a letter saying he did not think my clinical symtoms were due to remicade or significant. excuse me but what the is wrong with these people?!?!?!? I feel absolutley crazy and they keep contradicting myself. I really dont know what to do.
~*~Kristyn~*~
Age - 24
Diagnosed w/UC at age 18
Fibromyalgia & Chronic Fatigue at age 16
Acid Reflux & Drug Induced Lupus 10/07 (from Remicade)
Current Meds - Asacol (12 pills daily)
-Nexium 40mg/day
-Canasa suppository (1000mg at bedtime)
-Lexapro (10mg)
-Prednisone (40mg when flaring)
-Multivitamin, Aloe Vera Gel


Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4392
   Posted 11/2/2007 4:25 PM (GMT -7)   
Sounds like it is time for a second opinion...if I were you, I'd find another Rheumatologist. And I'd ask the new Rheumatologst how to tell the difference between Remicade-induced Lupus and Primary SLE from looking at blood tests. I thought I read somewhere that the drug-induced Lupus had a specific antibody associated with it, or that the anti-ds-dna antibodies weren't present in drug induced Lupus, but I could be wrong.

Also, you might also ask your GI doctor about switching to Humira - it does the same thing as Remicade, but supposedly has no mouse protein and thus is less likely to cause problems.

Take care,
-Razzle
Gluten & Sulfite Sensitivity, Multiple Food & Inhalant & Medication Allergies, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD (Lupus?), Osteoporosis, Anemia, Very Low Lymphocyte Counts (T-Cells & B-Cells), malabsorption/malnutrition, etc.
Meds:  Pulmicort, Injectable Vitamin B12, Herbs, Nutritional Supplements, Essential Oils, Homeopathy.


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 11/2/2007 5:19 PM (GMT -7)   
Hi Kristyn, I am sorry you are going thru all this, it is so frustrating when we are in dx limbo. I agree with Razzle about getting a second opinion and even a third and fourth until you get answers you are comfortable with. Before I was dx with gluten sensitivity I saw MANY GI's and had MANY MANY procedures and tests done. I also saw 3 rheumy's before I found one that would look beyond my outward appearance and REALLY listen to me and my symptoms.

Don't give up, hang in there! yeah
Stacie

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's 1999, Celiac Disease (AKA: gluten sensitivity) 2003, Raynaud's 2004, Lupus 2005 and Sjogrens 2006
Meds: Imuran, Plaquenil, Flexeril, Piroxicam, Levoxyl, Folic Acid, Lortab (as needed), Magnesium Citrate and magic mouthwash (as needed for mouthsores)


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 11/2/2007 6:25 PM (GMT -7)   
Kristyn,
If it's remicade induced lupus, the lupus will go away once you've been off the remicade for a while.  Drug induced lupus is not permanent.  So that might be worth a shot.  If you go off it and you're retested and everything comes back normal, then you know it was the drug.  I'd get another rheumy as well.  Tell them this conundrum and see what they say.  Or at least, talk to the rheumy you have now and see if getting off the drug for a while would be a good idea. 
 
I hope you get the answers you need,
 
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

33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, neutropenia, thrombocytopenia. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 11/2/2007 8:58 PM (GMT -7)   
Kristyn - I developed a positive anti-dsDNA titer at the 7 month mark in my Remicade treatment also. I felt like I had the worse case of flu in my life - joint pain everywhere and the extreme fatigue you describe. The good news is that it went away. Both my GI and rheumy felt that it was safe for me to continue on Remicade because the symptoms had begun to subside. I remained on Remicade for another 2.5 years. During that time my rheumy followed me closely to make sure I was not developing any organ involvement associated with lupus.

I have blood work drawn every four weeks and a U/A. I continued to have a positive anti-dsDNA titer but had no other symptoms. Approximately 56% of people getting Remicade develop this antibody from Remicade. Very few people ever develop lupus.

That said, you must decide the course you want to follow using the information provided by your doctors. My GI and rheumy are tops in their fields and I really trust them. I did do extensive research on the subject and felt from the research that they were acting in my best interest. I have to be on a biologic because of my joint disease. However, your situation and symptoms could be very different than mine. If you are not confident in what your doctors are telling you, by all means get a second opinion.

Also, should you want more info about this anti-dsDNA situation with Remicade, I have lots of articles I could link for you if you like. I'm getting ready to go on vacation mid-week but will check this weekend and see if you have other questions.
Ides
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, small fiber peripheral neuropathy, avascular necrosis, diffuse connective tissue disease, Sjogren's Syndrome ?
 


poohbear37
Regular Member


Date Joined Feb 2007
Total Posts : 98
   Posted 11/3/2007 2:29 PM (GMT -7)   
Thank you all for your responses.
 
Its so hard when all of the people in my life (family) are seeing me in so much pain and are telling me not to ever touch remicade again and then my doctors are telling me to continue it.  It is not an easy decision to make.  I hdo have a consult set up at Massgeneral hospital at the end of the month but am scheduled for remicade next saturday....
 
I will talk to my doctors this week.  I guess i just want a rational for why they think i would be better off continuing the treatment. Unlike your experience, my symtoms have been severe for about 4 months now.  I would really appreciate some links to articles if you get a chance.
 
from all of the research i have done it looks like th epositive ANA plus the positive DNA plus my symptoms would suggest drug-induced lupus...but who knows??? thanks again....
 
 
~*~Kristyn~*~
Age - 24
Diagnosed w/UC at age 18
Fibromyalgia & Chronic Fatigue at age 16
Acid Reflux & Drug Induced Lupus 10/07 (from Remicade)
Current Meds - Asacol (12 pills daily)
-Nexium 40mg/day
-Canasa suppository (1000mg at bedtime)
-Lexapro (10mg)
-Prednisone (40mg when flaring)
-Multivitamin, Aloe Vera Gel


Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 11/3/2007 3:54 PM (GMT -7)   
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