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Update: On my daughter Holly.

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Crohn's Disease
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Posted 2/23/2009 2:58 AM (GMT 0)
Tom - while my CD is considered mild, remember that I was initially placed on Remicade because of my spondyloarthropathy with severe, wide spread enthesopathy. Upon further evaluation I was diagnosed with ankylosing spondylitis. Remicade is one of the biologics used to treat AS. At the time I needed to go on it, Humira had not yet been approved for use in AS [it is now]. Enbrel was first used in AS but is not as effective in treating CD so the choice was to go after both the AS and CD with the Remicade.
Posted 2/23/2009 3:21 AM (GMT 0)
Hi Tom,

My reading shows that Remicade, Humira and Cimzia are all felt to be equally as effective. As Ides has written Remicade has been around the longest since it was used in Rheumatoid Arthritis patients prior to Crohn's patients. THere are more studies out on Remicade that prove it closes fistulas. I don't think it means it is necessarily more effective for fistulas- its just been around longer and there is more data. This would be a good question for your GI. As far as I know it is available in Canada.

Chickenpox is in the herpes virus family and the same antivirals that are used for shingles and herpes can be used for it.

I certainly understand about the pills. It is an aggravation for the teenagers- they don't like to be reminded that they are sick. Don't forget to give her the calcium and vit D for her growing bones while she is on the Prednisone.

Keenca
Posted 2/23/2009 3:42 AM (GMT 0)

Hi Keenca,

I think the Remicade is being recommended partially because of the fistula that led to the abscess she had. Although, they assure me it's not an issue, she did say that it could cause a recurrence. I can't imagine going through that again. 

I have had her taking Calcium and D, reluctantly. She does skip it regularly. She hates the taste of the chewable. I'm still trying to find a capsule, pills were too big and chalky.

As you can tell she's fussy about pills. Fortunately she doesn't mind needles at all.

Tom.

Posted 2/23/2009 3:49 AM (GMT 0)

keenca said...
Fallcolors,



I asked an Infectious Disease Specialist what to do if my son's immunity to the chickenpox vaccine should wear off. He suggested that he carry the antiviral drug acyclovir (or Famvir or Valtrex) around and take it if exposed to the virus. Its not a problem for him now since he still has immunity. Even without chicken pox immunity we still would have started the biologics. What else could we do? You just have to have faith and hope there isn't a problem.

I didn't realize acyclovir could be 'carried around'. I'm 32, pox naive, and am on MTX soon to start Humira. I think I'll have to look into this....
Is acyclovir something that can be taken more than once?

Mike
Posted 2/23/2009 4:17 AM (GMT 0)

Rider Fan,

I just looked acyclovir up, and it states that it can be used for Shingles or Chicken Pox. In immunosuppressed patients they recommend IV Acyclovir. Here's the link:

http://www.rxlist.com/zovirax-drug.htm

Tom.

Posted 2/23/2009 4:21 AM (GMT 0)
Hi Mike,

Yes, acyclovir is an antiviral that can be taken anytime to combat a virus in the herpes family. Just as an antibiotic combats bacterial infections, these meds fight viruses. It is a prescription med in the states and can be 'carried around' and used until the expiration date. I would definitely look into this while traveling. Your doctor may not agree, but what if you were exposed to the chickenpox and couldn't reach anyone to get a prescription? What is their plan if you are exposed to the chickenpox while on Humira? You should ask.

Keenca
Posted 2/23/2009 5:10 AM (GMT 0)
Tom, it might be worth finding a specialist with an interest in Crohn's and paediatric nutrition before experimenting with the fish oil. I'm in Australia and hesitate to tell you what brand and dosage I'm on... and besides, I'm an adult and Holly is still in her teens so the dosages may need to be different.
Posted 2/23/2009 4:12 PM (GMT 0)

keenca said...
Hi Mike,

Yes, acyclovir is an antiviral that can be taken anytime to combat a virus in the herpes family. Just as an antibiotic combats bacterial infections, these meds fight viruses. It is a prescription med in the states and can be 'carried around' and used until the expiration date. I would definitely look into this while traveling. Your doctor may not agree, but what if you were exposed to the chickenpox and couldn't reach anyone to get a prescription? What is their plan if you are exposed to the chickenpox while on Humira? You should ask.

Keenca

Hi.  My plan has been if I'm ever exposed to chicken pox is to get to the ER and say, get me get me the anti-viral RIGHT NOW!!!

But I will phone a pharmacist tonight and ask about this.

thanks!

Mike

Posted 2/24/2009 10:06 PM (GMT 0)
Hi ...

I was 1st diagnosed when i was 17 and on 200mg of steroids to control eventually it settled down.. Last year (24 years ) i suffered huge flare up and was on massive of steriods. pentasa.. Then Imfliximab was suggested... Myself and my parents were worried about the side effect reactions as anyone would be... But it was that or surgery as all other drugs i had suffered reactions too... So hey worth a shot... Anyway at the start of the treatment in October my imflammatory markers were 80 - 100 my last blood test 4 weeks ago should them being 3 .... I have been told i can stay on the drug as a maintenace dose... My last infusion took 2 hours then waiting around for 1 - 2 hours to make sure of no reaction... my personal opinion is for 4 hours every eight weeks its worth it ... I cant remember a time when i felt this well and normal... I am also on pentasa at 2000mg which works along side the infliximab.. Because of reducing the immune system i fully expected to get the flu... I have to say i havent had a cold since being on it.. But i will say i caught shingles in december but that has cleared up fine as gp treated it agressively... The humira i think was the other option my consultant suggested but i thought this was the one they dont like using on young adults/children due to the fertilty side effects but im not 100 % on this ... Not sure if any of this helps!!
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