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04-11-2013, 07:41 AM   #1
CrohnsMom2
 
Join Date: Apr 2013
Location: Newfoundland, Canada
New to the forum

Hi everyone, just wanted to introduce myself here on the parents forum. I am mom to a 24 yr old son with CD. He was diagnosed at 12 and was doing pretty good for the first 6 years. He started a really bad flare at 18 and has had some good and bad times since then. He had been on pentasa, imuran, methotrexate and when the flare started he went to Remicade. It was a scary time as he had dropped a lot of weight. At 6'2" he was 123lbs. Once he started the remi he improved immediately. He kept getting better over the next couple of years, put on a fair bit of weight, felt the best he had ever felt. It was great to see him live his life so healthy and happy!He came off Remi and had another great 8 or 9 months while just taking imuran. Then had another flare, tried to go back on remi but had a severe allergic reaction on the second infusion. Went on to Humira after that which worked for about 2 years then stopped. He went on prednisone for what was supposed to be a few months but ended up being 8 months. His GI added methotrexate while on prednisone and that is what he is on at the moment. I have been reading a little about LDN, as it seems to have a lot of potential and few side affects (from what I've read).
Right now Michael is doing okay. I know he doesn't feel as good as he did on Remicade but he takes the bad with good.
Sorry for the long post, guess I should have joined sooner!
04-11-2013, 08:13 AM   #2
Tesscorm
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Join Date: Jun 2011
Location: Ontario

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Welcome to the forum

I'm glad Michael's stablized but sorry he's not feeling as well as he has in the past.

I do encourage you to research LDN. I had wanted my son to try LDN before moving on to the stronger meds but his GI had concerns re inflammation and we've just started remicade.

If you haven't seen it yet, there is a subforum for Treatments and another for LDN... you'll find lots of info there. There are some members who have had success with it and, with the minimal side effects, certainly worth a try. However, I'm not sure if you can use it together with methotrexate???

I'm not sure where you are located but, if in the U.S., cimzia is another option. It has not been approved in Canada for Crohns, not sure about the UK or Australia but is approved in the U.S. Again, there is a subforum for Cimzia too.

Feel free to ask lots of questions! There's so much knowledge and support from the members here!! It's been invaluable to me!

Good luck
__________________
Tess, mom to S, 22
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
04-11-2013, 08:33 AM   #3
Mylittlesunshine
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Join Date: Dec 2012

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Hi crohnsmom2

Welcome to the forum, this is a great place
For advice, support information
And meet new friends.
__________________
Currently on EN
Neacate LCP
Multivitamin
Folicacid
Iron
Dalavit
Calcium sandos
Dyclavlovin
Inhalers x3
Pred tapering
04-11-2013, 08:38 AM   #4
Farmwife
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Join Date: Apr 2012
Location: Michigan

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Hi and welcome to this forum.

I'm glad he's doing ok. It's just such a shame he's not doing great.

Paging EthanClark
She and her son have IBD. She started LDN for herself and IF Ethan needs to go that route she might do it for him

We also will go with LDN for Grace.

HUGS
__________________
I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
04-11-2013, 09:05 AM   #5
CrohnsMom2
 
Join Date: Apr 2013
Location: Newfoundland, Canada
Thanks all for the welcome and the encouraging words and I wish the same to all parents on here for their kids. I am still finding my way around the forum although I have been reading a bit here over the last couple of years! Michael does a lot of research himself and ultimately the decisions are his as to the treatment he gets for CD, but as we mothers(and fathers) know....we still need to get as much info as we can. I swear it couldn't be any worse if we had IBD ourselves and I'm sure most of us would prefer that. Tesscom, I added my location, we are in Canada.
I think I ask Michael's GI every time we go if there are any new approved treatments for CD...and I'll keep doing that. Michael is very wary of the biologic's because of the side effects although he has been on both Remicade and Humira. That is why I am interested in LDN, it seems to be a promising option with few side effects.
04-11-2013, 09:26 AM   #6
Devynnsmom
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Join Date: Jan 2012
Location: Toronto, Ontario
Hello and welcome to the forum. This is a great place for advice, support, information and a place to vent. I found this forum about a year ago and don't remember what I did without it! lol
I have an 11 year old daughter, Devynn who has Ulcerative Colitis.
__________________
Samantha, AKA Devynn's mom


Devynn (12 years old) was *unoficially* diagnosed with Crohn's disease in Dec 2009.
That diagnosis was changed to Ulcerative Colitis in Mar 2012.
Pentasa ASA Dec 2009-Mar 2012 (dosage tweaked a couple of times)
Mezavant Mar 2012- Nov 2012
Sulfasalazine-Nov 2012
04-11-2013, 09:33 AM   #7
EthanClark
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Location: Provo, Utah

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FarmWife thank you for the page I have been on LDN for about 5 weeks now and haven't noticed any bad side effects at all. I am 32 years old and have had Crohn's since 16 but wasn't diagnosed until 30. I have tried entocort, prednisone and pentasa but have never done the big drugs as I have chronic bronchitis and they scare me so I decided to try LDN first to see if that would do the trick. I also have Rheumatoid Arthritis and the LDN seems to be working for that as well, alot less pain. At this point with the LDN I still have bad days for my crohn's but I also have the stricturing disease and wonder if my pain is mostly from those. I will keep taking LDN and hopefully won't need anything stronger. We will also try it next for my 3 year old son if EEN doesn't put him back into remission before we do any other drugs for him too. I like the little side effects and I truly believe this drug can work wonders. Good luck
04-11-2013, 10:02 AM   #8
Jmrogers4
Moderator
 
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Welcome to the forum,
My son is in his 10th month of LDN and the results have been fantastic. It takes a while to work, we started to see improvement after 3 months. He had scopes at 8 months and there was no sign of active disease at that point. It is not a cure and we take each day at a time but we have mostly good days at this point.
I encourage you to look at the LDN section under treatment, many of your questions can be answered there.
__________________
Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
04-11-2013, 02:02 PM   #9
CrohnsMom2
 
Join Date: Apr 2013
Location: Newfoundland, Canada
Thanks Jmrogers4, I will have a look at the treatment section for LDN. I've done a little reading on it and was excited about the results I read.
04-11-2013, 04:28 PM   #10
AZMOM
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Just wanted to say welcome )

J.
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Julie

Mom to Claire - 11 going on 17

Dx JRA age 3, Crohn's age 6
Acute transverse myelitis at age 5

Started IVIG September 2016
Started Tacrolimus October 2016
Neurontin 100mg twice daily
Folic Acid
Calcium/D supplement
Daily Vitamin
Daily Probiotic

No more Enbrel, Stelara, Methotrexate, Allopurinal or 6MP
04-13-2013, 12:03 AM   #11
Crohn's Mom
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Join Date: Mar 2011
Location: Florida

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Hi CrohnsMom2, I have no experience with LDN, but I wanted to say welcome to the forum!
__________________
~T~
Mom to Gab (20)
DX: Crohn's 2/2010
and Austin (18)
DX: Crohn's 7/2013
04-13-2013, 05:19 AM   #12
Dexky
To save time...Ask Dusty!
 
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Join Date: May 2010
Location: Kentucky

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Welcome CM2! I hope if he tries the LDN it works wonders for him! I'm a little curious as to why he came off Remi when it was going so well??
__________________
Mark, father of EJ

EJ dx w/ Crohn's 12/09
PSC 3/10

No more 6mp
Currently in the Humira Club
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