17, weight gain help and biologics

[Charlier50]

Hi all. My name is Charlie and I'm 17 years old. I've just been diagnosed with Crohn's and enemia 4 weeks ago. I was very pale, couldn't get out of bed for college and was going to the toilet 5+ times per day and a few times at night. Since being diagnosed I've had a colonoscopy (or whatever it was, the camera one anyway) and it was definite Crohn's. My doctor doesn't believe I will need surgery as the scaring is not too deep. I've been set on a 6 week steroid course and on another drug called mezivant.

I've been told the next stage is to decide on treatment. One being biologics where the doctor said I would inject myself every 2 weeks with the drug or another drug (I can't remember the name) where I would take tablets and should help to decrease my symptoms.

My question is how long before I start to put on weight as I still eat a lot but it seems to just shoot straight through me. The second question is, what are biologics Like? Any experience with them?

Thank you, hope everyone's day is going well!

 

[Clash]

My son started the biologic, remicade, when he was 15 years old. It is an infusion so you go to the clinic the nurse hooks you up to IV and you chill for aboit 2 hours. It was probably my son's fave biologic because lab work and GI appts were done at the same time.

At 16 or 17 he switched to Humira which is probably the biologic your doc mentioned that is a shot. He started at 1 shot every two weeks after his loading doses of 4 shots on day 0 and 2 shots 2 weeks later. So after about 6 mos of 1 shot every 2 weeks it was determined he needed to move up to 1 shot a week because it wasn't getting him to remission. The shots were painful more painful than the weekly methotrexate shots he already gives himself but kids do em much younger so he touched it out. They've changed the formula so that's it not painful any more it's released in Europe but not sure about the USA

Anyway, humira didn't work so he's 20 now and is on Stelara shots, another biologic. Hoping it works.

He works, goes to school, still social so the meds don't affect him in anyway. Some people can be tired right after the biologic dose but others arent.

 

[ronroush7]

Welcome. It will probably depend on how long it takes to get your disease under control before you start gaining weight. Everyone responds differently to medicines. I have been on several of the biologics including Cimzia, Remicade, Stelara and Humira. For me, personally, the best experience has been with Cimzia. Wishing you the best.

 

[Charlier50]

Thanks guys, just a few weeks ago i thought i was all alone, great that we all unite!

My main question is. once I've finished my steroid period, what is the most common treatment at first? The reason for asking is because my doctor said i could go straight for biologics but I've read that they should be taken when other drugs had no affect?

Many thanks again ps. gone down to about 3 toilet breaks per day instead of 5+!:thumright:

 

[ronroush7]

I think a lot of doctors do a combination therapy like imuran or Methotrexate along with the biologic. I could be wrong.

 

[Charlier50]

Okay thank you! ill keep you guys up to date. i have a Blood test this week at some point to see if my iron levels have increased. Then in about a month a follow up appointment to get me on the treatment ASAP!

Thanks again

 

[ronroush7]

Looking forward to hearing from you.

 

[Tesscorm]

Hi Charlie,

My son was also diagnosed just before his 17th birthday.

The steroids are meant to quickly eliminate inflammation and take you into remission, the next meds will be maintenance and will be lifelong (whether the same one or as Clash said, you may eventually need to change the maintenance med).

I think you are asking about immunosuppressants vs. biologics. Starting with immunosuppressant (imuran, azathioprine, etc.) and only moving up to biologics is considered the bottom up approach. Starting with biologics is the top down approach. More and more GIs are moving to a top down approach - why not start with the best treatment?? Also, studies are showing there is a greater cancer risk, especially with young males, when using an immunosuppressant. Although, this comment isn't meant to scare you!!! The risk is still very tiny!

Re the weight gain... My son did exclusive EN (enteral nutrition) to induce remission instead of steroids. This treatment is to drink only nutritional shakes for a time period to give your gut a chance to rest and heal. During the 'exclusive' period, my son was drinking 3000 calories per day. After the six week exclusive period, his GI had him continue with the shakes at half dose (1500 calories/day) for the next two years (in addition to his regular diet). My son was underweight when diagnosed (5'10", 125 lbs), over that two year period, my son grew approx. 2 inches and gained approx. 50 lbs. of 'healthy' weight (ie body developed, gained muscle, etc.). Now, he continues to drink one to two Boost shakes most days - he finds it convenient when he's in a rush and hungry, they replace unhealthy snacks and maintains a level of nutritional intake. You may want to consider adding some nutritional shakes to your diet to help you regain some weight and add a boost of nutrition.

My son has been on remicade for approx. 4 years. He has had no problems... he goes every 6 weeks for his infusion. Aside from the infusion, he's good to go! Attends university, plays hockey, has travelled with friends, goes out for dinner/parties/clubs, etc.

A couple of things to consider:
- humira is convenient as you can give yourself the shot anytime/anyplace. But, it is painful, responsibility will be on you to remember to pick up prescription, have the shot and regularly go for lab tests (blood tests).
- remicade is only once every six - eight weeks and lab tests are done at the same time (and it doesn't hurt). But, each infusion takes approx. 2-3 hours, the schedule is fairly strict (you can only go off by a few days from your regular cycle) and you'll need to plan ahead when planning vacations, exam dates, etc.

Ask where the remicade infusion centre is and their schedule (ie are they open Saturdays, evenings??) and see how that fits into your schedule??

Gotta run now but if you have any questions, let me know...

 

[CYY]

Hi Charlie,

I'm CYY and I was diagnosed last December, after more than a decade of IBD symptoms (constipation from 2005-2007, diarrhoea from 2007-2016, bloating and abdominal pains from 2015 onwards).

After diagnosis, I went through 9 weeks of EEN. Technically, I should only be on EEN for 6 weeks, but my doctors chose to extend the period because I was still experiencing abdominal pains and they wanted more time to let my gut heal. I took 36 scoops of Modulen (1500 calories) every day and was able to gain 1.9kg by the end of 9 weeks. I know it may not sound like a lot, but I was severely underweight before EEN and now I'm only underweight. I did not manage to grow in height at all, however.

EEN has also solidified my watery stools (maybe a little too much). I used to have 4-5 BMs in a day (up to 7 if I'm in a flare), but now I only go once every 2-3 days. The downside is that I'm back to having constipation now, but the good thing is that all my BMs are now fully formed.

After EEN, I started on a immunosuppressant called Azathioprine, while reintroducing some foods like potatoes and chicken breast meat, and doing part-time EN. I was still able to gain a couple of hundred grams of weight every week everything was good so far.

Unfortunately, I was unlucky and fell into the 3% of population whereby oral Azathioprine caused me to develop pancreatitis, and so had to stop taking it immediately. I lost whatever weight that I had gained through EEN during my week-long hospitalisation. At the same time, I ruled 6-Mercaptopurine (6-MP) out from my list of available medications as well, which my doctors described as being the "evil cousin of Azathioprine", sharing some 70% of its chemical composition. However, I need to be quick to point out that most people respond well to Azathioprine and 6-MP, and that the benefits of immunosuppressants far outweigh the side effects (however scary these side effects may sound).

Thus, I was given the choice between Methotrexate (MTX), Humira and Remicade. I ended up going for the bottom-up approach and choosing the weekly subcutaneous injections of MTX, a type of immunosuppressant which I had just started 3 weeks ago. The reason I chose it was because 1) I can develop antibodies to the other two biologics and that means that those are one-time options, 2) biologics such as Remicade and Humira are really strong stuff, so they should only be used when I desperately need it, and 3) they are very costly. MTX, on the other hand, does not cause the formation of antibodies, so it can be used, in theory, for an indefinite period of time. So far, the side effects of MTX for me have been nausea and fatigue, but I've been able to gain back some weight since my hospitalisation.

All in all, I'd suggest trying out EEN if you're looking to gain some weight. They're nutritious (albeit awkward tasting) specially formulated milk that have almost no side effects. I admit that it does require tons of perseverance to stick to this regime religiously, but it's just as good as taking the steroids. And the good news is, if you're in a flare and all else fails, you can always come back to it. I'm sure that there're many people here who have their own success stories to share about EEN too.

If you're considering what type of maintenance medication to go for, I'd suggest trying out immunosuppressants before moving on to the stronger biologics. Azathioprine and MTX are good choices to begin with. Crohn's is an unpredictable disease, and complications can occur anytime. I think it would be better if you can save your big guns for those times of emergency.

Ultimately, the decision is yours to make, but I hope this guides you in your decision somewhat.

I wish you all the best in your Crohn's journey.

Cheers,
CYY

 

[my little penguin]

Biologics are no being used first(top down ) for many kids
They work really well
Ds takes humira and mtx for Crohns
He is 13
He also drink neocate jr (elemental formula)
To help keep his growth and weight normal

 

[Charlier50]

Thanks everyone for the responses! It helps out a lot knowing what other people's experiences are!

My doctor has now said that I am to start humira after my steroid course is over. I think I'm going to go for the pen style needle as I'm not the best with syringes!