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Only 2 Medications left

Hey everyone, my name is Bethany and im new here. I decided to join because I really could use some extra support as well as advise. So here's my story for anyone interested. Be prepared its long and probably pretty boring to most. I just need to let it out, even if no one reads it. Ya know

When I was 15 I started to get sick. I was sick all the time. Chronic fatigue, stomach cramps, nausea, vomiting, diareia, weigh loss, then weight gain then weight loss. It was so frustrating to say the least. I went to many doctors but was told the same thing time and time again, "there's nothing wrong with you" its all in your head, your just a hypochondriac or my favorite, your just depressed". So years went by of this and eventually I just stopped going to the doctor. It wasn't getting me anywhere. Although I did find myself depressed after some time. I thought maybe they're right.

So jump forward about 8 or 9 years. At this point I'm now a mother of two. My daughter whom is 4 and a new little baby boy. Life was normal. Well my normal anyway. Until 3 months after my sons birth when I got dissintary and was sicker then I'd ever been. I lost 60lbs in a matter of 2 months. After that it was like all my other crap decided to intensify. I became sicker and sicker. Always being tired and weak. Even still though no doctor could give me a reason. So I just tried to keep moving forward as best I could.

In the next several years I would have 2 more children and many miscarriages. My 3rd child was born 8 weeks early and my 4th pregnancy had many complications. Both times after giving birth I would get horribly sick. Finally I had enough of no answers from my doctors and decided to do my own research. That's when I learned about Crohn's Disease. I took all my findings to my doctor and demanded to see a GI. Well within 2 weeks time I had my appt, had a colonoscopy and was finally diagnoised with Crohn's.

Since then it's been even more of a battle and I thought it would have gotten better. First 2 meds they put me on gave me pancreatitis. Landing me 2 hospital stays. One for 3+ weeks and another for 6+ weeks and I left with a feeding tube that stayed in for another 4 weeks.

After that it was remacaid, which I became highly allergic to. Then Humira until I move to a new country and my insurance would no longer cover it. So then they tried a couple more things all of which I either became allergic to or just weren't working at all for me. My crohn's has spread from my small intestine and colon through allot of my large bowel and now in my esophagus. Recently my insurance finally approved Humira. So I started that backup. But within 3 weeks I had an allergic reaction called serum sickness. That was the worst of all my allergies by far and I pray I never go through that pain again.

So then what's left? I ask my GI and he says well there's only have 2 medications left available for you. Both being biological instead of immune suppressants. Also neither have as good of results as Humira or remacaid.

In my journey of madness I've also been diagnosed with Raynauds, Fibromyalgia, Chronic Anemia, HS, Chronic Pancreatitis and I've had 4 blood test that are ANA Positive and on the high positive. Chronic Migraines and Seizures. I'm currently being tested for Lupus. Which is so frustrating because of how hard it is to diagnose. Those are only my medical problems. Believe I have developed many mental problems as well over the years.

So how do I find the positive outlook on what seems to be such a bleak over all situation? What happens if these last 2 medications don't work or I become allergic to them as well?
I have tried many of different life style changes. From diet and exercise, to mental and spiritual. Giving every change a good amount of time to take affect with no really positive results. I'm sad frustrated and allot of times I find myself doing the "why me's". I just don't know what to do to make my health much better if even at all. Last week I had a mediport placed in to help with my infusions since my veins are all but gone due to my Raynauds and many IV's hospital stays and infusions. So at least I now have that peace of mind. One poke every time from here on out.

So that's my story. Sorry to all that made it to the end of this. I know it's been ridiculously long.
 
I'm sorry you have had so much difficulty in finding a path to remission. What are the two biologics left to try? I presume they may be some of the newer ones like Stelara or Entyvio. In any case, one strategy you may wish to discuss with your GI is the possibility of taking an immunosuppressant such as azathioprine or methotrexate along with the new biologic when you start with it. This will have two beneficial effects - it will provide greater control over your Crohn's and thus increase your chances of remission, and it will also reduce the chances you will develop antibodies (allergy) directed against the new biologic.

Also, the good news for the future, is that there is a solid pipeline of new Crohn's drugs in various stages of clinical trials that will be coming on the market in the next few years - more biologics plus a whole new class of drugs called JAK inhibitors. Most of these drugs will help with your other autoimmune symptoms as well.

So even though things are rough now, there is reason for optimism.
 
Thank you for your reply and yes those are the 2 that I have left. I am unable to take any steroids because I'm allergic. I've also become allergic to remacaid humira and cimzia. So it leaves me quite limited. Entyvio I believe is the newest medication in on. I've only had one infusion. I had to have My mediport put it. So it took a minute to get back on something for my Crohn's.
 

Maya142

Moderator
Staff member
Yes, the two options let would be Stelara and Entyvio. There are some patients who do poorly on anti-TNFs but very well on Stelara or Entyvio. Yes, there is MUCH more data with Humira and Remicade. But they have also been around the longest, so it's natural that there is more data.

My daughter has Crohn's - I don't. She has been on basically every biologic except Stelara. She had success with anti-TNFs like Remicade and Humira for her Crohn's. Ironically, she got drug induced Lupus (positive ANA, positive for anti-histone antibodies) from Entyvio after only a few infusions. So if you are being tested for Lupus, drug induced Lupus should also be considered.

She had NO side effects at all with Remicade or Humira.

I'm mentioning that because I wanted to point out that response to meds is very individual. So while you may not respond to Remicade or Humira, that doesn't mean you won't respond to Entyvio.

There are two other anti-TNFs used for IBD. Both anti-TNFs - Cimzia is approved for Crohn's and Simponi for Ulcerative Colitis. My kiddo has been on both for Crohn's - Simponi worked well for her Crohn's despite it not being approved for Crohn's yet. She was given the dose used for UC and it took about 3 months, but she did very well on it from a Crohn's perspective.

Simponi is available in both injection and IV form - the injectable form is the one approved for UC. That may be an option for you to try if Entyvio does not work. Additionally, one of the JAK inhibitors - Xeljanz - has recently been approved for UC. So that may also be an option.

My daughter has many of the same issues you have had - Fibromyalgia, Raynaud's, drug induced Lupus, chronic anemia etc. She also became severely underweight and has a permanent feeding tube. She also has severe arthritis - a form of inflammatory arthritis called Ankylosing Spondylitis.

It has been a very tough journey, so I sympathize. I hope things turn around for you soon!
 

my little penguin

Moderator
Staff member
^^^yeah that
Ds had an allergic reaction to remicade
But was fine with humira for many years
He started Stelara last August
It took a while but seems to be working for his Crohns

Entivyio seems to have a better track records for UC than Crohns
Stelara works for some woth Crohns but not others

We were told Ds next option would be Simponi since he has Juvenile Arthritis as well

There are new drugs in the pipeline so always keep up hope

Do you have an allergist?
Different forms of steriods have different molecular structures
We were told for my non ibd kiddo that even though he had an allergic reaction to prednisone
Dexamethasone should be different enough to not cause issues
Not saying this is your case but an allergist might be able to help

Both entivyio and Stelara take close to 6 months to work
So a bridge therapy maybe needed

Have you used een ?
Exclusive enteral nutrition (formula only no solid food )
It’s as effective as steriods to induce remission in kids at least

Ds was dx at age 7 and now is close to 15
He has done een many times for 6-8 weeks instead of steriods

He drinks neocate jr orally (amino acid based elemental formula )

Good luck
 
I’m assuming both azathioprine (imuran) and mercaptopurine (6MP) gave you pancreatitis since I had that same reaction. Have you tried methotrexate which could be used in combination with the entyvio or stelara? I hope you will be able to find something that helps you.
 

Maya142

Moderator
Staff member
Yes, Methotrexate may be an option if you haven't already tried it. I have also heard of doctors using other immunosuppressants - Tacrolimus for example. It's not usually used for the long-term but it may be if you don't have other options.

There are also other IL-23 inhibitors in the pipeline - I know Risankizumab is one in phase II trials. Upadacitinib is a JAK inhibitor also in trials for IBD.

Here is some info about what's in the pipeline: http://online.ccfa.org/site/DocServer/4_ccfa_talk.pdf?docID=32249
 
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