Curious for input

[Novice]

So I've been thinking, dangerous I know.

For those who haven't see any of my posts; I have already tried the following meds
Humira, asacol, Azathioprine and remicade.

I was on remicade in about 2010 for 9 months, until I got really sick again and my Dr switched me to humira. I didn't do well with the humira bad side effects made it unbearable
We upped the aza to 200mg but in the summer found my crohns had progressed so after an antibody test were retrying the remicade.

Last Friday was my 5th maybe 6th infusion, because of being on it in the past I am already being premedicated with benadryl steroids and tylenol. However, Friday I still had a very scary allergic reaction.

Someone kindly suggested to me to try pre medicating with pred, however my doctor said something that got me thinking he said if I keep taking it he feels like he's setting me up to be allergic to this medicine which made me think the reaction is going to happen again at some point and probably be worse.....

my crohns isn't exactly typical, I've had your average flare of weight loss toilet trips etc, I've had flares of agony and no one knows the cause I've been hospitalized with arthritis a d inflamed eyes but no bowel problems I've scared the crap outta my doctors when I couldn't crap for 3 months lol my crohns likes to be difficult I'm sure you all get that but my crohns usually causes Constipation and pain. I've bee. Told surgery isn't the best idea for me either there is alot of crohns throughout small and large.... I'm not ready for that yet anyway not mentally there

So if I stop the remicade I know I still have cimzia to try....
My doctor absolutely will not prescribe methotrexate

So I'm thinking just because I don't Wana put all my hopes into cimzia working because I have a track record of meds not working for long I feel like I need to get myself a longer term plan....


Say I go on cimzia 12 months later that stops do I just hope there's some thing else available by then?
What else is there?
Are there trials? Would I even qualify for them with cimzia as an option still, would I qualify Considering I'm constipated and over weight lol. My gut tells me the stem cell research is onto something but I don't think I'd qualify....

I'm asking a lot of questions I'm sorry but the unknown is scary and not having a plan stresses me out.... I was doing so well I thought I was gunna graduate before any of this kicked off again lol.

Bless anyone who read all of that. Thank you

 

[KayleighMeek]

Hi,
I have been through similar with medications either not working or having allergic reactions to them. I started cimzia about 8 months ago and it has helped a bit, mainly helping with enteropathic arthritis, but still have some issues I am now on steroids to try and control things as well. It is worrying when everything you try doesn't work for very long but my GI has put my name forward for trials in the future even though we are sticking to cimzia for now so I kind of know what's going to happen. Each trial has a different criteria that you need to fit into but there are so many if you are in the uk if you search in google crohns trials nhs it brings up a whole list of trials that are currently recruiting and the criteria you have to meet and anything that will exclude you from the trial.
I stopped methotrexate late last year after being on it for around 2 years and it worked really well in the beginning. Why won't your dr consider this medication?
Anyways wishing you all the best and hope you can find something that works soon for you

 

[Novice]

Thanks kayleigh. I'm in the US so I'm sure there are plenty of trials here too... I will look into them soon I was just bouncing idea ls around its so frustrating!
My doctor is just really against it he said that he won't prescribe it for any of his patients. I don't think he thinks the positives outweigh the negatives..... I trust his judgement he's been great so far.

I hope you find something too... its so frustrating to think we're all heading down a dead end some of us are just closer than others haha. Urghhhh. Fingers crossed something else gets approved asap!

 

[PsychoJane]

Aside from trials, there are a few options that are available after cimzia to try. The issue is sometime to be able to try them as they are not necessarily recognize for the treatment of crohn so getting insurance to pay for them can be tricky.

Most are still controverse though but i'll just put a few alternatives that are less common.
You may have heard of natalizumab (tysabri), or presumably less efficient ustekinumab (stelara), vedolizumab.

There are other approaches like thalidomide (if you are not conceiving/planning to in the near future) that can help.

Alternatives like rifixamin can be considered, LDN, MJ can also be something to think about.

 

[Novice]

Yeah I looked into a couple of those.... sounds stupid when your health is on the line bit my parents pay a hell of a lot towards my upkeep as it is I can't ask to go on meds that aren't covered by insurance but I will take that list to my Dr and speak with someone from my insurance and go from there.... I just don't like the idea of a few of them like the Tsyabri

I need to Google a couple of those I've not heard of before (thalidamide)

 

[Axelfl3333]

Thalidomide was used in the 60,early 70,s for morning sickness and caused abnormalities in babies was banned for that reason but was recently discovered to be useful in the treatment of other conditions including cancer and bowel conditions must be closely monitored speak to your doctor.

 

[Novice]

Yeah I thought I'd heard of it. I had a little research of it. It's still not widely used anywhere. In just gathering as much info to take to my appt now I wish I'd just hurry up I hate feeling like I'm just hanging waiting in the unknown

Thanks for your help