Biologics long term?

[Ryann88]

Hello,

I'm 27, was diagnosed with crohns and ankylosing spondylitis at the age of 12. I have briefly been on biologics off an on for the past few years. Remicade for a year and a half, humira a year and a half, now just started Cimzia. I've always tried to stay away from them, hence the reason I've never stayed on them very long, but my doctors told me they were the only medication that was dual appropriate for both of my diseases, and that the benefits out weigh the risks. I guess I just really want to know how many of you have been on biologics for 10+ years, and if so, have any of you had bad side effects? These drugs are so new, and yes they are a godsend for some, but literally no one can tell us the long term effects and that's terrifying to me. I'm 27, who's to say what could happen 20 years down the line on this medication.

 

[ronroush7]

I can't tell you exactly how long I have been on them. I started on Cimzia. It worked for a while and then failed. Then, I went to Remicade. I took myself off because of the expense. In 2010, I had an obstruction and they did a resection on me. My doctor restarted me on Remicade. I developed an allergy to it. I had s lesion in my scalp. I am currently on Stelara.

 

[JaimeM]

I've been on biologics since 2009. So not quite 10+ years but awhile still. I've never had any bad side effects. Remicade gave my joint pain. I just started Cimzia last year, because it was better for my lifestyle (I live in a rural area 70 miles away from my GI and have a young son) Basically it was too hard to make it to my infusion site. I've read that if you take biologics right away to combat the crohns then it can keep it from becoming severe. I'd have to agree with this. My crohns wasn't an issue until I went off the biolgoics to have my kiddo and I wanted to breastfeed for a few months. I've had problems since then however. Anyway I'm 30. Still no side effects of the drugs thankfully.

 

[Ryann88]

I've been on biologics since 2009. So not quite 10+ years but awhile still. I've never had any bad side effects. Remicade gave my joint pain. I just started Cimzia last year, because it was better for my lifestyle (I live in a rural area 70 miles away from my GI and have a young son) Basically it was too hard to make it to my infusion site. I've read that if you take biologics right away to combat the crohns then it can keep it from becoming severe. I'd have to agree with this. My crohns wasn't an issue until I went off the biolgoics to have my kiddo and I wanted to breastfeed for a few months. I've had problems since then however. Anyway I'm 30. Still no side effects of the drugs thankfully.

Definitely good to hear you haven't had any side effects. On a side note, I am 27 and do want to have kids hopefully in the next 2-3 years. What medication were you on while pregnant? That's a big fear of mine, I don't know how I'll manage without medication, although some people say they go into remission during pregnancy.

 

[JaimeM]

I was on Remicade during pregnancy and my son caleb is a very smart energetic normal little boy. I took off the last trimester of pregnancy and stayed off of the remicade until he was 4 months old so I could breastfeed. I really wouldn't recommend that though and regret going off of the Remicade at all. It was my idea not my GI's. I now switched to Cimzia because supposedly the protein is larger in cimzia and less likely to cross the placenta at all.. however, Remicade obviously didn't affect caleb at all.

I was in remission during pregnancy.. My OB joked that I'd be the person to have 12 kids since it put my Crohns into remission.

 

[mish2575]

15 years for me. I finally just stopped to try Methotrexate. I've used remicade, Humira, & Cimzia. I was going to start a new one but it needs an IV infusion and i just cant take more time off work without losing my job.

 

[ronroush7]

15 years for me. I finally just stopped to try Methotrexate. I've used remicade, Humira, & Cimzia. I was going to start a new one but it needs an IV infusion and i just cant take more time off work without losing my job.

Is that going to cause complications not being on a biologic?

 

[my little penguin]

Going to tag maya142
Her kiddos have been on biologics a while and AS

Ds has been on them 4 years no issues so far
It treats his Ibd and JSpA

 

[Maya142]

My older daughter has been on biologics for 7 years. My younger one has been on biologics for 6 years. Both have AS and the younger one also has Crohn's.

We have had no side effects at all besides some tiredness after infusions. We are SO grateful that biologics exist - I don't even like to think about where they'd be without them...definitely in wheelchairs.

To us, the diseases are much scarier than the drugs. My husband also has AS and has had it for a long time - way before the biologics existed. He has fused SI joints, a partially fused spine and has had 5 hip replacements. He has also had uveitis many times. We don't want the AS to progress for the girls and so far, they are both doing MUCH better on biologics.

 

[Scipio]

Biologics have been in use for more than decade now with very good results. We may not know what the longer term effects of biologic therapy are, but we certainly know what the longer term effects of uncontrolled Crohn's are. And they are not pretty.

If I were you I'd bet on the drug.

 

[mish2575]

Is that going to cause complications not being on a biologic?

I dont understand the question. Are most people that go on Methotrexate also on a biologic?

 

[my little penguin]

I think his question is
That most people who were on a biologic do not go back down the drug ladder to a lower level (" weaker ") drug such as just Mtx .
It can happen
But since the folks who are not necessarily mild hang out here longer it unlikely to hear those type of success stories here

 

[mish2575]

Hmm, I didn't realize mxt was considered a 'lesser' drug.

Well I've been on Asacol and a biologic for 15 years. My fistulae are not closing at all anymore. Each biologic I moved to worked less than the one before. I did mind of insist I wanted a full need change, she guided me in this direction.

I'd this doesn't work, maybe I'll try a second opinion. She's my 4th GI. I like her the best. She really really listens and takes my opinion into account.

 

[ronroush7]

Hmm, I didn't realize mxt was considered a 'lesser' drug.

Well I've been on Asacol and a biologic for 15 years. My fistulae are not closing at all anymore. Each biologic I moved to worked less than the one before. I did mind of insist I wanted a full need change, she guided me in this direction.

I'd this doesn't work, maybe I'll try a second opinion. She's my 4th GI. I like her the best. She really really listens and takes my opinion into account.

I think Stelara is less effective than the first two biologics I was on.

 

[george john]

I have been on all the common meds and each 1 was going to work better lol. Anyway I have been on Humira for over 10 years now. Side effects are losing hair and i mean all over.I take injections every 7 days,on day 4 i get the side effect that bugs me most, my skin just seems to peel off my face,around nose and forehead and eyes. When i take shot within 8 hours all gone till day 5. good luck to all of you

 

[ronroush7]

I have been on all the common meds and each 1 was going to work better lol. Anyway I have been on Humira for over 10 years now. Side effects are losing hair and i mean all over.I take injections every 7 days,on day 4 i get the side effect that bugs me most, my skin just seems to peel off my face,around nose and forehead and eyes. When i take shot within 8 hours all gone till day 5. good luck to all of you

To you also.