Which medications for Crohn's do you wish you hadn't taken?

[Whiteroses]

I have been reading this forum for the last two months (thank you for it) looking for ways to help my 21 year old son who was told in the hospital that he most likely has Crohn's but would need 2 more tests (SBFT and colonoscopy)to confirm. He has his first GI appt. tomorrow and as I have read so much I know too little but I know enough to be afraid for him. I wondered if I could get some advice on procedures/medications we would be wise to avoid or question. Thank you so much for your time and wisdom.

 

[ronroush7]

Everyone responds differently to medicines. If you question some medicine or procedure, get a second opinion. I wished I had stayed on Remicade instead of going off and then going back on.

 

[Whiteroses]

Everyone responds differently to medicines. If you question some medicine or procedure, get a second opinion. I wished I had stayed on Remicade instead of going off and then going back on.

Thank you for the idea about a second opinion and Remicade.

 

[ronroush7]

Welcome.

 

[karj]

It is hard to say really which medication to avoid because everyone reacts so differently. Because of the horrible side effects I would say prednisolone, but sometimes it can be the only answer in a situation. My GI started small and worked his way up from steroids, to pentasa, to remicade, to humira and now 6mp aswell. I don't like the way 6mp is making me feel at the moment but one of my friends is on it and he says he is doing great. So everyone really does react differently to medication and hopefully your son won't have to trial too many to find the right combination for him.

 

[Bufford]

I didn't like any of them and found the side effects worse than the Crohn's. Last year I tried Remicade and had Lupus like side effects. The best course was the Aza and Cipro for getting CD under control.
However, by far the best has been going med free, managing my diet and keeping stress and pain under control. I am a firm believer of pain management. Keeping pain under control goes a long way to keeping my health on the level. Pain fuels stress and I believe that leads to flares.

 

[Pug Gamer]

Mesalamine, i really reacted bad to that and had to stop instantly.

 

[shamrock15]

While I appreciate the idea behind this post, it is really important to keep a few things in perspective. As it is stated, everyone reacts differently.

The small bowel follow through was the primary test in diagnosing my disease. Combined with the scope, you will get a very good overall image of the condition of your son's bowels. There are a wide range of results possible here, and each needs to be treated in a different manner.

Prednisone is great initially at knocking down inflammation, but can cause water retention, weight gain, sleep problems. For me they were effective initially (felt massive improvements in about 12 hours) but I became resistant to them and started to show edema fairly quickly.

Pentasa and the family are best used for the colon and minimally effective at best normally in the small bowels. For me they were ineffective.

6MP seems to have done at least some good for me for awhile, then failed spectacularly.

Remicade and azathioprine are my current meds and are showing signs that they may need to be re-examined. However, they have worked very well for me for 8 years when nothing else ever did.

Any treatment needs to be weighed against what will (or likely will) occur without it. I have undergone 6 surgeries and damage to knees, wrists and lost almost 20 years of good living. For me, the possible dangers of my current meds are more than made up for by having essentially a normal life. I say this as someone who has had some skin cancer removed only three weeks ago. I was approaching surgery for my bowels almost every 2 years, and there was a real danger that I wouldn't make it off the table on one of the last ones.

There is a lot to consider going forward for you. A second opinion is always possible. Go into your meeting after the tests with A LOT of questions. Ask to see the images if need to be to clarify in your mind what your doctor is talking about. Ask about the extent of the disease, what are your treatment options along with the pros and cons of each. Some treatments do take months to show effect.

Best wishes for a simple case and an effective treatment plan right out of the gate.

 

[dejavucandace]

So far I have only been given Pentesa enemas and by the 3rd day I have had the most terrible headache that I had to discontinue. I tried it twice with a break in between. Plus the bleeding was waaaaaay worse. So at the moment I am on nothing....waiting for more testing. uggh

 

[GI Jane]

Same everyone diff...for me it was Remicade it gave me Lupis.....but hey I love to be that 1 in 100,000 people get this....it makes the doctors day...."can we have your permission to write a paper".

Prednisone turns me into Animal on the muppets.... so my whole family wishes I don't take that one lol

 

[Lady Organic]

So far I have only been given Pentesa enemas and by the 3rd day I have had the most terrible headache that I had to discontinue. I tried it twice with a break in between. Plus the bleeding was waaaaaay worse. So at the moment I am on nothing....waiting for more testing. uggh

I would call the dr asap instead of waiting and risking things to get worst. You could easily try another type of rectal treatment, but with cortisone (enemas or foam). good luck.

 

[Whiteroses]

It is hard to say really which medication to avoid because everyone reacts so differently. Because of the horrible side effects I would say prednisolone, but sometimes it can be the only answer in a situation. My GI started small and worked his way up from steroids, to pentasa, to remicade, to humira and now 6mp aswell. I don't like the way 6mp is making me feel at the moment but one of my friends is on it and he says he is doing great. So everyone really does react differently to medication and hopefully your son won't have to trial too many to find the right combination for him.

Thank you. That is really good to know. So you may have to try several different medications to find the right one? He was diagnosed today and the Dr. prescribed Pentasa 500 mg. 2x a day. We are just terrified but I know it can most likely be managed. Thanks again

 

[Whiteroses]

I didn't like any of them and found the side effects worse than the Crohn's. Last year I tried Remicade and had Lupus like side effects. The best course was the Aza and Cipro for getting CD under control.
However, by far the best has been going med free, managing my diet and keeping stress and pain under control. I am a firm believer of pain management. Keeping pain under control goes a long way to keeping my health on the level. Pain fuels stress and I believe that leads to flares.

Thank you for replying. Cipro and Aza are antibiotics? The antibiotics my son was given in the hospital stopped his flare.I was hoping the Dr. would give them to him again to stop this flare but he prescribed Pentasa. I hope he can be medication free too. I am researching diets right not. It makes so much sense about pain causing stress, I never thought of that. I hope you stay pain and medication free. My best.

 

[Whiteroses]

Mesalamine, i really reacted bad to that and had to stop instantly.

Oh no that is another name for the prescription my son was just given, Pentasa. Could you tell me how you reacted? I will watch for it. 2 doses today and he is mostly sleeping. I appreciate your help.

 

[Whiteroses]

While I appreciate the idea behind this post, it is really important to keep a few things in perspective. As it is stated, everyone reacts differently.

The small bowel follow through was the primary test in diagnosing my disease. Combined with the scope, you will get a very good overall image of the condition of your son's bowels. There are a wide range of results possible here, and each needs to be treated in a different manner.

Prednisone is great initially at knocking down inflammation, but can cause water retention, weight gain, sleep problems. For me they were effective initially (felt massive improvements in about 12 hours) but I became resistant to them and started to show edema fairly quickly.

Pentasa and the family are best used for the colon and minimally effective at best normally in the small bowels. For me they were ineffective.

6MP seems to have done at least some good for me for awhile, then failed spectacularly.

Remicade and azathioprine are my current meds and are showing signs that they may need to be re-examined. However, they have worked very well for me for 8 years when nothing else ever did.

Any treatment needs to be weighed against what will (or likely will) occur without it. I have undergone 6 surgeries and damage to knees, wrists and lost almost 20 years of good living. For me, the possible dangers of my current meds are more than made up for by having essentially a normal life. I say this as someone who has had some skin cancer removed only three weeks ago. I was approaching surgery for my bowels almost every 2 years, and there was a real danger that I wouldn't make it off the table on one of the last ones.

There is a lot to consider going forward for you. A second opinion is always possible. Go into your meeting after the tests with A LOT of questions. Ask to see the images if need to be to clarify in your mind what your doctor is talking about. Ask about the extent of the disease, what are your treatment options along with the pros and cons of each. Some treatments do take months to show effect.

Best wishes for a simple case and an effective treatment plan right out of the gate.

So much good advice here. I cannot believe how much you have been through. You people are brave! All that you said about asking your doctor this and that has made me realize we need a new doctor! I can't tell you how coldly he told us the diagnosis. We know nothing about this disease and the Dr told us, answered the few questions we could spew out and left. 15 min appt. As he was closing the door I said, what diet should he follow? Low residue. Thank you,thank you for helping me to open my eyes. Second opinion for sure! Good luck healing from the skin cancer surgery.

 

[Whiteroses]

So far I have only been given Pentesa enemas and by the 3rd day I have had the most terrible headache that I had to discontinue. I tried it twice with a break in between. Plus the bleeding was waaaaaay worse. So at the moment I am on nothing....waiting for more testing. uggh

I'm so sorry! When you are in between medicines, do you have a continual flare? I hope you don't, they are terrible. Hope you find something soon.

 

[Whiteroses]

Same everyone diff...for me it was Remicade it gave me Lupis.....but hey I love to be that 1 in 100,000 people get this....it makes the doctors day...."can we have your permission to write a paper".

Prednisone turns me into Animal on the muppets.... so my whole family wishes I don't take that one lol

I'm so sorry that in trying to relieve one disease you got another one! That is crazy! I know what you mean about steroids!
Have you found a new medicine or are you okay without it?
The Dr. suggested my son participate in clinical trials. Is that scary? Thank you!

 

[GI Jane]

I'm so sorry that in trying to relieve one disease you got another one! That is crazy! I know what you mean about steroids!
Have you found a new medicine or are you okay without it?
The Dr. suggested my son participate in clinical trials. Is that scary? Thank you!

Envivio is my medication now. I've only had two doses and it's working already bringing my inflammatory markers down. They want me to have one more infusion and then I'll have my surgery to have the best outcome. They said I may need to be on this med for life. The inflammatory markers will tell. At least it's only every 8 weeks infusion, love this biologic.

 

[Pug Gamer]

Oh no that is another name for the prescription my son was just given, Pentasa. Could you tell me how you reacted? I will watch for it. 2 doses today and he is mostly sleeping. I appreciate your help.

I also am a firm believer that everyone is different. And for me that was just not for me. I had nausia, headaches, fever and dizzyness. And to add insult to injury it kicked my crohns off so bad! Thought itd pass as its a new drug to my system. But then i had one night (2 weeks in) that i literally was delirious, i felt so hot that the sweat was dripping off my nose! I was in bed thankfully anyway but i couldnt even work out how to turn my ipad off or wake up my partner. My heart then kicked off, which could be because i was panicking and have a heart condition. I fell asleep and woke 13hrs later! But felt alot better and my stomach improved with not having those again. I had to have the sachets because that pill is like a brick lol.

 

[dejavucandace]

I would call the dr asap instead of waiting and risking things to get worst. You could easily try another type of rectal treatment, but with cortisone (enemas or foam). good luck.

Oh he knows and told me he didn't want to give me anything else until more tests. This is the merry go round of a health care system we have here in Canada. And calling this doctor would possibly get me an appointment in 6 weeks. lol Everything is a very long wait here.

 

[dejavucandace]

I'm so sorry! When you are in between medicines, do you have a continual flare? I hope you don't, they are terrible. Hope you find something soon.

At the moment I believe I have been in a continual flare since July. Although no one has been willing to confirm this. Even though the 4 biopsies report chronic ulcerated colitis. And yes it has been quite miserable. Although now it seems that I may also be having gallbladder issues along with this so not even sure what is what anymore. At this point im hoping I at least have some answers....and treatment before this summer as I pretty much wasted last years.