Humira ?? Offered

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My son of 22 has recently been dignosed with crohns well the results of biopsy was colitis In colon but showing what they think is crohns in the small colon he's been in hospital 3 times in 3 months with so much pain they have cat scanned him he has a 7 cm stricture what they think is the pain but he's been on at first 40 ml of prenisone then down to 20 flare up again Then you to 40 again flare up a again then up to 70 now back down to 30 now flare again with lots of pain they now want to put him straight on to humira. Don't under stand much about it apart from side affects would he be better to start on something not has strong ? Or better to have structure cut ? Opened ? any feed back would be really appriated

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  • Posted

    Hi so sorry to hear what your son is going through. It took the docs a good six months before they diagnosed me with crohns. I was given meds first of all for indigestion, then an ulcer. Then when I was constantly being sick, not eating and loosing weight daily I was taken in for tests, I've had every test going until they decided to give me a laparoscopy and have a look around. They then discovered what was wrong and cut 8 inches of my intestine out. After a few days while recovering I could believe how good I felt without this pain it was so strange feeling normal again. So for me that was the best thing they could have done for me. I do still get flare ups every now and then which brings it all back. I have one now and have been given a weeks steroids which do help. I am also on pentasa 2 tabs 4 times a day which I've taken since surgery which was in 1995, I also get vitamin b12 injections every 12 weeks. I do have a good quality of life, just the flare ups now and then which are usually due to something I've eaten. There are also a lot of voids I do avoid as I know the outcome.

    I hope your son can get some kind of medication which will settle his crohns. I know all patents are different. To me is the worse pain ever and the only way I can describe it is that it's worse than being in labour. All the very best for him. Keep in touch.

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  • Posted

    I am sorry for what he is going through. I have pancolitis, which basically is Ulcerative Colitis of my entire large intestine, so I go through a lot of pain and I truely feel for him. You have to do what you think is the right thing for him. I have never taken Humera or Remicade, because they can really disable the imune system leaving one very vulnerable to infection. They can also cause a rare form of cancer to develope. So the decision should be carefully considered. There are other medications out there such as Methotrexate, Imuran, And Mesalamine. I would try the Mesalimine first. It has the least side effects and if it works then he can stay on it for a long time. In my case Prednisone is the only thing that has worked for me, so I have been on it for 10 years now. There are new medications coming out in the next few years and two of them don't impair the imune system. I hope he gets into remission soon. No mater what medicine he chooses, apy close attention to any side effects that can be dangerous. I wish you luck and again very sorry he is suffering, no one should suffer like those with IBD.

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  • Posted

    I feel for your son.

    I hadn't a 7cm structure removed in the summer. I feel so much better. There are pros and cons with surgery or medication so you have to think about it hard. It the stricture is scar tissue I don't think the medication will help therefore surgery would be appropriate. If the structure is inflammation then medication may be wise to try first. I take mercaptoepurine.

    If surgery is an option then they do say your likely to need more surgery poss 10 years later.

    I have just had 3rd surgery over 25 year period. Although I do still work full time and have 2 beautiful children.

    Good luck and hope your son feels better soon

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  • Posted

    The fact they are jumping straight to Humira is quite rare. Usually many other drugs are tried first!! Humira is a very expensive treatment and can be extremely affective with active Crohn's disease. It comes with many possible side effects but so do all the other drug therapies.

    I would say before you make a decision you MUST know if the stricture is fibrotic (scar thickening) or inflammation from active disease. If its fibrotic surgery is the only effective option. If its disease activity then Humira is the best medical therapy currently available.

    Ive had Crohn's for thirty years. Several surgeries due to scarring and am currently on Humira. if you need to know more please ask.

    I hope you can navigate this tough course of decisions and get some relief from treatment....whichever you choose.

    Hannah

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    • Posted

      Hi thank you for your reply how would I find out if it's scar tissue or inflamed ? He's goes for another ct scan wens would it show on the scan ? The doctor wants to put him on humira also wens they are scanning him to be sure there's no infection before he starts the treatment but when I have read through the side affects I am really worried do you think I should get a second opinion ? The last time when he was in hospital the stricture was inflamed it also caused the appendix to be inflamed has there side by side that was only 6 weeks ago

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    • Posted

      Your Specialist should be able to determine if the stricture is scarring or active disease. It's possible it's both!! Also, if he had a positive response to steroids and relapse on reduction that's also indicative of active inflammation and disease.

      Humira does come with a host of side effects and it works differently for everyone. I have had a long history of the meds just not working for me. And the side effects from steroids and loss of bone density so horrible that over the last 25 years I have opted for a medical liquid diet to give me respite and help avoid other drugs and surgery. That has been a massive help but it's so restrictive and difficult to maintain. After 3 resections and complete loss of terminal ileum I am now taking Humira to stave off active disease and imminent surgery!!

      And it is working!! The inflammation has gone..... first time in 25years!! But I do have some side effects. But they are manageable compared to the utter pain and disability caused by active disease.

      I guess there are no easy options. You just gotta talk it all through and make a decision that you can live with. Just remember, if you choose Humira you can halt the treatment at any time should it prove too difficult.

      If you continue to use steroids there are other serious side effects long term guaranteed. A liquid diet is a really good alternative to steroids if you can cope with it. At all costs surgery should be avoided as once it's done there's no going back and it always comes with some life long consequences. But where surgery is necessary if possible it should be elective rather than emergency. That way you get to plan, talk through after effects/recovery.

      The important thing is to start some kind of treatment to get the disease under control. That will probably include some lifestyle changes and doing things differently.....not always a bad thing!!

      Anyway....hope this has helped a little.

      Keep us posted.

      Hannah

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  • Posted

    That's it, you have to try several medications some times to find one that will work. It is best to start with the least harmful one. I hate to say that and what I mean is the medicine that will cause the least severe side effects. Many of your questions can be answered at the CCFA webb site. They have nurses that you can ask questions and many resources for those with IBD. It is such an awful disease and I hope that one day they find a cure. Tell him that this disease does usually go into remission. I have had a nice 10 year span of it, but I am now sick again. I am trying to find a new medicine that will help me get there again and he will as well.

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  • Posted

    Hi Natalie, sorry your son is having a bad time.

    I was diagnosed 4 years ago and by the time I got a diagnosis surgery was the only option.

    After surgery there were complications but being free from pain was great.

    It gave me a ten months break from the pain of crohns, I was put on a number of medications none of which have worked.

    I have had a further 2 opps and it has come back every time.

    Although the rest bite from the pain is nice the opps take there toll.

    I have been on humera since June but the side affects were to much, basically feeling like my body is gradually switching off.

    I have just had first infusion of ramacade so hopefully may help.

    Hope your son responds to one of the options open to him.

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    • Posted

      Hi Daniel

      Hope your feeling better soon I think there he's going to try Humria My self I think he's getting the pain from the stricuture we have pushed the doctors to remove it but they keep telling us it's the last option they will use. They want to try medication first he's been on 70 ml of prenesole. Steroid but every times he gets to 40 he's getting the pain and restricted to what he can eat I thought once the area like a structure was removed it can give you 5 years before it starts to return. But reading your story it's looks like it's a lot less time it's hard to know what to try for the best

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  • Posted

    Dear Natalie,

    I understand your concerns. However it's important to understand that once there is a significant amount of stricture it usually does not heal it self except through surgery.

    Personally I would try other lower forms of treatment b4 Humira, so he has other meds to fall back on if not effective. All this drugs carry side effects, it is therefore important to weight out the pros and cons of ur decision.

    Good luck

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