Doctor wants me to start Humira

[familybruin]

Hi my name is Casie. I am 26 and have had crohns since November, but just got diagnosed last month. I am currently taking apriso and it is still not working great for me. I have a flare up about every 3 weeks (a flare up lasts about a week). I take diclomime when I need it but sometimes that does not work either. My doctor wants to start me on humira and stay on apriso. Is there anything else there I can look at trying before I go straight to humira? I really wanted to stay away from biologics. Thanks Casie

 

[theOcean]

Is there any reason why you're trying to stay away from biologics?

Other than apriso, they might want to put you on a steroid like prednisone -- but that's not something you want to be on long-term, and it also has unpleasant side-effects. You could be put on an immunosuppressant, like 6mp, Imuran, or methotrexate. Those would help prevent your body from creating inflammation in the first place, whereas Apriso just treats the symptoms instead of stopping them from happening.

 

[Looking4health]

a different treatment

I posted about an alternative treatment but have not received any replies.

Since you too were looking for something else to try, you might want to consider this. My original post is on this site -- but the system is not letting me put in a link.

It a substance called Tempol - an SOD mimic. After researching it and thinking about -- and posting questions, I decided to try it starting tomorrow. I will let you know how it goes. As best as I can describe it, it is an antioxidant the improves cell signalling through the NO pathway -- an over simplification I think... but basically it does more than reduce inflammation -- it corrects immune signals.

Anyone with experience with this? I am taking the plunge tomorrow and would appreciate any information. I am going to start with 10 mg.

 

[valleysangel92]

Familybruin -

I can understand you wanting to keep off the biologics if you can, they are scary medications and can have a lot of big side effects. Also, people can feel like it leaves them no-where else to turn if they don't work well enough. I would say to talk to your doctor about your concerns and ask them why they feel the need to go to a biologic without trying other things first, it may be that recent tests suggest that your disease has become severe. Ask them about the possibility of starting an immunosuppressant like imuran or methotrexate and maybe a short course of predisolone or entocort to help give you a kick start.


Looking4health - I cant find any studies that have been done on humans, which would make me weary of using it, since you just don't know what the long term effects might be. Are you looking to take this treatment as well as your meds or instead of? I ask because it's not the best idea to be going off prescribed medication in favor of something recommended by a non-medical professional. The best thing for you to do would be to speak to your GI and see what they think. Remember that what works for someone else is not guaranteed to work for you, particularly if they have a different condition. It may even make things worse rather than better.

 

[SupportiveMom]

Just adding my thoughts for what its worth. I too would suggest Methotrexate or Imuran. They are a good step up. Also, if Mtx or Imuran becomes not enough there is very positive research about combination of biologics and immunosupresives. It has been in the news a lot the last month especially.

Good luck to you!

 

[CrohnsChicago]

Hello familybruin,

I understand your concern about taking Humira.

You say you are newly diagnosed and I am curious, have you spoken with your doctor about all of your treatment options thus far? Is your inflammation considered mild/moderate or severe? What is your doctor's reasoning for jumping into Humira first?

medications for crohn's vary in that you have some that are more focused on short term treatment such as steroids and mesalamines. You also have long-term treatment medicaitons that try to hit at the true source of your digestive troubles.

In the bottom-up approach for treatment of IBD, 5-ASAs (such as apriso) and diclomime would fall into that short-term treatment plan by attacking the problem primarily at the surface level/symptoms.

Immunosuppressors such as Imuran/Azathioprine and 6-mp are higher up in the tier of treatment and have proven to be effective for many with IBD at suppressing the inflammatory response and are often tried before biologics because they have fewer side effects when compared to biologics and also don't require certain lifestyle changes that may be necessary for biologic treatments such as Remicade or Humira. They are also significantly cheaper than biologics (of course this depends on the type of insurance you have). Immunosuppressors take a few months to kick in which means they are commonly paired with steroids which are used to hold you over until the immunosuppressors can reach their full effect on the system.

Biologics like Humira and Remicade are often used for the more severe cases of IBD that do not respond well to treatements such as those mentioned earlier.

At the end of the day, we are our best advocates when it comes to managing our IBD.
It is important to have a clear understanding of how your Crohn's affects you individually and when choosing medications consider their risks vs. the benefits. Keeping the lines of communication very open with your doctor and informing him of your routine as well as abnormal symptoms, will also allow them to treat you more effectively in the long term.

Types of medications: http://www.ccfa.org/resources/types-of-medications.html

Benefits vs. risks: http://www.ccfa.org/assets/pdfs/risk-and-benefits-transcript.pdf

_______________________________________

Looking4health,

I too have researched and any information I have found regarding Tempol appears to be focused on research done in mice (here's one for example: http://www.ncbi.nlm.nih.gov/pubmed/16391834). Definitely not something that sounds like it is ready to be recommended to the public. Not knowing the severity of your symptoms or your beliefs regarding certain treatments currently available, I strongly encourage you to speak to your doctor in depth about your interest in this medication and if you are not satisfied with his answers contact IBD research institutions to find out more information about Tempol.

 

[familybruin]

Thanks everyone for your input. I am going to to talk to my about all of this. I sure am glad glad that I found this website. It's nice to read things from other people.
Thanks again,
Casie

 

[Ladyslipper]

I found this information very helpful as well. I am newly diagnosed with crohns (March) and am now tapering off Prednisone (was on 30 initially)- am on 15mg(for about 2 1/2 wks ), to go onto 10mg Wednesday and see a new GI on April 24th. The Surgeon who did my colonoscopy put me on this and this is all that I am on and he said the GI will add more meds once he sees me. I have been trying to research all I can about other meds that I may be put on so that I will know what to ask at this appointment. I am doing better with no further D but still not eating much and lost about 25lbs. The info on all the meds can be overwhelming I find when so newly diagnosed. Any particular questions a person should be asking at this first visit? I am a RN but there is so much I need to learn. I am feeling overwhelmed

 

[CrohnsChicago]

Hello ladyslipper,

It is incredibly easy to get overwhelmed figuring all of this out especially since we all experience crohn's in different ways. No two people have all of the same symptoms and thus no one really follows the same treatment plan. The best way to begin addressing crohn's as it relates to your own situation is to ask these general questions that can lead your research in down the right path such as:

1) What is your specific diagnosis? meaning where exactly is your disease located in your digestive system?

2) Is your disease considered mild, moderate or severe?

3) What is your doctor's typcial approach for treating crohn's based on your condition (bottom-up or top-down method of medication treatment)?

4) What lifestyle changes would your doctor recommend to assist you in getting things under control? This includes diets and in your case diets that won't aggravate your symptoms but will help you re-gain some weight or keep you from losing any more.

5) Ask about your blood work. Have them check for any deficiencies. Iron levels, b12 levels, Vitamin D, c-reactive protein (indicator of inflammation within the body) and to look into any other vitamin deficiencies that you may have as these are commonly found alongside crohn's. Severe malabsorption of vitamins/minerals could be a cause for the continued weight loss/fatigue as well as cause other symptoms and complications unrelated to crohn's if not addressed.

5) Since you have been on steroids for a long while now and they can cause lots of stress to your bones, I would ask for a bone density test to make sure they haven't caused an onset of osteopenia or osteoperosis. Getting your calcium levels checked would be beneficial as well.

6) If he recommends certain medications, make sure you ask what to expect with regards to side effects, missed doses, and tapering plans (if there are any). Also if there is an idea of what plan B will be if this treatment does not work (that way you can start to prepare to the best of your ability if necessary).

7) and most importantly, if you don't understand something your doctor is saying, tell them you do not understand and ask them to explain further/better.

Bring a notepad and pen with your questions so you don't forget and extra paper to take notes if that makes you feel more comfortable doing so. And you always have the forum to help support you along the way

 

[Ladyslipper]

Thanks so much CrohnsChicago - just to have an outline how to address all my questions is so helpful - I find there is sooo much information out there that I really was unsure of how to proceed. Although I have had issues with D in the past 15 years (I am 43), I always was a very active person, have 2 teenage boys and a husband and was on the go always. Now life has just been turned upside down and I really have not been out of the house much, having crazy feelings from the prednisone, have not been able to work,etc. - so am really struggling to see that life will ever return to any kind of normalcy. I know that it will at some point but am anxious to see the GI guy to see how we can get me feeling human again. Again - thanks so much for the outline of questions as I would not have addressed all of those.

 

[Miss Underestimated]

Hi my name is Casie. I am 26 and have had crohns since November, but just got diagnosed last month. I am currently taking apriso and it is still not working great for me. I have a flare up about every 3 weeks (a flare up lasts about a week). I take diclomime when I need it but sometimes that does not work either. My doctor wants to start me on humira and stay on apriso. Is there anything else there I can look at trying before I go straight to humira? I really wanted to stay away from biologics. Thanks Casie

I think your doctor can probably explain why he's choosing Humira at this point in your treatment. From what I've learned, if you have an aggressive form of Crohn's, it's better to hit it with the big guns right away, or it can progress to serious complications. Usually the pathology report and different blood tests tell your doctor what form of Crohn's you have.

Ask him/her.