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Supposed to start humira - I am scared!

Hi everyone. I had a follow up doctors appt with my gastro-enterologist this morning and am confused, a little upset at the Crohn's thing, but mostly really scared...we finished the appointment with me having to consider and really think about going on a biologic drug...which just creeps me out!!!

I just got diagnosed with a severe Crohn's beginning of August this year and am still coping with accepting this big life changing event...and learning about this disease that I still know so little about...
I am currently on Prednisone and Apriso. Thought it would get me into remission and then my life would continue close to what it has been all my life, just eating carefully and figuring out what I cannot handle...yes, that was naive to think, but how can one know when one doesn't know much about Crohn's in the first place!!??

It looked like the Prednisone was working quite well. I thought I understood the "wonder drug" label that I read here in the forum a lot. I have not had huge side effects ( I was/am exhaustion and had aweful sleeplessness), but my blood test after 2 weeks showed that the inflammation went down and everything looked better. Then I hit 10mg and some symptoms reappeared. So my doc told me to go back up to 15mg. Little did I know she told me today, that the fact that I can't get off it as easy as she had prescribed it ( I was supposed to be on 10mg for one week, then down to 5mg for the last week), makes her believe that what she had first believed upon diagnosis: that I am a candidate that should be on biologics. I guess this is the "evil" prednisone.

I am so hesitant to go on any other drugs really, this is my first bad flare. I understand that the reason they think these drugs would be good for me is that, if they do work for me, they eliminate the high risk of a bad flare that would put me in the hospital and needing surgery. But still. I have never been a person that likes drugs or takes pills. I HATE it. I don't like to give my body something that "screws" with it. I guess I will have to find a way to rethink that and accept the fact that I most likely will always need some medication. But I guess I am not there yet. Anyhow, my doc is very understanding and said I have to be ready for it, she will not make me do anything that I don't want and she will work with me on whatever I decide. I love that about her and think I am lucky in a way. But what do I do? I feel like I don't have a choice...not really...

I would love to hear from anyone. What made you go on Humira ? What side effects do you notice since starting it? Anyone been on it during pregnancy?
Thanks much!!
 

David

Co-Founder
Location
Naples, Florida
Hi Mattannika. I'm sorry you haven't received any responses until now. :( It's a tough subject for sure. Let me preface this by saying that I have no been on Humira OR prednisone. Nothing I share is first hand though hopefully others will come in with some personal experiences. Everything I share is from studies, papers, and reading countless anecdotes.

Regarding Humira, it's a pretty good medication and has greatly helped so many. Yes, there is the potential for side effects and yes, it is interfering with your immune system. I can absolutely understand your fear and like you, I HATE taking medication. Would I personally go on Humira? It's hard to say but if things were bad enough, very likely. But I would likely try MANY other things first. But as someone who is still learning about Crohn's, it's likely hard for you to know if things are "bad enough". That must be so frustrating :(

Many here end up going on Humira and I support them 100%. For people like you and me that hate medications, I like to present other ideas as well. But if you end up taking the Humira I think that's a great idea too. I say that because I'm of the opinion that this disease should be hit from every angle possible. Take the shotgun approach. But if you'd prefer to avoid the heavy hitting biologics and thiopurines, here's some areas of research for you:

Before I start, it sounds like you have a good GI. But I feel it is critically important to be able to tell if these treatments are working. Make sure you get a CRP, ESR, fecal calprotectin, fecal lactoferrin, blood counts, and every other test they're willing to give that will help determine if these treatments are working or not.

It's VERY important to utilize some treatments that are shown via studies to work. When I see people trying alternative treatments that may or may not work and nothing else, I cringe. Suggestions:

1. Enteral nutrition. This is an absolutely fantastic treatment option with no serious side effects. And it works just about as well as prednisone. The hard part is sticking to it. But which do you hate more? Sticking to it or the alternative?

In conjunction with EN I would utilize:

2. Low Dose Natrexone - An exciting treatment option with good results in small studies and pretty much no serious side effects. Your doctor probably won't be familiar with this. Be sure to print out and take the studies we have stickied with you.

The two above are the big guns. Additional dietary and lifestyle changes that can be utilized in conjunction with the above are:

- Hydration - Dehydration and loss of electrolytes is common. Proper hydration and adding electrolytes back in can help you a lot.

- Stress reduction. Do whatever it takes to reduce your stress levels. In addition, a weekly or even monthly massage if funds are tight is great. Studies have actually shown that massage can reduce inflammation. Give yourself self-massages as often as possible in between the professional ones.

- Exercise if you're able - a gentle yoga is a good one :)

- Vitamins and minerals - find out which you're deficient in and properly supplement. People with Crohn's disease are commonly deficient in vitamin B12, vitamin D, folate, and magnesium as well as a host of others. But those four first ones should definitely be checked. Do not blindly supplement, treat these as medications and get your levels tested FIRST.

- Supplements - there are a variety that help improve overall health. Check our our diet/fitness/supplements forum for ideas. I'm personally a big fan of tumeric (curcumin) and strongly suggest utilizing it.

- Alternative medicine - This could be stuff like acupuncture, including a naturopath in your treatment team, etc.

I hope that gives you some ideas :)
 
I read this and thought I should reply. I was first "diagnosed" with UC about 4 and a half years ago. I have that in quotes because it turned into a snowball that kept getting worse and worse.

Lesson #1 - ALWAYS get more than one opinion on your diagnosis. The severity of my disease was missed and probably could've been helped more had treatments been more aggressive.

I first was prescribed Lialda for about 4 months. When that didn't work, prednisone was added. First it was 10mg, and kept up to about 40mg. I did this for about 4-5 months, all the while I was getting noticably sicker and sicker but since it was gradual, I didn't notice.

Lesson #2 - Sometimes when others think you don't look so good, don't dismiss their observations.

I was going to the bathroom about 20 times a day about 10 months in and along with weight loss, you get dehydrated, which causes moodiness and anemic because of the ulcerations. I finally was checked into a hospital after seeing a 2nd GI doc and basically was told to go to the ER immediately. I was put on high levels of steroids and ultimately had to try Remicade and if that didn't work, I'd have to have my large intestine removed.

Lesson #3 - Sometimes when a treatment isn't working, waiting to see if it will work doesn't always make sense.

Remicade got me to a point where I could leave the hospital, but not in remission. I did injections for about a year results that peaked after 4 months. The ulcerations were spreading so the decision was made to remove the large intestine (J-pouch) procedure.

Lesson #4 - Think VERY carefully about surgery if it's not life-threatening. There is no going back.

I had the procedures and for a time it was doing pretty well. I was gaining weight and doctors kept saying it could take up to a year to adjust to new lifestyle. A year passed with no improvement. Was put on entercort, no luck. Saw a specialist for IBD, and did some more testing to find that I had both Crohn's and UC. Certainly not news one wants to hear. I was put on various things and ultimately started Humira since it was the last chance.

I'm about 10 months into treatment and it hasn't completely put things into remission although it is a little better. It doesn't look like it will improve any more.

Lesson #5 - There is no "wonder drug" that helps everyone. Studies for Humira show about a 30-40% helpful rate which means for 60-70% of people, it does nothing.

I've been lucky that I haven't experienced side effects, but also nothing has worked so it's a mixed bag.

I agree with David about the tests you should be getting regularly (monthly to bimonthly) and would also check for anemia since it will affect your energy.

Lesson #6 - Stay Positive. Out of everything, this is the most important but the hardest to do. A common thing for people with IBD is depression and frankly it's quite normal. Having friends and family or a support structure will really do wonders for you.

I firmly believe that there is most likely a nutrutional component to managing this disease and don't think medication is always the only answer. Be your own advocate, I've kept up on things so much that I can have intellegent coversations with my GI doc. It also will tell you when a doc is full of BS.

Hope this helps, you are not alone, many many people share your struggle and there is plenty of support out there if you want it :D
 

Jennifer

Adminstrator
Staff member
Location
SLO
To answer your questions, I went on Humira because my treatment plan at the time wasn't working as well anymore after 13 years. I was taking 6MP at 100mg and still had inflammation slowly creeping up (pretty low numbers around 9 when normal is 0-4). I was going from remission to clinical remission. Next step after that would be a flare. I didn't want to be in "clinical remission." I wanted my full remission back. So my Rheumatoid specialist said it would be best if I went on either Humira or Remicade as they are newer drugs to help get people into remission. I chose Humira with the pens that I can do at home rather than sitting through a long infusion in a hospital.

Only side effect I've noticed so far is redness, itching and a small welt at the injection site that forms about 24 hours after injecting (this started happening after I finished my loading doses). I take one Benadryll and it goes away completely. Compared to Prednisone, for me that's an extremely mild side effect. :p

With Humira it says to not breastfeed while taking it but I do know you can take it while pregnant from what I've read here on the forum and outside the forum (I'd consult your doctor on it though to be sure).

I understand you're fear of the meds especially since you haven't even gotten a chance to really wrap your head around and accept your own diagnosis. Whatever you decide just know that we're all here for you and will answer any questions or concerns you may have. :)
 
First of all, thank you David and drewsphere and crabby. I think what I really need/want to do is a lot more reading and researching on humira and other options. :Flower:

I am at the very beginning it seems and my GUT tells me that I am not ready to jump to the bilogics at this moment. The only thing I have tried so far is Prednisone, there may be other options before I go to what seems the last resort, humira. I also understand that it might be where I am headed, but I suppose I feel that I need to try some less harsh drugs first and see what my body can work with and what not.

I have an appointment with a Naturopath this tursday and I am really hoping she may have other ideas, as well be able to help with supplements. Which My ge doc said the blood results when testing for hepa+b prep, there was still inflammation, but she did not mention anything about vitamins etc.

David, you mention low dose natrexone, I have never heard of that. But I did some reading on it. I think it would be a good idea to bring it up at my next appointment. Sad that if that is a drug that really helps us with little side effects and there is just not enough money to be made with it we don't get to hear about it much. Instead we get put on higher risk drugs that many cannot afford, that is so sad! :stinks:

I see my GI doc tomorrow and get the results of my 3rd blood test and she wants me to get hep A& hepB vaccinations. I cannot remeber if those are in prep for humira or just in general something I should have done? Next in line is flu vaccination. I'm curious what she recommends instead of the Prednisone and instead of going straight on humira....I have been doing a lot of reading here and it sounds like a lot of peeps are on 6mp or imuran?
 

David

Co-Founder
Location
Naples, Florida
If you're going to discuss LDN with your GI be sure to print out the studies we have stickied in the LDN forum and take them with you. And read as many threads as you can on it as you're likely have to make a case for it.
 
What is your GI's reasoning behind you needing the Hep A & B vaccines? I've heard of doctors suggesting that immunocompromised patients get Flu shots, but not Hepatitis, unless you work in the medical field?

Just curious because I was required to get Hep B vaccine to do hospital clinicals, and my first major flare and Crohn's diagnosis followed soon after. I'm not saying the vaccine caused it, just that doctors are often overzealous about the whole vaccination issue.
 
Hi M, I am in about the same place as you are. Was set to begin Humira but a naturopath turned me toward SCD and while it worked for a week, I am back to a horrible flare up and the diet is seemingly not the answer for me. Soooooo, I'm back to making an appt to begin Humira. I too have been on prednisone (60mg at highest) and it really helped while I was on it, but as soon as we got down to about 10mg, I too, began to have D again. Now with each day I'm getting worse and it seems I will have to try Humira. I'm scared too..........

I wish you luck! Try the SCD, it makes sense and then you've done one more step before you go to the last resort!!
 
I feel like this disease is different for everyone and some things work for others but don't work for some. I started out on imuran(azathiporine) and a prednisone/entocort and also asacol. Those in its self have pretty bad side effects. I have had terrible bruises all over my legs for about a year from the steroids but have had pretty much no side effects from the imuran( but some people can get pancreatic problems). The imuran did help get the pain under control and the swelling in my bowel went down. But with a really good insurance plan i was paying $100.00 dollars a month for all my medications.It didn't get everything under control but calmed it down.

I have switched to humira recently. It is only costing $5.00 a month and 96% qualify to get it for $5.00. So thats a bonus. I know there are risk but there are risk associated with any medication. I felt for me that the risks were worth it too feel better. I suffered in terrible pain for over a year after being diagnosed (not to mention the 5-6 years of being undiagnosed).

By the way i have moderate crohns only in my ileum. I was pretty upset with the idea of having to take medication for the rest of my life but i would have given anything to stop the horrible pains.I couldn't even drink water without having horrendous pains. Its a hard decision to make and hopefully you'll have good doctors to help you make the right decision for your situation.
 
What is your GI's reasoning behind you needing the Hep A & B vaccines? I've heard of doctors suggesting that immunocompromised patients get Flu shots, but not Hepatitis, unless you work in the medical field?

Just curious because I was required to get Hep B vaccine to do hospital clinicals, and my first major flare and Crohn's diagnosis followed soon after. I'm not saying the vaccine caused it, just that doctors are often overzealous about the whole vaccination issue.
Avw. That is a question I will ask today, before I go ahead and get the vaccinations. I cannot remember if she wanted me to have those if I did go on humira, or in general due to my immune system being compromised. I beileve the flu shot is another one I am supposed to get soon....
 
Hi M, I am in about the same place as you are. Was set to begin Humira but a naturopath turned me toward SCD and while it worked for a week, I am back to a horrible flare up and the diet is seemingly not the answer for me. Soooooo, I'm back to making an appt to begin Humira. I too have been on prednisone (60mg at highest) and it really helped while I was on it, but as soon as we got down to about 10mg, I too, began to have D again. Now with each day I'm getting worse and it seems I will have to try Humira. I'm scared too..........

I wish you luck! Try the SCD, it makes sense and then you've done one more step before you go to the last resort!!
Jackielips. I have a few questions for you. Have you tried any other meds besides the Prednisone? If not, what made you decide not to try other meds and go on humira right away?
Did you have a tough time getting off Prednisone? I also experienced symptoms returning at 10mg, so I went back up to 15. Since yesterday I am back down to 10mg, trying to come off this time completely. Interestingly enough, I do not, nor have I really ever had D.! I have C. and that has proven to be a problem.
I also am trying the SCD diet, I started it about 1or2weeks after I started the Prednisone. I can't tell really if it is doing much or not, but I guess it is going ok. I figure I'll stick with it for a while to see. Sorry to hear that the SCD didn't work for you, they say you have to try it at least for 3 months before you can tell if it works or not.
Hope you feel better soon!! :rosette1:
 
I feel like this disease is different for everyone and some things work for others but don't work for some. I started out on imuran(azathiporine) and a prednisone/entocort and also asacol. Those in its self have pretty bad side effects. I have had terrible bruises all over my legs for about a year from the steroids but have had pretty much no side effects from the imuran( but some people can get pancreatic problems). The imuran did help get the pain under control and the swelling in my bowel went down. But with a really good insurance plan i was paying $100.00 dollars a month for all my medications.It didn't get everything under control but calmed it down.

I have switched to humira recently. It is only costing $5.00 a month and 96% qualify to get it for $5.00. So thats a bonus. I know there are risk but there are risk associated with any medication. I felt for me that the risks were worth it too feel better. I suffered in terrible pain for over a year after being diagnosed (not to mention the 5-6 years of being undiagnosed).

By the way i have moderate crohns only in my ileum. I was pretty upset with the idea of having to take medication for the rest of my life but i would have given anything to stop the horrible pains.I couldn't even drink water without having horrendous pains. Its a hard decision to make and hopefully you'll have good doctors to help you make the right decision for your situation.
Curious how you got it for that low cost? It's one of the most expensive meds out there...and for how long will you be able to get it for that? I wonder if at some point insurance will kick one out...

I really hope it will work for you and you feel better and better!
 
I have also taken Asacol (sp?), and I take Imuran. Neither on their own have worked. Only the prednisone made a significant difference. But it's side effects are too much for long term use for me at this time. So I've done the prescriPtions and diet, and supplements. My humira arrives tomorrow :-/. Very mixed emotions but we'll see. I flared so much in the last week I just didn't feel I could give SCD another two months.... I'll keep you posted on how the humira goes.
 
PS. My GI also told me to get vaccines for Hep A & B, flu, pna, tetanus, and MMR. I plan to do so but have not as of yet, very $$. Oh, and my cost for Humira is also $5. One nice thing!
 
Curious how you got it for that low cost? It's one of the most expensive meds out there...and for how long will you be able to get it for that? I wonder if at some point insurance will kick one out...

I really hope it will work for you and you feel better and better!
Ask your doctor about it. Its a patient assistance program. 96% of people get it for that price. Whether you have insurance, no insurance, on medicaid, etc. Try calling Humira and asking them.
 
Oh ps. I've been on the humira for two weeks and off of my other meds (imuran/asacol/prednisone/entocort off for a few days). doing great so far no symptoms of crohns. No side effects from the injections other that tiny tiny bruises where the injections went. So much better than taking pills all day long.
 
I was glad to find these posts, I am supposed to start Humira self injections next week and I don't mind telling anyone I'm scared to death! I don't know if I have the nerve to shoot a needle into my self! Not to mention the fear of side affects... I, too, was on Prednisone starting with 60mg a day and when I dropped to 10mg a day I went right back into a huge flare-up. I wish Prednisone was safe for long term use as it seemed to work so well for me. I've been on it for almost two months and my GI Doc wants me to get off it. I bumped myself back up to 20mg a day, I can't get in to see the doc for another week and I'm sure I wouldn't make it with the pain and inability to urinate unless I upped my dose again, which seems to have calmed things down a bit.. Thanks again, everyone, for your posts and advice.
 
I'm coming up on a year of being on Humira. I have no side effects so far, and it seems to be working. I already have a lot of damage, because I went for 20+ years undiagnosed, just controlling it with diet and when I had a flare, I talked doctors into giving me antibiotics - my disease responds to antibiotics.

I have fistulizing Crohns - I thinks it's considered to be the most damaging kind. It's genetic. It helped me to learn that there are 2 approaches to treating Crohns - bottom up, and top down.

Bottom up has been the main approach for years. They start you out on as little medication as possible, controlled diet, etc, and try to get you into remission that way, then remove the meds and see if you stay in remission. If not, they put you back on minimal medications again.

Top down means they hit the disease with the big guns as soon as it's diagnosed. The reason for doing it this way is to prevent as much damage as they can.

I started out with a different medication, using a bottom up approach, but couldn't tolerate the medication - it made me sicker. After they discovered more active disease in my colon, the doctor suggested some tests to see if I would respond to the biologics - when the test indicated they would work on me, I went on Humira.

I took about 3 months to decide, and my doctor was very understanding about it. I'm sure that if I had decided against it, he would have tried other means of treatment, but I knew I already had a lot of damage from so many years handling it on my own. I almost died from it. I don't need any more experiences like that.

I'm sure you will get enough information here to help you decide and be comfortable with your decision. :)
 
I've been on 8 steroids a day for 3 months with no remission also take azathioprine and pentasa I just started humira on Monday no new side effects to report only steroid induced insomnia sweats and dehydration but got news today I can come off the steroids so hopefully the humira will work better and I don't get all these infections that come from lack of immunity. X I also hate popping pills so praying the injections work well enough on their own x
 
I have been on Humira for almost three years now and it really has done great for me. I was on Pentasa first, which gave me hair loss pretty bad. Then I was put on Remicade which worked pretty well but going for the infusions was just too inconvenient while I was away at school. I was really hesitant to go on Humira at first, I didn't like the idea of giving myself injections and had read a lot of scary posts online about side effects. The first thing I learned was that all medications will have scary side effects for some people but not all of them. So I went for it, and I have pretty much been in remission ever since.

I started doing my injections in my stomach, switching sides each week. After a while (about a year and a half) the pain with the injections started to become worse. It started burning a little more, and I was starting to get some redness around the injection site. The nurse warned me this would happen, she just explained after a while your body builds up somewhat of a tolerance. That's why they have you switch injection sites as much as possible. So my GI has me taking 10mg of prednisone the morning of my injection, and some Benadryl 30 min before. It has definitely helped with the "allergic reactions" I was having.

My injections are now starting to become more painful in the legs, and it hurts too bad in the stomach for me anymore. But, like I have seen a lot of other people say on here, it's a pain worth dealing with to help get you to remission. I have to agree. It's not pleasant, but when is inejcting yourself ever fun? It's definitely scary at first, between the diagnosis and then the injections but good results are definitely possible. Stay positive! :)
 
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