Petrified to start Humira

[*yvonne*]

Hi everyone

Hope everyone is doing ok. I have had my Humira delivered and I have a nurse coming on Tuesday to do my loading dose and I can't stop thinking about whether this is the right decision for me. I am so scared to start this drug with all the side effects that get spoken about and not sure who to speak to. I'm now trying to convince myself that I'm not that sick and it'll all be ok if I just try and forget about it or eat better or something. I know I'm clutching at straws but this drug is really scary for me and I've not reacted well to anything else they've tried me on so far, methotrexate and azathioprine. How is everyone else getting on with this drug? I really need to hear some more info from people that are taking it. It's 1am here and I'm having trouble sleeping because I can't stop thinking about it. I kept thinking this would never come that my GI would change his mind or I'd go into remission on my own but neither has happened and the day I start is fast approaching. Please share your experience if you can.

Thanks for reading.

 

[lisadc1]

I began Humira in June and went through the EXACT same emotions you are facing now, almost trying to bargain my way out of it. I, too, had a reaction to the Imuran...pancreatitis and a hospital stay, as well as other issues, less than a month ago. I cannot take it either. But, after discussing with my GI, and a close watch, it looks like I will continue the Humira. It has taken several months before I have finally noticed a difference and they ran an antibodies test this week to make sure it is doing its thing. Remaining hopeful.

My nurse that came out was very helpful. She took her time, and was very kindhearted. I opted for the syringe instead of the pin, so that I can control the rate it goes in. I do experience site reactions, and at first had bad headaches. However the headaches seem to have lessened to a tolerable pain from a three day migraine. I take injections every two weeks...I still dread Humira day, but the choice is better than the pain.

Let us know how you are doing!

 

[*yvonne*]

Thank you Lisadc I really hope I come to terms with this soon as it is happening after all. I have been sent the pen I didn't get the choice the order was made out by my GI and that's what he has selected not sure how I feel about that as I've heard it's more painful than the syringe but then again I used to hate having to do that too when I had to inject methotrexate. I had severe muscle aches, I could barely walk, on Imuran and when I called my GI he told me to stop immediately even although I think I was only on it for maybe a month.

The thing that really got me after delivery was the sharp bin. I had one before with the methotrexate and the sight of it even not on injection day made me feel physically sick because I knew how it was going to effect me once I'd taken it.

Really struggling to come to terms with this being my life. I always seem to be in denial I have a chronic illness until I have a bad flare and EVERYTIME it hits me worse than the last time psychologically that is.

Thanks for sharing and I hope your antibodies test comes back ok. I'll keep my fingers crossed for you and I'll update again once I've had my loading dose.

 

[Miss Underestimated]

Try to focus on the positive aspects. I just posted that I'm in remission. Don't be afraid, and think about how it is suppressing the stuff that is making you sick. It helps to be positive.

You are stronger than you think you are.

 

[*yvonne*]

I am finding it harder this time to find positives, well there's good days and bad days to be honest. I am hopeful this will work because I'm out if options after this. So glad to hear it's worked for you, you must be delighted

 

[washicd]

Hi Yvonne, I was dx with crohns/uc over 30 years ago and have had 2 resections since. I've been taking Humira for several years now. I haven't noticed any problems or side effects. Also, I've been in remission for years.

I hope you do as well with yours.

Take care

 

[KayleighMeek]

Hi yvonne,

I was on humira a couple of years ago now and it worked ok for me but I had to move up to weekly injections for it to make a difference. I didn't find the pens to bad they do sting but some find icing the area before injecting helps with that. What I found difficult is the pen makes a loud clicking noise it used to make me jump and a few times I ended up spraying the medication onto my stomach. I am now on cimzia which is similar to humira but have got the syringes and I do find I get on better with them, no loud click to make me jump lol. I find now that doing the injections is just normal and it doesn't scare me anymore but it used to.

It's completely normal to worry when starting a new medication especially when you have bad reactions to previous drugs. I was on methotrexate tablets and they would make me feel terrible afterwards but I didn't have the same with humira. I really hope the humira puts you into remission and you will soon forget about all of this worrying x

 

[my little penguin]

Ds has been on humira for over a year and half .

He uses syringes which I add lidocaine to the humira syringe to help with the burning of the meds

No side effects
Great med
Just took 3-5 months to work

 

[Pilgrim]

We will be starting our 4 year old on Humira soon. So keep posting and let us know how it goes. Just wanted to chime in to say that I can relate to your concerns! I hope it goes smoothly and works wonders.

 

[afidz]

Try not to focus so much on the possible side effects. Be aware of them and know what to do if something serious does happen, but then put it in the back of your mind. I never had a single side effect from taking humira. I went into remission in 30 days the first time I took it. I did have to stop it a few months back however for multiple reasons, but the main reason was because I was getting injection site reactions that were getting worse with every dose.

 

[chuckmya]

I started Humira @ the beginning of October! I'm feeling better than I have in years! Esp when it comes to energy! So far....knock on wood.....no side effects other than injection site reaction. And I only got it if I injected in the thigh. So I do the tummy and no reaction!! Good luck......think positive and things will go well for you!

 

[McStew]

Hi Yvonne,
I've been on Humira for nearly 3 years now. I can (and continue) to relate to your feelings of uncertainty around this medication. I have had no side effects with this medication (a part from the redness at the injection site for a couple of days). I hate needles, but take the injection every 2 weeks before bed and don't think about it until it's bedtime (I actually think getting my blood drawn is way worse). This medication has made me feel more human than I have in years. While I do get sad and frustrated that I need to be on this - and frequently question if I should continue on this medication because of the potential side effects....I remind myself of all the things I have done, which this medication has actually empowered me to do - travel around Europe for 6 months in an old VW camper van (YES, someone with Crohn's has done this successfully with medication needing strict refrigeration), moved country, started a new job, started playing in a band, started selling art, etc. These were things that I would not have been able to do seamless (or at all!) if I was ill, and for that, I am very thankful that Humira is in my life, even if I swear at it every time I take an injection! It's very much a love hate relationship, but unfortunately that's what IBD is (well, some can say it's mostly a hate relationship, but I also truly value how much I have learned about myself and how thankful I feel when I am well - something my "healthy" counterparts may not think twice about). I also think that because I am so closely monitored and get bloods checked , see my GP, and the GI regularly that I am in good hands if something were to look dodgy. That close care makes a difference to me.

Anyway, I wish you the best of luck on this journey. It definitely isn't easy, but I certainly hope it gives you the remission you need for your body to heal.

 

[SusanB2001]

Hi.
I too am about to start Humira. I am having a hard time justifying it to myself as I only have 1 symptom of Crohn's; diarrhea! I have no pain or anything else except what I mentioned.

This forum is great to hear what others have gone through. I have asked for both syringes and the pen to see which type of injection I will prefer??!!

I asked my GI if changing my diet to SCD or similar could cure me but she said "it's a cronic disease " and says that won't cure me. Of course she agreed proper nutrition helps but doesn't cure. She also said not taking the drug could cause me to end up having some major event which could land me in the hospital for some sort of surgery. So how does one argue with that?!

So, good luck to you and me for our start on this scary drug!

Thanks for the question and letting me vent as well!

 

[Pilgrim]

Hi SusanB2001. I just wanted to chime in to say it is the same for my daughter. She is largely asymptomatic. She has diarrhea but only one time every other day! Her labs are great! She looks very healthy. But one test particularly (fecal calprotectin) shows that she has active inflammation.

So it is the same here, we don't want to risk needing a surgery if the Humira will help.

We tried SCD. It's a great diet. It seems to help a lot of people, but it unfortunately didn't work for her. She went right into a flare after a few weeks on the diet.

Anyway I hope you and the OP and others who are starting will keep posting with their experience.

 

[lilac]

Hi Yvonne, my loading dose wasn't as painful as expected and i felt great for two weeks after having it. I had no side effects - I had nothing really. I currently take it weekly and administer myself but it doesn't seem to do much for me which is ashame as the loading dose seemed so promising. I hope it works for you and not as scary as you expect

 

[*yvonne*]

Hi everyone just to give an update before I head to bed. I had my loading dose of 4 injections today and didn't find them quite as painful as I thought they'd be so that was pleasing. I am feeling some aches and pains through my body almost flu like but hoping that it doesn't feel any worse in the morning.

Thanks washicd, KayleighMeek, mylittlepengiun, afidz,chuckmya, susanb2001 & lilac

Pilgrim that's so sad she's only 4 years old it's one of my biggest fears for my two girls. I am also symptomatic most of the time too and my fecal calprotectin results are all that show up in the 800's when I don't feel that bad but when it starts to show in my blood that's when I usually end up in hospital. I will keep you updated on how I get on

Really tired nowso going to go to bed and I'll update again tomorrow

 

[nikimazur]

On Humira for a little less than a year, recently started to become unresponsive to it, but that's a whole other story. I had less issues/side effects with Humira as compared to pentasa/Entocort/azathioprine. I loved Humira when it was working for me!

 

[Carrie]

I totally understand your initial reservations about Humira, and am happy to hear your loading dose went so well! I've started Humira on three separate occasions (due to international moves, not the ineffectiveness of it for me), and really got myself worked up over the last restart. I remembered how painfully the medicine burns, and the whole ritual of getting the injection done. Luckily, it's been going just fine, and I have only ever cried once upon giving myself an injection (it was one of those, OMG it hurts so much I'm crying and laughing deals). I've since decided to not inject in my leg.

I hope Humira does wonderful things for you!

 

[*yvonne*]

Quick update before I go to work. I'm a little bit tired today and could easily have stayed in bed. That seems to be the only side effect I have. Yesterday my arms and chest looked like they had sunburn when I woke up but that passed later on it the day. My right knee is a bit sore today but not sure if it's linked or if it's the fact I dropped my pred to 20mg yesterday. My skin seemed to be a bit drier yesterday too but all in all I feel ok....almost scared to say that in case I take a bad turn

Hi nikimazur that's a shame you became unresponsive to it especially when it was working so well for you. What are they trying you on now?

Hi Carrie I found the leg more painful too but I think it was because when I was pinching my skin that my grip on it slipped I found it easier to hold onto my pinch from my belly and it didn't hurt as much. I hope Humira continues to work for you.