My Humira experience

Humira (adalimumab) is a tumor necrosis factor (TNF) blocker that reduces the effects of a substance in the body that can cause inflammation.

Humira is used to reduce the symptoms of moderately to severely active rheumatoid arthritis (RA).

It is also used reduce the signs and symptoms of  Crohn’s disease or Ulcerative colitis, after other drugs have been tried without successful treatment of symptoms.

In my case I was prescribed Humira for my Ulcerative colitis. I had previously been prescribed  Prednisolone (Steroids) and  Mesalazine (Pentasa).

Unfortunately neither of these medications which are commonly prescribed to sufferers of Inflammatory bowel disease were able to guide my disease into remission. 


It was May 2015, after a period of 3 years on and off steroids and a very scary experience with Azathioprine it was decided by my consultant gastroenterologist that Humira was the next step of medication for me. 

I was excited yet apprehensive about Humira. It had been discussed as an option with me during a stay in hospital- to be honest I didn’t know what to think. I just wanted something that would work. 

The initial process of being prescribed humira sounds simple but it’s a little complex, because this is an expensive treatment- costing the NHS ¬£10,000 per year per prescribed patient. 

Your case needs to be put forward to a funding body who will decide whether to grant the funding or not- not scary at all. 

You have to go through a couple of blood tests and a chest x-ray to determine whether you are able to tolerate the drug. 

So eventually after the funding had been granted…(this usually takes around 6-8 weeks dependant on your local health authority). 

I was contacted by the delivery company Healthcare at Home who arranged the delivery of my medication and sharps bin, they provide you with a informative information pack about the drug and also arrange for a trained nurse to visit you at your home to talk you through how to administer the drug and any side effects or questions you have. 

Humira needs to be refrigerated due to the ingredients of the medication and like food if not used after a certain amount of time needs to be discarded.

It’s also an immunosuppressant drug- meaning it will suppress your immune system making you prone to catching infections. 

It’s seems scary but I promise you I was more scared at the thought of injecting myself than any side effects. 


There are two different ways to administer Humira- as shown in the picture above there is the pen, similar to an epi pen and also the syringe.

The day of the nurses visit came, they had phoned to say they were 30minutes away and to remove the Humira from the fridge…. 

I was starting to get nervous, that sick feeling- I was praying this would be my saviour, the drug to give me my life back. There was a lot riding on this. 

The nurse arrived, confirmed my details with me and then we got down to business. He assured me that everyone is different but some people find Humira easier to inject at body temperature so to put the pens into my pocket to increase the temperature. 

The loading dose of Humira is 4 injections 160mg. 

We discussed where inject the drug , it is advised to either inject in either side of your stomach or either leg above the knee. I tried each different area to see where felt most comfortable- it’s completely your decision and there is no right or wrong way. 

Personally I found injecting in my legs more painful that my stomach. But like I said it’s totally your choice. 

I’d been dreading the day but in actual fact it wasn’t that bad. I was warned that after the loading dose I may feel a little groggy and tired. Something us humira users call the “Humira Hangover”. 

Everything was going well, I was feeling more like myself again, I was able to socialise and go about daily tasks with no problem. I’d had my first solid bowel movement in 3 years. I was so happy- who knew a solid stool could make someone so happy? 

As previously mentioned all drugs/medication come with side effects and here’s what happened to me. 


I woke up and realised I had developed a really nasty skin infection, it was horrible, I couldn’t wear my work uniform as the  scaring under my arms was so sore. 

I knew something wasn’t right.  

We proceeded that morning to go to A&E to get checked over. 

They weren’t really sure what it was either. A cocktail of steriods,antibiotics and antihistamines soon got the infection under control. 

To this day the dermatologists have no idea what happened. 


Fast forward to the present day and my current health, Humira has served me well for just over two years but now unfortunately seems to have stopped working. 

My toilet trips have increased, the blood and mucus has increased – it doesn’t seem to be managing my symptoms very well. 

For me it’s bitter sweet because it explains why I haven’t been feeling well for the past 8 months but it’s also a little upsetting as is another failed medication added to my list. 

During a routine conversation with my consultant we discussed a ‘class change’ to a biological drug called Infliximab pending blood tests. 

I’m currently still not in remission but always hopeful that one day I’ll get there. 

What’s next? Who knows 

*Disclamer – These are my own opinions and my own thoughts- not affiliated with the Humira brand* 

5 thoughts on “My Humira experience

  1. Hi James

    I’ve not had Humira. I’m on Vedolizumab and hoping it works soon (can take up to 14 weeks for Crohn’s and 10 for UC). I’ve been unwell since January and just wanting to get a bit of time in remission. If I get changed from the Vedolizumab then my next drug would either be Humria or Infliximab.

    Let me know how it goes. Had very few side effects with the vedolizumab though so really hoping it kicks in and does it’s job.

    Cheers

    Elaine

  2. So pleased to hear your words, I understand how you are because I am the same after taking Infliximab and now on Humira and still taking Pentasa.
    I wish you well.

  3. Hi James. Infliximab worked for me for 5 years. Unfortunately I developed antibodies so have been on humira for a year now. Not happy on it though. Doesn’t seem to be as effective as infliximab was. Good luck with your infliximab journey x

  4. I was on Humira for a year and a half, and whilst it did help with my U.C. the side effects were horrendous. I had constant infections and other issues (UTIs, eye infections, Shingles, mouth ulcers and tongue swelling, throat problems, nerve disorders), but also the most horrific skin problems. I constantly itched all over, and my body was covered huge itchy, oozy, angry raw sores. I had to have skin biopsies to check that they weren’t cancerous, and fortunately they came back as clear. I honestly felt as though my body was being completely poisoned, I was exhausted and couldn’t fight any of the infections. Also my bald patches were reappearing and my nails were crumbling away. I was so miserable. I was taken off the Humira about three months ago and put onto Pentasa (a new one for me having been on Salazopyrin for 20 years and Azaththyoprine and Mezavant for 7 years). My insides are not too bad at the moment, and I feel as though my body is starting to recover. I feel stronger and am not getting infections any longer, also my hair and nails are recovering. I’m still battling with the skin issues at the moment and have tried several different treatments. I’m currently using Enstilar cutaneous foam, and am seeing a slight improvement. Still a long way to go, but I’m feeling hopeful. Humira works brilliantly for some people, but I think we do have to be aware that for some us the side effects can be almost as bad as the Crohns/U.C.

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