About to start Humira

Hi, my name is Tommy. I live in Scotland and was diagnosed with Crohn's disease ten years ago. I have had various treatments and rounds of steroids. I have been self injecting methotrexate for nearly 2 years but it has not really been helping me. Three years ago I was diagnosed with arthritis brought on by the Crohns . Life has been a real struggle at times and especially nearly a year ago when I lost my job due to my condition. I would dearly like to hear from other people who suffer from this awful disease and also anyone who has experienced being on the drug Humira.

Regards Tommy.

15 Replies

  • Hi Tommy, I have Crohn's too. I am also going to be starting Humira .im waiting for my test results to come back first. I am also going to be taking Anzathropine. I had UC around 20years ago. Then it just cleared up without treatment.i had a very bad flare up around 10years later and same again it cleared up. Not so lucky this time though I got diagnosed with Crohn's end of May due to having a perforated bowel and abcess. I have a colostomy bag but my colon is all inflamed again. I've never had any of the drugs before so it's going to be a new experience for me.i was told the Humira would be delivered to my house and a nurse will stay with me while I inject to make sure all is ok. I just haven't got time to sit at the hospital having the infusions. I feel like I live there as it is!! So I said I'd inject myself. 4 injections first time it's done I'm told due to the Humira only coming in 40mg doses. As 160mg is required that means 4injections. My IBD nurse told me they are in the process of doing 80mg doses for the future. You're used to injecting your meds so you will be ok with that. Well we can compare how we are with it. Are they giving you another drug to take along side of it? I've heard good and bad things about it, everyone is different it works for some and not others!! I hope it puts us into remission then 👍🙏🏻👊 It's pretty quiet on here sometimes which is a real shame but there are other forums on here too. Sorry you lost your job too!! As if it isn't bad enough having this awful disease you've got that worry too. I worry about my job also, I had 4 months off after my op but had to go back as no sick pay. Only statutory which I couldn't manage on. I had to go back on a zero contract covering another job which wasn't as heavy as mine. Anyway enough of that!! I hope others respond to you Tommy and you get some support. I'm never very far away. Sometimes I'm too tired to stay on for long but if I can ever help you I will. Bye for now. Oh yeah my grandson who is 3 lives in Scotland (North Berwick)

  • Hi Ang, what a boost it was getting your letter, thank you so much! I can't imagine what it's been like for you since May when you had the perforated bowel and abscess. Most of the time when things are bad I am able to find an inner strength.

    I had to take methotrexate before I was considered for Humira, I am positive that is because of how expensive the drug is. I have heard good things about Humira and have been desperate to get on it. Four months ago I was told I was starting Humira, but I told my nursing specialist I had numbness in my hands and feet, she said I couldn't take the Humira until I had various tests to see what the cause of the numbness was, that I could be dangerous to start me on the drug. Had scans of my head and abdomen, and checked my electrical impulses, sticking needles in arms and legs and putting electric charge through them. Anyway everything came back normal and was given the green light. I was to start before Christmas but then I had problems with my teeth, fillings and root treatment needed. So after 5 visits to the dentist I am getting my first injection in a week or so. Was beginning to think I was never going to get there!!! As I said I have been injecting methotrexate for about 2 years, but have not been great with it mainly because it makes me have nausea for at least 24 hours after my injection. I inject once a week and as far as I am aware I am staying on the methotrexate whilst on Humira. One day a week I am floored and usually spend it on a couch with a cover over me.

    I was a carer in a day centre for the elderly and had been in the job 10 years, same time as I have had Crohn's. Last Christmas I was going through a particularly bad spell, for the previous three months I was obsessed with getting to work, but was spending about 3 hours in the toilet before driving half an hour to my work. I ended up in hospital with hypertension and dehydration. I was on the sick for 4 months ( full pay ) and got called into work for consultations and the next thing was they made me redundant. I could probably have fought it but I didn't have it in me! The Crohn's and the stress of work and a totally uncaring manager made it impossible!!! I claimed for P.I.P a few weeks ago and got turned down. That is a whole year I have not been able to work, have to hand in a sick note every 2 months. I have never been out of work before, takes a bit of getting used to!!!

    My grandson James Murphy Cachia lives in Melbourne and will be 2 years old in March. I met him in August for the first time. My daughter Lara is married to an Autralian boy who is a pilot. Three of them were here for a holiday. In the past year I have been to North Berwick 3 times, it is one of my favourite places. I live in Gourock, right beside the river Clyde. It is 25 miles from Glasgow and a very nice wee town. Have live here all my life except for 6 years in Brisbane, 92 to 98. That didn't work out lol. Anyway l hope I am not boring you!!! I'd love to hear from you again to see how you are doing, hope it all goes smoothly for you and you treatment makes you feel a lot better. My email is tommyjkershaw@googlemail.com

    Thanks again for being there friend!!!!!

    Regards Tommy.

  • HibTommy, it's ok it's just nice to talk with people who understand the illness isn't it!! Before I forget if you have Instagram type in our life with Crohn's. It's another community, people from all over the world on there too. People will answer questions for you too and most people have had most of the treatment for Crohn's. I think it's really bad how you were treated at your job.i also understand you were too tired too fight !! The tiredness from this illness is debilitating too sometimes I know. As for pip I understand it's very hard to get for Crohn's. But on the Instagram site I told you about it's discussed on there!! I couldn't even get an answer on the phone when I rang up so I couldn't be bothered with it but I shall try again. It seems more successful if you get doctors and specialists notes to add weight to your case.il email you at some point too.it sounds lovely very where you live and I'm sure you miss your family. My daughter is a Nurse and I live in the midlands now but I'm from York. She still lives there along with my younger son. She gets frustrated because she like to come to my appointments with me!! She said she would have done my infusions for me bless her. My partner is a blessing he helps me a lot but I worry that it might make him poorly If he worries too much. He's very laid back but I can tell he worries I can see it in his face.Bye for now 😀

  • Hi, I have UC. I started humira just before Christmas. I had 4 injections Aston the hospital and 2 at home 2 weeks later and then I'm down to 1 from next week. I've found them easy to administer and feel better from them. I'm also on a low dose of azathioprine aswell. But so far so good!

  • Hi, thank you so much for taking the time to write to me. I am pleased to hear that it is going okay for you so far, hope it continues to stay that way. A few people have written to me and it helps a great deal. Have had Crohn's 10 years and I have a feeling that Humira is going to be the thing that helps me. I will post how I am getting on with taking Humira. Stay well and thanks again!

    Regards Tommy.

  • That's ok! It's good to share with people going through the same thing. Good luck!

  • Glad to see the treatment is working for you sweetie, I was a bit shell shocked about possible side effects so it's good to read some positive stuff about it what dose of azathoprine are you on? And why did they decide on a low dose as I understand it goes on your body weight? X

  • Yes I was/am still worried about side effects but just got to think of the good they are doing and keep up with the blood tests. I take one azathioprine every 4 days ( so a quarter for each day basically) I can't remember the doseage off.top of my head. (That's sounds a bit bad not knowing straight away!) I'm on a low dose as they weren't happy with my tgn levels so they recommended humira aswell

  • Hi Tommy1304, I have had UC for nearly 2 years, and am on Pentasa and Prednisolone, plus Humira. I started Humira in August and found the pre-loaded injections easy to manage after initial help from the nurse. The downside is a fridge full of boxes! I was just beginning to improve in late Sept when I got a tooth infection which meant stopping Humira. Any infection can get out of control whilst on it. I restarted just before Christmas and can just feel some improvement now. It varies from person to person, and for me it reduces the symptoms but I am certainly not back to 'normal', and may never be. Time will tell. Good luck! Val

  • Hi Val, thank you so much for taking the time to write to me, have never been on a forum before and it's helping already! I am the same as you, I would be on Humira already but for an infection in a tooth. Have had five visits to the dentist in a month, but will have my first injection in a week or so. Was meant to start 3 months ago but had numbness in my hands and feet, had to see a neurologist for scans to head and abdomen, also check electrical impulses. Put small needles in arms and legs and put electricity through them. Everything came back normal so am clear to start.

    I know that no two people have the same symptoms with Crohn's. I run to the toilet all the time and have no bowel control. A lot of people have pain, I don't! I suffer from anxiety when I go out , sometimes worse than others. I have been injecting methotrexate for 2 years and it's not working very well, I feel nauseous for 24 hours after my weekly injection and usually spend it on the couch with a cover over me. I really hope that you get back to normal, l have forgotten what normal is like. Take care Val, and thanks again.

    Regard Tommy.

  • Hi,

    My Crohns was improved so much with Humira I am now only on sulfasalazine ( since Sept 2016). After 3 years on the humira, I just have scar tissue. I know Im not cured and will no doubt have to go back on humira, but at the moment all is well except for arthritis which is still a little troublsome.

    I too have crohns arthritis and the humira certainly helped that too, so hopefully it will work as well for you too x

  • Hi, thank you so much for taking the time to write me! You seem similar in your symptoms to me. It is very encouraging to hear that Humira has helped you. I have a lot of muscle and joint pain, and recently skin rashes on my hands and lower legs, that itch a great deal. I am pretty certain everything I have id own to the Crohn's!!!!!! My Crohn's is in one area right at the tail end, but it is constant and sure causes me a lot of trouble. I have been on this forum only a couple of days and it's proving helpful already. Thanks again and stay well. Tommy.

  • Hi Willow, do you still manage to work with the condition? I hope I can continue to do so. Have started my Anzathropine at 2pm today. Should have been 125 mg but apparently the enzyme needed to break it down in my body is on the low side so I'm starting on 50mg.have you ever taken this and why would I need this and Humira? I should have asked but there was so much to take in when I saw the doctor.

  • Hi, I couldnt tolerate azathioprine but could take mercaotopurine, which is a metobolite of azathioprine. It just helps your body to 'accept' the humira better, after a while you should be able to stop it once humira working well.

    I only work 20 hours a week, I will do extra shift here and there if I feel up to it. Whilst I am having a pretty good patch at mo, I dont want to rock the boat! I still suffer with fatigue but I think its just part of having Crohns.

    Are you in the position to reduce hours if you need to - luckily I am, which is good as the NHS trust I work for is not that understanding believe it or not

  • I work 20hours a week too!! I did work 30 before my op but couldn't manage it now. The company I work for don't pay sick pay so it's stat sick pay that's why I went back after 4 months. I'm glad you have an understanding employer. That's a blessing working for NHS. I've been getting headaches I think it may be the Anzathropine so I shall take it before bed in future. Hope I will be able to come off it!! Didn't want to have to go down this route but needs must.The fatigue is shocking isn't it. Thanks for your reply. 😁

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