Having second (and third and fourth) thoughts about Humira

Starburst

I'm due to have my first injection of Humira next Thursday. Prior to starting Cimzia in August, I was so unwell with my RA, that I'd have tried anything. I did have a flare up since stopping Cimzia 2 months ago but things have settled. I feel like I am coping whereas pre-anti TNF last year, I was certainly not coping.

My rheum and the nurse both feel that given my RA has caused joint erosions, it is aggressive enough for me to need to chance it and try anti TNF #2. I don't disagree.

It's probably not helped by the fact that I feel so much healthier since coming off Cimzia, I hadn't realised how much the vomiting and stomach pains were ruling my life.

I don't want to rock the boat and risk side effects. I'm so close to the end of my degree (less than 5 weeks!) and I'm job hunting. I have applied for 2 fab jobs already and I am so excited.

Maybe I'll feel differently if (when?) my RA starts hounding me again.

I keep going backwards and forwards between thinking Humira might get me into remission like Cimzia did without side effects (best possible scenario) and panicking about how bad that side effects might be. The fear of the unknown, I guess?

(Even while writing this, I've chopped and changed my mind twice!)

What do to? What to do?

ichabod6

If you dont try it you will never know.

Starburst

ichabod6 wrote:

If you dont try it you will never know.

Yes, that is true and if I do have side effects this time, I don't think I would persevere as long as I did on Cimzia.

dreamdaisy

I have one side-effect caused by humira and that is raised BP - meds sort that. The one side-effect I would really like (feeling better) has never happened but so what? I've had lovely bloods for a number of years now so have learned to be content with that.

I am, however, not you. I am not young, I am not approaching the end of my degree (hurrah!) or facing the next few years of my life with anything resembling optimism but you could if you give it a whirl. As Ichabod so wisely pointed out, you won't know until you try. I wish I could be more helpful but that's it. Sorry. :oops: DD

tkachev

I've been on Humira since Oct 2008. I was one of the lucky ones where it worked straight away.

I do have trouble with coughs, colds and fatigue which I think ( by process of elimination) is caused by the Humira but it has made a difference to my life. Give it a go if you can, you will be well monitored by blood tests.

Elizabeth x

villier

Sophie, as you know it is OA I have so don't know a lot about the meds you take.

I have a very rare neurological condition and had been tried on numerous meds, infusions etc. Down the line they have made me vomit come out in rashes pass out that I knocked myself out. I kept going as I knew there would be something out there that I would eventually be able to tolerate, it was a while coming but it happened although not perfect but tolerable.

You are a very wise and sensible young lady and I know you have been through the mill with your meds but you will work it out, you have came this far with all that you have going on in your life with uni and illness and I am sure you will make the right decision whatever and we will be behind you all the way (((())))...................Marie xx

Boomer13

Hi Sophie;

I can empathize with you; it's a tough decision. I'm having a terrible time with my own choices regarding meds. The current ones haven't lived up to their promised effect, and the new ones come with new expectations and potential side-effects.

Give yourself time, that's all I have to say.

Wish you well whatever you choose.

stickywicket

Not an enviable decision at all. I've never done anti-tnfs and have been very lucky with DMARDS re side-effects. I did my finals with an amanuensis but can't imagine how it would have been if I'd been throwing up at regular intervals.

My impression – and it's only an impression – from reading these forums is that humira is tolerated better than cimzia but that's not much to go on.

The timing is rubbish for you. I think you'll have to discuss it with the rheumatology team and see if they have any suggestions eg might they bring you up to speed with the injections then leave you to decide when to start them? Or start you but let you take a rain check if things go a belly up?

I wish you well in your decision-making, and exams.

dibdab

I've no opinions or advice to offer, just wanted to wish you well in the decision making, and wish you look with the final steps in the degree . It's your body and your life, and only you know how much impact the disease has on you........... a decision made now is perhaps not a decision for all time-maybe discuss the options of delaying for 6 months until exams etc are done?

Deb x

barbara12

Sorry I wont be any help, but see the others have given you some good advice..I just wish you well with whatever you decide...it must be so hard..good luck with the exams not long now...xx

Starburst

Thank you for the food for thought. I am lucky that I have no exams. I have on-going practical assessments, 2 written assignments and a dissertation (due early May) so now would be the best time to take the chance. It's probably best to get started before I start working. I have a support worker job lined up but I am still applying for social work jobs, so I need to be in shape to work full-time by June/July.

I'm going to phone my rheum nurse for a chat next week. I think I will go ahead as arranged with the caveat that I will not continue for as long if I start getting unbearable side effects.

Thank you for helping me think this through.

mike26

Good luck starburst
and hope it works for you.
i started humira 6 weeks ago and so far nothing very bad.
will let you know if it does :oops:
best wishes mike26.

ichabod6

Hello Starburst,

Have you made your decision?

stickywicket

Starburst wrote:

I'm going to phone my rheum nurse for a chat next week. I think I will go ahead as arranged with the caveat that I will not continue for as long if I start getting unbearable side effects.

Yup, she has, ichabod

As5567

Good luck if you do decide to give it a try, I cant say that I have read about many people feeling unwell on Humira. I used to take it once per week and felt fine, but again everyone is different and reacts to medications in different ways.

Starburst

I had my first injection today. I much prefer the humira pen to the cimzia syringe! I am feeling more hopeful and cautiously optimistic.

(RA started grumbling LOUDLY a few days ago, so it make the decision a lot easier.)

Thank you again for the support. You are all amazing! x

tkachev

I hope it works for you. I can remember when I took it I had gone past the caring stage as the pain was just so awful.

Definately no harm in giving it a go, keep us posted.

Elizabeth x

Mat48

Been away a while Sophie but I'm so glad you have decided to give the Humira a go. We have had visitors and one of these is a high powered doctor who has studied the biologic drugs as part of her job reasearching for the pharma industry. She raved about Humira and said if she were in my shoes this is the drug she would be aiming for. She was rather a soothing guest to have around while getting back into the swing of things with methotrexate injections I must say

I really hope that side effects are minimal but excellent effects are maximum. Good luck with finishing your dissertation. My son handed his in a few weeks ago and has his final exams on Monday and Tuesday. I'm really nervous for him because he's set his sights on a first and I really don't want him to be disappointed although I'll be just as proud of him whatever.

Take care and I'll watch out for how you are getting on with the Humira.
Mat xx

stickywicket

Yippee! I hope things are on the up

dreamdaisy

My rheumatologist raved about humira, it's a pity that I am 'treatment resistant' as she puts it.

Good luck with it, Sophie, I hope it does the trick for you as it has for Scorpio and a couple of others on here. DD

ichabod6

Hello Sophie,

You made the right decision. Now get stuck into your exams etc.
I am currently supporting my grand daughter who is rapidly
approaching the end of the third year of her four year degree course.
Her first exam is tomorrow.