Looking for some reassurance about Humira - new to forum.

jceeyore1975

Hi there,

I have just phoned the free phone helpline and spoke to a lovely guy who pointed me in the direction of the forum.

I am really hoping that someone will be able to offer me some words of wisdom or are happy to share their experiences of Humira.

A little bit about me ....

I am 36, married and have a young family. I have had Psoriasis since I was about 15 and was diagnosed with psoriatic arthritis about 6 years ago. Initially, it wasn't too bad but gradually more joints became affected and about 18months - 2 years ago I started on Methotrexate and then combined that with Leflunomide.

I still have some sausage digits / dactylitis and fingers that don't bend very well. I also have pain in my lower back / hips and find some day to day tasks tricky.

I have been lucky (I guess) in that I have been given the chance to start Humira. Part of me is excited as I have heard it works well for some people. The other part of me is 100% absolutely petrified - due to the incredibly long list of very very scary side effects.

I can still live my life - sure some things are hard to do and I am stiff and sore but I am finding it so hard to rationalise these awful side effects with perhaps my very mild form of the disease.

I know only I can make the final decision but I don't know what to do. I guess I have nothing to lose by trying it for 16 weeks but .....

Ideally I really want to talk to someone about this but don't know who to talk to. Will the BUPA nurse have time to listen to me when she comes out to supervise my first injection.

Any words of wisdom would be greatly received.

Thank you

JC

vonski

Hi JC

Sorry I can't help you as know nothing about psoriatic arthritis but I do know how scary these things can be. Hopefully if you do go for it you will find things ease. I'm sure someone will be along soon to chat that knows much more than me. I didn't want you to think you were alone and to welcome you to the forum.

Love
Vonski

prefabkid47

Hi JC
Welcome to the forum,sorry you had to find us.I don't have PA,I'm sticking with RA and OA at the moment!!
I have no experience of Humira (am on methotrexate),but I know a number of members are on it,it's a topic which does come up.
Ron

tillytop

Hello JC and welcome from me too!

I have had Humira for RA - and it really helped my joints. I want to take the time to reply properly to your post but won't have the opportunity now until tomorrow evening at the earliest. So just saying "hello" in the meantime and letting you know that I will reply. As others have said there are others on Humira and hopefully they will see your post and reply.

Tillyxxx

dreamdaisy

Hello, it's nice to meet you but I am sorry you have had to find us. I too have PA, I have been taking humira since July 2009 and so far I have not had too much trouble with side effects. LIke all these meds you won't know what will happen until you try - just as we all vary in how we are affected by inflammatory arthritis so we all vary in how we react to the meds. I have had a very difficult day (not arthritis-related) and cannot say much else for the time being. I wish you well. DD

jceeyore1975

Thank you to everyone who has taken the time to reply to me. It is interesting hearing everyone's take on this and I appreciate you sharing your experiences.

JC x;)

tillytop

Hello - not forgotten you but will have to delay my proper reply until tomorrow, sorry.

Tillyxxx

valval

hi from me can not help as not that far along but as the others have said it affects everyone different there are very few who get all the side affects and you will be well monitered can you phone your rhummy nurse they can help with good advice.
what ever you decide remember dammage can not be repaired so stopping it in the first place by far the better idea good luck val

tillytop

Hello again JC.

Finally a proper reply – sorry for the delay.

First, just to say that your fears are completely understandable. I have been at this for 16 years and have taken many, if not most, of the available meds – yet I still get concerned about starting something different. So my tactic these days is to give whatever it is a go – telling myself (not necessarily the consultant!) that I am just “trying it out” and that, if it is not right for me I will stop. That way I feel I can cope because I am giving myself a “let out” if need be. Sounds silly maybe but it works for me.

As to Humira specifically – you are right that it has a long list of potential side effects but in my experience most of the meds we take for inflammatory arthritis do – and if my memory serves me correctly, the potential meth and leflunomide side effects make pretty scary reading too. And although you say you have a mild form of PA, which is great, the docs would not be suggesting an expensive drug like Humira if they didn’t feel it was necessary to try to keep your disease mild. And it’s easy to forget that damaged joints can’t be un-damaged, so anything which can stop the disease progressing is worth a try in my book.

Obviously this is a big decision for you and I understand why you feel you would like to talk to someone about your concerns – do you have a rheumatology helpline at your hospital which you could call? Most hospitals have them I think and you could hopefully then have a good chat with the rheumatology nurse beforehand. I wouldn’t wait to talk to the nurse who shows you what to do because I did that and the nurse sent by Healthcare at Home (who organise the Humira) didn’t know anything at all about the drug and was just there to show me the “mechanics” of doing the injection.

Finally, just to say that, when I have had drug side effects – they have either disappeared as I got used to the drug, or have gone once the drug has been stopped and worked its way out of my system.

There are other Humira users on the forum so hopefully you will hear from them too to help you with your decision.

Good luck with whatever you decide.

Thinking of you.

Love Tillyxxx

jceeyore1975

Thank you for your lovely warm reply Tily. What you wrote made complete sense and I really appreciate you taking the time to respond.

There are times it would be useful to have a crystal ball so we could see what our conditions would be like a few years down the line so that we could make an easier decision whether taking the drugs would be worth while - but we don't so we stab in the dark and hope we are making the right choices.

I doubt I will hear from BUPA before Christmas now and I am only guessing that the rheumy nurse help-line will be closing too .... I am feeling more positive though and think I will take your line of try and see. I believe with Humira they won't let me take it for more than 4 months if it doesn't work, so I guess that is my get out clause.

JC x:-)

Firemanphil_39

Well, I've got pa too... Recent diagnosis (12 months ago) and I started anti TNF 3/12 ... And it's BRILLIANT...

I've stopped the sulphasalazine ( not seen rheumy about it yet) . Reduced my meth to 17.5

I not get any side effects and I'm back on the bike.. Did a 60 mile ride other day...

I feel ACE...

Good luck..
X