Anti-TNF Side Affects - Humira Ankylosing Spondylitis

clairek

Hello
I recently started anti-TNF treatment for Ankylosing Spondylitis and have been having some problems. I am interested to know if anyone else has experienced anything similar. I will summarise below and any advice or guidance would be greatly appreciated. Thank you

I started on Humira (Adalimumab) in November. I have 3 injections so far.
After my first injection I had headaches dizziness and weakness in my arms and legs and I was tired for the full two weeks.
My Consultant said after blood tests and 2 appointments with him to take the second injection.
After the second injection I had a headache and dizziness but this didn't last as long but I still felt fatigued.

I took my third injection as planned too. I had a headache and felt dizzy. The next day I developed a sore throat. This developed into a severe chest infection and sinusitis. I have never felt so poorly from a cold/infection before. The first lot of high strength anti-biotics had no effect whatsoever and I am now on even stronger ones but so far 4 days into these I am still feeling awful.

I know the anti-TNF surpresses the immune system but I wasn't prepared for a cold to have such an impact ( I have never previously had sinusitis and rarely got colds) I have had a flu jab and pneumonia vaccine.

Over the past 6 weeks my quality of life has deteriorated. I have not felt safe to drive due to the fatigue so have become increasingly isolated. I had days before treatment where I was like this but I'd say at least 2 days out of 7 in a week I could drive myself and felt up to going out. If someone else was driving more days than 2 as a rule. This often varied week on week due to symptom fluctuation.
After the second injection I did what for me was a relatively normal work day and felt horrendous and so unbelievably tired and wiped out. Much more so than before I started treatment.
I know Humira can take between 2 and 12 weeks to work and maybe I have just been unlucky getting a cold at the mid-point but I am really struggling.

I am unsure whether to continue with treatment next week given how much of a cold I have had and the affect the treatment has had so far. I will have finished taking my anti-biotics by the time my next dose is due.

I am very disappointed so far by my experience on Humira. It was sold to me by the Consultant, Physio, Rheumatology Sisters as something that would improve my life dramtically but I am finding it difficult to understand how something with such severe side affects can be doing me any good?

If anyone has experienced anything similar or has any information to share I would be very grateful.
Thank you for your time.

tillytop

Hello Clare and welcome to the forum! I did try to reply to your post yesterday evening but for some reason I lost my message and it was too late to try again.

Anyhoo, just saying "hello" and that I will reply properly a bit later on.

I have experience of Humira for RA and I know there are other Humira users here too so I am sure you will get some more replies.

In the meantime, glad you have found us. We are a friendly bunch with loads of arthritis related experience between us and you will be made very welcome.

Tilly xxx

dreamdaisy

Ah, I was told that about humira - what a bunch of non-arthritic fibbers work in rheumatology. I have been on it for over three years now, my bloods are wonderful (which is a good thing) but the quality of life? :roll: I am very fortunate in that I don't struggle with those sorts of side-effects (it's supported by 15mg of injected meth) but it has led to extra pills for raised BP which is attributble to the humira. The difference between us, however, is that I don't have AS, just good ol' psoriatic arthritis.

When I catch a cold I stop the meth and humira (on my hospital's advice) so that my immune system can 'fire up' a little and help to clear the bug, but I also am no stranger to anti-bios to help matters. Thesed meds do leave us open to infections, I am always washing my hands and usually have antiseptic wipes to hand for hand rails etc when I'm out and about: it's sounds neurotic but I know I am vulnerable and I also know I may not realise how serious the bug may be as I may not produce enough symtpoms. We teeter along a very narrow tightrope - experience helps us to better balance. Good luck, keep in touch and maybe a good chat with one of your rheumatology nurses could be helpful. DD

clairek

Thanks Tilly and thank you DD. I feel like I have been totally let down in what I've been told. I have a check up soon and a big list of questions. I have spoken to the Rheumatology nurse a lot but they are quite blase about things and I end up feeling like I am being a bit neurotic.

Personally I don't think whilst I still have symptoms of infection I should take anymore Humira until I am clear of it from research and reading which confirm DD's stance.

I also feel that I was doing well to cope with my AS symptoms even though it was frustrating as the uncontrolled inflammation was making life pretty difficult to get any sort of regular exercise regime in place. The point was though that I felt more in control...

I feel stuck between a rock and a hard place at the moment...

dreamdaisy

The meds are supposed to give that control so we can get on with things; the only thing we can control is our attitude towards the disease. I learned from someone on here that my arthritises have to learn to live with me, not vice versa. Sometimes they get the upper hand but most of the time I do (whilst making sure I don't offend them too much ).

These meds are very powerful and they can cause more trouble than they're worth BUT if they do begin to ease the worst of your symptoms then that has to be a good thing. It is hard, however, to determine when the perseverance should stop. Please talk to your rheumatology team about stopping your humira when you have a bug, I find it works for me but I do it with the full knowledge of my team and it was their advice in the first place.

We know all about rocks and hard places on here, we're all in that situation because we are damned if we do something and damned if we don't. It's not easy. DD

tillytop

Hello again Claire (sorry, realised I spelled your name wrong before)

I really feel for you and I am so sorry that you are, understandably, struggling hugely with all this. I have, thank goodness, never suffered with more/worse infections whilst on the various RA meds. However, some of the meds over the years haven't agreed with me (Humira being one of them) and I have learned now to speak up if I feel that the side effects are not worth the benefit and to ask the consultant if I can discuss alternatives. As DD says, it is a complex balancing act, weighing up benefits/side effects and never easy to manage. I know from experience that when you feel so poorly, taking the bull by the horns and telling the consultant a particular drug does not seem to be right for you is a really hard thing to do. But I maintain that we know our bodies best and we know when something isn't right - even if others take some convincing.

From what you say it does sound as if this nasty infection you have has really got a good hold on you and I agree with DD that it would be a good idea to talk to your rheumatology nurse/rheumatologist about the possibility of stopping the Humira until you get properly better. And at that point, maybe the discussion with them could be around whether to give Humira another go or perhaps to switch to an alternative to see if that is better for you.

I think it is so unfair of your rheumatology team to almost promise that a particular drug will help you, because as many of us know from experience, that is never something which can be said about the drugs we take for our assorted inflammatory arthritises. Nobody yet knows why some of them work brilliantly for some people and have no/limited benefit for others and why some people take them without a problem and others have unmanageable side effects. I have always been lucky in that the rheumatology team have been very honest with me, saying that these drugs can be absolutely miraculous for some people but they can't promise.

I can't think of anything more to say Clare - except that I hope you can have a productive discussion about stopping the Humira until you get over this nasty infection and see how you feel then. It makes sense to me to that, if you are not getting over this infection, keeping taking a drug which suppresses your immune system is probably not helping

Please do keep posting to let us know how you get on.

Thinking of you.

Tilly xxx

clairek

Thank you Tilly and DD. It really helps to connect with peole who have been through similar issues and have a view point.

I have managed to get an appointment tomorrow with a nurse specialist after much to-ing and fro-ing. (I have been in contact with the hospital pretty much every day for the past week and a half) so with what little voice I have a present will raise my concerns.
My consultant isn't in clinic until next week so will ask for a referral back to him if I don't feel confident in what I am told tomorrow.

I have been here before when bog standard anti-inflammatories haven't been useful and with all kinds of other meds and it is hard to fight. I had to fight to get the AS diagnosis as a leading rheumatologist dismissed me as having fibromyalgia 5 years ago.
I try not to take any nonsense now for as good as some professionals are, no-one knows your body better than you.

The build up to this treatment was so great and the promises so big that whilst I didn't get my hopes up based on past experience the affects have been so awful so far that it hardly seems worth it. I expect things not to go plan but I think my family / partner / friends always expect more so it hits them harder when things don't go to plan no matter how many times I tell them how unpredictable it can all be.

I'll let you know how I get on... thanks again

ritwren

Clairek, you've been through a real rough time. I hope all goes well with your appointment today.

stickywicket

I hope the appointment goes well today.

tillytop

Hello Claire

Really hope you had a positive appointment with nurse today.

Thinking of you.

Tillyxxx

clairek

Thank you everyone. My appointment was OK. I had a precautionary chest x ray and have been told not to take anymore Humira until I am symptom free. I am still struggling with my cold and ridiculously tired.

I am not going to take any more Humira until I can speak to my Consultant as he was away last week. My Sacroiliac joint was immensely painful still so they are not sure how well the anti-TNF is working anyway although I know it can take up to 12 weeks and I am only 6 weeks in.

The Rheumatology nurse was nice enough but when I explained what was going on she kept on going in and out of the room to speak with the registrar. I thought it may have been useful for the registrar to come in given how many times she went back and forth and the dithering over whether or not I should have an x ray or further tests etc.

I am very unsure about whether to take anymore Humira but not going to think about it until after Christmas now.

Enjoy the festive season everyone

dreamdaisy

They've told you not to take it so I would follow that advice. Something isn 't right with you at the moment so I would err on the side of caution and stop the humira but keep up with your other meds if applicable.

People without arthritis are used to feeling poorly, going to see a doctor, getting some tablets and lo! they get better. Arthritis don't work like that. We see the doctors again and again and again, we take lots of meds again and again and again and stuff still goes wrong. It isn't easy for us, Claire, far from it. Have you read The Spoon Theory or There's a Gorilla in my House? They beautifully sum it all up. Take care. DD

Jimmifloyd

Hi Claire,

I am just wondering how things have developed? I have suffered with AS for 8 years now. My rheumatoligistc has recommended Adalimumab and has advised me that although it won't cure my condition it will help and WILL stop the fatigue. I am intrigued to know if after the initial period things improved for you?
Due to the length of time that I have had AS, I have almost in a way got used to it and the lifestyle changes that it has brought with it. However I do still struggle greatly with fatigue.
I hope things worked out for you and improved.

James