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#441446 - 04/28/11 07:04 PM Humira not working? or just symptoms
KickASaurs Offline

Registered: 11/11/09
Posts: 333
Loc: Sydney, NSW, Australia
Hi All,
My humira has been good on me for quite some time, but gradually all the symptoms of AS are coming back. Even after yoga and other precautions. Like backache so much that I am getting up early, not as stiff though. But uncomfortable all day, SI joints hurting.
Also the list of side effects, random rashes, bleeding gums, dizziness, not sure if dry eyes are related to it.

BUT the ESR and CRP are in normal, actually quite low ranged.

Is this normal or should I get back to rheumy?

#441497 - 04/29/11 10:39 AM Re: Humira not working? or just symptoms [Re: KickASaurs]
sooner Offline

Registered: 07/24/09
Posts: 296
Loc: oklahoma
I don't know but i was really doing good but it got to where it was'nt lasting as long doc moved my shots up to evey 10 days doing better now but now i'm sick and can't take my shot today. good luck ansh
Life is short stop and smell the roses

#441616 - 05/01/11 03:58 AM Re: Humira not working? or just symptoms [Re: sooner]
avonldy Offline

Registered: 02/26/10
Posts: 2190
Loc: N. Sacramento Valley
I have been taking Humira since last June and lately I have been wondering if it is beginning to fail. When I first started, I was almost pain free. Now the pains are beginning to sneak back, a little at a time. I am still feeling better then I did before I started Humira, I have no stiffness and I usually sleep well. I am wondering if I need to add MTX to the mix, or switch to another biological. I will be seeing Rheumy in about 6 weeks amd will be talking about what to do.
Cherish your yesterdays,
Dream your tomorrows,
But live your todays.
Do the very best you can
leave the rest to God.
God Bless,

#443988 - 06/01/11 06:53 PM Re: Humira not working? or just symptoms [Re: KickASaurs]
Timo Offline

Registered: 07/16/01
Posts: 3333
Loc: BC, Canada
I was taking the Humira injections once every 2 weeks for about 4 months. I got sick with a huge sore throat and congestion that lasted quite a while. I also developed some nerve twitching on the arms and legs so I've quit it.
It's been over 3 weeks without Humira (I know it has a 1/2 life of 2 weeks) and I can say I don't feel any different, really, than when I was taking it. No more nerve issues and that congestion has cleared up.
"Sir, it's not the disease that's doing you in, it's the cure!"

#444262 - 06/05/11 12:19 PM Re: Humira not working? or just symptoms [Re: Timo]
finnari Offline

Registered: 06/02/07
Posts: 517
Loc: phoenix
Timo i find when i stopped TNF's at about the three week mark the pain started coming on.

#444337 - 06/06/11 10:28 AM Re: Humira not working? or just symptoms [Re: finnari]
Timo Offline

Registered: 07/16/01
Posts: 3333
Loc: BC, Canada
Thanks finnari. I seem to be noticing a few more aches these days and it's about 4 weeks.

#444745 - 06/11/11 02:58 AM Re: Humira not working? or just symptoms [Re: KickASaurs]
Boroboy Offline

Registered: 10/25/03
Posts: 467
Loc: North East, U.K.
I have been taking Anti TNF now for around 8 years. 6 years on Remicade, 2 on Humira (still taking it).
I found Remicade gave me the best pain relief initially, 7-10. Humira generally works well for me, 6-10, though I'm not pain free. Some days better than others. I did go through a bad spell whilst on Humira, allot or pain for around 6 months. Think prob due to landscaping my garden. Thing's have settled down for me now. Neither am I taking any other pain meds, just the Humira. I go 2-3 weeks between injections. I have found to be more tolerant to Humia than Remicade. suffered from more side effects from Remicade. Side effects I have suffered from whilst taking Remicade over 6 years:- skin rashes, sore throat, raised alt's & slight ear ache. Humira:- occasional slight sore throat & occasional slight ear ache. Nothing else (touch wood), not inc eye probs.

I also suffer from dry eyes & am now light sensitive within my right eye. Have to wear sunglasses indoors & out now. Have been like this for 3 years now. Had my first ever iritis flare 3 years ago within my right eye. After 6 months of treatment, inflammation has now gone within the effected eye. Left with some scaring to my inner lens now. Unfortunately still photophobic though. Something I just have to live with. No idea if there is any relation between dry eyes, photophobia & Anti TNF? After 3 years of seeing eye specialists, have just been referred to see an dry eye specialist. also have 1 of my lower tear ducts plugged within my effected eye.

In relation to your pain levels & Humira, I'd give it a little longer yet. You may be going through a flare, perhaps without Humira you would be feeling even worse.


#444756 - 06/11/11 12:07 PM Re: Humira not working? or just symptoms [Re: Boroboy]
finnari Offline

Registered: 06/02/07
Posts: 517
Loc: phoenix
I had a lot of problems with my eyes before TNF inhibitors and they continued. Yes I had very dry eyes. I was also waking up at night with severe eye pain. I would open my eye and it would scratch my cornea. A couple of eye specialists just blew it off but I saw a younger one and he did surgery. It helped immensely. He said I was waking up and the eye would scratch the cornea. The surgery was quick and painless.
I was on enbrel when that happened.

Now fast forward years later and I virtually have no eye problems. I am currently taking humira. My eyes used to be very dry. Not the case anymore. Really a mystery.

#444790 - 06/11/11 06:29 PM Re: Humira not working? or just symptoms [Re: finnari]
Boroboy Offline

Registered: 10/25/03
Posts: 467
Loc: North East, U.K.
Pleased you have found some relief from your eyes now.

I had no issues with my eyes, prior to Anti TNF. Link or not, really don't know?
I have also been to see numerous specialists, most not really interested & offer no solution. Even travelled to London to see one privately. Also tried tinted contact lenses to help with photophobia, eye's too dry to cope with contacts.
Have now just been referred to see an dry eye specialist, after 3 years. Not even sure if my dry eye the reason for my photophobia within my right eye. Hopefully will have both tear ducts plugged within my effected eye by my next specialist. At mo, have lower tear duct plugged within my effected eye.

The best artificial tear product I've found is Hyabak (pres free). Have to use every 15 to 30 mins, whilst awake. Sunlight is a killer. Wear cat4 glasses whilst outside all the time, even to watch TV indoors. Same can be said for over head supermarket lights.
Still I've had 3 years to adapt to this prob in the best way that I can.

At least my AS not too bad at the mo. Would not like to choose between the two though. I have had days where I've not been able to leave the house, due to eye pain. Fortunately this is not often (touch wood).

What surgery did you have?


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