Kickas.org Forums Treatments, Drugs and Alternatives Anti TNF and other biological medications Anyone here on Humira?

Hi Sue, I've been on & off Humira since last september & I have had quite a few side effects. Had to have brain scans because it mimic'd MS, also have problems with colds & a runny nose, sort of like hayfever. But it is fantastic for the pain.

best of luck Sue

Mez, also from Oz

Hi Mez!

Thanks for your post. Nice to see another Aussie here, tho of course it's a pity it has to be this horrible disease that brings us together.......

Great to hear Humira is working so well for your pain. I have the same side effects (like your allergies) from Enbrel too, and I think they'd already started with MTX b4 that, but it's not been nearly as effective for the pain as I'd hoped, unfortunately.

The brain scans/MS thing must have been worrying Can I ask what sort of symptoms you were getting, and have they stopped now? (I did read that it can mimic MS, and I believe Enbrel can too.) I s'pose anything that's suppressing the immune system can cause all sorts of weird things?!

Good luck to you too.

Sue

Hi Janet,

Yikes! You've certainly had a rough time with MTX haven't you?! Another lady I know, who has RA ended, up with Viral pneumonia, liver shutdown, and all sorts of horrible problems caused by MTX too. She had to come off everything except cortisone for months, and almost died! Another person I know with AS also had a really bad reaction to MTX and it caused liver probs with her as well. She also was allowed to have cortisone only for a long time.

I'm keeping my fingers crossed b/c the reason I went onto MTX in the 1st place was due to a severe bout of iritis (right at the back of my eye - it never turned red, and apparently I could have lost my sight, or at least needed an injection into my eyeball to save it - yuk!!)After 2-3 months of no improvement at all, when it didn't respond to cortisone eye drops or tablets, MTX was really a last resort. I've been on it ever since (must be about 8 years) and (touch wood!) haven't had iritis since. (Fingers crossed, etc. I'm not really superstitious!! )
My dad suffered with regular attacks of iritis/uveitis all his adult life - he went thru hell with it

I've tried Plaquenil but it made my eyes hurt, and Sulfasalazine upset my stomach really badly (turns out I'm allergic to sulphur! as is my daughter, who has Crohn's, so she's on Mesalazine which is similar but w/o the sulphur)

I'm also taking Indocin and Naprosyn (both NSAIDs). Rheumy's hoping to get me off at least some of the meds eventually, but no luck so far.
I also take 30mgs Oxycontin 3 x daily, with Endone in between for breakthru pain
I'm sure I rattle when I walk!! LOL

I didn't find anything about "bone necrosis" in the list of "possible side effects" for Enbrel, but it was definitely on the Humira list. Rheumy didn't seem to think there was much, if any, likely difference between the 2. I just hope and pray he's right.

I know it's probably not a good idea to read through all the blurb that comes with these nasty meds, but they do tell you to, and to report anything that happens to your doc.....
Anyway, rheumy's persuaded me to give it a go, but to stop if I have any probs, so I guess I'll have to bite the bullet. Not very happy tho. I was hoping he might try me on twice weekly Enbrel 1st instead

Oh well, I will keep you posted - thanks.

Good luck,

Sue

Hi Sue
Lovely to see you!

Shug is on Humira, well he's off and on it actually. With Shug it causes increased liver levels and he's had to fight to remain on it. He has good results after about a month on it, but will have to have a month on and a month off because his Rheumy will only allow his liver levels to get so high before pulling the drug. However, Shug would rather have a month now and then of being able to live a reasonably normal life.

I think you have to weight up quality of life NOW against the side effects that may happen. Shug has very little quality of life when he's not on the Humira and together we decided that having a reasonable quality of life now is of more importance to us that the fear of side effects and the long term effects of the drug. However, it's a very personal decision, one only you can make.

Take care Sue, lovely to see you again

Jackie
x

Hello again Sue, The symptoms I got were problems right down my left side & I had a couple of fall's. Must have looked funny. The doc's thought it was a stroke at first. I had to stop the Humira for 2wks & things went back to normal. I've just gotten over a 5wk chest infection, had another 2 injections & now have another cold. will miss my injection tomorrow so I can fight this latest cold. Yes life's tough at the top. Can I ask you what part of oz you are from? I live 4hrs from Melbourne in East Gippsland. & after 21yrs of the dredded AS & FM, & feeling like an alian from another planet, I've only just recently met another person with it, & he's amazing. He told me about the kick AS website, I now feel like a HUGE weight has been lifted. I've shut myself away from the world for yrs because people just don't get it. Anyway I'm finding my way around the site & love'n it. Thank you for writing back to me, Hope Iv'e been of some help.

Mez.

Hi Jackie!
Lovely to see you again too

Sorry to hear about Shug's liver probs with Humira, tho it's good that he's at least able to have it alternate months I s'pose. (Better than not at all.)
I agree, it's got to be a toss up between the pros and cons, and how you feel NOW, rather than worrying about what might happen in the future.....sigh....
I guess Enbrel has made me feel so much better than I did b4 I took it that I've forgotten how dreadful I was a year ago. I'm just not feeling good enough to have much quality of life outside the house, whereas b4 I didn't even have that. I'd hoped for so much more, especially after reading how well some ppl are doing on it.

My GP agrees. I have to do what I feel is right for me, and if I don't try Humira I'll probably always wish I had.

Thanks for your post. Take care, and best wishes to Shug.

Hugs,
Sue

I know it really helps a lot of people.

I had a severe reaction to it. I hated that so bad because I could tell it was going to help my pain even with my reactions. My bp dropped to 48/40 and took about 4 days to get half way normal and my face swelled up like a balloon. The dr. told me absolutely no more. In fact I haven't handled any of the Biologics or TNF's well so he won't give me any more. We are just doing 3 P's in a pod. Pain pills, Prednisone and Physical Therapy. And No it is not helping.

My PT is sending me back to him. I have an appt. Tues. She said I can't wait until regular appt. time. I have been going since January now and I still can hardly walk and my pain is so bad. I am thinking that by now I am wasting money.

I don't know what he will do unless he increases my pain meds because I am not going to increase my Pred. That is what stirred up this Diabetes, supposedly. I know that every time my brother gets an injection his sugar goes sky high and he can't have any more either.

Sometimes, we just can't win for losing. Oh well, that's life. I am so very thankful to have another day here even if I hurt. I think I have finally learned the "one day at a time living" and I am so thankful for that.

Sorry, I got off the subject. No, I don't take Humira. Should have been that simple. Sorry.

Have a good rest of the weekend.
Blessings.
Possi

Hi Possi Lovely to hear from you.

So sorry about the dreadful reactions you've suffered with from the TNF's/Biologicals etc. None of these meds come without some sort of side effects do they? It seems to boil down to a choice of which is easiest to live with (or, I should say, the least unpleasant/harmful?!)
B4, and for several weeks after, my spinal op in 2005 I was only allowed the "3 P's" as well, and I was in agony! I simply can't exercise without NSAIDs, so the surgeon took pity on me and allowed me to go on to a low dose of Voltaren after a couple of weeks as I was in so much pain (he said anything else would stop me healing properly ) Even the extra morphine wasn't helping.
I also find Pred really aggravates my jaw pain, as well as all the other, usual probs so, like you, I hate having to be on it

It's a hard thing to have to learn but "one day at a time" seems to be the only way sometimes, especially in the middle of a flare. You're right, not being able to do right for doing wrong is not fair! Having to cope with Diabetes as well as all this $#@& must be the absolute pits!

I do hope your Dr can come up with something to help you soon.

Hugs,
Sue

Hi Mez,I'm in Perth.
I know what you mean about the relief of meeting someone/s else with AS. It took me over 20 years to finally get a dx (being female and HLA-B27neg is a definite for getting an AS dx, even when all other the symptoms fit!!) I was lucky enough to stumble across this site soon afterwards tho (once I knew what I was looking for!!), and it's been my 2nd home ever since.

There can be nothing more frustrating and depressing as being told "it's all in your head".....sheesh! Like you I stayed away from docs for many years after that in case they "put me away"!! I also felt hugely relieved when I finally found out what I had, at least until the reality sunk in, and I realized what a battle I had on my hands
It seems as soon as you think you have one problem under control, along comes another one! Never a dull moment with this disease.....Thank goodness for KA.
I see you've got FM too? I wonder if it's all part of the same thing sometimes?

Glad you didn't have a stroke back then, but it must have been a scary time for you? Hope you can get rid of the colds and infections and get back onto the Humira again.

Thanks for your help.
Good luck and take care,
Sue

Take care of yourself.
Blessings.
Possi

Well, I lost the whole top part of message. Don't know what happened. I have to get up so I will write again in a little while. Strangest thing I have seen.

Possi