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Posted By: Kevin_Ray Scared of possible side effects of Humira - 03/28/11 08:49 PM
I am new to KickAS, stumbled upon here while browsing about AS. I was diagnosed with AS in October last year. Started Humira in November and have been on it since. Ive done eight injections so far every two weeks.

I am scared of the possible long term side effects of Humira, or any other tnf blockers.

Humira has made me feel almost 100% again. I started having constant pain 5 years ago when I was 23. The Humira starting working imediatly for me so I do not want to give it up. So far no major side effects. Just a few headaches and heartburn. I dont know if the heartburn is from the Humira or not. I have much more anxiety now than I used to and I'm much more emotional which is a little wierd for me.
I think I am still trying to accept that I have AS and will have it for the rest of my life. I guess it is good to finally know what has been causing my back pain for so long though.
When I was diagnosed I was glad to know what it was, but lately I've been kind of depressed and have lost some motivation.

I am hoping that I can get some advise from people that have been on this drug and lived with AS for several years about side effects.

Thanks for reading and for any input.
Hello Kevin.

Yes it is for life and jolly painful, thus if you can take the pain down with humira then great. I take Enbrel, the sister I think to Humira. I get some relief too. All drugs have side effects and as such their share of scaremongers too. For my part, apart from initial minor reactions to Enbrel, have had no side effects. The effects I did have, disappeared after about 12 weeks, perhaps then it might be best to stick with it a little longer and monitor the effects and enjoy pain free days. Of course though in all cases, keep your medical team apprised of your concerns and act on what they say. This site offers no qualified medical opinion, but obsevations on the experiences of fellow AS'ers. Enjoy life


Alan G
Thanks for your reply Alan. Im glad to hear that you dont have any lasting side effects from the Enbrel. how long have you been on it?
My doctor told me that any side effects from these drugs would go away with stoping the use so I am trying to not worry too much about it. It is nice to read about the experiences of others with AS so that I can have an idea of what to expect throughout my challenges.
I have been taking Humira since last June and for me it's been a lifesaver. Before I started the Humira I was in awful pain. I couldn't sleep more then just 3 or 4 hours at night before the pain woke me up. I was taking narcotics all the time. Now I rarely take anything stronger then an Ultram and that is only once in a while.

I read about a lot of side effects of taking Humira, but from what I have read, they are very rare. I do know that being in constant pain can cause even worse side effects.
kevin, aloha

could i be so bold and ask which things about these meds scares you?
Initially when I started on Humira I was excited that it was working for me so well, although it has always been a little hard for me to do the injection.
I am afraid of how it suppresses the immune system. I have always had kind of a weak immune system. I have increased my vitamin and mineral intake throughout the winter and fortunately made it through without getting sick very often.
I am scared of the possibility of getting some kind of fungal infection or a skin disease. I know that psoriasis is one of the side effects stated in the brouchure for Humira but it is also a treatment for psoriasis. That doesn't make sense to me.
I have read things about people that end up having mental issues including memory loss or personality changes, that are blammed on tnf blockers.
I don't know if these drugs can cause digestive problems or GI track problems like the NSAIDs do, but I am worried about that too.
I have been having lots of heartburn lately, my anxiety has increased quite a lot, I've been a little depressed also. I am naturally pointing the blame to the meds because even before being on them I wasn't like this all the time. I don't want it to be the meds because they are making me almost pain free.
Im just really worried of adding other serious problems to my list.

Thanks for your replies.
Posted By: Irish Re: Scared of possible side effects of Humira - 03/30/11 11:45 PM
Hiya, Kevin Ray

Nothing wrong with being scared/aware of the side effects of Humira (or any medication), it's only sensible. But... there is a danger of too much information. For instance you say:

QUOTE: I have been having lots of heartburn lately, my anxiety has increased quite a lot,QUOTE:

Anxiety, itself can cause heartburn, so can poor diet, eating on the run,spicy foods...

I've been on Humira for a year now, like you, delighted at being pain-free - almost can't believe it. Something so instantaneous has taken away YEARS of pain. Of course there's bound to be a catch.

Isn't there?

I guess we have to weigh up whether the 'maybe' side-effects we've been told about are enough to stop us having an active life - with our kids, our families, ourselves.

I don't know myself. It does still scare me.

It's sites like KickAs that keep us informed. The power is in our hands now. ;-)

Remember, everything has a side-effect, even life.
k, aloha

your package SHOULD have a huge brochure in it...NOW !!!! you must remember that big pharma creates meds for RA and then after approval tests for efficacy for AS patients

RA and AS are NOT the same...different stats, so don't be alarmed about 'associations' for ra patients; aware but not alarmed...there will then be a different table for AS folks.

there are things pharma is not real helpful about telling you but those test results in lit are real, documented etc.

that's a start.
aB
Posted By: mig Re: Scared of possible side effects of Humira - 03/31/11 09:53 PM
Hi Kevin_Ray,... welcome to KA! Glad you found us.

Really good to hear that humira is providing you with so much relief and is working effectively.

I think it is fairly natural to worry a little, especially when you are still relatively new to the diagnosis and still fairly new to this medication.

I would try not too worry to much about the small risk of getting a fungal infection or skin disease. Being mindful of any new or unusual symptoms that may come up is your best defence, so knowledge is important. The risk for developing new-onset psoriasis is very low and yep, paradoxical, (may have something to do with an underlying predisposition), and gets even lower after the first 3 months on the med, if I remember correctly. Plus, the more concerning things are usually reversed by simply stopping the med.

If you think you are getting a flu or chest infection, just delay your shot and speak with your rheumatologist to check when it is safe for you to resume. When in doubt - ask your doc, that's what they are there for! smile

I've been on Remicade (same biologic class of medication as Humira) for nearly 6-1/2 yrs now, with no problems, no side-effects, and far fewer colds than I used to get. I use hand-sanitizer when out to a mall or grocery shopping and I try to avoid sick people! Seems to work really well -- and the Remicade has been a huge blessing and has literally given me my life back.

Give yourself some time to get used to the concept of having AS. It takes a bit to get your mind around it, I know. Your feelings of depression may have more to do with this or with living with chronic pain, than the Humira. If the depression has been around for a bit and isn't going away, mention it to your doc and get some treatment. Pain and depression are physiologically linked.

Good luck and I hope it helps to know that you are not alone.
mig
Thanks for everyones replies, makes me feel better about taking the meds. I'm glad to hear that they are working so good for you.
It is nice to hear from and talk to others with AS just because most people don't know how it is to have this chronic condition.

I do suppose that it basically is a decision on my part to take the meds or not, so far I continue to do the injection every two weeks. Thanks for all the advice, it is much appreciated. I may be asking for more as I have learn more about living with AS.
When I was first diagnosed it didnt bother me much that I had this just beacuase I was glad to know what was causing all my systems, but for the past month or so I have been having a little difficulty accepting it.
Thanks again everyone...
Kevin
Posted By: mig Re: Scared of possible side effects of Humira - 04/04/11 09:57 PM
Hey Kevin, glad that we could all help to add a little perspective for you, especially if it's helped to put your mind at ease.

Accepting the diagnosis really is a process, when I look back, I think it took me in the neighbourhood of 3 years to really get my mind wrapped around the concept of having a chronic illness and it's different for everyone... but you will get there too. yes So give yourself some time and don't be surprised if you go back and forth on the acceptance thing for awhile. For now, all you need to do is get back to living as best you can, ask your docs for help when you need it, make them aware of any changes, read up on AS if that helps or just ignore it for awhile if that helps more.

Any questions, just fire them at us and someone here is always bound to help!! The friendly support I've found here has been a big comfort.
Nice to have you in the group!
mig
Posted By: Pea Re: Scared of possible side effects of Humira - 04/20/11 10:50 PM
Thank's everyone for the encouragement offered about taking the TNF blocker's. I am in incredible pain and waiting to see my Rheumatologist next week to talk to him about starting a blocker. My percocet barely get's me through the night now and the Sulfasalazine is not working but I have only been on it for 3 week's. I just got a cortisone shot in one foot yesterday and if it works I will get one next week in the other but my back, my ankles, my feet and eye's are hurting so much even using special eye drops that I NEED to hear encouragement also as to the life changing affects these TNF blockers offer. Thank you guys. I am new here also.
Pea
I thought I would add that when I get a cortisone shot, sometimes I feel anxious and what has helped me is taking magnesium tablet/supplement, the kind you find at a drugstore. So far this has helped me in that regard. I hope you continue to be pain free, I might try Humira soon if Orencia does not do the trick. I think I am too much pain for it to be working great,however it has helped my numbers come down quite a bit??
Posted By: DLG Re: Scared of possible side effects of Humira - 04/20/11 11:58 PM
I was on either Enbrel or Remicade one from 2006 until 2009. Rheumy checked my CBC's and my white blood cells were elevated. They stopped treatment and sent me to an Oncologist. First time or two they said that they didn't think things were to bad and that they Rheumy could continue treatments. Then the last time things were strange on CBC's the Rheumy sent me back to the Oncologist. This time the Oncologist diagnosed me with Chronic Myeloid Leukemia. That was 12/2009.
DLG,

hugss My heart is heavy for you. Very sad to hear of your diagnosis. I read up on CML just now, and I don't understand all of what I read but I do give you my heartfelt sympathies.

Does your situation put you in the class of patients in whom the CML is caught and therefore treated early on?? That is good news, right? How are you doing now?

In my twisted and painful and frustrating journey with AS I have managed to be allergic to all the tnf blockers current and future (enbrel stopped my heart 4 times, thus stopping me from ever trying any in the future) and now I can't take any NSAIDS due to gut damage. I have had to turn into a nature lovin' nut granola type, (as I used to refer to them, of whom I am now one!!! lol.)

In my natural healing studies I have come across some promising treatments for cancer. Some of, if not all of these things can be done in addition to your current medical treatment and they in fact, have been shown to make medical cancer treatment more successful.

Here is a little light reading for you.

http://www.doctoryourself.com/cancer.html

http://www.doctoryourself.com/gersonmovie.html

http://www.doctoryourself.com/cancernutrition.html

http://www.doctoryourself.com/hoffer_cancer_2.html

http://www.doctoryourself.com/gersonspeech.htm

There are 11 more articles on his website home page. I have linked the first 5 above. I'd link them all for you but my wrists are fused and hands are cramping up!! Oy! crazy If you read all these and get hooked like I did and want to read more, just go to his www.doctoryourself.com home page and down the left hand side you can see all the illnesses and vitamins listed.

You getting CML, and Orch getting MS are the two bad side effects I have heard of from TNF blockers. This disease is so terrible though, and for some people the medicines give them their lives back. It is scary, and promising, and terrifying all at once. My mom couldn't live without her Humira. She has psA.

Hugs and love and support to you all. It is heavy stuff, indeed.

-Donette
DlG,
I hope and pray you get through this hard time with as little pain as possible. I hope the best for you and better health returns to you.Take care,
Posted By: DLG Re: Scared of possible side effects of Humira - 04/21/11 12:43 PM
Thanks for the well-wishes. I am on Tasigna now. They say I will probably be on it the rest of my life. My Oncologist also said that I may eventually have to have a bone marrow transplant. We'll just have to wait and see.
Posted By: sooner Re: Scared of possible side effects of Humira - 04/27/11 09:07 PM
I've been on humira 2 years really no problem until now i'm dealing with bronchitis and I seemed to catch a cold the day after taking the shot now i'm sicker than a dog. but I would hate to not have it like you said my life is almost 100% better on the humira good luck
Hi Kevin,
I am starting my Humira in the next few days (today or Tuedsay??) and I am frightened...and I am a nurse!! For me, at this point in time (which is what is important, right?), it is a better option than living with the pain, sleeplessness and inability to live my life the way I want. After reading these posts I am excited to get started and see if it works for me. What I wanted to share with you is that I am an Emergency Room nurse and as you can imagine, I am faced with every germ that walks through the doors of my workplace. I am going to give it a go, and be super vigilant with handwashing and sanitizer. My boss is agreeable to keeping me off of the triage desk for a while until I see how I handle and react to the Humira.
I should say too, that I am afraid of the long term affects listed by the drug company, but understand that they have to report everything they run across and I personally would be unhappy if they didn't. It doesn't mean I will have to deal with it. This is such a personal decision to make too for each of us, I am sure. So, for me if I can live pain free (or relatively so...) and live life today doing the things I want to, like swim, garden and ride my bike, oh and pick up my grandson, then I feel I can take a risk.
Don't know if this helps you, its my story tho, and I'm stickin' to it!
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