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Humira Side Effect???

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Crohn's Disease
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Posted 3/10/2011 5:41 PM (GMT 0)

Hi everyone - I used to get on here daily - but it's been years.

Here is my background:

30 yr old female, diagnosed with Crohn's at 23 - 2 bowel resections, 1 5 day hospital stay with a blockage.

Medications: Humira shot 2x a month, B12 shot 1x a month, Nexium daily, viacodin as needed

Here is my question:

I have been on Humira for about 1yr and a half.  I have been getting muscle/joint pains for the last six months.  It started out as occasional pain....to random pain everywhere all the time.  Literally there are some days the hairs on the top of my head hurt.  I talked to my GI doctor about it (he's out of the cleveland clinic) and he said it is not the Humira.  He believed it to be depo shots I was on.  So I went off of those months ago and everything is just getting worse!!

My friend told me that the pharmacist where she works said this is a side effect of Humira and happens to 7% of all patients.  I told the Dr. he said it is not a side effect. He thinks it may be a hormone level issue.

I am so conflicted and all I do know is there are days I barely can get out of bed!! It depresses me - I have two small children and work full time.

Has anyone heard of this being a side effect of Humira? and if it is the Humira - does anyone know how long it takes to go back to normal after going off the Humira

Posted 3/10/2011 6:01 PM (GMT 0)
Are your symptoms listed as a possible side effect on humira.com?
Posted 3/10/2011 6:09 PM (GMT 0)
It's not really listed as a main side effect.  But that site is hard for me to navigate.  Maybe I am just an idiot but that site is not helpful to me.  I did do research overall though - and some sites list it as a side effect - others do not.
Posted 3/10/2011 6:27 PM (GMT 0)
In my Humira injections is the information sheet and it has a very expansive list of side effects, actually it covers near enough one side of A4 paper. One of the side effects listed is joint and muscle pain so your GI is completely wrong in saying it is not a known side effect seeing as Humira themselves have listed it as a side effect on their own literature.
Posted 3/10/2011 6:38 PM (GMT 0)
I find it sad that GI's can't look up the side effects and see that it's listed.

Either way, is your GI looking into a solution for the pain? You shouldn't have to deal with it. I hope things get better for you soon.

(((hugs))) to you, and I'm sending healing thoughts your way.
Posted 3/10/2011 6:43 PM (GMT 0)
He told me I need to see a regular doctor for the pain because he thinks it a hormone level issue.  He also stated that if I do go off of Humira he will not be my GI doctor anymore because he does not support the decision. 

He said that Humira can cause joint pain - but mine is not consisted with the side effects that Humira causes - because I have muscle pain too and it's random.  He said that Humira has the side effect of only causing joint pain all over at the same time.

Posted 3/10/2011 6:45 PM (GMT 0)
I have been debating on seeing a "regular doctor" about this pain - but honestly I am dreading it. Everytime I have ever had a regular doctor they never know anything about the medications I am on for crohn's and seem uncomfortable treating me. I have only seen my GI doctor for the past 5 years.
Posted 3/10/2011 6:51 PM (GMT 0)
It would be worth seeing a new doctor if they can help you feel better, though, wouldn't it? If this is something that's making you depressed, you definitely should address it. If your GI won't address and help you deal with it, you need to get a doctor who will.

I had to go to a new PCP last week and had to explain that I don't take nsaids. (I had a fever that wouldn't break, and ended up taking advil for a couple days anyway after discussing it with the doctor) I've found that if you explain a little for them, like why you don't take certain meds, they are understanding and helpful.
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