Strong aches and pains with Humira

[Wajiha]

Hi all,

I have been on Humira since Feb 2013. I went off it for 1 month in June 2013 and then back on it since then. This is my thread about June:

http://www.crohnsforum.com/showthread.php?t=52432

In the last 2 weeks I have been having awful pains in my arms and legs. Deep pains with my ankles sometimes swelling up at times. I have been in to ER to check for bloodclot - nothing. I have seen the GI. Had all the RA bloodtests. And nothing.

Crohn's symptoms under control with entocort and humira at present. But the aches and pains are ridiculous. Worse at the end of the day and waking up with pains in arms and legs. Unable to sleep without pain killers at the moment (no NSAIDS . Some swollen lymph nodes - but this is common for me in summer.

I have also been under extreme stress with work in the last 6 weeks - so it could be that also.

GI has suggested maybe coming off humira to see if it is the cause of it all.

Just wanted to hear anyone else's thoughts out there and if you had any similar experiences. Thanks for your time.

 

[PsychoJane]

You say you had the bloodtest for RA, have you seen a rheumatologist in the process?
It could be a side effect of humira, I had some similar issues back when I was on it. There are blood test that help determining if it is related to it, I'm assuming the GI could get them done but mine were looked at by the rheumatologist to see for drug induced lupus.

 

[Wajiha]

Thanks Jane. Seeing Rhemy on Thursday.

Silly question, but what did the drug induced lupus feel like? And what did you do about it?

 

[n00b]

I am not sure if this is the same thing but when I was on Imuran I got the worst pain in my ankles and knees.

I know its a completely different drug but our bodies to react differently. As soon as I stopped the imuran the pain went.

I owudl stop the Humira to see what happens

 

[PsychoJane]

It felt like a wide variety of symptoms. It's not clear either it was or was not DIL but everything resolved once I stopped humira and my blood count was showing anomalies in my ANA titer and other parameter like this.

Mostly, I was having migratory joint pain. One day in my hand, the next in my knee. They would get swollen very quickly and hurt to the point I had issue walking at some point, then issue opening a door the next. It would generally be worst at night and I would have trouble sleeping as I could not move or moving was waking me up. These issues were far worse if I had been in the sun during the day. The joint that would ache the most would be the one exposed to the sun (I can tell because I would be on a boat with sun on one side and that one side would be hurting like crazy the day after and various other event like this one). I also had skin issues, inverted psoriasis that would show up on various location of my body. I was tired all the time with frequent headache too.

 

[mish2575]

I was wondering, reading your post, if it might be Lupus. Please keep us updated.

I have been sorer lately in my joints but i'm also getting older (39) so its hard to know what is normal wear and tear for the body.

 

[Wajiha]

Thank you @psychojane. Feels very similar and appreciate the candour.

Thank you also @mish2575. I hope it's not, but sure feels like it.

I will indeed update after seeing the rhemy tomorrow.

 

[PsychoJane]

Good luck. If ever it is DIL, it's rather unfortunate to feel like we are "losing" a treatment but believe me, if it is, you might appreciate not being on it there after. I was glad to see these symptoms slowly disappear after I stopped. I was beginning to be quite worried when they were showing up.

 

[Jeanine A]

I have just stopped taking Humira due to severe pain in my arms and legs that was worse in the morning and evening. I took Humira every other week and my pain lowered the closer I got to my injection date. My GI doc had me get some blood work done and it was sent off to a special lab in San Diego that is suppose to determine if the pain was related to the Humira or not. I have not heard the results of that test yet. My pain level is improving every day and I do not have plans to go back on the Humira.

I an newly diagnosed with Crohn's as of June 2013. I was on Prednisone and Humira but as soon as I went off the Prednisone the pain in my extremities started.

 

[Wajiha]

Thanks @Jeanine I really appreciate you stopping by and sharing. I had lunch with a business associate today who swears by Humira for Psorisis (sp?) which turned into Psoratic arthritis (again sp?). We have been sharing information on it for months and his entire life has changed for the better.

 

[Wajiha]

And sorry @N00b I forgot to thank you also. Unfortunately under our PBS system in Oz, if I just go off it without Dr's recommendation to do so, I will be ineligible to go back on PBS later on (if I needed to). Its a real double edge sword.

 

[n00b]

No problem:thumleft:

I am starting Humira next week so it will be interesting to see if I get the same horrfic joint pain as I did with the Imuran.

I really hope not as that was cripplying, I once got out of bed in the morning still half asleep and just fell in to a heap on the bedroom floor as the pain in my knees/legs was soo bad.

 

[Wajiha]

Thanks all for your support earlier this month. After the RA visit he found there was nothing wrong, except low vitamin D levels. Has put me on 1 x 50000 iu tab per month. I know outside Oz you guys can get the 100000 iu shot, but we are not permitted by our FDA equivalent. Hopefully the vit D will help the inflammation. Waited 3 weeks instead of the 2 between the Humira shots and all the symptoms went away. Took the shot and some symptoms came back this week along with a UTI.

 

[mish2575]

How's it going? Vitamin D helping?