AS/Uveitis/Humira

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littleladymc
New Member


Date Joined Aug 2008
Total Posts : 5
   Posted 8/23/2008 2:28 AM (GMT -7)   
Hello Forum Friends!
 
I am new to all of this and I do hope I am in the right place - :)
 
I will explain my situation (in as few words as possible).
 
I have chronic Uveitis. I have gotten it every year (to the day) for the past 4 years. My eye doc recently sent me to a Rheumy. He suggested a bunch of tests and it turns out I have the HLA-B27 gene marker and the possiblilty of AS (hence the re-current Uveitis). He is suggesting I go on Humira. At first I agreed (as I had no knowledge of the drug), but now that I have done some digging I am fearful of the side effects. If anyone else is on this drug and would like to share their experiences (good or bad) I would love to hear (or would that be read?) them!! Also does anyone know what would happen if I started it and went off of it? Are there any adverse effects? I think I am hoping to find someone else out there that is in the same or close to the same situation as I am.
 
Thank you for letting me ramble.
 
Stay Healthy!
Angela

Alicat
Regular Member


Date Joined Aug 2008
Total Posts : 226
   Posted 8/23/2008 10:02 AM (GMT -7)   

Hi Angela,

 

I started on Humira last week.   Had two Enbrel shots first but had a reaction so the reumatologist switched me to Humira.  I too am very concerned about the side effects but I have very bad joint damage in my hands from psoriatic arthritis.   Have it in my feet and knees also.    I also have had eye problems for the past several years.   I get Iritis in both eyes.   For the past few years I've had it twice a year also.  

Have also been diagnosed with blockages in the arteries of my legs (P.A.D.)

 

I was always healthy and active and all of this is really getting me down.

I had drugs but am at the point where I have to try something.   I'll let you know how I make out with Humira.   Keep in touch and I wish you the best .

 

Donna (Alicat)


littleladymc
New Member


Date Joined Aug 2008
Total Posts : 5
   Posted 8/23/2008 11:14 AM (GMT -7)   
Alicat (AKA Donna)

I thank you for sharing your story with me. I am sorry you are having to deal with so much. I do hope that Humira will work for you. One good thing I can say is at least we have options. I know how you feel about "all of this" getting you down. I feel the same way! Hang in there and let me know how the Humira works out for you.

Angela

SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 8/23/2008 5:23 PM (GMT -7)   
Hi Angela,
I too suffer with uveitis, I also have AS and Crohn's Disease. I was wondering if you Dr. had given you Acular eye drops for your uveitis, I just thought that a biologic was an extreme option to be offered (like yourself I worry about the side effects).
Jo

Irish_Mom
Regular Member


Date Joined Apr 2007
Total Posts : 385
   Posted 8/23/2008 10:45 PM (GMT -7)   

Hi Angela,

I don't post a lot; mostly read. First and foremost, welcome to the forum. Have they done an MRI to confirm the AS diagnosis? Personally, I wouldn't accept a positive HLA B27 as a confirmation. The reason I say this is that some people can be HLA B27 positive and have nothing wrong with them and others will have problems, i.e., Crohn's, UC, AS, etc.

Both my husband and our oldest son are positive. My husband has AS and psoriatic arthritis, but by the time it was diagnosed (1983) he was already fused. Then again, back then they didn't have all the wonderful drugs they now have. The doctor's had both of our boys tested when they were five. The youngest was negative but our oldest was positive. It was just something to 'keep on the back burner'.

When the oldest was 15, he was diagnosed with Crohn's, which was recently changed to UC after the Prometheus blood test. He started having symptoms of AS when he was 17, but they weren't like hubby's symptoms. His would come and go, whereas hubbys would stay for a while. He recently had an 'attack' that just wouldn't go away, so they ordered the MRI. He had bilateral sacroiliitis and was starting to fuse. He was then sent to a rheumatologist who started him on Humira. He felt 100% better just after the first injection and hasn't had any problems at all with it.


Terri
 
_________________________________________________________________________________
Breast Cancer at 37; bilateral mastectomy with reconstruction.
Colon resection 2004; Sub-Total colectomy September 2007 for colonic inertia - didn't work.
Son with UC; taking Asacol and 6MP with Prednisone and Rowasa added during flareups. Recently diagnosed with ankylosing spondylitis - now on Humira. Canasa now added due to UP.
Husband with ankylosing spondylitis and psoriatic arthritis.


littleladymc
New Member


Date Joined Aug 2008
Total Posts : 5
   Posted 8/25/2008 3:00 AM (GMT -7)   
Jo,
They have been trying all kinds of things since I began to get Uveitis and nothing has seemed to work. I have tried several types of drops (they don't work), and NSAIDS (that made me sick). The next step is a form of chemo-therapy, but personally that sounds worse than the Humira - so up the step ladder I go to Humira. I just found out my step mother is on a similar drug and I was able to get a ton of "inside" information from her. I actually feel a lot better about making the choice to take it.
Thanks for your message!
Angela

littleladymc
New Member


Date Joined Aug 2008
Total Posts : 5
   Posted 8/25/2008 3:06 AM (GMT -7)   
Terri,
Thank you for sharing your story. They did do an MRI, but did not see anything. Doc says the signs don't always show up. I think he might be trying to "catch" it before it is able to show up. I am happy to read your husband is doing well on the Humira drug. I called the pharmacy here on post (I am currenlty living in Germany as my husband is serving in Iraq) and they are out of the shot, but hope to get it in soon. I will let everyone know how it goes. Thank you for your message. Good luck to you and yours.
Angela

Irish_Mom
Regular Member


Date Joined Apr 2007
Total Posts : 385
   Posted 8/25/2008 5:18 PM (GMT -7)   
Hi Angela,
 
Your hubby must be in the Army I take it? My BIL was stationed in Nuremberg (sp?) for quite a few years. My husband isn't the one on Hurima; our 21-year-old son is. Hubby was diagnosed in the early '80s and they didn't really have anything that helped, so he's already fused all the way. Good luck and let us know how it goes.
Terri
 
_________________________________________________________________________________
Breast Cancer at 37; bilateral mastectomy with reconstruction.
Colon resection 2004; Sub-Total colectomy September 2007 for colonic inertia - didn't work.
Son with UC; taking Asacol and 6MP with Prednisone and Rowasa added during flareups. Recently diagnosed with ankylosing spondylitis - now on Humira. Canasa now added due to UP.
Husband with ankylosing spondylitis and psoriatic arthritis.


littleladymc
New Member


Date Joined Aug 2008
Total Posts : 5
   Posted 8/25/2008 11:08 PM (GMT -7)   
Terri,
I apologize for my error - it is hard to see with one eye sometimes! LOL! In that case I am happy to read Humira is working well for your son :) Yes, my husband is in the ARMY we are currently stationed in Ansbach which is about 30 minutes away from Nurnberg (or Nuremberg you can spell it either way). He should be home from Iraq in a few weeks - YAHOO for that. I still have some more questions that I need answered, but the Humira nurses line is ALWAYS busy - I have been on hold with them for over 20 minutes and still no answer. I had to eventually hang up, but I will keep trying.

Or does anyone know if I can be around my toddler when she gets her vaccines? How long does the Humira stay in your system? We are planning on having another kiddo, but I don't want to take Humira while pregnant. I figure I will stop taking it 2-4 weeks before we start "trying" again.

Okay enough rambling I have to feed my little one some breakfast. I hope you have a great week.

Thank you for the response.

Angela

Alicat
Regular Member


Date Joined Aug 2008
Total Posts : 226
   Posted 8/26/2008 3:53 AM (GMT -7)   
I'd be interest also in knowing how long the Humira stays in your system.  I am due for my second injection next week.   I also have another question if anyone knows.   I have gum disease ( have had periondontal surgery twice).   Now I have to go every three months for cleanings.   The hygienist at my regular dentist office really scrapes and I usually bleed a lot.  Should I be on antibiotics before I have this done?    When I go to the periodontist (every other cleaning, she is much more gentle but insurance doesn't allow me to go there except for every other cleaning.
 
Reading everyone else's problems makes me feel lucky that I'm in my own shoes, but scared of what might be coming.  I wouldn't wish this disease on my worst enemy. 
 
On a good note, I had a really good day yesterday.  My legs felt better than they have for weeks and am hoping the Humira is kicking in.  Woke up this morning with a lot of pain in my hands again but the weather here has been so humid with rain last night that I figure maybe that's why.   Have given up trying to figure it all out but love it when I get those rare moments when I feel almost normal.
 
Will keep you all in my prayers and wishing a good day for all!
 
Donna :-)
psoriatic arthritis, peripheal artery disease


Irish_Mom
Regular Member


Date Joined Apr 2007
Total Posts : 385
   Posted 8/26/2008 8:07 PM (GMT -7)   
Angela
No need to apologize. My husband wishes they would have had something like Humira when he was having his problems. Between the AS and the psoriatic arthritis, his joints are pretty messed up. In fact, it looks like he may have to have neck surgery; we'll find out on Thursday.
 
Congrats on hubby coming home. I bet you're so excited. My dad was in the Navy for 33 years, so I know first hand how difficult it can be at times. I think it's great that the families are able to receive phone calls, email, etc. Back in the 'old days' we didn't get anything for their entire tour. Letters would take weeks.
 
I checked the website I mentioned and didn't see anything about not being around people that get 'live' immunizations. You yourself shouldn't get 'live' immunizations, but I'm sure you're already aware of that. I did find a number specifically for women that are pregnant and taking Humira (1-877-311-8972), and although that won't be your case, maybe it's easier to get through on that number. It also said that the half-life (time it stays in your system) is approximately two weeks.
 
Alicat
Good question! When my son first started it, that was one of my questions. Our dentist there is no need. The ADA has changed a lot of the prophyactic antibiotic protocol. I have mitral valve prolapse and I used to have to take them before cleanings but not anymore. Same thing goes for having hardware in your body. You used to have to pre-med for that but not anymore.
 
 
 
Terri
 
_________________________________________________________________________________
Breast Cancer at 37; bilateral mastectomy with reconstruction.
Colon resection 2004; Sub-Total colectomy September 2007 for colonic inertia - didn't work.
Son with UC; taking Asacol and 6MP with Prednisone and Rowasa added during flareups. Recently diagnosed with ankylosing spondylitis - now on Humira. Canasa now added due to UP.
Husband with ankylosing spondylitis and psoriatic arthritis.


Alicat
Regular Member


Date Joined Aug 2008
Total Posts : 226
   Posted 8/27/2008 2:27 AM (GMT -7)   
Thanks Terri - Have a good day!

Donna
psoriatic arthritis, peripheal artery disease


cakesinsations
New Member


Date Joined Nov 2008
Total Posts : 1
   Posted 11/20/2008 8:30 PM (GMT -7)   
Hello,  I am on Humira and I have Ankylosing Spondylitis. I am a 46 year old woman. HLA-B27 positive. Have had some problems with  using Humira. It was hard to get off the drug, I went into withdrawl upon quiting the drug. No one knows anything about the drug to help you when you have a problem.  It took me 2 weeks to get through withdrawl. I also had a problem with a cut on my face which was not healed when I started the medicine. Big mistake! It wouldnt heal. It turned into a big purple lesion on my face. The doctors wouldnt treat me because they had never seen anything like it. I stopped the drug and it slowly healed up. I am now back on the Humira even tho 1 year ago I said I would die first. My quality of life was not so good. So I am back on the drug.I do feel better and I am able to walk better.I have the disease in my hips really BAD! It would be nice to talk to someone with the same problems I have. Someone who understands. The drug is a dangerous one, But also a good one. darned if you do and Dammed if you dont. ....

Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 11/20/2008 8:39 PM (GMT -7)   
Welcome to Healing Well, cakeinstations! I'm sorry that you have had such a hard road with the Humira and your facial lesion. That sounds horrible to deal with. I have AS and was on humira. I had to stop taking it due to a severe reaction. I found that if I over-do anything I suffer the consequences. My AS flares very easily. I get a lot of cortisone injections in my joints to calm the inflammation. For the last two years I have had to have injections into my SI joints. When they inflame I am unable to walk without using a walker. You might find you get more responses to questions if you start a new topic when you want to pose a question. There are several people here that have AS. Hopefully they will respond too.
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, and a host of other medical problems.
 


golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 11/24/2008 6:32 PM (GMT -7)   

Hi everyone,

I've only been on Humira for 6 months. I have to agree it is a powerful drug, really made a difference to me after about 2 months, I suddenly realised I was waking up without stiffness and could bend and even run. But at 3 months caught the flu which turned into pneumonia, I was really sick in hospital for 6 days, taken off the Humira while I fought the infection and my arthritis really flared, after 1 week my knees were like balloons and elbows, wrists ankles all swollen. Once I was back on the humira it all settled down again within a couple of weeks but it does make me think that whatever Humira does must be very hard for the body to replicate. My arthritis had never flared that badly before when taken off mtx or arava or sulphasolasine for previous infections/ low white blood cells/ liver function reasons. It seems once we are on it we're on it for good!!! Did anyone else have similar experiences?

On Humira I don't appear to have any side effects, blood work all good etc, but there are no really long term studies done yet, so it does make me worry what its doing to me. Glad to say my ribs seem to be finally healing (from all the coughing got arthritis in my ribcage-cortisone to the rescue, I'm winding mysef back off the doses now) I also have a non specific form of arthritis, test negative to most things, but diagnosed from my symptoms...swelling both sides of the body etc.

Jacqui


Clayton D.
New Member


Date Joined Jan 2009
Total Posts : 1
   Posted 1/25/2009 7:44 PM (GMT -7)   
Hello,
This is a response to earlier posts about HLA-B27, Ankylosing Spondylitis, Uveitis, and Humira. I think Angela asked the first question last August. I have AS, was diagnosed in 1991 but started having attacks in the late 1970's. Uveitis started a few years ago and I had three severe flares last year. My rheumatologist switched me to Humira three months ago, in part because my son, who also has AS, was having good luck with Enbril. Anyway, I have had no more uveitis since I started taking the Humira. I was on Indocin for 17 years with many cortizone shots as flares came and went. So far so good. I have had no adverse reaction and feel far better than I have since I was a young guy. I am now 47 and fused in the lower and middle spine, without any lung expansion. But as I said I am far better off, so far, since I started the drug.

I hope Humira works as well for you.
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