AS/Uveitis/Humira

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 (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

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,
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

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

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.

 

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. ....

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