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Posted 12/28/2012 2:28 PM (GMT 0)
Hi all!

Hope the holidays were great for everyone.  I haven't posted in awhile.  Currently I am 98 % in remission, on 5mg Prednisone, Colazol 9 pills a day, Canasa 7 Prilosec. 

When my GI began the reduction in Prednisone, I asked him to go very slowly since it causes me extreme joint pain to reduce the dosage.  His jaw hi tthe floor and he sent me to a rhuematologist who has added chronic systemic inflammation, due to rheumatoid arthritis, UC & my psoriasis.  He wants me to start Humira, which is currently pending insurance approval.

Has anyone else used this? If so, what were the side effects and did it help your UC?

Thanks!

Posted 12/28/2012 3:04 PM (GMT 0)
Hi,

I just started two weeks and three days ago, I have not seen improvements yet in my UC however I am told it could take up to a three months. When I was on pred for three months, I'm sure I had withdrawls when I stopped but it went away, you have to tough it out. I don't know If I would throw in Humira if you 98% in remission.  See how you do if you off pred all together. I know you get a lot of pain. Detox the body with milk thistle maybe? 

Posted 12/28/2012 3:08 PM (GMT 0)
I had horrible joint pain when I tapered after my 4 month course of pred as well, but it did go away on its own in the end. The rheum I saw wanted to put me on Simponi for the joint pains, but I resisted as by the time I had my appointment the pains were already starting to reduce a bit on their own. Anyway, if it were me I would do a SUPER slow taper rather than add Humira, especially since it's looking like you're going to be able to achieve remission with 5ASAs only.
Posted 12/28/2012 4:01 PM (GMT 0)
if you have a diagnosis of RA and psoriasis in addition to UC, you have multiple autoimmune issues. I am not sure your case is joint pain due to taper like some here report. Did they have 3 autoimmune diseases?

it is possible that the pain is just from the RA, and the Pred had been masking it. You need to discuss carefully with your rhuematologist which is your situation.

A slow Pred taper taper is always smart, but at 5mg, you are already lower than the amount you body makes.

Folks here are responding based mostly on UC being 98% controlled. UC is their experience. UC is only part of your experience.

This drug was approved for RA and psoriasis before it was approved for UC. It is a serious drug. There are some potential side effects, and high $$. But it sounds like it was made for you.

You may want a 2nd opinion in case your rhumetologist is a little too quick on the draw, but I would not base decision just on whether UC is 98% controlled. Consider all your autoimmune diagnoses.

Good luck
Posted 12/28/2012 4:15 PM (GMT 0)
Thanks so much for the replies!!

Perhaps I should have also written that I'm not asking if I should accept the treatment, but rather what to expect from it. In my case - I've had pain since I was 16 and numerous psoriasis issues since age 25 - I am now 39. The only time I have been free of all these issues is on the Prednisone at 40 - 15mg a day. BUT - as we all know, that drug is the devil & I am excited with the prospect of ending it.

My GI says that on the humira, I could most likely also get rid of the Colazol (nine pills a day). The current drugs have me feeling very nauseous and fatigued. I still have blood and mucus in my stool, these symptoms have increased over the past week.

As for toughing out the prednisone withdrawl - I've done it a few times this year. Biggest problem - my system has become Prednisone dependent & nothing has yet been able to give me a succesful wean from it.

I have a life-long history of overactive immune system issues that began when I was 4. (in hindsight) With a 3 year old at home - I would love to be pain free again, and not have to visit the toilet 20 plus times a day. LOL...
Posted 12/28/2012 4:22 PM (GMT 0)
DBwithUC - thanks and I agree, perhaps I should post elsewhere - but this is the only forum I'm somewhat familiar with here. :)

Honestly, this treatment sounds too good to be true. I never knew that most people are not in pain. For 23 years I have been in pain, some days my chostochonditis is so bad that I cannot even breathe deeply. The GI sent me due to my history in full picture & his feeling that the Prednisone was treating something more than the UC, but we needed to know what. I have been his toughest case - "problem child" he calls me. This could be our missing link.

My previous PCP had me on Diflucan for 10 years & never sent me to a rheumatologist. It is possible that being on that med caused my UC & when I began seeing the GI, they immediately took me off of it.
Posted 12/28/2012 4:25 PM (GMT 0)
Hi Music - I don't have RA but I had horrible inflammatory arthritis related to IBD. The PA noted that the inflammatory mechanisms were similar to RA. I would have severe rotating joint pain (IBD arthritis rotates), randomly swelling fingers, and if I would walk too far in a day my feet would swell and/or be so painful that I couldn't walk in the evenings. Two weeks ago I was having trouble even straightening up after getting out a chair.

I started Humira recently. I think it took three doses (the two starter doses then one regular dose). A week after my third dose it seemed that one day I was having trouble and the next day it was like a flip was switched. My severe arthritis symptoms were gone! I did have some slight improvement after my first dose - namely my finger swelling decrease.
Posted 12/28/2012 4:49 PM (GMT 0)
I have been on Humira for 2+ months now. I tapered off prednisone and started Humira at about the same time so there was some overlap. It can take up to six weeks for Humira to start working. I am so glad to be off the prednisone, I'll tell you that much. The Humira does seem to control my symptoms, but I am one of the 10% who experiences chronic headaches as a side effect, so I am looking to stop or switch. Other than that I haven't had any side effects. The injections aren't fun - for me they are painful, but I make my BF do them and it's tolerable that way. :)
Posted 12/28/2012 5:55 PM (GMT 0)
Humira can have some serious and life threatening side effects. If you truly are 98% in remission I would steer clear of such a dangerous drug.
Posted 12/28/2012 6:05 PM (GMT 0)
I've been on Humira since June . It's been working pretty good. I now take it weekly. Every two weeks was not enough. I don't have any more bleeding and not a lot of urgency. Sometimes I feel like I'm in remission other times not as much. In all I feel a whole lot better. I do get a headache occasionally , doesn't last for long.
The injections are a piece of cake. Everyone is different !

Thought I had arthritis, found out through a MRI that I don't . Have a few bulging discs and degenerative discs L4-S1. It does not help with that. Was hoping!

Hope Humira helps you! Good luck.
Posted 12/28/2012 6:16 PM (GMT 0)
Sorry music, I missed that you had an actual diagnosis of RA. I withdraw my comments...
Posted 12/28/2012 7:09 PM (GMT 0)
Pluot - no problem!!

garylouisville - which side effects are you referring to? I asked about cancer & was told that it is a risk for younger people, especially males or those using the Humira along with Imuran. Do you have current information that I may be able to read when my 3 year old goes to sleep tonight? Thanks!
Posted 12/28/2012 7:10 PM (GMT 0)
Hi Musicmaker,

One more thing....have you ever been tested for Lyme's disease? On this forum under diseases and conditions there's a lyme's group, maybe read some post there and see if it sounds similar to yours. With lyme's comes a lot of pain. I started out with neck pain and pain in my heels and terrible knee pain. I did two years of antibiotics and feel good except of course my UC problems.

I started out with rashes on my left butt check in my 20's and 30's coming in a going and wouldn't you know at 35 dx with UC LEFTSIDED something back in my 20's with that rash was trying to tell me to get it checked out.

I hope you feel better soon. Try the milk thistle, you maybe just backed up with a bunch of medication? Also peppermint tea will help sooth the gut aches.

Posted 12/28/2012 7:37 PM (GMT 0)
Hi Music - the side effect you mentioned (cancer more typical in males) is the one I'm more aware of. I think there's also some risk of heart damage. And in rare rare cases mylenation of the nerves or something similar.

However, my grandmother had RA and I know that there are some potential bad full body effects from this disease. Some of which are as bad as the side-effects from the Humira. For what it's worth, if I were in your position I would be on the Humira for RA as well.
Posted 12/28/2012 8:02 PM (GMT 0)
Music: I don't believe the cancer thing regarding Humira is only for young people or people also on Imuran at the same time. I sure as hell wouldn't take both at the same time though! I think your doctor kind of made those things up. I really don't have the time to look stuff up for you but it is easy enough to google "Humira side effects". I've seen the commercials, read what people have written here, and personally know someone who was taking Humira for RA and wound up developing a life threatening infection that required surgery. In another thread regarding slippery elm you can see that Indycat developed pneumonia while on Humira.
Posted 12/28/2012 8:20 PM (GMT 0)
The line is that Anti-TNF's increase the cancer risk for young/teenage men (especially those on azathioprine) moreso than any other group. That doesn't mean the cancer risk is gone for other groups, just that the deadly bone cancer was confined to around 16 young men and only 1 other person.

The cancer risk in general increased from .03% (normal population) to .06% (anti-tnf population). These stats might be for Remicade though. So there is a slightly increased risk. In addition, researchers are starting to think that maybe there isn't actually an increased cancer risk in the general population.

The infection risk is true. That's a risk you take with Anti-TNF's. You have to be vigilant about any sign of illness/infection. On the other hand, my grandmother's RA got so bad that her bones twisted and ruptured through her skin and got infected. Her heart was weakened (from RA), which lead to strokes. Granted, her's was an extreme case but so was the infection story you mentioned. Unfortunately once you have medical issues there's risks you run with just having the disease and/or with treating the disease.
Posted 12/28/2012 10:24 PM (GMT 0)
Thanks again for all the input & yes, I am trying to weigh the current life quality vs. the long term effects of my diseases vs. the risk with Humira ......

Here is a quick link to an article on Bloomberg http://www.bloomberg.com/news/2011-04-14/remicade-humira-tied-to-risk-of-cancer-in-teens-fda-affirms.html

I used to be Bextra for my pain and was very upset about that being ended, if I'd have had the choice, I would have continued that med for my issues. One thing the Humira is that would end the damage being done to my joints and bones by the RA. I am work at home Mom who creates custom baby clothing and teethers to sell on my Etsy store & craft shows. I am a webmaster & have a few blogs that I have income from. I am almost finished with my degree in computer science and information technology. All this with the intent to stay home and earn money while homeschooling my daughter. If RA has it's way, my hands will become a knotted mess - already I cannot type a blog entry in one sitting due to sore wrists & back. Then what can I do? At least with the UC - there's surgery. What is one to do? UGH.
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