Well, guess I am joing the club!

[sunflower]

I called the doctor's office today to report my non-progress - thinking they would put me on Pred for a while. The nurse FINALLY called back at about 5:30 and said the doctor wants me on Humira. And, did he talk to me about that?? No, he didn't, so I am a bit surprised.

I had been thinking in the back of my mind that we might look at something stronger. We talked about Remicaide and Methotrexate. He didn't want to do either one of those. He said the risks are too high. I never mentioned Humira, and neither did he.

So, I am caught a little off guard. The nurse seemed to think we would have to fight the insurance for it. We never did get the enemas approved. I went on the website and I can't find any restrictions on it. Believe it or not!! They won't approve Rowasa, but it looks like Humira may be okay. I will never understand insurance! LOL!!

Anyway, since I am thinking I may have AS, this will be a good thing for that. What else do I get to look forward to? Are the injections hard to do? How long does it take to start working? Do you start out slow, or do you do them more often at first? Oh, gosh. Has anyone had trouble with sinus infections?? I need to call my allergy doctor about this, too. I am NERVOUS!!!!

 

[sunflower]

I read the main thread and feel a little better. Still nervous, though. Talked to the insurance and the pharmacy I have to use and all should be a go. Called the fax number in to the doctor's office. So, now I wait....

 

[beth]

I think in general terms of Humira as one of the good drugs. Like all drugs you will hear of people having problems with it but there are many many people it helps.

Have you had the pre-screening blood tests? for TB/hep/etc...

It's important to check that you don't have an opportunistic latent infection just waiting in the background.

Otherwise once you are on it just be body aware, keep an eye on infections with a thermometer any time you feel a cold coming on or flu. Keep in touch with your consultant's (dr/md/nurse/whatever) team. Read the leaflet. Ask questions on here!
Hope it works well for you!

 

[sunflower]

No one has said anything about the prescreening bloodwork. Interesting. I have had a TB test recently for a job, so that shouldn't be a problem. Haven't been screened for Hep that I know of, so that may be a good thing. Guess I will be calling the nurse today. Sigh. She really doesn't like my questions much. But, I realized that she didn't call in a prescription for Asacol HD, and I am thinking that I will need to stay on that, so I have to call her anyway.

Thanks for the heads up! And the reply. I felt a bit like I was talking to myself! LOL!!

 

[JulesVerne]

Good luck! I'm going to see my doctor about Humira this week as well. I'm nervous, but I'm hopeful it will help.

 

[tiloah]

They probably won't do the pre-screening stuff until your insurance comes through. No point putting you through it if they turn you down. Insurance usually turns Humira down the first time, but don't let that discourage you. If you fight it you can get it covered.

 

[tiloah]

What else do I get to look forward to? Are the injections hard to do? How long does it take to start working? Do you start out slow, or do you do them more often at first? Oh, gosh. Has anyone had trouble with sinus infections?? I need to call my allergy doctor about this, too. I am NERVOUS!!!!

I didn't find the injections "hard," but I am lucky in that needles don't scare me at all. I prefer the syringe to the pen by a LONG SHOT. The syringe is easier to warm (you can put it between your hands) and you can control how quickly it goes in, so the stinging of the medication is a lot less. Some people report Humira starts working right away, but I think officially it takes a few months to reach therapeutic levels. Keep in mind Humira is intended to keep inflammation away once it's under control, not get rid of inflammation you already have (that's what Pred is for). Usually you will get a "loading dose" to begin with. I think it's four shots the first day, two shots two weeks later, and then one shot every other week from them on. I never had any problem with increased infections, sinus or otherwise.

Hope this helps! Don't feel nervous, Humira can be a wonderful drug. I hope it does the trick for you.

 

[sunflower]

Well, it is on the way! i can't believe it. The pharmacy called this morning. I expected them to tell me it was denied, but it will be delivered tomorrow!

I didn't know it wouldn't help with my inflammation. sigh. Even so, if it can halt this for a few years, that would be great. Right now I am having lots of problems and it seems to have been getting worse the last several years.

 

[tiloah]

I didn't know it wouldn't help with my inflammation. sigh. Even so, if it can halt this for a few years, that would be great. Right now I am having lots of problems and it seems to have been getting worse the last several years.

Well that's not entirely true. Humira is not *intended* to treat acute inflammation (such as a flare). It is intended to prevent flares and keep inflammation from getting worse. It is ideal for inflammation that's already under control (using steroids or what have you), but our situation is rarely ideal! I would say it does "help" with inflammation, in any case.

Some people have their inflammation significantly improved by biologics (including Humira). I just think it's important for people to understand the distinction in the intent of prescribing the drugs, if that makes sense?

Congrats on having it approved right away! I am jealous. I had to fight for months and it just increased my stress levels so much when that was the last thing I needed. I really hope Humira works wonders for you.

 

[sunflower]

Thanks for the congrats!!!

Yea!! I did it. It burned. I whined, but I got all four in there. I tried my tummy. It hurt. I tried my leg, it REALLY hurt. The rest went in my tummy. LOL!!

But, as I said nothing is really easy for me.

Yesterday, I sat and waited in anticipation for the box to arrive from UPS. We are having a heat wave and I was really anxious, because of the heat (it was 110 yesterday, and I live in Kansas - not Arizona!), because of the medicine, because when I am having a flare I get anxious about stuff!

I waited.

I waited.

At four thirty I called the pharmacy. I asked them for the delivery confirmation number so I could find out where the delivery was and try to figure out what to do. I was pretty upset. The UPS guy and I used to be on a first name basis, so I KNEW he hadn't lost my box. Now, if there was a sub, they could have lost it. I was losing.

The nice guy Colby calmly told me it was at the pharmacy in town.
WHAT!!!!!!!!!!!
I was like what the **** do you mean at the pharmacy. I have been waiting ALL DAY for the delivery, and the rep told me yesterday it would be coming. (okay, reality check. I am off work so I didn't have anywhere urgent to go, but it is the idea that I needed to wait and I worried about missing him because I can't always hear the door. I left the screen door wide open and a big note on the door to knock loud. But, you know, I was annoyed).

He explained that AFTER they talked to me yesterday they found out that my regular pharmacy had filled the script. i was pretty upset because I didn't even know the doctor office had called them. I had called my insurance office and they said that I needed to use this specialty pharmacy. So I gave the fax number to the nurse. Apparantly she sent the script to them, and called it in to my pharmacy - both.

So anyway, I was mad enough since I waited around all day worrying, and I could have gone to the pharmacy the day before and picked up my script! I told him that it was rude to leave me hanging and not let me know that I was not getting a delivery. Then he told me that the rep knew. I was balistic! I told him in no uncertain terms that she did not tell me that they had filled the script.

Then he told me that she had gotten a message from whoever in the office that does that, later in the morning on Monday, and that she was supposed to have called me. I lost it. Poor guy. Then he transferred me to a supervisor. I lost it with her, too. Then I started thinking about how rude everyone had been to me - even down to when I called just to get the information on how to submit a script. I told her I didn't want to deal with them anymore. She looked it up and I don't have to deal with a specialty pharmacy, so I fired them.

What a day.

But, I took my meds, no reaction! It just really stung. Not right at first (except when I did it in my leg), but about 2 minutes later and it hurt for quite a while. Then I woosed out and took a pain reliever and that helped. I was such a baby. Oh well. The one I put in my leg left a knot yesterday, so I must have flinched pretty hard and pulled the needle back a bit. It is gone today, so no permanent damage.

I am IN!! I joined the club!! Now let's just hope it works!

 

[sunflower]

Yesterday is the first day without a fever, though I did run BELOW normal all day. And, I don't remember having night sweats last night!! Yay!! This may be some progress.

Course, I still can't go to the bathroom.

 

[sunflower]

Today is not so good. BAD pain. It feels like when I had the bowel obstruction before. It was really bad this morning and has finally backed off. I know I am backed up, so taking some laxatives to see what will happen. If it gets worse, I gess it is off to the ER. I haven't had to do that for a while!

 

[tiloah]

Today is not so good. BAD pain. It feels like when I had the bowel obstruction before. It was really bad this morning and has finally backed off. I know I am backed up, so taking some laxatives to see what will happen. If it gets worse, I gess it is off to the ER. I haven't had to do that for a while!

Oh no! I hope it doesn't come to that. Are you on any concurrent treatment, like Pred or Entocort? Humira probably hasn't had time to kick in just yet. Hope you feel better.

 

[sunflower]

This am is MUCH better!! Pain still comes in waves but is manageable. The laxative seemed to take the pressure off. Not much came out, but enough. The xray I had done the day before showed gas and stool in the area of the rectum, but nothing to show blockage. Of course, that is what it showed before. I wonder if the pressure is making it hurt like that?? I don't care what the xray said, I am still not going right.

 

[tiloah]

I have been so lucky (?) that constipation has never been one of my symptoms. Maybe you need some more thorough imaging than an x-ray? Hope they get you sorted out soon.

 

[sunflower]

Yes, I wonder about that. My xrays have never shown how bad my constipation is. It think it is weird that I have stool in my rectum, but I can't get it out. Wouldn't that show something is wrong?? Ugh. I hate this disease. If it isn't one thing, it is another.