Starting Humira: I have a question...

[autumn_rose]

Hi, everyone. So, I recently changed GI doctors because I've been having strange leg and buttock pain for over a year now, which I thought was related to my Crohn's, but my previous doctor told me it wasn't and wouldn't do any tests or change my treatment. My new doctor did a lot of poking around and discovered I'm not in remission and haven't been in remission for at least a year, if not longer. The leg pain is caused by so much swelling and inflammation near the end of my colon. So I'm going to be starting Humira.

I guess what I really want to know is, for the people that are on this medication, are you able to live a normal life? I know that one of the big risks is contracting an illness because of the weakened immune system. How does that risk affect your life? What do you do differently now than before being on such a potent immune system suppressant? Any insight that anyone can share with me is really appreciated. I have to admit, while I'm ready to start feeling relief from my Crohn's, I am pretty nervous about starting this new medication.

 

[jlanier]

Maybe I live my life on the edge, but I haven't really done a whole lot differently than I was doing before I was on it. I do find myself making it a point to wash my hands a lot more often. Other than that, I haven't changed much. I think I am more aware of the things that can potentially happen as a result of having a suppressed immune system.

 

[CyCrohn'sGuy]

I agree with jlanier. I am more conscious of mine and other people's hygiene habits. I also run in the opposite direction whenever anyone near me has a cold or even a sniffle but apart from that I try to carry on as normal as possible.

Good luck with Humira. I hope it works for you and brings you relief.

Costas

 

[Mark63]

Hi,

Good luck with the treatment.

It's pretty much been said above, wash your hands regularly, use alcohol gel, don't touch your face and exercise a bit more caution around people who are obviously ill.

I don't let run of the mill colds stop me taking the Humira. If you have signs of a serious infection, that's another matter and I suggest that you seek professional help.

I also have pain in the backside and left thigh. The suspicion is that there is some nerve damage as a result of the many surgeries that have been carried out. However, I'll be having an MRI of the lower back/sacroiliac joints in the near future. In the mean time we are trying Amitryptyline to see if it will dull the pain down.

I wish you well.

Mark

 

[Emily]

I have not changed any aspects of my life since starting Humira. I act like a normal person and I don't take any specific precautions about germs. I have gone through a couple common colds on Humira and the experience is pretty average and the same as anyone else with a cold. All in all, I do not feel immuno-compromised as people believe they will feel on Humira. And the benefits really outweigh the risks in my opinion.

 

[autumn_rose]

Thanks, everyone, for all of the input. I feel a little better, hearing from people that have more experience with this medication.

 

[Scifimom]

I did not change to many things, I have two kids and even if I am carefull with germs, they are not. They also get sick and I have to take care of them (I am their mother after all). I live a normal life, I work in an office with 7 other people, I study and I have to take classes (With LOTS of other people) I go to the movies, theatre, take trips. Everything. That said I do get sick easy and my colds last longer. But so far (3 years into diagnosis 15 months into Humira) I got sick twice last winter and once this winter (so far) and I also caught a 24hour stomach bug which lasted a couple of days (Yeah 24 hours for others not for me).

So yes I am more or less fine in the sick department.

 

[georgiegirl]

I started Humira yesterday (can I just say OUCH! for my legs). But I've been on other immuno-suppressants for a year or so and I actually think I've been sick less! It's like it's brought my immune system back to normal or something. When I do get sick (had a couple colds and stuff), it does last longer. I try to wash my hands etc more frequently, but I get a train to work every day and work in a building with 2000 other people so do have a lot of exposure. Hopefully the Humira won't change this.

Best of luck - I hope you find it really helps you!

 

[Worried]

Humira

Hey Guys, my first post here would like to start by saying good luck to all of you with this dreaded disease. I do not have it myself but care for my eighty year old mother who was diagnosed with it very late in life (70). It may of come late in life but it hit her with a vengeance. In her first hospital admission she had her colon and much of her intestines as well as her appendix removed. I cannot beleive she survived that original bout. She is a fighter though and has continued to battle these last ten years. Even after several more surgeries she is still hanging in there. Back in September 2009 she was on deaths door for the third time in this heroic battle due to a severe septic infection from a hidden fistula in her rectal area. She was too weak and frail at 78 to operate on and could not eat by mouth due to the fistula emptying waste into her body. It was a very difficult time and we thought she had given up but after about a week in the hospital she was again coherent enough to tell us she wanted to keep fighting. She could not eat by mouth so she was put on TPN (Total Parenteral Nutrition) and began her valiant fight back (AGAIN). She needed surgery to address the fistula but surgeon would not touch her in her weakened state. The plan became to move her to a nursing home keeping her on the TPN and having me to give her the 40ML Humira penn injection every two weeks. It worked.The fistula closed on its own. Her GI alomg with the rest of us were stunned. Ater about 11 months recuperating in nursing homes she was able to return home to my house in Aug. 2010. In my heart I beleive the Humira saved her life and I also beleive it is prolonging her life now. I give her her shot every two weeks and she cooks every day beads and paints as well she actually does more than me and I am only 50. I know the list of side effects is scary but in her case I am sure the risk is worth it. That stuff is god awful expensive though. The price of each one of two 40 ML's Penns she gets a month is $1,000. Her medicare part D has been footing the bill since she started but as of january 1 something changed about her part D plan and all of a sudden she is responsible for $650 copay a month. Spoke with the drug company assist through Abott Labs and evidently if you have medicare part d you cannot receive help from them with the copay. Any ideas would be appreciated as she nor me can afford a $650 monthly copay for this one medicine alone. Sorry to hsve been so long winded but guess I just felt I needed to tell her amazing story. Good luck once again to all of you. Worried

 

[Miss Underestimated]

Yes, I'm on medicare, and I posted a thread on the problems with medicare part D. Abbott has a charitable foundation. It took me 2 months to get the funding - it's a $2,500 grant. I get mine from Right Source Specialty pharmacy, and they have a finance department. Apparently they will send the drug and bill for the cost, when the foundation funding runs out.

Once she gets past the "gap" the part D plan should pay it all. What they've done to us on medicare part D is inexcusable. Abbott give the drug to people who need it, and now medicare won't let them give it to us.

 

[TeresaPro]

yep ouch indeed, but it's quick and you can do it at home

 

[DougUte]

Once she gets past the "gap" the part D plan should pay it all. What they've done to us on medicare part D is inexcusable. Abbott give the drug to people who need it, and now medicare won't let them give it to us.

I take it this is the so called donut hole? Our government at work! Our seniors and disabled, lets cover their meds until we have paid so much, then drop them like a lead balloon. Until they have paid so much more out of picket, then we will start covering it again! I guess its better than nothing.

 

[Miss Underestimated]

Yes, and the real travesty is that we cannot use any of the discounts other people get. For this drug or any other drug. I linked to the relevant rules and regs.

We can't buy a better insurance plan either - I called BC/BS and asked if I could get my old plan back - the one I had before I got the part D plan. Nope, the government will not allow us to get another any other prescription coverage. grrrrrrr.

 

[outlier]

i do have more chest colds then i use to but they are all very mild. I did get shingles due to my low immune system but that is not preventable, and while missarable at the moment since i was aware that my immue system had issues i was able to deal with it fast.

I have not had to change anything. i went on vacation to a place where i thought i won't have electricity and got premission from my doc just to take right before i left and the day i got back. Abbott will send you a travel case for short trips.

overall it's not as scary as i thought it would be.

 

[autumn_rose]

Thanks again to everyone for sharing their stories, experiences, and opinions. I really appreciate it. I'm expecting to receive my first shipment of my Humira delivered on Wednesday and it should be administered shortly after. I have to wait for a home health nurse to come to train me on how to do it myself.

In regards to the Medicare issue, I do think that the system is out of whack. I also have medicare, but I've apparently lucked out. I have a prescription coverage as well called Humana and my doctor was able to get them to approve my Humira, all I have to pay is $6.50 (yes, six dollars and fifty cents) for each dose, which is a heck of a bargain if you ask me. I'm sorry for everyone that has struggled with payment for their medication. Believe me, I've experience it as well. When I was first diagnosed, I had no health coverage at all and relied on a local free clinic for all of my treatment. Many of the drugs I needed at the time, though (things like Entocort and Imuran) were not available at the clinic and did not have assistance programs, so I had to try to pay out of pocket. And it got expensive, indeed. So I understand. Our government needs to stop funding things like wars and as mean as it may sound they need to stop send aid to other countries and start taking care of their own people first.

 

[Miss Underestimated]

Wow, that is good!! Glad you got it! Did you fill out any paperwork? I have Humana prescription coverage. Maybe you have a different Humana plan - is it medicare complete?

 

[picci33]

Hope the Humira goes well for you. I was on Humira for about a year and very very slowly i began to become ill and i didnt realise it. I was finding it harder and harder to breathe. The Dr said it was asthma playing up...but i knew it wasnt...I tried very hard to convince the consultant that it was the Humira, but he didnt think it was. I got to the point i could no longer walk up the stairs and i was on a nebuliser 5 times a day...i called the hospital one day and said the humira is killing me...luckily i got to see a lung specialist and he got me off the humira and sorted me with steroids...i had a lung function test and he couldnt believe i had not collapsed. I am now fine but it took a while to get back to normal...it worked wonders for my Crohns though

 

[Miss Underestimated]

That's the first I've heard about a lung reaction - what did it do to your lungs?

 

[picci33]

I began to get very out of breath but it happened so slowly i didnt realise it as happening untill i was finding it difficult to walk round shops and do basic things...Dr said it was asthma so i was given an inhaler...it orked for a while but i was soon finding it hard to breath even when resting and i found it very hard sleeping as i couldnt breathe...i was given nebulizer to take which didnt do much...i was very weasy and found myself hunched trying to breathe ...a day before my injection i called my consultant and i told him my next injection would kill me so i refused to take it...no one would belive it as my Humira as no one had heard of it before...luckily the professor at the respiratory clinic believed me....i noticed hen i took my injection after about a day my breathing would get worse and by the end of the 2 weeks it would start to get better...but the symptoms would get worse ith each injection. The professor measured the my breathes in a big machine and did a lung fuction test....it was not good and he couldnt believe how i managed to struggle for so long...he gave me steroids and a seritide inhaler and after a few eeks i was back to normal.....sadly im now so very scared of not being able to breathe i still take the seritde.....i just want people to know that this is a side affect but very rare...it was an allergic reaction but not in the usual way...it was a very gradual long progress which got worse with every injection

 

[Miss Underestimated]

Shortness of breath is listed as a possible serious side effect, but I assumed it was anaphylactic shock, not asthma, and that it was immediate, not progressive.

 

[picci33]

It is listed as a serious side affect...but it was so very hard to get any Dr or consultant to believe that it was the Humira. I dont think it was asthma i really think it was just a reaction to humira but not the immediate reaction as in anaphylactic shock. And it was definitely progressive, and this puzzled the Consultants. I had to remind them that not all allergic reactions turn into anaphylactic shock...i gave the example of being allergic to dogs...i sneeze and get swollen eyes but not anaphylactic shock...but anyway its all sorted now....But aside from this i think its great for crohns and really does the job.