I have Reactive Arthritis (or Reiters Syndrom). I was diagnosed when I was around 20. I have had 4 flares since then, the current and last ones being the worst.
My flare 2 years ago ran the standard treatments and my physician tried me on Humira. Within 2 months, I was in remission, and feeling 100x's better.
This flare (started in Jan) has been the same, except my insurance company refuses to pay for the medication (It runs $1500 for 2 shots, you take a shot every other week). They told me that Humira is not FDA approved for Reactive Arthritis.
I am distraught. My quality of life has suffered so much for the last 5 months. I no longer go out except to work, and I go to the grocery store as little as possible. I use a wheelchair if I want to try to go anywhere that could be a lot of walking.
I was so hoping that Humira would be the answer again, to stop this downward sprial into endless pain and frustration.
My only hope is that I will go back into remission soon and can start getting back to a more normal existence.
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Humira
- By Kalthia
- Posted May 24, 2007 at 10:15 pm · 4 replies
- In Medications and therapies
- Shared with the public
Explore topics in this discussion:
Exercise Cancer Arthritis Fever Breast cancer Weakness Pain Prednisone Methotrexate
4 replies
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- By Kiley
- Posted July 7, 2007 at 10:48 pm
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Hi Kalthia, I was just diagnosed with Reiter's 2 months ago. It started just with a fever and weakness and now I'm having all kinds of joint pains. I've been using NSAIDs to control the inflammation, but it doesn't seem to be working that well and I hate taking so much medicine every day when it's not doing enough. My doctor hadn't told me about Humira and all the research I've done on what I have didn't even mention that as a treatment. My doctor said if I don't get better soon, he will start me on methotrexate, but I've been reading about it and there seems to be so many side effects. So, I was wondering if you could give me some advice on what kind of treatment you think is better and did you have any side effects from Humira? I am also worried that my insurance won't pay for Humira though, so either way I probably won't be able to get the injections, but just in case...
How are your symptoms these days, by the way? Are you getting better? Hope so! Let me know!
- By Kalthia
- Posted August 15, 2007 at 6:06 am
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Hi Kiley,
Well Humira is only listed as being a treatment for RA. BCBS won't cover it for me at this point because of that..... even RA sufferers have to go through the same medication regimen.... NSAIDS, Steriods, and Methotrexate. The methotrexate, scary because it is a chemotheraputic agent (it used to be used for breast cancer) is not as bad as the prednisone in regards to side effects. (In my opinion).
Methotrexate is also used in conjunction with birth control pills as the morning after pill.
Usually I have to go through 6 months of treatment and active disease before my doctor will look at the injectables. There are more than just Humira, but humira you can inject yourself weekly at home, the others are more often or require a visit to a doctors office for an IV drip.
Truly, there are no other options. The methotrexate, in combination with prednisone and NSAIDS is it. For this flare, I decided against the prednisone because the side effects are just intolerable to me. The weight gain, moon face, altered feelings (you get a kinda rushed feeling), mood swings. The methotrexate only causes me a bit of nausea when I get into the 10 pills a week area (some days that can be really bad, but only for the day after I take the pills). And it can affect my appetite for a few days...
My symptoms currently are, to be honest, beating me down into a little pile of crying humanity. The last few days have been awful, and I am in the cycle where you feel so bad for yourself it sucks.. It is so much easier if I can stay positive. So... I am trying to be positive today....
Kiley I wish you luck. The trick truly is to keep moving. If I decide to 'rest' a day, like my husband thinks I should, I am in pain all day. If I get up at 6 am.... take a shower, and start my day moving, I feel much better. Take your NSAIDS & methotrexate even when you feel better, take care of your tummy (always eat with your meds), and move as much as you can. That is the best advice I can give you. Good luck!
- By Kiley
- Posted September 26, 2007 at 7:10 pm
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Hi Kalthia,
Thanks a bunch for the patient education! My doctor doesn't like to volunteer much information to me and I am just finding out enough information to be able to ask the right questions. Anyway, I've been on methotrexate for a little over a month now and I'm just starting to feel a ton better, but still not 100% yet. I was swimming every other day but that only lasted about a couple of weeks. It made me feel a little better but I got so tired because I have so many other things to do and not enough time and then I just can't do much the day I take the methotrexate or the day after because I get so nauseus (I know, excuses excuses...).
Anway, I've been wondering if you're doing better yet also? You should be if you're not already, it's been way too long for you and nobody should have to be in so much pain for so long. I also thought of something today, what if you got your doctor or another doctor to change your diagnosis to RA so insurance will pay for the Humira injections? I think RA and Reiter's have enough overlap in symptoms...maybe not though, it was just a thought. It would probably be highly illegal i guess anyway, but doctors misdiagnose patients all the time...
Another thing is, I found out that a lot of times Reiter's is genetic and that there's a genetic test for it, the HLA-B27 gene, but it's expensive and I don't think insurance will pay for that either because they try not to pay for anything. So I was wondering if you have any thoughts on the genetic testing because some day I think I might want to have children but I also don't want to pass on the gene if I have it but then again I know there has to be an environmental trigger to set it off even if someone does have the gene. Did you ever get tested for it? Do you have any children and does he/she/they have Reiter's also? Please let me know if you think it's worth getting the test or if I'm just worrying too much.
Thanks, Kiley
- By Kalthia
- Posted September 27, 2007 at 5:11 am
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Hi Kiley,
I am really glad the Methotrexate is working some for you. Try to keep up the exercise, it really will help.
I am doing better. My physician finally figured out how to ask the humira question the right way, and with the request I sent a letter explaining how my daily life is adversely effected by arthritis. That day I got a call, and humira was on my doorstep in two. Within a week of taking the first shot, I was feeling much better. I am still on the metho, but have already started tapering it. I still have pain in one ankle but I can do SO much more.
I am negative HBLA-27. It is a pretty standard test, so I bet your insurance will cover it. It is one of the first things they did back when I was 20 and was getting diagnosed. The outcome though, will not change your treatment. So, I am not sure there is much value in it.
I have a 15 year old son. And so far, he has no signs of Reiters. My mother does have it, but my two sisters do not. Men are more likely to have it than women. I would not worry about passing it on, it is treatable, not deadly. And although it can be difficult at times, I wouldn't wish my mother never had me! And I certainly wouldn't wish that you never experience being a parent because of Reiters! I understand your concern, but in the long run, I would say it is more important to have children and experience that, with the risk, than to not. Just my two cents..
:)
Kalthia
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