Switching to Humira

By Laura Tuesday, February 02, 2010

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Hello,

My Rheumy is switching me from Enbrel to Humira. I take my first does tonight. I'm not really worried about it, but like a lot of you on this site, I'm worried about weight gain. I didn't gain any weight with Enbrel, but I've read that some gained weight on Humira. I am only 5'2 and can't afford to gain any weight. I struggle to maintain where I am at and that's really too much as it is.

I would also like advice from anyone who has went off biologics completely and what kind of success you had with it. All of my tests (blood work) are negative for RA, but my MRI's and Xrays say "possibly RA" and some are inconclusive. My hand surgeon has said it's RA, beyond a doubt, so based on that, my Rheumy started me on Enbrel, Methotrexate and Plaquenil. (don't take metho anymore due to problems).

So, the entire time I've been on Enbrel, about 6 months, I really didn't notice a change. At one point, I ran out of my Plaquenil for about a week and was in noticeable pain. My Rheumy said that if I was in that much pain missing one week of Plaquenil, then the Enbrel wasn't doing it's job, so that's why she's switching to Humira. So, this leads to the next question....I wonder if I really have RA. The Enbrel and Humira wouldn't effect the OA, would it? I just don't want to be taking medicine that I don't need to take.

Anyone have any info on this?

Thanks so much for listening.

Laura

Comments (21) | Add comment

Hope

2/ 2/10 6:32pm

You could always get a second opinion. I have heard that RA test show up negative even though the person does have RA its called sero-negative RA. There are different types of arthritis than RAand OA. You could have psoriatic arthritis and not have psorisis, and bios do work for that.

As for weight gain, I did not gain weight on humira and was on it for a year and half. So it probably depends on the person.

Laura

2/ 3/10 8:24am

Thank you Hope.

Ellen Galo

2/ 3/10 12:47pm

I'm on Enbrel right now but have had to back off, and may have to further - not sure where that's going to put me, so I will be looking to see what you and others say about it. Glad you asked the question...and I wish you the best!

Lisa Vance

2/ 4/10 9:53am

Hi Laura,

I'm on Humira and have been for over a year now. I haven't gained weight with it, although I heard from someone else that she did.. but then she was on Humira and not MTX so she could drink so maybe that was the cause!! Haha.

I'm also Sero-Negative and can tell within 2 days if I miss a dose of MTX. My rheumy knows this but hasn't said it means anything about the Humira not working as I had noticable improvements beyond the methotrexate baseline when I started on it. I dread missing my MTX as I am all but crippled by day 3 .. and that happens when you have to skip for antibiotics. I try desperately not to get sick enough to need antibiotics!!

Good luck. Oh yeah, the only side-effect I've had from the Humira is the localized injection site itching. The nurse with my special care department of my insurance plan told me you should not touch/rub the injection site for 24 hours, so keep that in mind 'cause it will itch like heck and you will want to touch it! I haven't noticed any difference when I do or don't scratch the site though, so i'm not sure it really matters!

Lisa in Orlando, FL

Ellen Galo

2/ 4/10 10:15am

Can you use Benadryl cream on the injection site? That's what I do when I have a reaction from Enbrel, it seems to work well.

Lisa Vance

2/ 4/10 10:18am

I use Benadryl or some anti-itch cream on the injection site and it works pretty well. I thought it was interesting that they didn't want you to rub the site for 24 hours though... at first I was scratching it all day because I went to work unprepared! Haha. I don't notice any difference regardless of whether i itch or not. My boyfriend who is a pharmacist thought that not touching might be somewhat appropriate during the first few hours for absorption and so it wouldn't leak out, but wasn't sure about the 24 hours either.

Ellen Galo

2/ 4/10 10:19am

I usually put a bandaid (small if possible) on and the cream around it if it itches. Sometimes it does, sometimes it doesn't, but it can be annoying! My Enbrel injection is only 1 ml so that makes it easier...

Lefty

2/ 4/10 10:11am

I was on Humira for about one year and I did gain weight during that time. However, I should tell you that the Humira did not work very well for me and my arthritis seemed to worsen during this time which caused my fibromyalgia to worsen also. I didn't feel well so I didn't exercise as much. Also, when in pain, I tend to feel nervous and eat more. So, I think it depends on your body and how you respond to the treatment. Prior to Humira, I was on Remicade and I felt that I did gain weight even though my doctor insists that it wasnt due to the Remicade. Remicade was a miracle at first and I felt wonderful but then started having reactions and had to stop. However, I was in remission for about a year and then started on the Humira. Now I am on Rituxin and Arava and feel really well. At times when I wake up in the morning, I'm amazed at myself. I look at my hands and feet and they seem so normal - no pain, no swelling - like I never had RH arthritis. Additionally, I am taking Cymbalta for the fybromyalgia but hope to stop this soon. Last week I had a small flare up and am being monitored to determine whether I need another infusion. I'm hoping not but if I do, then so be it. I just know that I can't go back to feeling the way I did prior to the Rituxin. Additionally, I'm losing some weight but again maybe its because I have more energy now. Its all about personal choices so good luck with yours.

Antoinette

2/ 4/10 12:37pm

Hi!

Based on your statements, I do not think you have RA-Especially if all your blood tests are normal. -But, then again, I am not a doctor. What area of the body were the xrays taken?

I personally have gained weight from Humira, but I also take a lot of other medications, so it may not be the culprit alone. It is working for me because my RA is in remission. Unfortuntalely I also have Fibro, so I am in pain from that all the time.

I would seriously consider going to a bone specialist, not a rummy.

Good luck and I hope you start feeling better.

Laura

2/ 4/10 2:52pm

Hi Antoinette,

My Orthopedic Surgeon is the one who said I had RA. My Rheumy was very indecisive and was treating me conservatively until My Ortho doc said this is definitely RA. So, I'm just not sure. I really don't like the Humira. The injection hurts more than the Enbrel did...holy cow! I'm not to worried about the weight. At this point, I just want to get rid of the pain. My Rheumy also thinks I'm in early stages of Fibromyalgia. So much good news! Thanks for the post and good luck to you too!

Antoinette

2/ 4/10 4:47pm

I too in the beginning went to an Ortho, but he is the one that state that I DID NOT have RA. He is not an expert in the Arthris field and, in my opinion, if your Rheumy is indecisive, then I would get a secound opinion. You should not be on all those medications unless you have been positively diagnosed. Please see another Rhuemy, this one sounds like she likes the $$$$. Good luck.

Antoinette

2/ 4/10 4:49pm

Oh, and he took the blood tests and showed that I DID have RA. He told me that I didn't because I didn't have pain on both sides of the body and that he won't wish RA on his worst enemy.

Antoinette

2/ 4/10 12:37pm

Hi!

Based on your statements, I do not think you have RA-Especially if all your blood tests are normal. -But, then again, I am not a doctor. What area of the body were the xrays taken?

I would seriously consider going to a bone specialist, not a rummy.

Good luck and I hope you start feeling better.

Ruthe

2/ 4/10 2:08pm

Hello,

Like you I am a seronegative person with RA (diagnosed 10 years ago). I am taking Remicade (for 3-1/2 years now...) and it has helped but has not handled all the pain and stiffness.

About 5 years ago a former rheum. doctor took me off Plaquenil, MTX saying I "probably didn't need them..." Well, I did, because after several weeks, all my pain, swelling and stiffness returned with a vengeance. I couldn't raise either arm as my shoulders had locked into a frozen position.

I am waging a battle to drop 10 or 15 pounds that have kept on me and wonder if the Remicade could be the reason.

The biologics work pretty well, but I wonder what the future holds for people like us.

Laura

2/ 4/10 2:54pm

I also wonder what the future holds. It can be scarry, but I try not to let it get me down. If we lose hope, then what else is there? Good Luck to you and God Bless!

Hailey's Mom

2/ 4/10 3:25pm

My hubby started taking Humira in January 2005, and it works well for him. He has not had any weight gain from it. He is on weekly injections since he can no longer take methotrexate due to high liver enzyme values on his labs. For us, Humira has been a lifesaver. Presently, we have good health insurance, but in the next 18 months he will have to go on Medicare. I'm frightened that we will not be able to afford this drug then.

A Friend

6/29/10 11:41pm

If you have difficulty paying for Humira, contact them directly! They have tons of programs to help people in different situations and they were very helpful for me. I am hopeful they have a program or way to assist you.

http://www.humira.com/Global/FinancialHelp/Default.aspx

Anonymous

2/ 4/10 9:08pm

I am having similar issues. I started with Humira in November 2009 with mexthotrxate. I did notice a difference when I had to miss a dose due to difficulty with the insurance coverage. I respond better to both and have a flare when I miss one or the other. I have not noticed any weight gain. The infor DVD and nurse support is a great way to go and removes stress with the change. Good Luck!

Tigerlily

Kelly Young

2/ 5/10 9:08pm

Can you nail down specifically what it is that makes you doubt you have RA? I agree with others that it "sounds" like you do. But your feelings are still important, too. So, I'm wondering whether you can say specifically what it is. Then, it might help to look carefully at whatever facts are relevant to that to decide for yourself what to believe.

Just one thought: doctor's are usually hesitant to diagnose RA. They are hesitant to use these medicines unless they are very confident. I know that's not your complete answer. But just one more idea to consider.

Laura

2/10/10 8:41am

Hi Kelly,

Actually, no I probably don't have anything factual as to why I feel that way. I have most of the symptoms other than that I am negative on the blood work. I have had MRI's and X rays that say "possibly RA, but inconclusive", but my Ortho surgeon who did my joint replacement said, it was RA beyond a doubt, so that really is all my Rheumy is going on. I guess because I didn't have a good experience with Methotrexate and Enbrel didn't help at all, and now the Humira, which hurts waaaaaay more than the Enbrel. It's just a waiting game that I don't like.

Thanks so much for your input.

Have a great day!

Kelly Young

2/10/10 11:02am

Being negative on the bloodwork is actually pretty common. I have some statistics on that if you haven't seen them. Look here.

Here's another little "test" - did you ever take any steroids? Did they make you feel better? That's usually a clue since RA pain is linked to inflammation.

Maybe your mind just doesn't want this to be true. Can't imagine why...

Take care,

Kelly

Switching to Humira

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