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1GRNTHMB's Photo 1GRNTHMB Posts: 4,791
6/23/09 7:32 P

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Dahna, I am happy for you that you were able to get the Abbot Card. Some of the companies are so good at doing that.

Mark
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DJCARR Posts: 165
6/23/09 12:05 A

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Hi all,

Good news on the co-pay! With the Abbott card it is down to $5! WOW! Thanks again Erin for telling me about the program.

Mark - You are so right, if only it was like the commercials! I am grateful if the combination of Sulfasalazine, Celebrex, Humira and methylprednisolone can keep me from becoming more ankylosed. We do have to keep it all in perspective. Thanks.

Noni - Enbrel every week? Cool. So glad to hear about your progress. May it continue! I am on the every other week schedule. Although no decrease in pain, hoping that the c-reactive protein is less at my next office visit. Hasn't happened yet. Still at a 3 plus for this inflammation marker.

Actually had some good news today! My rotator cuff tear is not complete! Was worried that I would have to take a break from Humira for surgery.

Have so many blessings I am trying to focus on the positive.

Thankful for my Spark Buddies!

Welcome to all the new members.

Dahna

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1GRNTHMB's Photo 1GRNTHMB Posts: 4,791
6/11/09 1:03 P

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Noni, thanks for adding this. It brings to mind that some people might think that the treatments will take away all the problems. I know when I see the comercials for using the bilogicals for RA they make it seem like it takes all the pain and sweeling and everything else away. And that you will be normal again. It is very miss leading. What my doctor had told me is that the main goal was to stop the disaese from getting worse and that the reduction in pain would be an added benifit.

Mark
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NONINEKO's Photo NONINEKO SparkPoints: (0)
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6/10/09 1:52 P

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I've been taking my Enbrel for about five weeks now. I've noticed a big improvement. It's still not completely better but after about the third or fourth dose I started noticing little things, like the fact that I was able to get out of a chair without pushing off from the arms. I'm very excited. My rheumatologist told me that I should know how well it would work by the end of the third month.

Hopefully yours starts working soon.

emoticon -Noni

"My pain belongs to the divine. It is like the air. It is like the water." - Andromeda

"Run" - The Doctor


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1GRNTHMB's Photo 1GRNTHMB Posts: 4,791
6/10/09 11:09 A

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i had results right after my first shot. But I have heard some people say that they took up to three months before they noticed a benefit. So hang in there for right now. If, at the end of the six months you have commited to, if you do not have an improvement, ask about a different medication. I was on remicade because I have severe asthma also and it was supposed to be the safest with asthma patients. It actually helped my astham also.

Mark
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DJCARR Posts: 165
6/9/09 11:21 P

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3 shots down and .... nothing yet. Have told my rheumatologist that I will stick with it for 6 mos. Having other health problems, just wish my hips (and all other joints,spine and neck!) would cooperate.

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1GRNTHMB's Photo 1GRNTHMB Posts: 4,791
5/5/09 11:56 A

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I would have a real hard time giving myself the shot. During the year I was on Remicade it helped me so much. You really do not have to be afraid of getting the shot. If one medication does not work there are others to try. And even though the side effects seem scary, they are very rare.

Edited by: 1GRNTHMB at: 5/5/2009 (11:57)
Mark
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DJCARR Posts: 165
5/4/09 3:19 P

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Hi All,

Gave myself the shot on Friday (May 1). It was really easy! Almost too easy - I was so nervous and used such force that needle bounced and stuck twice. Glad that I was using syringe so that I could control medication. No skin reaction which is great. Now I'll just wait and hope that improvement is coming in time.

Have applied for discount card to decrease my copay. Thanks!

Noni, good luck with the Enbrel. Don't be discouraged. Different treatments work for different people. You are looking for the right one and maybe it is Enbrel! If it isn't, there are other options. While I know it is not always possible, and we all need to vent, a positive attitude is also "good medicine."

Regards,
Dahna

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NONINEKO's Photo NONINEKO SparkPoints: (0)
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5/3/09 2:03 P

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I get my first shot of Enbrel on Wednesday of next week, and I can't believe how nervous I am about it. My rheumatologist gave me an Enbrel prescription card, so I don't actually have to pay anything for my medicine for the first six month. Which is great, because I'm on a fixed budget right now... but I'm still really nervous about the shot.

Partially because I have to have a shot each week, and partially because I read somewhere that only something like 53% of people with AS respond to the medication. And I have really bad luck as far as my health is concerned. Now that I actually have a diagnoses and a potential treatment, I would hate to find out that I'm stuck with this pain.

emoticon -Noni

Edited by: NONINEKO at: 5/3/2009 (14:03)
"My pain belongs to the divine. It is like the air. It is like the water." - Andromeda

"Run" - The Doctor


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HALF2EAT's Photo HALF2EAT Posts: 253
5/2/09 1:45 P

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How is everyone?? I know it's a little soon but really concerned how the Humira shot went. Also, how is everyone else?

Make it a Great Day!!
erin :)
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DJCARR Posts: 165
4/29/09 10:50 P

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Humira arrives on Friday!

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CBPIPER Posts: 24
4/29/09 4:35 P

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I get HUMIRA through a mail order pharmacy on my insurance. I pay $6.60 per shot. I would think that your insurance wouldn't lie about benefits. I love the HUMIRA. I just started it in January and I can't believe how good I feel.

CBPIPER Posts: 24
4/29/09 4:33 P

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I noticed that you had gluten free and healthy under you name. Does a gluten free diet help A.S.?

1GRNTHMB's Photo 1GRNTHMB Posts: 4,791
4/21/09 3:05 P

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When I first started the Remicade I was in a medical trial. They are great. You get paid to do it and all the medications are free. Only problem is if you are one of the few that is on the placebo. And you usually will not know except by the way that you feel. I felt better the day that I got my first shot. I had a very severe cough and it was the first day in years that I went without coughing. The cough is from the severe asthma that is caused by the restriction of the ribs being fused together by the AS.

Mark
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DJCARR Posts: 165
4/19/09 6:40 P

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Haven't heard about it... but that isn't surprising
I have a lot to learn!

Have worried about the expense for about a year and delayed treatment. My rheum. Dr. has been trying to get me into a study for more than a year because of the fear of prohibitive expense.

Was told last week by my insurance (Express Scripts/CuraScript) that Humira co-pay will be only $25 per month for two pens!

Hope it is not too good to be true.

Seeing the Dr. to get script called in, and ask more questions and finally start. And feel better!

IF it IS true, will know I'm very fortunate.

Thanks again for your help,

Dahna

P.S. If you (or others) think of anything else I should be aware of before starting, please let me know.

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HALF2EAT's Photo HALF2EAT Posts: 253
4/19/09 2:51 P

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Did your doctor give you an Abbott card? They also help cover the co-pay of Humira. Abbott paid $325 for me.

Make it a Great Day!!
erin :)
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DJCARR Posts: 165
4/18/09 7:03 P

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Thanks so much for the encouragement. I will start next month. Was worried about the expense, but luckily the insurance will cover most of it - or so they say.

Will keep you posted about my experiences when they begin. Just know that I'm not coping well on my current meds. Always in pain and often tired. Have migraines too, so it is not all AS.

I am hopeful. Hoping also that you both can replicate your good experiences on these drugs again soon!

Regards,
Dahna


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HALF2EAT's Photo HALF2EAT Posts: 253
4/18/09 2:50 P

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Hi gang!
I was taking Humira until I lost my insurance and couldn't afford the copay ($1100) w/my new plan. Humira was awesome! I felt great but I really noticed when I stopped taking it how much it had actually helped. It takes about 3 months to kick in and there's two ways, a "pen" shot or needle. I had my boyfriend do the pen shot in me because it makes a popping sound. I did the needle once on myself and it was ok. The only side effect I had- my fingertips became dry, like dry skin, and my tongue was sensitive. It hurt if I brushed my tongue so I used a tongue cleaner from then on. Strange but true. It may be different for you though. It was very worth it and when I can I will use it again. Keep us posted please! emoticon

Make it a Great Day!!
erin :)
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1GRNTHMB's Photo 1GRNTHMB Posts: 4,791
4/16/09 4:14 P

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I was on Remicade which is very similar to Humira but had to be taken intravenously. It worked wonderfully. Took away a lot of the stiffness and pain and even reduced my asthma and coughing considerable. Only reason I stopped is because the insurance would not pay for it and it was to expensive for me to pay for. I really think the benefits greatly out way the risks.

Erin, aren't you on Humira?

Mark
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DJCARR Posts: 165
4/14/09 3:31 P

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Hi, I'm taking sulfasalazine (3000 mg split in two doses), medrol (prednisolone once a day), celebrex and lyrica (both twice a day). Supposed to start Humira in a few weeks. Would be interested in others experiences with Humira type drugs.

Thanks.



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1GRNTHMB's Photo 1GRNTHMB Posts: 4,791
3/14/09 12:11 P

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I am on Sulfasalazine and Sulindac and was on prednisone and temporarily on Remicade. Now for explaination: The Sulfasalazine is one of the Disease modifying drugs and it does help to keep the disease from getting worse and reduces the stiffness - The main side effect is weight gain. The Sulidac is for the pain and for inflamation - it has the same side effects of any NSAID. The predisone helped with the pain but it caused weight gain, brittlebones and teeth - I was taken off it because my bones were getting very brittle and my teeth were falling apart, the pain level increased after going off the predinosone. The Remicade I was on for a medical trial and it was wonderful - It took away most of the stiffness and greatly reduced the pain; But after the trial ended my insurance would not cover it.

As far as going off the Medication: I was off all my medications for about a year when I had no insurance. The AS got much worse and that is when my ribs fused together causing me to have constant lung infections and severe asthma. So I do not recommended that anyone stop taking their medications. It can be catastrophic.

Mark
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HALF2EAT's Photo HALF2EAT Posts: 253
3/2/09 1:26 P

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maybe not.... she never indicated how she did it. she just said she was tired of troubleshooting. i'm sure she was smart enough to use a physician though. she is a teammate so maybe she'll let us know.

Make it a Great Day!!
erin :)
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60SIXTY's Photo 60SIXTY Posts: 25,074
2/26/09 8:55 P

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I think people who stop medication without guidance from a physician are in denial.



Linda - North East Indiana, USA `Goal to build myself up to reach 1,000 fitness minutes per month.

"To lose a healthy one pound of fat per week, all it takes is a 500-calorie deficit per day."


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HALF2EAT's Photo HALF2EAT Posts: 253
2/23/09 10:28 P

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I'm currently taking methotrexate. Before that, Humira. What is everyone else using that has worked or what side effects are you experiencing? One fantasctic lady here said she just put her foot down one day and stopped all medication! I do not believe that's for me though. yikes...
So, just a general poll here. emoticon

Make it a Great Day!!
erin :)
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