Switching horses

General
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Hi Grandma J,

Just wanted to say I’m on Medicare since November due to disability. I’ve been on Enbrel for about 4 years and was concerned I would have to stop when medicare began. It’s a drug that needs pre-approval, however that took one call from the rheumatologist and I was ready to go. So Medicare does not only approve Remicade. Enbrel did however cost me $1200.00/month. The cycle of Medicare starts over again every January, so January and February were partially spent in the coverage gap (aka donut hole) which was very expensive. However due to the cost of Enbrel and other expensive/numerous meds, I already have reached the catastrophic category(meaning the insured paid out of pocket $4,700.00
for Rx costs that year) which means from now until December Medicare pays 95% of all my drug costs. So Enbrel helped both me and my wallet be in less pain! Hope all goes well and hang in there!



Grandma J said:

It’s nice to hear how well you people are doing on Remicade. In the U.S., as far as I know Remicade is the only biologic covered by Medicare. So, if Enbrel holds out for me until I’m 65, I don’t think I have any choice but Remicade. I realize Enbrel probably doesn’t pack much of a punch but I like it because I have no SEs and if I catch a virus or something the Enbrel isn’t lingering in my body preventing my immune system from fighting off the “bug”. That was a big factor in my choice of biologics.

I’d like to know if there are common SEs with Remicade, or if people on Remicade are more apt to catch viruses or bacterial infections. Nym, why was Remicade suspected to cause your neurological symptoms? Has it been known to cause these types of problems?

Judging from how a lot of people describe their symptoms, I don’t think I have the severity of the disease. I have had foot pain and neuropathy in the past that I would often say I was sure it couldn’t hurt any more if someone took an axe and chopped my feet off! Or the unrelenting tendonitis in several places, or the constant weakness and fatigue, or the psoriasis and, oh, the ugly fingernails. But I’ve seen pictures of disfigured hands and really severe psoriasis, and compared to that I’d say my disease is moderate.

So, I consider myself lucky, and I’m hoping Enbrel is strong enough to carry me through the next few years. But, if it doesn’t, it’s so good to hear about others’ good luck with the different biologics!

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I have tried Enbrel and Humira with no results at all, each for about 6 months. then I was switched to Remicade. it works really well for me but for only about 5 weeks and my insurance refuses to pay for it any more often then every 8 weeks. my Dr. decided to try me on Simponi, huge mistake. had a very bad allergic reaction to it, so we went back to Remicade. I am on the max dose of it and it works very well for about 4 weeks now. I have no SE from it that I am aware of other then feeling pretty crappy on infusion day. the day after the infusion however I am superwoman. As for getting sick, I work with the public and I have not had the flu or even a bad cold in several years. that being said I do carry around a can of Lysol spray at work during flu season and spray all phones computers, ect before I touch them. I have been known to even spray people, LOL. my one wish is that there would be some clinical studies done to prove that Remicade sometimes needs to be more often then every 8 weeks as that is the reason my insurance wont let me get it more often. At my last apt my Dr. said she is going to appeal to my insurance 1 more time and if that don't work will change my diagnosis to rheumatoid arthritis since there has been clinical studies to prove more frequent dosing helps.

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LOLOL, pinkgrl--spraying people with Lysol--I'm gonna laugh all day about that one! Would I love to do that!!!! I've considered wearing a mask when our grandkids are sick because that's who I catch things from. Spraying them in the face with Lysol would be cruel, don't you think? But, it's a thought.......

Babs, I doubt once I'm in retirement I'll have enough money for $4,700 of Enbrel. On private health insurance I'm only paying $9.00/month with the help of Enbrel Support. We will be comfortable in retirement, but not loaded. (I'd rather spend that $4,700 on a vacation, but maybe I'll feel differently about that when the time comes!) From what I hear about Remicade, I'm hoping it won't be an issue if/when I have to switch to it.

The hives reaction is interesting. For a couple months every day I was getting random itchy hives in small patches here and there on my hands and firearms. I have no clue what caused this, but it stopped a couple weeks ago. Anybody have anything weird like this?