Hi,
I have been on Remicade for about a year now, I am taking it every 6 weeks, but it only helps for about 4 weeks. Used to be doesed every 8 weeks…
Do they increase the doasage, or is it “just grin and bare it”?
This last week has been pretty rough, luckily I have my support cat…
Have you asked if they increase it. Obviously they did from 8 weeks to 6. However I would assume there’s a limit too. Glad you have your cat.
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Glad for your support cat, too, Jon…have you asked your rheumy, or maybe he can switch you to a different biologic?
Because of my awful memory, I can’t remember your history off-hand, so IDK if you’ve been through other biologics. I know that in America when a person retires and goes on Medicare, apparently Remicade is the only biologic covered. I’m a wreck thinking about it, because it seems people complain of SEs from Remicade, plus like in your case, it wears out a couple weeks before your next infusion. I can fully retire in less than 2 years, but I’m not sure I will–only because of having to give up Enbrel and switch to Remicade. I’m hoping something happens before then to change the Medicare protocol.
I hope you get a more frequent dose or switch to something else so you don’t have to deal with two weeks out of every six feeling yucky.
This is pretty much the last option, I have tried all the others.
They have trouble increasing the amount, because the insurance company
freaks out…
Ugh, insurance companies and their decisions on whether to help improve our quality of life or just let us suffer it out.
Did you hear the story on the News the other week? The insurance company got sued by a guy who has a autoimmune disease, who was no claimed. They admitted that they never check the records, just reject the claim! B U S T E D!
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That’s so interesting… there has been this huge increase in rejections of disability in Australia over the last ten years (ie ten years ago 3 times as many people got approved for disability per year as do today)
I wonder how many organisations just have a policy of rejecting until you take it to appeal…
Well, they have nothing to lose, it is the patient that suffers, what do politicians care?
Yes, although now I realise that it is probably the case, it’s easier to work the system - ie an automatic rejection is expected as the first step, so to minimise waiting time, you need to hassle them till you get rejected (or if you score and don’t!), then be prepared for the appeal. Horrible process, but I guess at least if you know it’s the normal process, you can be prepared and not get despondent after the first rejection.
Wow, REmicade really wiped me out this time! Came home and went fast asleep, the kind of comatose exhaustion sleep… Then didn’t get up until around 11am, except to give the cat breakfast, (no amount of fatigues will matter if cat claws your eyeballs out!) Dealing with chronic fatigue still, and blurred vision, it is now early afternoon.
I wonder if it hits you harder, it will work better? One can only hope…
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I have been on Remacaide almost 4 years. Went from 8 weeks to 6 weeks early on. Started at 300 mg and ninemonths ago was up to 700 mg. This week dr. Told me it was no longer working so switching to Simpani(sp). He told me after a few years it just doesn’t work for some. You are early with this Med. Let dr. Know so doses and frequency can be adjusted.
I am already getting it every 6 weeks, but I think just 200mg dose. I didn’t know they increased the dose that much. I hear that the body builds up antibodies and then the biologics are not effective, she also said that MTX helps keep the body from making antibodies.
Talk with your doctor. The more you share the better the two of you can work on your care. PS— I’m starting Symponi in a month. I have only been on biological except for methotrexate.
Just like clockwork, right on the 4 week period, the pain and fatigue comes.
I see my Rheumy in two weeks, we can see about another biologic.
Oh well…
My veins were about shot anyway from all the infusions.
My Rheumy is increasing the Remicade dose to 600 mg, since it is working for 4 weeks, she doesn’t want to change meds.
At least I was in a flair when I went in for my infusion, so she got to see it firsthand. No veins collapsed, went very well…
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