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here we go again!

  • CindyL
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15 years 6 months ago #2490 by CindyL
here we go again! was created by CindyL
I'm off to the hospital for another treatment. Just had one 28 days ago on March 1st. I'm even back up to 5mg. pred every day. It's been 4 years since I've had my spleen out, and now all of a sudden, I'm getting IVIG more often. I did talk to my hema a week or so ago, and we're going to stretch out the time of treatment; going to try 6 hours rather than 3 and see if that makes a difference in side effects post treatment. Hopefully, this will help.

Well, hubby is waiting for me so I gotta run. See you all later.
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15 years 6 months ago #2501 by server
Replied by server on topic Re:here we go again!
I'm assuming that you've had bad side effects from ivig before? Hope it's going better for you this time.
My flesh and my heart may fail, but God is the strength of my heart and my portion forever.
Psalm 73:26
Blessings,
gretchen
  • CindyL
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15 years 6 months ago #2504 by CindyL
Replied by CindyL on topic Re:here we go again!
Every time I have it now, I'm sick for the next 2/3 days. My infusion time was lengthened and instead of being 3 hours, it took almost 6. We'll see what happens over the next couple of days.
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15 years 6 months ago #2510 by tortie
Replied by tortie on topic Re:here we go again!
How crappy, I'm sorry to hear that Cindy. It's tough to figure out a plan B. I think I remember that you weren't able to get Rituxin before, can you now????
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15 years 6 months ago #2547 by CindyL
Replied by CindyL on topic Re:here we go again!
Nope, still can't get Rituxan here. My hema dr. is looking into some other treatments. So far today, I'm not feeling as bad as last month. Maybe the trick was to slow the infusion time. I'm hoping!
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15 years 6 months ago #2559 by server
Replied by server on topic Re:here we go again!
the time stinks, but I'm glad you're not feeling as bad. Will you go for more?
My flesh and my heart may fail, but God is the strength of my heart and my portion forever.
Psalm 73:26
Blessings,
gretchen
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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15 years 6 months ago #2573 by Sandi
Replied by Sandi on topic Re:here we go again!
Sorry, Cindy! Hang in there. Maybe he switched brands?
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15 years 6 months ago #2588 by tortie
Replied by tortie on topic Re:here we go again!
I don't understand why you can't get it there, it doesn't seem fair. I hope you get some decent options.
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15 years 6 months ago #2601 by CindyL
Replied by CindyL on topic Re:here we go again!
Apparently all my treatments this year have been the "Privigen". The slow time really seems to have made a difference. Until the doc can find something else to give me, if/when I need another treatment, it will be IVIG. My next test is April 25, so we'll see what this did for me.
15 years 6 months ago #2605 by
Replied by on topic Re:here we go again!
Cindy I'm glad to see you did well with the slower infusion time! That had to be a big relief for you.

Others in Canada have had rituxan haven't they? Is it available only in certain parts of the country?

Hopefully this infusion will last a long time!
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15 years 6 months ago #2612 by Christine
Replied by Christine on topic Re:here we go again!
Only some Provinces allow it (cost) and for certain illnesses. 9 times out of 10 ITP does not qualify. :( :( :(
Christine
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15 years 6 months ago #2617 by tortie
Replied by tortie on topic Re:here we go again!
Cindy, did they change your IVIG back to the glass bottles? They did it to us here about a year ago instead of the usual plastic bag. It is so much more hassle for the nurses and it looks so old fashioned. Going for a walk with the glass makes a lot more bubbles and if you have more than 1 bottle they klink.

I hope you can get some mileage out of your IV.

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15 years 6 months ago #2622 by Lorie85
Replied by Lorie85 on topic Re:here we go again!
I don't get it. IVIG isint that cheap. I would thank that they would want to give you rituxan and get you a remission. that way the province would actually save money... Humm
15 years 6 months ago #2625 by
Replied by on topic Re:here we go again!
I didn't know health care was per Province not country-wide. Thanks for the explanation Christine.
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15 years 6 months ago #2641 by gsh
Replied by gsh on topic Re:here we go again!
I think Health Canada (the national health department) determines if drugs can be used in Canada and for what illness. I think Rituximab is only approved for use in cancers and RA but would be off-label for ITP. The hemo can get it off-label on request but the province/territory will differ in whether it gets covered or not. The only way to get it covered is to join a clinical trial. It seems the drs here are weary of it because of PML so the trials will continue for a while yet.

Cindy - no matter what rate I go I always get the IVIg headache usually 2 days later. Drinking LOTS of water before and during seems to help me. I hope it lasts for you this time. Giselle
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15 years 6 months ago #2659 by CindyL
Replied by CindyL on topic Re:here we go again!
My IVIG has always been the glass bottles. I either get 4 small bottles or 2 big ones. The bottles get put up on my IV pole one at a time. When I see the bubbles, I know I am getting close to the end of the bottle.

Here in New Brunswick the IVIG is cheaper than the Rituxan. My hema dr. uses it for his cancer patients.

I am so glad the slower infusion time helped! I thought yesterday was going to be rough, but it really wasn't.

I hope I get more than 1 month out of this trip!
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15 years 6 months ago #2660 by alisonp
Replied by alisonp on topic Re:here we go again!
Canada seems to work roughly the same as the UK then. Treatments are approved by NICE for prescribing free across the NHS, but whether or not you get them depends on the local priorities of your NHS area. The example we see in the papers most often is if you want IVF treatment for infertility, you might get no free treatments in one area, but up to 3 in others.

NICE (National Institute of Clinical Excellence I think!) has provisionally rejected N-Plate for NHS prescribing based on cost/benefit. I think that Winrho has been withdrawn in the EC generally because the company that makes it didn't want to go through the testing regime.

Ali
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15 years 6 months ago #2669 by lili
Replied by lili on topic Re:here we go again!
It's not the best system. It makes for quite a bit of disparity across the country. It's bad enough for ITP, but many of these expensive drugs are for cancer and there have been campaigns in the newspaper in my province (Ontario, which is particularly bad) to get the provincial agency to approve one drug or another.

Cindy, there's probably an appeals process. Do think your hematologist could possible appeal for you to get rituximab or even one of the new TPO drugs? You'd have a pretty good case. All those IVIGs have to add up. Say they're $2000 per infusion. If you're getting them once a month that's $24,000 a year. I'm just making these numbers up, but I bet they're in the ballpark.

Lily
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15 years 6 months ago #2723 by CindyL
Replied by CindyL on topic Re:here we go again!
You're not far off, Lili! The IVIG is 3 grand a pop. But, I'm lucky, Medi Care pays for it.

I think my hema doc has given up on the Rituxan. He's looking into some new treatments. I've already told him I'd be a guinea pig!
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