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Rho(D) immune gobulin {WinRho} aseptic meningitis?

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9 years 8 months ago #54345 by Rob16
Do IVIG and WinRho both cause aseptic meningitis?
Can WinRho be used in place of IVIG for someone who gets aseptic meningitis with IVIG?

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  • Sandi
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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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9 years 8 months ago #54347 by Sandi
I have never heard of Win-Rho causing aseptic meningitis, so it is possible unless there are no articles to prove it. Win-Rho comes with its own set of side effects.

I wouldn't say that you can use Win-Rho in place of IVIG. You could try Win-Rho as another treatment option. It works completely different than IVIG and it may or may not work like any other treatment.

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9 years 8 months ago #54349 by Rob16
Sorry, I wasn't clear, Sandi, but you effectively answered my question anyway. Thank you.

By "in place of IVIG" I meant as a rescue treatment. In other words, "Can someone, who previously has had aseptic meningitis as a reaction to IVIG, use WinRho instead as a rescue treatment without necessarily risking aseptic meningitis?"

onlinelibrary.wiley.com/doi/10.1111/fcp.12198/abstract
Fundamental & Clinical Pharmacology Early View Article first published online: 6 APR 2016
Comparison between IV immune globulin (IVIG) and anti-D globulin for treatment of immune thrombocytopenia: a randomized open-label study
"Anti-D caused a quicker response on the 3rd day of treatment (P < 0.001). Both drugs caused a significant rise in number of platelets on the 7th and the 14th day of treatment. Compared to IVIG, except a significant drop in hemoglobin concentration (P < 0.001), anti-D had lower rate of side effects including fever (P < 0.05), allergy (P < 0.01), and headache (P < 0.001). [Our results showed that anti-D was associated with rapid rise of platelets compared to IVIG. In addition, anti-D treatment had acceptable safety profile."

It is my opinion that someone who has had aseptic meningitis from IVIG should discuss with their hematologist, in advance, the option of using WinRho instead the next time they need rescue treatment. Especially if one is using "watchful waiting", one should know their strategy for quickly raising platelets if severe symptoms appear, and not wait for an emergency to decide.

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  • Sandi
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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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9 years 8 months ago #54351 by Sandi
Win-Rho usually isn't used as a rescue treatment. It takes a bit longer to work, peak is an average of 7 days. Doctors seem hesitant to use Win-Rho these days since the black box warning came out. How much that has all changed. I thought it was the easiest thing when I had it. Five minute IV push during my lunch hour, then back to work. Now it's an hour long IV and patients are monitored for hours.

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9 years 8 months ago #54353 by Rob16
IVIG and Rituxan also carry black box warnings, and are widely used anyway. I do not have any way to assess the relative risks of IVIG and Rituxan compared to WinRho (or for that matter, to Dapsone). Do you? Some things apparently are okay to use despite the black box. Others are not okay because of the black box.

The new 2016 study I posted earlier shows anti-D actually works faster than IVIG.

A previous study from 2011 speaks of equal response at 24 hrs.:

www.ncbi.nlm.nih.gov/pubmed/21516022
Standard-dose intravenous anti-D immunoglobulin versus intravenous immunoglobulin in the treatment of newly diagnosed childhood primary immune thrombocytopenia.
Abstract
BACKGROUND:
We conducted a study to evaluate the efficacy of intravenous (IV) anti-D against IV immunoglobulin (IVIG) in newly diagnosed immune thrombocytopenia (ITP) in children and to identify the clinical characteristics of the children most likely to benefit from one or the other treatment.
PROCEDURE:
Children (6 mo to 14 y) with newly diagnosed ITP and a platelet count <20,000/μL were treated either with a single bolus dose of 50 μg/kg IV anti-D or with 0.8 to 1 g/kg IVIG in a randomized manner.
RESULTS:
Twenty-five patients, mean age of 6.8 years, were treated either with IV anti-D (n=10) or with IVIG (n=15). Both drugs were equally efficient in raising the platelet count above 20,000/μL at 24 hours posttreatment. Children who presented with bleeding stage 1 or 2 (no mucosal bleeding) responded better to IVIG treatment, in terms of an increase in platelet count at 24 hours posttreatment (P=0.04). Hemoglobin drop was greater in the anti-D group (P=0.002).
CONCLUSIONS:
A single bolus dose of 50 μg/kg of IV anti-D is a safe and effective first-line treatment in newly diagnosed ITP in childhood and mucosal bleeding is a poor prognostic factor for treatment with IVIG.

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  • Sandi
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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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9 years 8 months ago #54355 by Sandi
I don't know, Rob. I know that all three have black box warnings. All I know is that Win-Rho seems to have pretty much disappeared as an option. It's rarely mentioned. Years ago, it was a very popular treatment and has dwindled down to nothing. Doctors just aren't using it very often.

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  • Sandi
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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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9 years 8 months ago #54356 by Sandi
You know, Win-Rho started to fall out of favor after Rituxan and the TPO's were created and started to be used more often. I guess there are better options now, although Win-Rho worked great for some people. If it had worked for me, I would have preferred it over everything else.
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9 years 8 months ago #54357 by tamar
I had WinRho as a rescue treatment in 2007. My platelet count was at 3K (or 6K depending on which run through the machine counts) and so I stayed at the clinic for WinRho. The next day count was 31K, the following day I think it was at 100K.

But then again, I WAS the WinRho poster child for many years....
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9 years 8 months ago #54358 by Rob16
Tamar: ...and judging by your avatar I would guess you were a pretty poster child!

Sandi: It seems doctors are afraid to have too many arrows in their quiver. When their favorite meds don't work, then it's splenectomy time, rather than look at older drugs. I am corresponding with a young man for whom Rituxan and Promacta don't work, and IVIG gives him aseptic meningitis. His doctor is pushing splenectomy, but I think watch and wait is a good option for him, especially since he never has had any bleeding symptoms more than petechiae and bruising. I am suggesting to him that he discuss this with his doctor along with the possibility of using WinRho instead of IVIG if he becomes symptomatic. Ellen will have the same conversation with her doctor, as she also had aseptic meningitis with IVIG.

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  • Melinda
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9 years 8 months ago #54359 by Melinda
I used to tell Tamar I was the real WinRho poster child since it took only 1 IV to put me in "remission" - but she really is the poster child for it.

I wouldn't have a push - that is putting too much of a foreign substance into ones body too quickly and to me that is not good for the body to have to deal with.

I hope the young man you are corresponding with Rob does well! If I did get aseptic meningitis from IVIg I'd not want to have it [IVIg or aseptic meningitis] again.

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  • Sandi
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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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9 years 8 months ago #54360 by Sandi
It can't hurt to give it a try. The risk is rare, although serious. I think I remember two people over the years having intravascular hemolysis and it hit pretty quickly. Hopefully he will be monitored as suggested.

Tamar and Melinda, you two can fight over the title for Poster Child. You both had great results.

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9 years 8 months ago #54363 by Winnifred
Thought I would chime in on this one as I just happen to have some (ok lots) experience with both.

I can not use IVIG any more because of getting aseptic meningitis. Over the years I have had a doctor or two tell me that is a typical side effect. My new doctor agrees 100% that is not a typical side effect and I should never use that treatment again. It was my rescue treatment when I was first diagnosed because I responded so well.

My old doctor than switched me to Winrho/ Anti-D/ Rhogam 3000mcg.

It has been my rescue treatment ever since. I normally see result within 24 and counts almost back to normal within 48hrs. I haven't had aseptic meningitis since. My only major side effect is hematuria which usually starts about 6-12hrs after treatment and subsides with in 24hrs.

So my answer is yes even after having aseptic meningitis with IVIG I can have Rhogam.

PS: The treatment center I go to does not follow the new black box warning. In and out in under 2hrs or less.
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  • Sandi
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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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9 years 8 months ago #54364 by Sandi
It works quicker than I thought. I don't know why it isn't used more often then.

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9 years 8 months ago #54367 by tamar
It isn't used more often because of the black box warning. It's very expensive to monitor someone for 8 hours. I think I'd probably need to be below 15K for a week or longer before I'd consider wasting a day to get it, and who knows what insurance would cover at this point (I have had 4, maybe 5 different insurance plans since the last time I had WinRho in 2007).

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  • Sandi
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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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9 years 8 months ago #54368 by Sandi
I know but as we discussed above, Rituxan and IVIG also have black box warnings and take a long time to infuse. They come pretty close to the eight hours, Rituxan a little shorter and IVIG maybe even longer.

I don't know.

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