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First Dose of Rituxin Down

D.Mann
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Diagnosed October 2016 Steroids, IVIG, Rituxin, Promacta, Spleen removed, Rituxin again. Currently weaning off Promacta and Prednisone.

8 years 9 months ago #57111 by D.Mann

First Dose of Rituxin Down was created by D.Mann

Well first dose of Rituxin is done. From stick to Band-Aid was about 6 hours. I only had a slight reaction, a little throat itching and leg soreness. Some extra Benadryl and a dose of Dex and all was good.

Count this morning down to 25 from 32 last week. Cutting Prednisone from 5mg daily to every other day. Glad to be close to finished with that stuff. Only minor issues with it but really didn't like the daily reminder every morning.

Next Thursday will be Rituxin 2.0.

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

8 years 9 months ago #57112 by Sandi

Replied by Sandi on topic First Dose of Rituxin Down

I'm glad that it's over and that it went well. Good luck!

Barb111
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8 years 9 months ago #57113 by Barb111

Replied by Barb111 on topic First Dose of Rituxin Down

So glad to hear. I had the itching also. Stopped for extra meds and started up again. No problems the next three. Hope you are as lucky.

Hal9000
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Give me all your platelets and nobody gets hurt

8 years 9 months ago #57125 by Hal9000

Replied by Hal9000 on topic First Dose of Rituxin Down

Ok, average response is throat itching. Hmmm, wonder what is going on with that.

Can anyone comment. Did anyone's doctor recommend staying away from crowded public places for awhile? Or anything like that. This is flu season - I seem to be recovering from a mild case now. Likely will be starting Rituxan next week.

ITP Types and Treatments by HAL

Barb111
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8 years 9 months ago #57128 by Barb111

Replied by Barb111 on topic First Dose of Rituxin Down

I had that discussion with my doctor since I work in pediatrics at a hospital. He said that Rituxan only causes minimal immune system compromise. He said just take typical precautions. wash hands, etc. Don't deliberately kiss a sick person. His words!! I even asked about my sushi addiction. He said if I eat in an establishment that is clean and trustworthy. ie. never made me sick before, go for it. I am around sick kids ALL day and I am doing well. I am due for my Tdap immunization and he said about 4 months would be good to wait. The shingles one is the only one not to get.

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

8 years 9 months ago #57133 by Sandi

Replied by Sandi on topic First Dose of Rituxin Down

I wasn't given any instructions to take extra precautions. I just used the common sense rules of washing hands often and staying away from sick people as much as possible. If you are otherwise healthy with a spleen and on no other immunosuppressants, you should be okay. Of course you can get sick if you come into contact with germs, but that is true even without Rituxan.

D.Mann
Topic Author
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Diagnosed October 2016 Steroids, IVIG, Rituxin, Promacta, Spleen removed, Rituxin again. Currently weaning off Promacta and Prednisone.

8 years 9 months ago #57141 by D.Mann

Replied by D.Mann on topic First Dose of Rituxin Down

The told me my reaction while mild was normal. Itching is the most common reaction. The IV Benydril stopped it in seconds. I was not given any special instructions for the following days. Just show up for round 2 next week.

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

8 years 9 months ago #57147 by Sandi

Replied by Sandi on topic First Dose of Rituxin Down

I had the scratchy throat thing during the third infusion and didn't even relate it. It got worse and I started coughing and still didn't relate it as a side effect. I kept drinking water and it went away. I was very naive back then.

D.Mann
Topic Author
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Diagnosed October 2016 Steroids, IVIG, Rituxin, Promacta, Spleen removed, Rituxin again. Currently weaning off Promacta and Prednisone.

8 years 9 months ago #57148 by D.Mann

Replied by D.Mann on topic First Dose of Rituxin Down

My nurse actually mentioned it to watch for. She said if you feel anything different say something. The faster we know the easier it is to stop.

Hal9000
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Give me all your platelets and nobody gets hurt

8 years 9 months ago #57165 by Hal9000

Replied by Hal9000 on topic First Dose of Rituxin Down

I tried to do a little research on this 'itchy throat' thing. Apparently this is your immune systems response (cytokines?) to a minute amount of mouse debris in the drug.

I guess one's system has not seen that before and is trying to mount an immune response/defense. Apparently if one can't mount a defense, a cytokine storm develops and additional symptoms surface. If one can get some antibodies going to attack the mouse debris then it goes away.

Makes me wonder if a little Vit D before hand might help.

LOL, you've never been naive Sandi and you can't prove that you have.

ITP Types and Treatments by HAL

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

8 years 9 months ago #57170 by Sandi

Replied by Sandi on topic First Dose of Rituxin Down

Oh, believe me, I was when ITP first began in 1998. I was in my early 30's and didn't have a computer yet. I also didn't understand the damage that medications could do. It took a few hard knocks to really understand that one. And, I believed that doctors were always right. Got screwed a few times there too. Yep. I was naive.

D.Mann
Topic Author
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Diagnosed October 2016 Steroids, IVIG, Rituxin, Promacta, Spleen removed, Rituxin again. Currently weaning off Promacta and Prednisone.

8 years 9 months ago #57232 by D.Mann

Replied by D.Mann on topic First Dose of Rituxin Down

Second dose is down. No reaction at all this time. It seems I have had a very easy time with Rituxan.
On the bad side my count is down to 20. I am increasing my prednisone which sucks.

Hal9000
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Give me all your platelets and nobody gets hurt

8 years 9 months ago #57241 by Hal9000

Replied by Hal9000 on topic First Dose of Rituxin Down

Yea, from what I have read, lower counts is one of the bad temporary side effects. How low and how long, I have no idea. Probably case by case dependent.

Have to wonder if that is one of the motivating reasons behind combining Rituxan with Dex pulses. Then in Barbs case, doc put her on prednisone all/most of the way through Rituxan treatments.

Half way home, heh ?

ITP Types and Treatments by HAL

Barb111
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8 years 9 months ago #57243 by Barb111

Replied by Barb111 on topic First Dose of Rituxin Down

Hey, guys. I am about 8 weeks out from the first Rituxan infusion. Prednisone down to 6.25 from 60. No withdrawal symptoms. Counts up to 130. A steady climb each week so far.

Hal9000
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Give me all your platelets and nobody gets hurt

8 years 9 months ago - 8 years 9 months ago #57246 by Hal9000

Replied by Hal9000 on topic First Dose of Rituxin Down

Fantastic Barb. I don't see a 'high-five' emoticon. High-five's none the less.

What is it like to see a future which includes platelets

More outdoor stuff? Get strenuous chores done?

ITP Types and Treatments by HAL

Barb111
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8 years 9 months ago #57247 by Barb111

Replied by Barb111 on topic First Dose of Rituxin Down

Thanks! Have you got your approval yet for the Rituxan?

Hal9000
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Give me all your platelets and nobody gets hurt

8 years 9 months ago - 8 years 9 months ago #57248 by Hal9000

Replied by Hal9000 on topic First Dose of Rituxin Down

Blah, nothing yet on the insurance approval. Have to wonder if they are delaying so as to get next year's deductible out of me.

I was looking through the medical statements today. The insurance company paid about $13,000 for my IVIG treatments last month...

ITP Types and Treatments by HAL

Barb111
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8 years 9 months ago #57249 by Barb111

Replied by Barb111 on topic First Dose of Rituxin Down

Are you in the US? Typically doesn't take more than a few days to get a prior authorization.

Hal9000
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Give me all your platelets and nobody gets hurt

8 years 9 months ago #57254 by Hal9000

Replied by Hal9000 on topic First Dose of Rituxin Down

Yea, I think. LOL, does Texas count? When I talked with the doc (almost two weeks ago) she sounded like it would be a few days - and that is why I expected to start this past week.

How can they deny Rituxan to someone with a typical base count of 12 to 18

Doctor does seem like a good advocate. For all I know, she is arguing with them over putting me on Prednisone for a month or two to see if I remit. All I've had is one Dex pulse - which did almost nothing to my counts.

ITP Types and Treatments by HAL

Barb111
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8 years 9 months ago - 8 years 9 months ago #57264 by Barb111

Replied by Barb111 on topic First Dose of Rituxin Down

I too have questions about Texas! The Dex should count as a first line attempt. With most insurances, you can google their prior auth requirements. If I put in RI Tufts Rituxan Prior Auth, all the necessary requirements, etc come up.

tuftshealthplan.com/documents/providers/guidelines/pharmacy-medical-necessity-guidelines/rituxan

D.Mann
Topic Author
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Diagnosed October 2016 Steroids, IVIG, Rituxin, Promacta, Spleen removed, Rituxin again. Currently weaning off Promacta and Prednisone.

8 years 9 months ago #57269 by D.Mann

Replied by D.Mann on topic First Dose of Rituxin Down

Hal,
I am in Texas as well. I have Blue Cross Blue Shield insurance. I called BC myself and after climbing the chain 3or 4 levels I was given a number for my doc to call for authorization on the phone. Gave the number to the doc and they did approve. Surprised me, I had meet my out of pocket max for this year and thought they might drag it out till I would have to start over in 2017.

Hal9000
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Give me all your platelets and nobody gets hurt

8 years 9 months ago - 8 years 9 months ago #57281 by Hal9000

Replied by Hal9000 on topic First Dose of Rituxin Down

barb, thanks for that. I think I saw a requirement flow chart of ITP treatments by my insurance company at some point. Yes, as I recall both Dex and IVIG qualify as first line treatment. I'm pretty sure they are just stalling to put a treatment or two into next year.

d mann, yea, I should complain but it's already too late. Not enough weeks left in December. They are going to succeed in pushing some of the cost into next year. The IVIG I had last month ended up taking too long, LOL, my response was too good.

...I'm going to guess approval will happen this coming week.

ITP Types and Treatments by HAL

D.Mann
Topic Author
Offline
Diagnosed October 2016 Steroids, IVIG, Rituxin, Promacta, Spleen removed, Rituxin again. Currently weaning off Promacta and Prednisone.

8 years 9 months ago #57350 by D.Mann

Replied by D.Mann on topic First Dose of Rituxin Down

Well I'm kinda bummed. Hooked up to my Rituxan dose 3 right now. My labs came back and I am down to 10 today. This stuff needs to get busy. No time for hospitals the next few weeks.

mrsb04
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ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.

8 years 9 months ago #57356 by mrsb04

Replied by mrsb04 on topic First Dose of Rituxin Down

My understanding is response time can be up to several weeks post the last infusion.
What dose are you on?

Barb111
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8 years 9 months ago #57357 by Barb111

Replied by Barb111 on topic First Dose of Rituxin Down

Yes, 9-12 weeks.

D.Mann
Topic Author
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Diagnosed October 2016 Steroids, IVIG, Rituxin, Promacta, Spleen removed, Rituxin again. Currently weaning off Promacta and Prednisone.

8 years 9 months ago #57363 by D.Mann

Replied by D.Mann on topic First Dose of Rituxin Down

I am getting 757mg per dose. I am also on 5mg of prednisone.

Hal9000
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Give me all your platelets and nobody gets hurt

8 years 9 months ago #57373 by Hal9000

Replied by Hal9000 on topic First Dose of Rituxin Down

I am surprised your doc hasn't bumped up the Prednisone. Have you been ok at this level before?

ITP Types and Treatments by HAL

D.Mann
Topic Author
Offline
Diagnosed October 2016 Steroids, IVIG, Rituxin, Promacta, Spleen removed, Rituxin again. Currently weaning off Promacta and Prednisone.

8 years 9 months ago #57381 by D.Mann

Replied by D.Mann on topic First Dose of Rituxin Down

Hal
The only time I've been this low was when I was admitted to the hospital and diagnosed. I am a little frustrated with the doc right now. I do see him next week prior to my last infusion. I guess he will prescribe something then if I keep falling. My concern is how low I could be after another week. I hope that I will picking up by then but no way to know right now. I certainly don't want another hospital stay and transfusion if avoidable.

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

8 years 9 months ago #57399 by Sandi

Replied by Sandi on topic First Dose of Rituxin Down

How are your symptoms? Just keep an eye on that.

I know that I've posted this before, but my counts during Rituxan were like this:

8k, 11k, 3k, 150k. The 150k was the day of my last infusion. I wasn't hospitalized and just kept doing normal things. I know it's scary, but focus on the symptoms.

Robert1959
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8 years 9 months ago #57409 by Robert1959

Replied by Robert1959 on topic First Dose of Rituxin Down

I was given 700ml of Rituxan and was also on 100mg of prednisone at the time with the first 2 transfusions given while I was in hospital and the last 2 as an outpatient.

My counts went 4k, 8k, 4k and then 0. I was then re-admitted for the 4-day dex pulse which also had no effect. I didn't know better at the time (largely because I wasn't aware of this support group) but in hindsight I think that my whole ITP experience could have been handled as an outpatient.

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