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TOPIC: Rituximab

Rituximab 5 months 2 weeks ago #65936

  • Hal9000
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Lman, difficult situation. Getting counts done every two months makes it hard to know when counts are getting low.
So, I mentioned to you 'jayinchicago'. The way he did it wasn't common. Most folks take Romiplostim/Promacta for a year, two years, three years, or more, before realizing they can taper off the dose and counts stay up on there own.

Perhaps something in between the two extremes is best for you. Maybe come up with a strategy which meets your constraints on tests, low count precautions, and budget. Talk it over with your doctor.

I would say. If you do the same shot and test schedule for awhile maybe you'll eventually get the same number on every test and give you confidence to experiment with variations. Give it some time, Romiplostim may end up being the ticket.
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Rituximab 4 months 3 days ago #66337

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Ladies and gentleman ,
recently I've had some issues . I've had some slight nosebleeds . I tried to ignore them ! counts have been good ever since I've been on Nplate . Good news is that Currently I have full coverage of Nplate costs , so I'm on regular one week shot .
I postpone checking my counts as much as I can , Anyway , tests and the following stress makes me (and probably you nervous ! ).
Tonight , something strange happened ! I have had some light blood in my stool . I told my self "Oh man , It's over ! Romiplostim has stopped working for you (like for some people here , Anne as an example ) And since Promacta is not available in your region , options will be so limited !
Then I went to ER and they checked my blood . it was 115 k ! Like you , I was wondering as hell !
Now , Why did those nosebleeds happened ? Where did those blood in my stool came from ?
The ER doctor told me It might be Hemorrhoid , So meet a Surgeon (I hate Surgeons !! ) to check that . To be honest , beside my bleeding in stomach happened last year , I havn't had serious issues with my stomach.
So , The question remains there : Where did those bloods come from ?

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Rituximab 4 months 2 days ago #66339

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I don't know about the blood in stool--may be a good idea to get that tested out with one of those stool test kits.
But I am kind of an expert on nosebleeds, alas--and not slight ones either. Usually I have nosebleeds when my counts are very low, but I have had them when my counts are "safe." My hematologist claimed that the problem was with my nose, but my head-and-neck guy said it was probably both platelets and nose responsible, and I believe him. My nose care routine: Keep nose moist. I find vaseline too heavy, so I usually use a Pharmaca product called Aquagel. I used to use q-tips to apply it, but sometimes would trigger bleeds with the q-tips, so I usually just apply the gel (or vaseline) in the lower part of my nostrils and, using a warm wet washcloth over my nose--or a steamer--sniff it up. The usual nosesprays are saline, which can dry out nostrils. I use one that has aloe as well as saline solution. If you live in a dry climate, you might try a humidifier, esp. at night. When I DO get a nosebleed, I get in to see the head-and-neck folks (they used to be called ears, nose, and throat folks at Kaiser) as soon as possible, and if the doc can see where the bleed started, he/she cauterizes it. Electrical cauterization is more uncomfortable than chemical cauterization, but the benefits seem to last longer.
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Rituximab 3 months 4 weeks ago #66359

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A problem with ITP is that tend to be a very paranoic illness. Yes, all our symptoms are related to ITP. A headache? a brain hemorragy. Nosebleeding always due to ITP (even if we poke our nose like crazy). An hematoma, well cos of ITP (no matter if we hit our leg against the concrete). Coitus interruptus.... well this one as well is due to ITP......
Maybe ITP is most of the time out of the equation and we prefer it is part of the equation anyways...;(
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Rituximab 3 months 4 weeks ago #66368

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haha Yes Groucho that is true. The way it starts off - initial symptoms, tests and the response of doctors as well as possible multiple hospitalizations - I think play a part in the anxiety. And I think bleeding in general (combined with the unknown) has a worrisome effect on humans. I think it takes a lot of time for one to adjust to having ITP.
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Rituximab 3 months 3 weeks ago #66389

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Yeah . Lol :)
I think it was a side effect of azithromycin , as I was taking it for my common cold . in the brochure inside the box , it had mentioned that diarrhea and blood in stool are possible side effects .
Im doing well afterward , and soon or late I will kick a** of this itp =)

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Rituximab 3 months 3 weeks ago #66393

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Why would you take Azithromycin for a common cold?
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Rituximab 3 months 3 weeks ago #66394

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Oh Anne , I might have mistaken . It was amoxicillin
doctor prescribed it for me .

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Rituximab 3 months 3 weeks ago #66397

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Whatever it was taking antibiotics for a common cold is not really a good idea as it is a virus not a bacterial infection.
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Rituximab 3 months 3 weeks ago #66398

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You are right Anne .
In fact I asked the doctor : "isn't it that you should prescribe antibiotics only if there is bacterial infection ? Then why every time when I have visited you for a common cold , You gave me antibiotics ? "
She replied : It's right , But we believe even if it's viral infection , Bacterial infection might come with it and that's why we do so .
For the previous time , She looked at my mouth and told me it's infected (I think she meant bacterial infection ) , But , any other time any other doctor , I have got antibiotics for a cold . That may not be good , I know , because of side effects of antibiotics or resistance to them , but almost always , those antibiotics had helped me overcome the disease and feel better .
By the way , it's really ironic how a simple cold can turn into a serious blood disorder . I remember a month before I saw itp symptoms , I had a cold (and again , had got antibiotics for it ) . I know there might be a strong relation between that and my itp :(

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Rituximab 3 months 3 weeks ago #66401

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I'm also amazed that you go to the doctor with a cold, unless of course you have other health things going on.
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Rituximab 3 months 3 weeks ago #66405

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I'm with everyone else - why an antibiotic for a common cold - I would refuse [and I'm supposed to get with the doc anytime I have an infection because I have a low Immunoglobulin G]. Antibiotics are for bacterial infections - taking them when not needed can cause problems!!

Amoxicillin never made my platelet count go up but it did cause me to have serum sickness & it was taken for a bacterial infection and now I can never have a penicillin again.

Be careful!!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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Rituximab 3 months 3 weeks ago #66406

  • mrsb04
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LMan
Very irresponsible prescribing in my opinion, antibiotic over use is dangerous.
Maybe your doctor should read this journals.sagepub.com/doi/full/10.1177/2042098614554919

Over here in the UK our NICE (National Institute for Health and Care Excellence) states
"Reassure the person or carer that although symptoms may be distressing, the common cold is self-limiting and complications are rare.
The natural history of the common cold is rapid onset, with symptoms peaking after 2–3 days, and typically resolving after 7 days in adults and 14 days in younger children, although a mild cough may persist for 3 weeks.
No treatments are available that can cure the common cold and most treatments are not effective at relieving symptoms.
Explain that symptom relief and rest are the most appropriate management.
Advise people that: Antibiotics and antihistamines are ineffective and may cause adverse effects.
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Rituximab 3 months 2 weeks ago #66481

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JJ-
I didn't get what you meant :D
Anne-
Thanks . I know You're right , but antibiotics had always helped me feel better and I felt I'm getting better after that . I remember getting penicilin shot couple of times a year for cold , And my parents always telling me (as a kid) I'f you don't go doctor and get the shot , infection may spread to your heart !! or your lungs ( I know both is possible)
Anyway , Right know that we have low platelets , and cold potentially drops them more , You still think we shall not use antibiotics to resolve cold faster ?

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Rituximab 3 months 2 weeks ago #66482

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Yes I do Lman.
Antibiotic misuse is downright irresponsible and dangerous. A cold is a virus so giving an antibiotic is pointless. Any response to the common cold from antibiotics is a placebo effect.
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Rituximab 2 months 4 weeks ago #66569

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Today my count was 172k , a week after my last shot. What shall I do ? Previous count was 115k a month ago and 96k 2 months ago . Shall I shoot today ? Im currently on 8-9 days schedule of dose 3 .
By the way , I sometimes see some blisters in my mouth , so Im really afraid to try tapering it .
Thanks fellas ❤

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Rituximab 2 months 4 weeks ago #66570

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If I understand the situation. Don't the Nplate dosing rules call for a higher count before skipping a dose? 200, 300, or 400, something like that?

Just off hand, seems like the blister situation has to disappear before tapering down.

Nice. Counts going up for sure.
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Rituximab 2 months 4 weeks ago #66571

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Yeah You're right :(
I read European guidelines again and even they mention 250k :(
Lol , Lather , rinse and Crash ? :)
If what you say works out Hal (That I get rid of this so peacefully) I'll send you couple of Pizza's ASAP :B
So I'll shoot again and wait for summer up to the time when my Exams are finished .

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Rituximab 2 months 4 weeks ago #66585

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That 172 was a pretty good increase. Do you happen to recall how long ago the last blisters were? Less than a month?
Once upon a time I used to work at a Pizza place. Good stuff. I'm guessing you are partial to it as well.
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Rituximab 2 months 4 weeks ago #66590

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Now I just Googled blood blister in mouth to see if what I see was a blood blister ? It wasn't any visible blood in my mouth however , It was a red dot (didn't have any volume , but had area . lol :) ) , and happened couple of days ago before I get the test . They were presented for 2-3 days .

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Rituximab 2 months 4 weeks ago #66594

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I dunno about blisters. Maybe something to keep track of. I think if one eats hot food, and burn your mouth, it look like that. So the question becomes, LOL, did you burn your mouth on scalding hot pizza a couple days before the test?
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Rituximab 2 months 4 weeks ago #66595

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I know what You mean , While having low platelets , I found that burning my mouth leaves more visible symptoms than it used to do (Or it is also possible that after dealing with itp , I watch my mouth too often) . But , about those points in my mouth , Couple of days ago I had eaten some kind of food with red color and I was suspected to that .
But now , I think I must have couple of other Shots to see how things go on ?
And , If it really works out Hal , couple of "scalding hot pizzas " will be waiting for you :)
So , while being suspicious , and while have not been stable on a high count , and while living alone (so if I need help , it will be hard to find some :( ) I think it is wise to try to forget about platelets and stick to my exams . Next month I'll give another test to see how is "evil invader" doing ?

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Rituximab 1 month 3 weeks ago #66875

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It’s incredible how different doctors approaches can be. My Hematologist wants me to get a splenectomy because I’m not responding to my Rituxian treatments. I just finished my third treatment and I have one more to go next week. My platelet counts jumped from 127, 122 and now 78. My hematologist is standoffish about putting me on promacta because I’m only 32 years old.

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Rituximab 1 month 3 weeks ago #66877

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If that were my haematologist I would be getting a new one.
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Rituximab 1 month 3 weeks ago #66880

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mrsb I love how you say what is on your mind! !

I know really nothing about Rituxan because I've never had it and (knock on wood) will not need it. However from my little knowledge I understand that a response to Rituxan doesn't happen immediately so after 3 treatments can it be said that it isn't working?
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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Rituximab 1 month 3 days ago #67025

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soco87-
I agree with Anne. If you have access to TPO's, get rid of your hemo and find a new one, as what I did.
Fellas, I was 125k tday. not so bad !
I have seen bunch of platelet count vs months diagram for over a year for many people who reached remission.
Almost all, showed counts greater than 250k. But many, had maintained counts betveen 100-200 for many months before they jump on the skies! My question, is that since I only have accessed plt counts of people who successfully discontinued Nplate, is counts like mine an indicator that later (say, up to a year) I can do so ?!
Im on dose 3 as usual and shoot every 8 dayz or so.
Thanks.

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Rituximab 4 weeks 2 hours ago #67104

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Lman there is no way of knowing whether you will get into remission or not. When I had counts like yours, of 125, I dropped the dose to see what happened. I would use the lowest dose possible to keep my counts around 50. Eventually I missed a dose altogether and then missed a couple and eventually stopped altogether. I needed to use it again last year (count of 1) but only for 8 weeks or so and then stopped.
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Rituximab 3 weeks 6 days ago #67110

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Thanks JJ ! That's what I wanted to hear ! I'm currently on summer break time and living with my family, so I have more confidence to try reducing my dose. So, you believe that this time I should reduce the dose ? How much do you think I shall reduce ? .25 mcg/kg ? or .5 or 1? (I administer it myself).
And then going on weekly tests to remain around 50?
My previous counts (each with 45 days between them) : 95 115 172 125
Thanks a lot !

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Rituximab 3 weeks 4 days ago #67129

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I wouldn't like to advise anyone else but I stuck to the dosing based on my weight and I had got up to the 5th level dose before the platelet count went over 100 so I dropped to the 4th level dose then a bit later to the 3rd level and so on as my count got higher again.

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Rituximab 5 days 9 hours ago #67266

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Something bad happened.
I had some bleeding in my stomach after a year. After bleeding was diagnosed counts was 10k. I think in every round of Nplate, they is couple day when I'm low, and this time I was just unlucky (had spicy snack when I was low :( so I JUST hope I'm able to continue my current weekly Nplate on dose 3 and nothing else is not going to be added.
I have received 10 units of random doner platelet along with 50g Ivig in one day plus 1 gram of methyl prednisone in a day . I had also shot Nplate couple of day ago (I'm not going to skip any dose of it).
I was holding really good on Nplate but I cannot deny there was time when I had symptoms.
2 pack of complete donor blood and 10 more random doner platelets are coming. They say my Hb is at 10.

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