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TOPIC: Rituximab

Rituximab 1 year 3 months ago #63335

  • Lman
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Hi there
I was diagnosed with ITP (22,M) . Almost two month ago (And I have had the insidious onset ... inf fact I'd better say it started 3 month ago ) Now , As most of adults steroids did not do well (Also the're currently keeping me alive ! ) I'm on 25mg daily and I'm really on the edge ! Last 3 counts were (11 , 13 , 13 ).
Today , I had my 3rd rituxan round and doc told me : 1-we will have next infusion next week (despite of the answer )
2-we (probably he , not me ... :) ) will consider splenectomy next week if you fail to reach 30 by next week (What's my fault ?!! :| )
So I want you to share your stories about rituxan . how did it change your counts and how long did it take ? how long did you wait to see if it works or not (and if it is considered as "NO RESPONSE" , how much did you wait before trying the next step ? )
I've read in articles we should wait 6-8 weeks (a study mentioned the "average" time to respond was 5.5 weeks ) . My doc is moving sooo fast as I see ...
And , splenectomy must not be considered before 6 month . isn't it ?!
And personally , I think hematologists agree with "THE PEACE IS THEIRS THAT LIFT THEIR SWORDS!"
Thanx

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Rituximab 1 year 3 months ago #63336

  • dru
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  • I developed hemolytic anemia in 1999 and ITP in 2005. Treatments have been splenectomy, prednisone, IVIG, and Rituxan.
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Everyone is different but some people don’t respond to Rituxan for 6-8 weeks. It seems too early now to say it won’t have an effect.
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Rituximab 1 year 3 months ago #63337

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Very old fashioned mentioning splenectomy this early on.
It can take a few weeks for Rituximab to work. There are plenty more medical options open to you if it doesn't.
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Rituximab 1 year 3 months ago #63338

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Yep, I agree with the previous responses. For some people Rituxan can take some time and it sounds like you
need a new doctor. Rushing into a splenectomy after only trying steroids and Rituxan is not consistent with
modern treatment methods. I hope you have other hematologists available in your area. Maybe you can stay
with the current one just to finish off the 4th Rituxan infusion and then be shopping around for a new one.
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Rituximab 1 year 3 months ago #63339

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Hi Lman--
Rituxin gave me a partial response, meaning my counts came up to about 25 for 6 months. I was able to taper off of prednisone. I had 3 good hematologists who all talked about splenectomy as the second or third treatment. I thought my first hemo was joking when he suggested taking out a perfectly healthy spleen just to block the exit. Nine years later: I still have my spleen- yay! I have had to defend it many times. Are you having bleeding issues? I have had very low counts many times, below 5 and since I don't have bleeding I wouldn't worry about a count of 13. But everyone is different. As others have said, I would never part with my spleen in the first year. Many people go into remission, you have to give your body some time to see what its going to do. And there are other treatments that are much easier to live with than steroids. I went from Rituxin to a pill, Promacta. Then went on to an injection, Nplate- my favorite ITP drug so far. These two drugs (the TPOs) were designed especially for ITP. They work well and many people have little to no side effects- plus a number of people even go into remission on them. good luck! Hope the Rituxin kicks in, gotta give it time!
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Rituximab 1 year 3 months ago #63387

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Is it ok that I was given Rituximab only 5 weeks after my diagnosis ? (I was diagnosed 2 month ago)
In most articles I see people are given rituxmiab much more later than that .
And I'm 13k yet :( Going to have the 4th shot
Dr Stasi had mentioned it might take 21-56 days for people to respond to it . but my doctor said "If you're going to respond , YOU SHALL GET AT LEAST 30K BY NEXT WEEK"
If He's sure I'm not going to respond , why Is he going to give me the 4th infusion ?
And I Had read being young and being given this drug early and even having fewer previous treatments , might increase your chance (Has not yet increased mine ?! )
By the way , I'm currently on 25mg pred. I have had 7k and 11k with that . Is there any hope for 3 consecutive 13 ?!
I do not have any "Sign" in my mouth and only have couple of minor bruising in my legs . Also needle stick does not bruise for me (Doctor always checks that ! )
An other question : At the first time I was hospitalized , with the count of 6 , I also had cold and I was given antibiotics which I NEVER USED ! (sometimes I think I still might have cold !? ) And also Doctor wrote "Post viral ITP" in hospital's log . If that is true , Do I have chance to remit as children do (they get it usually after a viral infection ) shall I visit another doctor to see If I still need to take antibiotics ? And does using Rituxan weakens my body against that probable virus ? (I almost do not have any cold or flu like symptoms right now )
Thanks a lot !

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Rituximab 1 year 3 months ago #63389

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There are no set rules on when to try Rituxan, although 5 weeks is a bit soon. I do not agree with your doctor about when you should respond to it. My counts for each infusion were something like this: 8k, 3k. 11k, 150k. I didn't respond until the fourth week and compared to many others, that was fast. It can take time. Too many doctors rush through treatments and do not actually give them time to work. Patience is needed.

I think you'd know if you still had the cold. You would be stuffy and sneezing. Antibiotics do not help viral infections (like colds), so I see no point to start taking any. Antibiotics are used for bacterial infections. Antibiotics can lower counts too. Yes, there is a chance that you could go into remission (especially if you're treating), but only time will tell. I was diagnosed after a bad cold too but it turned out to be chronic ITP. There is no way to know for sure.
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Rituximab 1 year 3 months ago #63390

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Lman,
If rituxan does not work (it had no impact for me) why not try NPlate or Promacta before permanently losing your spleen? My doctor also did prednisone and then Rituxan. I do not think the order of trying options matters so much. Good luck.
Emily
Diagnosed Jan 2015 at age 50 with 13,000.
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Rituximab 1 year 3 months ago #63393

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Yeah I know , antibiotics will not work against viruses . And my doctor said if it was post viral it should had been resolved by 6 weeks . How ever I know a friend of my uncle who was older than me and his disease was resolved within six month (and has not relapsed after 10 years) . I think doctors underestimate spontaneous remission rate .
Any way , you are the moderator and know many patients . They say in adults , they do not know why ITP happens , maybe a virus or an unknown reason . I am suspected to 3 cases . have you ever heard about these scenarios ?
1-that cold I mentioned before (was not very bad , it was mild)
2-I used to do weightlifting and before that , and I had pain in my spleen or bones in front of it for two weeks , that much hard that I could not breathe and I went to a doctor to check my heart and another to check my lungs . I also gave an ultrasound test for my spleen after my itp diagnosis and they said your spleen is ok
3-This is what Im most suspected about . I was during my exams . one night , I was very stressed because I had 2 exams tomorrow and I have been always a good student , also I had some emotional problems and also I was living alone in my house at that time and away from my parents . my entire course was so hard . I had recently moved to my new house which I was almost alone , before that I was living with my grandma . I also had some emotional issues whole course. But that night was probably the most stressful night I have ever had . And I overworked my self WHOLE course (And I was ranked first that course :) ) . It was such a hard night that I made a video from myself in front of the mirror and talked about issues I had . I had drunk 3 cups of coffees that night , had not slept for an entire 24 hours (which is normal during my exam time ... ) and I clearly remember that I told my self "Man , if you take the 4th cup you're dead" ... by 20 days later , I had one blister in my mouth after I woke which was resolved soon and nothing else happened up to next month that I started bruising . (I do not know if it was because of itp or I had simply bit my tongue while I had slept ? ) .
Is it possible that It is emotional or because of my stresses ? and my situation gets better or resolves if I fix it ?
2nd time of my hospital administration , I was on 25mg steroids and I was alone by that night too ... I was 7k and was bleeding in my sinus and it was very scary , but after that my mom never left me ! and with the same dose I reached 13 . I'm going to meet a psychotherapist to see if it helps or not .
And finally , I had my 4th rituxan Shot , it was surprising that doctor told me we're going to have 6 shots . I think because my lymph count was yet high . But I see at most clinics they have 4 rounds . my doctor said we will have the 5th round by next week , after that we wait a week and if it worked we will have the 6th round .
Sorry if I had any mistake in my English .

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Rituximab 1 year 3 months ago #63394

  • Sandi
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Lman:

Both an illness and chronic stress can play a part in triggering an autoimmune disorder. Resolving either or both may or may not make a difference. I wish I could give you answers, but there are just too many unknowns. All you can do at this point is try to eat healthy and live a good lifestyle. It may or may not improve the ITP, but it can help you feel better all around.

I'm not a fan of anyone having more than four Rituxan infusions. Studies show that less than four can be just as effective so I don't believe that more than four does any good whatsoever. The goal is to target and destroy B cells and that is generally accomplished with 4 treatments. Giving more than that most likely won't do anything. I always believe that less is better and avoiding toxicity when possible is never a bad thing. That is just my opinion.

People with ITP usually have a healthy spleen. The spleen isn't the problem; the problem is that the body destroys platelets too quickly or does not produce enough in the first place. Studies have shown that most people with ITP have both problems.
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Rituximab 1 year 3 months ago #63395

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This study relates to B cell depletion in people with Rheumatoid Arthritis, but it shouldn't take any longer in those with ITP. I don't think the lymphocyte count will show B cell depletion on a CBC, because Rituxan only targets the B cells that have CD-20 markers, meaning that it only depletes B cells in a certain stage of development. My CBC did not show a decrease in lymphocytes during my Rituxan infusions and it worked well for me.

"In RA patients, treatment with Rituxan induced depletion of peripheral B lymphocytes, with the majority of patients demonstrating near complete depletion (CD19 counts below the lower limit of quantification, 20 cells/µl) within 2 weeks after receiving the first dose of Rituxan. The majority of patients showed peripheral B-cell depletion for at least 6 months. A small proportion of patients (~4%) had prolonged peripheral B-cell depletion lasting more than 3 years after a single course of treatment."

www.drugs.com/pro/rituxan.html

Lower dose just as effective for ITP:

"The etiology of ITP remains unknown but its pathogenesis consists of loss of tolerance to platelet antigens. There is a complex dysregulation of the immune system involving both the B cells and the T cells. Splenectomy is the standard second line option in steroid refractory chronic ITP patients. However, costs of surgery and reluctance for surgery in severely thrombocytopenic patients on part of surgeons are major obstacles in resource limited settings. Rituximab has been used in both the standard doses of 375 mg/m2 and low doses of 100 mg/m2 with similar results. We studied the utility of low dose Rituximab (@100 mg/m2 weekly × 4 doses) in resource limited settings. Overall response, complete response (CR) and partial response (PR) rates were 47.6% (10/21), 33.3% (7/21) and 14.3% (3/21) respectively. Median time to response in patients achieving CR was 75 days (range 45–185 days) while in patients achieving PR it was 105 days (range 45–165 days). However, there was no significant difference between males and females achieving CR or PR. We also observed that patients who had earlier responded to any form of treatment were more likely to respond to Rituximab treatment. The cumulative relapse free survival (RFS) at 13 months was 78%. By giving lower dose, six times less than conventional dosing dose, we have been able to demonstrate cost effectiveness in our study population. We were able to administer all the doses in day care without any major adverse events leading to further cost savings on in-patient care."

link.springer.com/article/10.1007%2Fs12288-016-0764-x
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Rituximab 1 year 3 months ago #63436

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One month passed . I know suggestions say you must wait up to 8 weeks , Is it possible that it works suddenly ? (if it is going to work !? ) or it's supposed to work gradually ?
And I asked doctor to postpone 5th infusion and he agreed (still do not understand why he said 6 shots ? Although he is a famous doctor , is it possible that its a clinical trial without my approval ? :| )
And does anybody know is there any predicting factor that whose disease is going to last more and whose not ?
I have read some articles (They talk about onset duration mostly , acute or insidious) , but I'd be appreciated to notify me if you know (me and my spleen are much worried these days :) )
And one more question : My doctor told me that if you enter remission (probably it is supposed to be a durable remission , like couple of years ? ) even if you relapse , your disease will not be this much severe (below 10 :( )
Is it right ?

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Rituximab 1 year 3 months ago #63437

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Yes, it's possible for Rituxan to work suddenly. My counts went from single digits to 150k in a week. No, I don't think your doctor is doing a clinical trial without your approval. There are some doctors who have done eight infusions on their patients just because.

There is no way to predict how long ITP will last. It all depends on what a person finally responds to, and unfortunately, that can take some time for some people. There are a handful who don't respond to anything and in that case, they live with low counts. The remission time for Rituxan is generally a year, although some get longer and some get a shorter period of time.

I've never heard that remissions are supposed to be a few years and that relapses are not severe. Everyone is different and ITP does what it wants to do. Hang in there. There is still hope.
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Rituximab 1 year 3 months ago #63438

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Do you know any lifetime follow up study for adults with itp ? Their relapses , severity of their relapses , their remission periods and etc ?
I was looking for it , but in articles I've read , they had people with itp , did something on them and everything was finished (or 5 year follow up at max , about splenectomy I read somewhere that someone had relapsed after 8 years )
Why isn't there such a Long follow up ? It's hard or itp is not serious that much ?
I just missed my previous life :(

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Rituximab 1 year 3 months ago #63439

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I have never come across any lifetime studies on ITP. I've been following people on here since 1998 and I've seen everything. Splenectomies can fail at any time....days, weeks, months or even twenty years after the surgery. Sometimes the goal with ITP is not to try to cure it or even get remission, but to manage it so that you can maintain 'safe' counts above 20k or 30k. That can be a hard thing to accept because we all want normal lives. ITP does change that, but in time you will learn to make ITP part of your normalcy if remission doesn't happen. I struggled with it for eight years until I got a lasting remission, then got diagnosed with Lupus which is harder than ITP was. :(

What is it that you miss from before? Most people can live a pretty normal life with ITP unless they were really active with sports. I wouldn't say that ITP isn't serious because it can be if a person has bleeding symptoms, but it can usually be managed. Sometimes it just takes time to find the right treatment. I have seen quite a few stubborn cases like yours that eventually did respond and I know it's frustrating, but patience is key.
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Rituximab 1 year 3 months ago #63441

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I wasn't a professional athlete (However I was playing taekwondo and weightlifting for fun )
I was just shocked anyway , Cuz it was right the time to decide about my future time and plans :( two day before I get that 6k and hospitalized , I was talking to my instructors about applying to another country for my next degree , It's affected anyway . I know I cannot change it right away (Im doing my best to have a healthier life to see if it works ? )
The worst part of it (after that 22.5 mg poison every day :( ) ) . Is the uncertainty . It's normal part of medical science and for me , It is very hard to deal with that . I know it could be much more worse . It could be lukemia , or many diseases we have never heard .
And im just thinking about what if rituximab didn't work ? I know I must wait before doing splenectomy (at least a year ) . but in my country , government supports TPO's for who have failed to splenectomy . So probably I should ask doctor to buy me time with anti D (that's very well supported ) . but anti D has it's risks too .. :( steroids are bad too :(
www.bloodjournal.org/content/bloodjournal/99/6/1922.full.pdf?sso-checked=true
www.haematologica.org/content/91/8/1041
www.scripps.edu/mcmillan/initial_treatment.html
Another dark side of Itp is that I was best in my faculty , but now reading about itp and possibilities also distracts me :dry:

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Rituximab 1 year 3 months ago #63450

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Lman - Just try to think of it as putting your taekwondo on hold for now. It's not over yet. You can still practice the forms for now. Take this time to perfect another art; photography, painting....there are many things to do!

All treatments have their risks. Are you saying it's not possible to try a TPO until after splenectomy?
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Rituximab 1 year 3 months ago #63456

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I think so , but I shall ask doctor again about support programs (there is one , but I think it's for those who failed splenectomy )
I'm so confused about spontaneous remission rates in adults . Is there any good article about it ? Do you have any idea ? I think it's being underestimated . it was very promising : www.haematologica.org/content/91/8/1041
I just hope rituximab works for me :( I see people having responses in 3rd shot , but I read somewhere average response time was 5.5 weeks . my first shot was 5 weeks ago and here it said some people reacted as late as 18 weeks : www.ncbi.nlm.nih.gov/pmc/articles/PMC2649348/
If loosing my spleen guarantees that itp will not come back (As I know there's no guarantee ) , I wouldn't hesitate sacrificing it right now . but this is what makes me scared :

"
Hi. My name is Simon. I am a 26-yr-old male dairy farmer from New Zealand, usually fit and healthy. I have recently been diagnosed with ITP. It came on suddenly-- one day I started peeing blood and had kidney pains so I booked a doctor’s appointment for the next day. When that came around I also had bruises and blood spots all over my body including my mouth. The doctor sent me straight to the hospital saying I had low platelets. It turns out he was right.

My platelet count was 1 or 1,000, so at the hospital they gave me a platelet transfusion, started me on prednisone and also Intragam. My count went up each day, 1 to 3,000; then to 7,000, and then to18,000. At 27,000 only four days later they sent me home still taking the prednisone. I was to have a blood sample taken twice a week. The first one was good at 44,000, but two days later it was back to 8,000; then below 1,000 again. I went back to hospital where they put me on Intragam and an IV steroid for three days. My platelets came up again to around 40,000 so I went home after four days in the hospital. However, the same thing happened again, with my platelets back down to below 1,000 within a week.
The hameatologist said I had two more options to try before other major drugs -- spleen removal or rituximab. At this time I also had nosebleeds that would not stop, sometimes for six hours until they put things in my nose to stop it, which was very uncomfortable. I chose spleen removal because it sounded like the rituximab had less chance of working and even less for the future.
So I had the spleen out while having platelet transfusion. All went well and a blood test that night showed a 76,000 count. That was followed by 41,000 the next day, then 20,000, and then only 8,000. Since that was not the desired outcome it was time to try the rituximab. I had the IV drip of rituximab last night and am waiting for blood tests but I have blood ulcers in my mouth again. It looks like my count is down low because I only get them when it’s around 1,000. They have been weaning me off the prednisone and I'm still in the hospital so they can watch me.
The doctors took a bone marrow sample and I'm producing plenty of platelets. They are testing my blood for various things, have scanned my liver but still we don’t know what is going on. I've had to quit my job because the cows still need to be milked and I had to pull out of a sharemilking job for next season. I am getting very frustrated and down sometimes since nothing seems to be working and there are no answers. I am trying to stay positive for my partner and family because I don’t want them to worry or myself since worrying won’t help. It all just seemed to happen so fast. I am now wanting to look at natural ways that can help my situation, like a change of diet, herbs etc. Even if it gets me to a count of 10,000 I'd be happy. If anybody has any suggestions or anything that might help I would very much appreciate it.
Thanks for reading. Simon P. (New Zealand)
"

I know about indium test and Ivig as a predictor , but I asked doctor and he said in my country they do not have indium test , and it has been just two and half a month since my diagnosis and personally think it's too early to think about it ...

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Rituximab 1 year 2 months ago #63462

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Yes, you have to go to the UK for the Indium. Several people here have done that. The thing is, the test can show if you are not a good candidate for splenectomy, but it cannot show that you are a good candidate. If the test shows destruction in the liver, you pretty much know that a splenectomy won't work. However, even if it shows destruction in the spleen, that does not guarantee success. The splenectomy can still fail.
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Rituximab 9 months 3 weeks ago #65046

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Hi everyone !
my journey still goes on ... but there has been some hope for me !
Rituximab did not work for me , I was on 25 mg daily pred for about 6 month . I was around ten for most of the time , but one week (right after I had started daily papaya leaf tea ) it jumped to 21k and then 31k next week ! I was very happy with that since it was at the end of 3rd month and I was happy that it might be going away , next weeks came 22k and 12k and then I strarted Nplate (And refused splenectomy ) . I started at doese 3 mcg/kg . I took several weeks to work . but then my recent counts have been 121k (25 mg ) then 60 k (20 mg ) then 50 (15 mg ) then 50 (10 mg ) then 90k (7.5 mg ) then 203k (7.5 mg ) .
Is there any hope for me ?! I know above 200k is meaningful while on nplate but I was also taking pred which might effect counts ( If i'd be taking only 7.5mg pred I'd be arount 2-3k ) . I know NOTHING is not predictable ! but are these counts good ? When I got 203k I waited one day and then injected Nplate again . and also my count was below 75k . 3,4 days before that 203k. It has been 7.5 months since my diagnosis and I have had 13 Nplates (which 8 of them being continuous so I was able to reduce pred's dose ) .
I try to inform you if anything happened !
But Im still thinking to that 31k :dry:
I Told my univ staff that I have been sick recently and they allowed my to be with my parents this semester . It's quite good and Im somewhat sure Im going to get rid of this :side:

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Rituximab 9 months 3 weeks ago #65047

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And I have also refused danazol , azathioprine :)
my previous hemo was really good one but he said I will not prescribe you Nplate till you fail splenectomy , So I decided to visit another doctor for a while ( which was student of past doctor ) , He is not really good and Im sure he has never had treated any itp patient with Nplate (He thinks Nplate is given intravenously !!! So he prescribes me intravenous saline with nplate !! but at least he listens to me ... )
Is there anything I need to check while on nplate ? we check Cr , liver , blood suger , TG . I know one possible side affect is increased bone marrow reticulin but that is not going to happen very soon ( maybe after 2 years ) ? And CBC is enough to see if unusual RBC are being made ?
And about pred's withdrawal , is 2.5 mg reduction good for every 2 weeks ? (while under 10 mg )

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Rituximab 9 months 3 weeks ago #65050

  • mrsb04
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Once you get to 7.5mg a day of pred. the tapering has to slow unless you want adrenal insufficiency which could kill you. 7.5mg is the physiological dose. You need to taper slowly from there. 1 mg a month reduction is standard protocol. So it will take you at least 7 months to get off it. It may be that you have to go even slower than that. Have a read of this www.nadf.us/adrenal-diseases/secondary-adrenal-insufficiency/

The target dose for ITP treatments is to maintain a count of 50k on the lowest dose of treatment possible. N Plate is a TPOra that increases platelet production. www.ncbi.nlm.nih.gov/pmc/articles/PMC3658154/
New platelets are big and sticky ergo a higher risk of blood clots. A count of 200k is too high.
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Rituximab 9 months 3 weeks ago #65051

  • Lman
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Wait , What ?!!
I knew about adrenal insufficiency , And I knew that it had to be gradually stopped , but I remember once I read hear in PDSA a post about how to stop pred (And unfortunately I failed to find it again ) . But as I remember it was also supporting this idea of 2.5mg every 2 weeks (unless I'm mistaking )
I read the link you sent me but it did not talk about any mode of tapering . I would be appreciated if you send me any specific guideline about that .
Look at this : www.ouhsc.edu/platelets/ITP/crystal.html
It's written by Dr. George who is also an old itp specialist (contributes to itpsupport in uk ) . it says : "A schedule was developed to gradually decrease the prednisone dose and stop it in 6 weeks." And according to story , Im sure she was taking not less than 7.m mg per day . This also supports my decision . And to be honest , after two weeks of taking 7.5 mg , it has now been a week that im taking 5mg with no side effects (May it come later ? )
Any way , I'd be appreciate anyone of recommend me FAST !! and safe !! way to stop this .
By the way , I kn ow about Nplate's dosing rule , about 50k,200k,400k . I hope next time it's still above 200k !
However , I might not go for blood work this week because I have caught a minor cold and it might effect my counts and make me disappointed !! :)
Thank you

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Rituximab 9 months 3 weeks ago #65053

  • Hal9000
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Used to exercise a lot? Declining Nplate dose while taking steroids? Sounds like you're in the 'row 2' club.
Good luck with your Pred and Nplate tapers.
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Rituximab 9 months 3 weeks ago #65056

  • mrsb04
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That is a specific guideline for Prednisone taper. NICE (National Institute for Clinical Excellency), supported by British National Formulary and Uptodate.
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Rituximab 9 months 3 weeks ago #65057

  • Neve24
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  • Neve, 21, diagnosed in 2004 with ITP, relapsed 2013, relapsed 2017, chronic since then; last count, sept. 3rd, 2018: 4000 (on Imuran)
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When I was being taped off of prednisone I dropped from 80 to 60 to 40 to 20 then to 10 then to 0 mg, each drop I did after 1 week if i remember correctly (that's how my doctor told me to do it) .. I had no issues with withdrawal whatsoever... I did that 3 times bc my platelets would drop every time, the 3rd time i didnt care if my platelets fell to 5 bc i just wanted to get off it asap.
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Rituximab 9 months 3 weeks ago #65060

  • mrsb04
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Neve
That is totally against any medical advice I have been given or any protocol I have seen. Also against the 'rules' of physiology. You are so lucky, your adrenal glands must have woken up immediately
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Rituximab 9 months 3 weeks ago #65061

  • dru
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Re the prednisone taper, In the UK there is the protocol that mrsb04 has shared with us. Here in the US the prednisone it seems to be totally on the experience of the doctor. I have had 3 hematologists in the same practice and 3 very different tapers. My current doctor told me to manage the taper however I wanted and I used that UK protocol as a guideline. I have a very hard time with the prednisone withdrawal and going very slowly helps me. While everyone has to taper carefully to avoid adrenal problems I think that some people have an easier time and can go a little less slowly than me.
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Rituximab 9 months 3 weeks ago #65062

  • mrsb04
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I know where you are coming from Dru. Coming off prednisolone is the hardest thing ever. I've been on the wretched stuff for over 4 years.
My current taper, my 3rd attempt, started at 7.5mg/day in April 2017.
I am now down to 2mg a day and staying on that for 8 weeks to give my adrenals a break then I will continue tapering very slowly. The light has been at the end of the tunnel for so long I am determined to reach it this time.
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Rituximab 9 months 3 weeks ago #65064

  • poseymint
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Great that you are down to 2mg MrsB!! yay I'm really happy for you. And of course I agree with you about pred tapering, adrenal crisis is very serious. I've never had my adrenals checked but have started seeing a new endocrinologist so will be doing blood work for adrenals. I think they are probably fine. I've been having thyroid problems- low thyroid which feels a lot like low adrenals- trembling, fatigue, so tired I can't sleep, emotionally weak.

From my years of experience with prednisone and everything I've read, I know if a person is on 25mg for over 6mos, tapering from 10 to zero is a bad bad idea. You should always taper more slowly when you get below 7.5 and especially slow below 5mg. Tapering by 1mg is a good plan. Symptoms of adrenal insufficiency are body aches, fluish feeling, fatigue, muscle weakness, depression, joint pain and just dog-tired.
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