Use of rituximab as ITP treatment being studied
Wednesday August 27, 2003
Rituxan (rituximab), an orphan drug, was approved by the U.S. FDA in 1997 for treatment of B-cell non-Hodgkins lymphoma. However, researchers are experimenting with a new use of the drug: treating immune thrombocytopenic purpura (ITP). Ten centers across the U.S. are using rituximab to treat children and teenagers with severe chronic ITP. Initial results are encouraging; the children's platelet counts returned to normal levels.
Comments
I am currently undergoing treatment for ITP with rituximab. I am a late middle aged male, which makes my case of ITP unusual. I am the first such patient being treated this was by the clinic.
My daughter (19) just started same treatment today. Pls follow-up, report your results, as will I. Her platelet count has been 2 to 3000.
the day after starting the rituximab, they started her on Win-Rho. Within 24 hrs, platelet count went from 2000 to 92,000. We hope we are on to something here. You out there, Bill?
My 7-year old son was diagnosed with ITP 6 months ago. I guess we call it chronic now. His platelet count has been steadily dropping on Prednisone and his last count was 21,000. Now his Hemo wants to try Rituximab. This is scary stuff. Several people have died within 24 hours of the first treatment. Please send me anything you have on children taking this stuff. I will do same if you request.
William
My 1 year old daughter has chronic ITP and was treated with Rituxin last spring. She didn’t experience any complications and was in remission for six months. We are now fighting low counts. She is back down to 8K.
My dad was somewhat diagnosed with ITP. He’s 54 years old. He’s been in the hospital for 17 days today. He was admitted to the hospital with a 0 platelet count and has maintained such for the past 15 days. He was given Rituxan last week. Approximately 1 week later (today), his count went up to 65K (from 0 to 65K). What I’m soooooooo frustrated by is the lack of empathy I’m getting from the doctors. .. the fact that they want to discharge him after he gets to 100k and the fact that they really don’t know what’s wrong with him. .. so much for the “I” in ITP.
I posted in july 2007 (see above) and after the one Win-Rho treatment,my daughter’s count went up and stayed up in the 400k’s. She is now off the prednisone 8 weeks, and maintaining (knock wood). During her 10 days in the hospital, her count was below 2k, and all the IVIG, steroids, and the Rituxan did nothing. Only platelet IV’s kept her from bleeding to death. But one dose of the Win-Rho? (I’ve seen different spellings) apparently turned the tide.For now we just keep monitoring it, and try to wade thru a couple of $100,000 worth of bills.
Hi, I have ITP and have had it for about 4 years. First I had so many different treatments from 2 different kinds of steroids to IVIG and them giving me platelets, removing my spleen. After my splenectomy my count went way up but that didn’t last long. Now my platelets are going down and now they are giving me the rituximab treatment. And so far no results, in fact the platelets went down. I guess I am looking for any other kinds of treatments out there. Any one that knows of any other kind of treatment. Please tell me. I don’t know what else to do. My life is getting harder and harder to live. Thanks.
Michelle, read my previous messages. Ask your doc about the WinRho. I don’t know anything about it,other than it worked for my kid, and it’s given as an IV. And they had her scheduled for a splenectomy too, without even consulting us.
Last July my 12 years old son was diagnosed with ITP, We’ve tried everything. From IVIg to heavey dose of IVIg to steroids to heavy dose of steroids to Win-Rho then we repeated that again and the last thing we tried was Rituximab. The platelet count still 0.
Some doctors Suggested splentectamy, but i’m not sure if that will work out too.
I don’t know what to do!
Well it’s offical the treatment Rituximab did not work. I have had 3 bone marrow biopsy’s in the 2 weeks and now they are saying that there isn’t enough cells in my marrow. I am not sure of the excact word of the cells. Steve thanks for the response. I have sent for info on Win-Rho and will give it to my doctor. How is your child’s platelet count now? I have been advised that I can get disability because I have been dealing with this long enough. Has anyone out there ever got disability before?
I have had chronic ITP for a very long time and had splenectomy and just about every other treatment available. It has been almost 3 years now that I have been in remission since Rituxan therapy. I would strongly recommend it!!
48 yo male with CLL and ITP four years. Started with Rituxan from the start. Worked great for CLL, but only helps for 6 mos with ITP. MDA wanted my spleen out last 2 years, which I would not do, and now 4/08 they say there are new treatments on horizon for ITP! Incouraging, since Splenectomy was going to be the last resort till now!
I am a 23 year old female and have been diagnosed with ITP. I have been on many different steroids, which did nothing, and even tried functional medicine. I am seeing a new doctor that is associated with UCLA. He is recommending Rituxan therapy. I think I am going to try it. What do I have to loose? For those of you who took it, did you have any minor or major side effects? After researching it, I am nervous about taking it. If this doesn’t work, they want to remove my spleen.
I just finished my round of treatment with Rituxan today. 4 IV’s over 4 weeks. I have not had any noticeable side affects.
I was very slow to respond to Rituxan. Under 20,000 platelets prior to treatment (post splenectomy), and after 4 teatments in 2004, only minimal improvement…55,000. By 2006, I had over 500,000 platelets. In 2008, I still have over 400,000 platelets. Rituxan treatments were piece of cake. No side effects. My case was weird, because the response time was very delayed. However, I have plenty of platelets now. Feel great, but I even felt fine and had few symptoms with even less than 20,000 counts. I would go ahead and try the Rituxan. Happily, the treatments also did wonders for the arthritis swelling and pain in my hands. I have lots of platelets AND the pain-free hands of a 20 year old!
Am 62 and have had ITP for 32 years with a 12yr remission after splenectomy. Relapsed 12 years ago with counts as low as 3. Treatment? You name it – I’ve had it! Been on Rituximab for 2 years with fantastic platlet counts. From today I receive Rituximab 6mthly – Count 405! Side effects? Only sweats which are liveable with. Never felt so well!
I guess I’m in the middle range of all of this: my platelet count as of 10/10/08 is 28,000. I’m still on prednisone, but two weeks ago I was at 85,000. I’m scheduled for a bone marrow biopsy in a couple weeks. I’m pretty dubious about Rituxan because of the known severe side effects, but I know it helps in most cases. I’m 24, male, and open to any advice anybody may have. Holistic medicines/techniques? If I happen to stay pretty regular where I’m at – 25k-30k, should I even bother with Rituxan? Just a minimal dose of steroids? Well, if anybody responds, thank you.
I had a splenectomy 16 years ago for chronic ITP and have not had a problem up until 1 month ago when I had hemturia and my count was 17,000. I was given platelets and prenisone and I came up to 625,000 then within 2 weeks I was off the prednisone and down to 2,000 … Dr. wants to discuss long term treatment.. Any suggestions PS I am a health care worker
My son is 14 was diagnosed with ITP over 2 years ago. Has tried winrho with good results that last now only a little over a week and plat drop off to around 10, has started getting IVIG and has a reaction that makes him break out all over in bumps and skin peels, although the platelets go up above 100 for a week or 2. Has tried Steroids and also was on a course of dapsone for a few months which led to him having seizures. Dr;s were prpared to do splenectomy and now called me to say they think they should try rituximab, even though he has many allergies and has been anaphylactic to some foods. I am worried because of the warning of reactions and death. does anyone have any advice?
48 yrs old, diagnosed with ITP in 10/08. Prednisone worked short term at high dosage, 16.4 to 132 in 1 week. But the count dropped as dosage dropped. I started Rituxan 2 weeks ago. I went from 49 to 94 after 1st treatment, but dropped to 31 after 2nd treatment. My hemo said this is not uncommon. No side effects so far, except for the 1st treatment, needed extra Benadryl. One more to go, I’m keeping my fingers crossed that the count is up.
I suppose I am a real veteran of the Rituxan/ITP wars since I am now on my third course of eight treatments over a period of four years. To date, I have had a total of 19 Rituxan treatments over a period of four years. My treatments with Rituxan followed the usual course of Win-Rho, Prednisone, and spleenectony. None of these increased my platelet count from a low of 12,000. I begin the first course of weekly Rituxan treatments which continued for eight weeks, and my count climbed to 65,000 where it remained for 13 months. When my count began dropping, I took the second course of eight treatments and the count returned to about 75,000 where it remained for two years. Suddenly my count peaked at 115,000 and dropped rapidly to 15,000. Several weeks ago I began the third course of treatments and so far my counts has not improved significantly. I have had no major side effects and have been pleased with the outcome. Rituxan treatment is inconvenient, time consuming, and a general pain, but for me, it is the only treatment that has proven effective.
Resisted rituxan for past 3 years. Pred first 6 weeks then got necrosis of the hips. Vitamin C seems to have helped me orm low 20s to 199k. Had hip replacement and core decompression, no change in counts. went off C in summer 2007, had hernia repairs in fall 07 and did a slow decline from 137k all the way to 1k in June. WinRhoSDF in 3 doses got high counts and rapid taper 6-8 wks, then repeat. N-Plate became available, my hemo does not like it. 2nd hemo said sure to NPlate, but I realised that my view of Rituxan had changed.Started Rituxan in November done now 2 1/2weeks and climbing slowly 20-27-29. Win Rho could be used if I fall, and it might last longer. But now Promacta is available and my hemo seems to like it. Still have some choices and more hope. I tolerated the Rituxan ok but it did give me some trouble on the first date and mild but persistent indigestion. 54yo male.
My mother was diagnosed in AUgust with ITP in August. She has been on Predizone with up and down results. Her treatment is not producing long lasting results. In one case even crashing to dangerously low levels. She is going to begin Rituxan this week. Her treatment will consist of once a week for three hours over a 4 week period. What can we expect and has anyone had suceesful results. Looking for positive feedback. Thanks for your support. donna
My mom had a lung transplant 4 months ago and was just recently diagnosed with TTP (not ITP) they gave her about a 50/50 chance of survival. After her first bout of Rituximab her platelets have increased but they will not know untill the full treatment is complete. The Drs do have high hopes for Rituximab and they say its the new best thing for transplants. I sure hope so.
I am a 24 yr old female and I was diagnosed with ITP when I was 22 so the fall of 2006. My platelets gradually dropped over about 6 months prior from 110,000 to 22,000 by the fall…they tested me for an antibody towards my platelets and sure enough i had one so then i was treated with rituxan once a week for 4 weeks. by the 2nd week my counts went up to 86,000 and about 6 weeks later my counts were back to normal range. i get my platelets counted every 4 months or so and they have been normal ever since so over 2 years now! The only reaction i had (which could have been dangerous) was on my first infusion of rituxan they gave me iv benadryl, which makes me really drowsy i found out (i had never had benadryl before in my life) so once the benadryl infusion finished and the rituxan started i immediately felt as if i had a sudden bad flu, headache, nasal congestion in an instant, and even my throat swelled up became scratchy and extremely dry, my body ached…it was like a full blown bad flu that came on in less than 30 seconds out of nowhere…The dangerous part was that i was soo drowsy from the benadryl and i couldnt hold my head up and i couldnt come up with the energy to call someone and tell them it was hard for me to breath…i couldnt breath through my nose and my throat was closing up and drying up…so the thing that saved me is the nurse came up to me (my head still slumped down) and asked me if i was cold and if i wanted a blanket…and that is when i gathered all my energy and pointed to my throat gesturing i was having trouble breathing. So she immediately stopped the rituxan and ran saline through the iv and it was in that next instant that my horrible flu just went away as fast as it came. So i guess this was an allergic reaction and that is why they give benadryl in the first place…but thank god for that nurse checking on me cuz i was having trouble breathing and who knows if i hadnt of been checked on that quick. However, the next three infusions i did not have any problems at all, just some anxiety. But this stuff works and i have been healthy since.
My daughter, 32, has ITP in addition to CVID (an immuno-disorder). She finished a 4-week course of Rituxin a few weeks ago and her platelet count has been rising steadily. She was tested last Monday and got her results today: 330,000! This is the first treatment other than 100 mg doses of prednisone that has done anything for her. Her doctors were hoping that the ITP was a side effect of the CVID and started her on monthly gamma globulin infusions but that did not seem to help with her ITP and platelet count. So her hemotologist started her on the Rituxin and that apparently worked. She will still need monthly gamma globulin infusions for the rest of her life, but at least she will have a “rest of her life” and with fewer sicknesses, hopefully.
Hi,I’m 40yrs old and I’ve had ITP for about 5yrs or more now. They have been down to 2,000 and was still dropping utill I was transported to UNC Hospital where I received the best care with the best dr. and her name is dr.Ma. I have had 20 or more blood transfusins and it would work for about 2 days along with steriods. I’ve been in and out of the hospital at least 2 times a wk. also with steriods. This went on for about a yr. then we decided to take out my spleen. That worked for about a month then started back on steriods. I have been given Win-Rho that also didn’t work. Then the dr. decided to try the rituxin which done wonderful for about 1yr. then platelets droped to 15,000. I begged the dr. not to put me back in the hospital so she started me back on steriods until my appt. She has since started me on a new experiment with the drug CELLCEPT which is an organ transplant rejection medication. I’ve been on the medication for about 6 months now and so far it has worked wonderful. My platelets have ranged between 180,000 to 340,000. I feel like I’m normal again. They are having alot of success with this drug used for this purpose. I recommend that you discuss this with your dr. if you still have problems with your platelets and hopefully I will be taken off the drug completely. SOON! and of course the best thing is always PRAYER! God bless all of you.
Has anyone here ever heard of N-Plate? It is showing some great results in people who have failed steroids, win-rho, and/or Rituxan.
N-Plate is an injectible substance that prmotes platelet production rather than inhibiting platelet destruction. Showing lots of promise and is a recent FDA approval. I’ve heard that it can be self administered. Promacta is also new but in pill form having the same plan of attack. I have been approved for both but taken neither, Rituxan in November and partial response to the upper 30s. Count dropped to the 20’s and I got another Win Rho treatment. Have seen some other info on Rituxan recently re Fixed Dose in the amount of 100mg repeated 4 times in 4 weeks. See my hemo Thursday…
I have been diagnosed with ITP in June 2007 been hospitalized for 10 days…been on and off of Prenidsone…was on danazol, was more trouble than its worth…my stay swollen for 3 weeks…got off of it and went bank to steriods…now my platetts are now 3600, my Dr. has me on Dexamethasone, 10 pills a day for 4 days, then he wants to treat me with Rituxan…dot sure of any of the treatments…nothing seem to work for me…suggested a spleenectomy.
I have had ITP now for 10 years. Over the last 2 years it has become really agressive to the point where I have had my spleen removed.This has had no effect and the ITP is now worse than before. Been advised to start on the Rituximab but from what I have read most of the success stories with this drug have been pre splenectomy. Not sure what to do.
I am so happy to have found this site. My Dr. just prescribed Rituxan. I will have it next month. I was diagnosed with ITP 04/2006. I have been on prednisone since, with different dosages. Be careful of WinRho. I experienced an Acute Hemolytic reaction 2 1/2 hours after the injection. I was home when I started sweating, chills, fever and the most horrible pain in my hips. I had to call 911. I’m tough but it was the worst pain in my life. The Dr’s office released me after only 1 hour of observation. The WinRho web site states it sould be 4 hours observation. I was also on Danazol last summer due to lower counts. I experienced any and all side effects listed. I had to go off Danazol and back on prednisone. My platelets are currently 23-28k. My doctor had discussed a spleenectomy, but now has ordered Rituxan. I will write back when I have my treatment. Take Care Everybody!
I am a 63 year old female diagnosed with ITP 3 years ago through a routine blood test. Prednisone didn’t work. Had routine bone marrow biopsy which was ok, nothing sinister. Platelet count was down to 50. Refused to have slenectomy. Transfusion of immunoglobulin worked. I am convinced that what really saved me was visits to see a Naturopath who carried out Bioresonance therapy, with homeopathic treatment. She found I had deep seated glandular fever(ITP is a side effect). My platelet count has increased but is now back down to 188. Its been found I am deficient in Vit D3 & B12 which I will have an injection for. Hope this info helps.
I’m an 18 year old guy and had ITP 3 years ago. Nothing seemed to be working and my platelet count was at 13,000. After a four week course of Rituximab my platelet count shot up to 352,000 and has stayed around there ever since.
Thanks everyone for sharing your story of being on a journey with ITP. I was diagnosed about a year ago, have had about 4 Whin Rho treatments with predisone and decadron steriods. This week I started Rituxan treatment for ITP. My hematologist described it as a spleenectomy in a bottle.. suggested I go this route before removing my spleen. I am hopeful that the Rituxan will send it into remission. I’m 40 year old very healthy female. Thanks for sharing your stories. It’s encouraging.
I am 54 yrs. old , and was treated
with Rituxan last September, afterwards
the steroids (decadron, etc.) took hold.
I entered the hospital(before treatment) with a
count of 3,000 — and slight
cranial hemmoraging. Did not have
surgery, and I am fine right now
with a normal platelet count.
It’s nine months later — so far so good.
I was diagnosed with ITP in Dec. 2008. I was hospitalized with a count of 3 k. I was 20 weeks pregnant at the time. I have been getting treatment ever since. I had my baby and the ITP did not get any better. Tried predinisone, IVIG, etc. I have been on Rituximab for 3 weeks. So far it has not helped. My count last week was 17k and I had to have IVIG. I am so frustrated and worried. There is so little information out there and my Hemo doesn’t tell me much. I am not sure if I want a spleenectomy, especially if it won’t do anything. I just want to be healthy again so I don’t have to worry about taking care of my new little one.
i am a 22 year woman and i was first diagnosed with a low platlet count when i was carrying my first child after having him my count seemed to go back to normal a year later my count dropped to 1000 and i was hospitalized and put on prednisolone steroids which boosted me back up slightly to around 80,000 over a few weeks as my dose was decreased obviously my platelet count fell but not dramatically and within 2 or 3 days of me coming off the steroids my platlet count dropped to 7000 and was put straight back on steroids then my hemo suggested i tried rituximab so i went ahead with it and had 4 treatments over 4 weeks my platelet count went straight back to normal and has been for 4 months now so fingers crossed! i recommend this treatment to anyone and just so that you know i have not had my spleen removed so it is worth it before you decide to have the surgery!
I’m a 21year old female with ITP. I was diagnosed one year ago. I have been on prednisone which only helped while I was on it, I did immno-globulin treaments and the same thing happen my platlets went up to 200,000 then I would come back the next month for treatment and the would be back down to 32,000. Today my doctor say he wants to start me on rituximab this week. Like the rest of you I’m concerned about the serious side effects but I’m encouraged by those of you who have had positive responses. If any of you know of natural remedies to help with ITP I would very much appreciate them. So please pray for me that everything goes well tomorrow.
I am 56 years old and was diagnosed with ITP in 1960. Have had a splenectomy platelets, gamma globulin , yet nothing seems to last. When I’m healthy, my platelets average 55,000. However as soon as a cold or flu virus comes my way the count drops down to 2,000-3,000. Usually the count will recover after the virus has left. Was thinking about rituximab.
I was officially diagnosed with ITP in February, after my daughter was born in November with my count being 52,000. Anyway- healthy delivery, healthy baby. Thank GOD another dr. had taken over delivery for my reg. OBGYN or we may have not caught it. When I went home, count back up to 78,000. Then, in Feb. started going to Hem. with a count of 25,000. Steroids did not help. Used WinRho- count went up, then slammed back down 4 weeks later. Continued with this cycle, getting treatments every 4-6 weeks (what a pain, especially with a baby/being a teacher!). Count would go up over 200,000, then come down below 20,000 in 5 weeks time. Tried IVIG in hospital when we did a bone marrow biopsy–count went up to 18,000, and that was it! No leukemia- THank God! Tried Rituxin that summer- a treatment per week for 4 weeks. No change. Continued WinRho to keep me alive-my only form of saving although expensive. ALl this happened in a 6 month span of when I gave birth. Then after a year with this one Hemo, went to another to get a 2nd opinion. Had two treatments with him in 3 month span, then BOOM! Haven’t had a treatment since Feb. 2008. I go to get a CBC every 3 months now, and last count was 111,000 on it’s own!! I don’t understand it but it worked itself out with lots of vitamins, water, and healthier eating. I think that the drug company which I had to order my WinRho through didn’t have a good product or something, because once I started going to this new Hemo, I had to get all my meds through the hospital pharmacy and that is some potent (and expensive) stuff! Please–always get a 2nd opinion. If I never had, I would still be suffering. This disease has been the toughest obstacle in my life, but it taught me alot about living. God Bless!
My son (17 months old) was diagnosed with ITP a month ago. His count was at 1200 when he was diagnosed. Since the hospital, he has been treated with Iv/Ig- brought his count up to 50K but dropped back to 4K within 2 days. Tried WinRho- count went up to 14K and dropped within 2 days. Tried Prednisone- Did nothing for him. Now he is on Dexamethasone for 4 days. If nothing happens, then he goes Rituxin.. I am so scared about this. is Rituxin chemo? Will his hair fall out, will he vomit,etc???
My husband has low platlet count. It was betweet 85,000 to 95,000. He was going to have a prostate biopsy and the hemotologist was concerned about bleeding. (I have since learned from other doctors that they generally don’t worry about bleeding during surgery unless the platelets gets below 50,000.) The doctor gave him high doses of prednisone and his platlets came up. When he lowered the prednisone, the platelet count went down. He then decided to give him Rituxan. The doctor told me it was a very safe drug. He said it is a chemo drug without the side effects. He didn’t lose his hair. He received 3 intravenous treatments and then had the biopsy. After taking the prednison and the Rituxan his immune system was compromised. He became very ill and entered the hospital in serious condition. He was diagnosed with Aspergillus of the lung. It went to his brain and he is now in very bad condition. He has lost his long term and short term memory. He now has fluid on the brain and 2 abscess’. The doctors are now wanting to drain the fluid and remove the abscess’. They have never done this surgery on someone with Aspergillus of the brain. He has been in the hospital about 5 times in the last 2 1/2 years, each time in serious condition. Until he received these treatments, my husband was a very healthy person and walked 4 miles every day for the last 25 years.
I am 18 years old and started rituximab three weeks ago…the first week my counts were 90, the next 8 then the next week I was given N-plate and rituximab they were 68 and am going in again tomorrow for rituximab, we will see I guess…
This is for Carrie whose 17 month old is going to undergo Rituxin treatment. I left a comment a couple of years ago, you can see it if you scroll up, my daughter was diagnosed at 12 months old and had very low counts, much of the time below 20, and too many times under 10. We ended up doing Rituxin and she had no side effects. No vomiting, no hair loss, not even any irritability. We were scared the 2nd or 3rd week she dropped down to 3 or 4 and we began to question the treatment but we continued on as our hemo advised. A few weeks later we had success, her counts were upper double digits and holding. My comment in Sept. 2007 was 8 months after the treatment, but we waited it out and her counts went up and never been in double digits again. It has been just over two years and I would recommend it without hesitation if the IVIG, WhinRho, and steroids are not successful. Good luck!!!
I am 29 year old female. I was first diagnosed with the thrombocytopenia my count was 62,000(may 07). They took the baby early and I received platelets for the c-section. The doctors told me the platelets would return to normal after the baby-well they didn’t. I ended up in the hospital with kidney stones in September of 08. The CBC count came back I had only 17,000 platelets. The next day dropped down to 7,000 they tested for lupus and HIV(no bone marrow) when those came back negative I was diagnosed with ITP. I was started on steroids, at first my count went up then of course I ended up really sick they count went down. So we did IVIG that went well the first round in November the second round well I was back in the hospital they thought I had aseptic meningitis. I didn’t thank goodness! I switched doctors after I was scheduled for a splenectomy and then it got canceled. So the new doc is wonderful we have done a bone marrow(finally!) it came back good so next step in the splenectomy the 26th. I am so nervous! The doc wants to do the rituxin(not sure if spelled right)-after reading all the info on it I am scared I have 3 children and getting married the 19th. I honestly don’t know if I should even get the surgery now. I am allergic to alot of meds and with the other treatments I ended up getting quite a few bad reactions so any advise out there for me?
Missy, Can you email me? I would love to talk to someone who has gone through all of this. We went to the doctor today and the steriods did not work. He has been on IVIG, WhinRho, Predisone, Decadron, and none have worked. His counts stays below 30. We have been dealing with this for a month and I am getting fed up. They have now decided to wait it out and see what his body will do on its on. I am so lost. The group of doctors he sees all tell us something different. These are supposed to be the best group of Hemo doctors in my state but I am getting fed up!!
I’m 58, low platelets first noted 9 yrs ago in a routine checkup (90k). Gradually dropped to the 30’s and stayed stable there for a few years except once after a flu they dropped to 13 and responded to prednisone. A couple of months ago platelets were downt to the high 20’s, and my hematologist started checking them more frequently to see if treatment needed. A few weeks ago I had a fever and bloody sinuses, and checked into the hospital, platelets at 4k. Lots of steroids a first Rituxan during 6 days in the hospital. They decided I also have CLL and it might have been the cause of my ITP all along. Going for my 4th Rituxan tomorrow as an out-patient. No problems with the Rituxan except a bit of a chill the first time and the Benadryl made my sleepy. My platelets were still only 10 this morning. Maybe the Rituxan take a while to get my platelets going? My only other option is splenectomy. Good health to all, thanks for sharing your stories.
im 18 and was diognosed with chronic itp last year. iv tried many different drugs but no efffect. im currently having retuximab and today is my 4th treatment. im still taking 60mg predsoline so its hard to say if its working. my last blood count was. i just hope that this works now because my life has slowed down so much. if this does not work then my only other option is to have my splees removed. what do u fink ?
My Dad is 71 and recently diagnosed with ITP. Knowing what it is now…he believes he has been dealing with it for about 1 year. Red shins, sores on his feet, bad tastes in his mouth (likely blood). He has undergone splenectomy…which did not improve his platelet counts (still in 5k range). Steroids didn’t really help either. He had his first round of Rituxan on 5/26/09 (2K), week 1 & 2nd round (3K), week 2 & 3rd round (4k), week 3 & 4th round (5K), week 4 (12K), week 5 (100K)!!! Give it time. Don’t expect immediate results. Hemo was going to start small dose of NPlate to try and boost levels >50K giving the Rituxan a chance to kick in, but cancelled it for the time being. Dad was a little tired from the Benadryl… and horse from the steroids, but he tolerated the treatment well and really felt pretty good considering he was still recovering from a splenectomy. He indicated a little that the treatments made him feel better (particularly the day after when the Benadryl wore off). He went golfing this morning…he’s been looking forward to that. I am hoping things continue well with the Rituxan. Good Luck.
My 17 yr old daughter has chronic ITP. she has done prednisone for 5 months and during this time has also had win-rho with no success. High doses of prednisone work, but as soon ahs it is reduced the blood count also falls.
She had her first of 4 rituximab treatments yesterday and seems to be doing fine. The blood count and any eventual side effects remains to be seen.
i am a 29 year old female with itp diagnosis since i was 6 years- i guess that makes me a veteran of 23 years. i have tried all treatments incuding ivig, decadron, winrho and splenectomy. i was refractory to all treatments and have registered for the new amgen medication. i received rituxan 12 weeks ago with last dose in april 2009. in the 4 infusions, i experienced nausea and other reactions only once when my infusion was only 8 hours- my infusions were 24 hour long each time. i am only now experiencing an increase in platelet counts within the last three weeks – going from 12k to 47k. in the time between infusion and increas in counts i needed decadron pulse doses twice. i hope this treatment works and i am holding off on the amgen for now. good luck to all willing to try it. for me – i think the best part if this works would be to be steroid-free after 23 years!!!
Hi. Seeking info/feedback for Rituxan therapy, have read above posts, all very useful and interesting. Here is my story: I am a 33 year old female diagnosed 1 month ago with ITP (via bone marrow biopsy), have been through 1 round of Decadron. Plt ct 88 up to 128 after Decadron (after 2 week check-up). Hemoc wants to do Rituxan if plt ct doesn’t maintain (I go back in 2 weeks). I am a mother of a 2 year old little boy. Nosebleeds, rectal bleeding, non healing bruises, plt ct of 100 on labs in April, looking back….all makes sense now. My hemoc is being aggressive with my ITP treatment because my husband and I desire to have another child. I am very scared to go to my next hemoc appointment, afraid my plt ct has dumped…and will have to start chemo. Also recently diagnosed with severe Vit D & Vit B12 deficiencies, hypothyroid, degenerative disk disease-lumbar and cervical spine, now ITP. What the heck…not a great year for health, but I try to stay positive and keep a positive outlook. Although, not sure if I am so comfortable with the whole idea of chemo…thinking I should stop at 1 child and count my blessings. Hemoc very confident I should continue with chemo if needed, I am thinking about possible severe side effects this could have on my body, then if I go into remission and become pregnant and then have a relapse. I have a happy active lifestyle, am a RN and don’t want Rituxan to slow me down!!
You should all visit the PDSA website. You will meet others in the same situation and will learn a lot from a reputable site.
I’ve seen some misinformation in some of these posts; please do not believe everything you read on the Internet.
Heidi – Rituxan isn’t truly a chemotherapy. It’s classified as immunotherapy; big difference as far as side effects. Most people tolerate the treatment well with few side effects. I was fine for work the day after the treatments. I did have a rare side effect a few weeks into it (serum sickness) and had to stop using Rituxan.
There are also warnings about Rituxan causing PML in some individuals which can be very serious. Although Rituxan can be useful for ITP, it is not a treatment to be taken lightly.
Sandi,
Thank you for responding to my post and thank you for the useful information
I will look up the website you listed above. I am relieved to hear that Rituxan is generally well tolerated! I am learning so much about ITP and ITP treatments every day.
Sincerely,
Heidi
Hi all,
I have been working on a clincal trial (still actively recruiting patients) for a new IVIG drug for people with chronic ITP for the past 3 years, and I have to say that it is so great (and sad!) to see the human side of the disease. Good luck to all of you, it is quite a battle, and I’m glad to see there are more choices out there for all of you as the years pass. And I agree with a previous ‘post-er’, please check out the PDSA website – it is fantastic!! Good luck everyone!!
I am 33 with 2 wonderful daughters and a very supportive husband. My ITP was diagnosed after the birth of my first child and the hemo said don’t have another child it will make the ITP worse. Needless to say 5 months later I was pregnant with my 2nd daughter and it was rough…she was born premature and my platelet count on steriods were in the 20’s. I was on and off prednisone for 6 years after that finally, had my spleen removed and it worked for all of 2 months. My counts went from 3 to 183 after 2 days of IVIG 3 doses of Rituxan and 20 mg of prednisone a day. I was recently in the ICU or a platlet count of 3 and just started on Rituxan. Can anyone tell me after treatment if they have have severe body aches and nausea.. both of which the hemo said would not happen just chills or a slight fever. Some days I feel like a truck ran over me.
I had my first ITP event at age 48 with platelets under 3,000. Counts were restored after treatment with Cytoxan and Vincristine when IVIG and steroids failed. Lost hair and had bad peripheral neuropathy.
Early this July at age 62 counts dropped to 3,000.
IVIG and steroids failed again so just finished my 4th Rituxan infusion Friday. Biggest side effects were dizziness and the neuropathy returned which is not common. Counts are now 10,000 but hope is for steady improvement over the next couple of weeks.
There may be a better Rituxan alternative called Veltuzumab which I will try the next time.
I was 27 male when I was treated for itp with ritixumab. I couldn’t do winrho and they didn’t want to pull my spleen yet. I was on high steroids for 2 months with horrible side effects. From what I hear ritaximab isn’t 100% forever and that if your first treatment didn’t work you can get more and there is still a high chance it will work. It’s been 2 years now and my playlet count went from originally from under 1000 to 200,000 now. No side effects for me. No continued treatment
Are there any long term studies or links that graph ritaximab’s long term effectiveness of say 3-5 or even 10 years?
if your bone marrow isn’t prducing enough platlets you don’t have itp per say and ritaximab won’t be effective
717-414-1300 derrick
Of anyone wants to personally talk with someone whom had itp and was treated with ritaximab. Feel free to call me 7 days a week between 5pm & 11pm eastern standard time. I would be happy to help. I wish I could of talked with someone who went through it already when I was
Derrick
1-717-414-1300
Or email me derrickkendall@gmail.com
My daughter was diagnosed with chronic ITP thirteen years ago. IVIG, steroids, single donor platelets are not working. At one year of age her platelet ct was 18,000. Thru the years it gradually decreased to 10,000, and her body learned to adapt. This is the second time her count is below 5,000, the nose bleeds are unbearable, menstrual and anal bleeding is overwhelming! When plt ct was this low 2 yrs ago, the single donor platelets were the first treatment to ever work, getting her count to over 100,000, lasting for about a week. 5 days ago she got the single donor bag of plts, nothing. Yesterday and today she received IVIG, as well as the single donor platelets. She is sick and throwing up profusely with a horrible headache! From what I have read on numerous studies, the rituximab has worked for some, but lasted only a year or so! Many patients have suggested rituximab as a last resort only. Side effects at first dosage of rituximab scare me and I am not ready to try it yet! Would love to hear any of your suggestions or alternative menthods, etc. As well as any good or bad stories of win rho or rituximab. My email is lisabailey307@insightbb.com . Good luck to you all! I keep on praying! Also, dr has said she might have Bernard-Soulier syndrome. From what I’ve read, sounds like ot fits my daughter to a “t”. They drew blood and had to send it off to be tested for the Bernard-Soulier syndrome, but with her platelet count being so low, there wasnt enough platelets to do the test. Any comments?
I am a 30 year old female and was just diagnosed with ITP 6 months ago. I went in to the doctors with platelet count of 13,000. After 6 monts of steroids, which did improve my count to 300,000, I was transitioned off of them due to the long term effects. I am now back down to 75,000 wihtin 2 weeks. My doctor is recommending Rituxan as a treatment wiht the alternative of a splenectomy. I will have to go every 2 to 3 weeks for a 4 hour infusion if I chose Rituxan. Any thoughts from anyone as to which is better? I would opt for surgery if I knew it was a permanent fix to the problem. However, it Rituxan can improve the situation in time and my body will stabilize without having to complete treatments for the rest of my life it may be a better alternative
Kelly, sad to say there is no cure all. This is what I thought after I had splenectomy. I thought I’d be totally “cured”. I had a horrific experience after splenectomy but I’m told is very rare and my have been related to the fact that I was on birth control. I developed a clot in my stomach(portal and superior mesenteric veins) after surgery and spent 3 weeks in the hopsital. Since it was so rare I was like a guinea pig as they tried to treat me. But like I said, my case was very rare. My count stayed fine for a few months but dropped again to 7. As far as the Rituxin goes,I had my first treatment yesterday and it went fine. My hematologist is optimistic from other patients he’s treated that had lots of success but he did state there were those who didn’t. There are still so many unanswered questions about this condition which is frustrating at times. Wishing you all the best in your decision making.
I’m a 19 year old female and was diagnosed with ITP about a month ago, when I had unexplained brusing and a platelet count of 6, very high doses of prednisone worked but my count dropped to 3 the week they tappered my prednisone dose. I got IVIG done and my count peaked at 270something on Monday (Aug 17) but today had dropped over 100 down to 133 I started the Rituximab clinical study and had NO side effects it is a 50/50 chance I’m receving a placebo (basically water) or the Rituximab, the person next to me was experiencing side effects … I guess my question is has anyone else that has been treated for ITP with Rituximab had no side effects? Also I have a 7 month old son and would like to have more kid again someday, I have read on here by a few people saying their hematologist has discouraged pregnancy in ITP patients anyone with ITP have children sucessfully after they have been diagonsed with ITP? And lastly, most stories I have read and with other ITP patients a splenectomy has not been successful, has this form of treatment been successful for anyone?
Thanks