I'm newly-diagnosed with ITP (30 yr female) and so far it seems that mine is steroid-resistant. Since my diagnosis on 6/29/19, I've done dexamethasone and prednisone to no avail. So far only IVIG seems to work (I've had 2 doses so far). I just got approved by insurance to take rituximab, which I'm scheduled to start this weekend (7/21/19). I'm feeling a little rushed into moving to rituximab but I'm also tired of being on this rollercoaster not being able to live a normal life with no end in sight. What questions should ask my hematologist about the rituximab? Is it too soon? How do we know the dex and pred don't work at all? Do I need to make sure I have those 3 immunizations (hemophilis, meningococcal, & pneumococcal) before I start rituximab? I have a CBC lab tomorrow to check how things have gone since the 2nd IVIG and I'm going to ask if it can be changed into a full hematologist appointment and I feel I need some questions answered.
Advice on how to feel empowered is appreciated. I want to get out of this cycle I'm in but I don't want to rush into treatment.
Welcome to the forum.
My hematologist advised me to get those three immunizations, 2-4 weeks before starting rituximab. My hematologist said he was looking ahead to protecting me should rituximab not be effective and splenectomy become necessary. After rituximab ( the immune effects of which can last up to 6 months) one's response to immunizations is impaired so if one can get them before that may be better. Also, they need to check for hepatitis B and hepatitis C to make sure you dont carry these, as rituximab immune suppression can lead to active hepatitis if this is the case.
Rituximab can take a while to work. That being said, there are some studies that suggest it may be more efficacious if given with dexamethasone (google Bussel's work) and there may be an advantage to treating with rituximab within the first year of diagnosis.
Good luck and keep in touch.
When I did my Rituxan back in 2011, I was never told to get those shots. I was supposed to get them before my splenectomy, (which I had in 2006) but wound up getting them after.
I was diagnosed in 2004 and did Rituxan in 2011.
Cedrap, what are your counts like? You do need time to determine what is going to work for you. When your hema told you to get those immunizations, did he/she mention a splenectomy? If you don't want to go that route, you don't have to. There are a couple of other options for you to try before doing the Rituxan. I didn't have those when I did it.
I've been going back and forth between low normal and single digits. Today my platelets were 149 (*mini celebration*)!
My hematologist didn't tell me to get the vaccinations. That was something I read online. I asked her about it at my appointment today and she said that's more for a splenectomy, which we're not at now. I'm supposed to start rituximab on Sunday since the IVIG isn't a long-term fix. My Dr is concerned that my counts keep getting very low (below 5) and steroids don't seem to be doing anything.
There were a few of us ITPers in my area who got together, unfortunately that has gone by the wayside There were at least 2 in the group who kept a count around 5,000 - one even went to London for the indium? study & found her platelets were destroyed in her spleen so she came back here and had a splenectomy which didn't work so down her count went again - another was a married man w/a count of 5k and it didn't go higher, he was doing well & living life and he and his wife even adopted a daughter.
You have had quite a few treatments already and you have been diagnosed less than a month right? Do you know how many ITP patients your hematologist has/had?
I have a big mouth - I will let my doctors know if I'm not comfortable with something [usually a medication - one time told my hematologist I would not take prednisone when my count hit the gutter]. I'd not tell you what to do as it is your body - good luck with your decisions!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
About feeling empowered--read up on ITP and all the treatments (PDSA is a good place to start). Then you'll have some idea of the side-effects and potential help rates of the different treatments. For example, I didn't know anything until AFTER I'd had a splenectomy, which my hema optimistically thought would help me. I found out afterwards that the success rate of a splenectomy is not high, and even lower for middle-aged and elderly people. By the time I took rituxan, I knew something about the treatments. Neither the splenectomy nor rituxan (both in 2004) worked for me, but recovery from the laproxopic splenectomy wasn't hard, and for me the rituxan had no negative side-effects. (Or ANY effects!) I'm not sorry I tried rituxan.
I was told that pred, if it's going to work, will work right away. (It did for me.) I don't know about dex.
I am a 52 year old woman recently diagnosed with ITP. I have been having very low platelets since first of May. Prednisone did nothing for me for my platelets. I was at a 3 on platelets last week and after taking dexamethasone they went up to a 16. I will be starting the Rituxin transfusions on 7/23. I have not taken any immunizations. I am hoping this will increase my platelets. I am tired of being tired and know I have a long way to go to become more energetic. Any help to a newly diagnosed ITP is very much appreciated.
Yes, I have had 2 IVIG infusions and 2 platelet transfusions, as well as tried both dex and pred already and I was diagnosed less than a month ago. I don't know how many ITP patients my hematologist has or has had. Any recommendations for looking that up? Do I just ask the clinic?
I would like to have your big mouth! I'm working on advocating for myself!
Protocol used to say to take pred for 6 weeks before saying it didn't work. I don't know if that has changed since but your doctor seems to be in a rush. With dex it's supposed to be used every month for 4 to 6 goes before abandoning it, if you can tolerate it that is.
They use mycophenolate a lot in the UK but doesn't seem to be used as much over the water. I used rituximab last year along with chemo for lymphoma. My count is still around 120 six months later but my immune system is totally shot. It's not a drug to mess with. I'd far rather try one of the TPOs, eltrombopag or romiplostim than ritux.
JJ- I'm curious what do you mean that your immune system is shot? What are your symptoms, did you have serum sickness?
Also wondering how you knew you had lymphoma? Did you have low platelets first or lymphoma symptoms first?
My hematologist has suggested that I might want to scan for lymphoma- CT scan, MRI and bone marrow biopsy. One of his other patients was adamant that something was causing his ITP so did scans and found a bit of indolent lymphoma. I have thought about it but I have no symptoms of lymphoma and frankly I don't want to know if I have indolent lymphoma because then what do you do? You can watch and wait feeling like a ticking time bomb, or treat which is no picnic as you know. And treatment can cause its own set of problems. So I've opted to do nothing (I treat ITP with NPlate) but am very curious about how ITP and lymphoma go together. I also have Sjogrens syndrome, another autoimmune disorder which comes with a high risk for lymphoma, 20-40x higher incidence than the average person. Thanks for sharing your story and insight!
I didn't get any immunizations and although I'm not an anti-vaxxer, I generally avoid getting more than necessary. I didn't have any issues with Rituximab, however, and every person responds differently to it.
Poseymint, I have had an immune deficiency for years, and then ITP for about 15 years. The immune deficiency means I'm more prone to lymphoma. That started as an indolent skin lymphoma, so red patches that were biopsied. Then last year it transformed into an aggressive lymphoma and grew in a lung collapsing the lung, and needed treating. So chemo and radiotherapy later it's in remission but as the indolent variety cannot be cured I'm back on watch and wait. You're right, watch and wait is horrible. I wouldn't go looking for lymphoma, it'll make itself known if it's ever there.
Rituximab kills off the B white cells and I now have none. My immune deficiency means I have low T white cells anyway but the ritux and chemo has lowered them even more so I have almost none. I believe that Ritux is a heavy duty drug that ITP doctors don't respect enough.
Hello! I’ll add my story here as well. I got diagnosed with ITP on 8/31/19. I had some abnormal vaginal bleeding and went to get checked out 3 days before I got the call about my platelets being critically low and that I needed to go to the ER immediately (10k when I got blood drawn at my doctors visit). I got my blood drawn at the hospital on 8/31 and doctors came back and told me my levels were 3k. I was given Dexamethasone and they drew more blood two hours later and my levels were 2k. I woke up the next morning and they did more dex and tested me hours later and they rose to 6k. The next day I had more dex and they rose to 15k and I was discharged. They sent me home with 2 days of the dex steroid and the next day after getting discharged they tested my levels and they were at 35k. I was tested 3 days later and my levels were at 125k. I was finished with my dex steroid by the second day I was discharged from the hospital. So they tested me 8 days after my levels were 125k and they had dropped to 18k. I’m now on prednisone and since I’ve left the hospital I’ve been taking iron pills every other day and folic acid everyday. They want to do Rituxan on Friday 9/20/19 but does anyone think I would respond to it? I know nobody can predict but what are your opinions?
JJ- Thanks for sharing your story and insights, very interesting and helpful. I wonder if your immune system is coming back from the rituxin now? From what I know it usually wears off in 6 mos and the Bcells come back. I agree that rituxin is a risky drug and not to be taken without understanding the risk.
ManifestMe- People can have long remissions from rituxin. Hard to know if it will work for you. Most people have no side effects except a reaction to the infusion. If you get a scratchy throat, swelling in face or throat immediately tell a nurse to stop the infusion. They usually give more benedryl then and start up at a slower rate. It took me 9 hours for my first infusion because I had a scratchy throat reaction. Read about it under "treatments", it works about 60% of the time they say.
Several people on the forum have had serum sickness that was undiagnosed in the ER and dismissed by their own doctors. They had I believe permanent damage from it. (not sure if Janet has completely recovered) Not my doctor, nor anyone said a word to me about serum sickness when I was given rituxin. Good to be aware of the symptoms for anyone taking rituxin.
For me, Rituxin worked a bit, my counts came up to around 20. I was able to taper off of prednisone. I had one unusual side effect- water tasted so good, very refreshing. Then after 6 months my counts came back down to around zero and water tasted like water again. So not a big response. My hematologist didn't want to do it again for such a small response. I went on to Promacta then.
Thank you for the reply poseymint! I have done research and I’m still a bit nervous about this Rituxan thing because there are so many mixed opinions. I’m hoping that it works as I’m on 80mg prednisone and I’m extremely new to this ITP thing but I know that I don’t want to be on Prednisone for too long due to side effects. It seems steroids work well for me especially when my levels jumped so high within 3 days. But who knows! I know this will be a journey and I’m glad to have found a place with so many knowledgeable folks. Hopefully the Rituxan goes well and thank you for telling me about the serum sickness I looked into it more! I’m trying to find more Rituxan talk but I have searched and searched on here and it’s hard to find a lot of folks who have tried it and shared their experiences. I’m finding a lot of mentions but not in depth experience. I read and someone said promacta was for production problems. I’m pretty sure I have destruction problems so I don’t know if Promacta would help in my case. But I could be wrong I’m not totally knowledgeable in this.
ManifestMe, a 125 response from Dex sounds like a pretty good response. A good steroid response is good predictor to Rituxan success, but not great/perfect as you already have discovered. As I recall, one's chances are slightly better too if one hasn't had ITP long. The 2 to 3 baseline response is a little worrisome but I've not collected hard data on that subject. What I do like is your doctor putting on 80mg while receiving Rituxan. I'm pretty sure that concurrent Pred or Dex either one increases ones chances of Rituxan success.
On Promacta/Nplate. Those are good for either platelet destruction or production problems either one. Most everyone responds to them. Those that don't, more and more, it looks like they just need a higher dose than is commonly recommended.
Good luck with treatment tomorrow. Be sure to slow down the administration if you start having a reaction as Posey describes. This is important. Don't be brave. A slower rate can make all the difference.
Manifest, I was diagnosed in 2004 and had Rituxan in 2011. I had success right from the first dose. My counts kept rising and I was actually surprised when I got the last treatment. I had no issues with any of my appointments.
All of you I really thank you for your advice. Hal - your “don’t be brave” stuck with me during my experience and I definitely had reactions to the Rituxan. It took me 9 hours and every time I felt something off I said something. I had a scratchy dry throat for my first reaction and my second reaction I got hives. This happened each time about two hours in to the ritux. I got through it though! I ended up having 150/hr so very slow but that’s what worked for me. I feel like my nurse was trying to rush through so she kept bumping up the amount and that’s when I’d have a reaction (pretty sure she wanted to go home as they closed way before I’d be done with my ritux) I ended up having to finish it up in a different part of the hospital. I feel good I got my levels checked as I do weekly and they are at 192!!! From last Friday’s 18! I was so happy but mind you, I’m still on the pred and I know ritux hasn’t kicked in that quick. We shall see how my body responds. Thanks you guys!
Cindy- that is truly amazing! So happy for you! We all wish it were that easy! Haha!
My B cells haven't come back at all and the immunologist says they probably won't but for others they should come back after 6 months or so but hopefully the high counts last. Good luck to everyone trying ritux.
As I understand, Rituxan being a 'chimeric' there is a small amount of mouse 'debris' along with the Rituxan. This is what causes the sensitivity reaction. Hopefully the immune system will have antibodies ready to attack and destroy the debris before the next treatment. If not, probably will need to continue to have slow infusions.
I've got a list of about 45 folks from this forum that have had partial/full remission from Rituxan. I plan on going through the list and collecting information on reported baseline count pre Rituxan. Since that is less frequently reported, the final list will be much smaller. LOL, thanks for the idea on this topic.
I wanted to continue to update on my situation for those that are new to this and looking for answers as I was. It’s really nice to read about everyone’s stories and experiences. So far I have done two rounds of Rituxan, second round was October 2nd. First round was September 20th. I will have round 3 on October 9th and round 4 October 16th. Round two went great I was pretty worried that I’d react again but I had no reactions at all. I decided to stick with the slow infusion at 150/hr and was done in 6 hours. I’m thinking for the third I will bump it up since I had no reaction. My last count that I reported was 192 here on September 20th. I did one more draw after that before my Rituximab appt (for Oct 2nd) on September 30th and my count was 394. I’m still taking 80mg Prednisone daily. I got a call yesterday from my hemo and she would like to start the taper, she said my level is beyond healthy! which I’m glad for. Pred is definitely not fun at all. Sleeping is horrible and I have seen some spotting which I was super concerned about and took time to read and a lot of Sandi’s posts alleviated my worries as I learned that pred can cause weird menstrual and spotting which I didn’t know (still have an appt with an OB just to be sure). Other than that I’m doing good! My 80mg will run out on October 8th so I guess my taper starts October 9th they want me to do five days of 70mg, five days of 60mg, five days of 50mg, and so on until I get to 30mg and stop. Is this an ideal taper? Hoping all of this works.
Your adrenals need time to cope with dose reductions. Here is an abridged version of the standard UK Guidelines.
Gradual withdrawal for people who have:
Received more than 3 weeks of corticosteroid treatment.
Received more than 40 mg prednisolone daily or equivalent for more than 1 week.
During withdrawal, the dose of oral corticosteroids may be reduced rapidly down to physiological doses (about 7.5 mg of prednisolone or equivalent) and reduced more slowly thereafter.
If the problem has resolved and treatment has been given for only a few weeks.
Reduce by 2.5 mg every 3–4 days, down to 7.5 mg per day, then reduce more slowly, for example by 2.5 mg every week, fortnight, or month.
If there is uncertainty about disease resolution and/or therapy has been given for many weeks.
Reduce by 2.5 mg every fortnight or month down to 7.5 mg per day, then reduce by 1 mg every month.
These are the latest guidelines from uptodate .com
-5 to 10 mg/day every one to two weeks from an initial dose above 40 mg of prednisone or equivalent per day.
-5 mg/day every one to two weeks at prednisone doses between 40 and 20 mg/day.
-2.5 mg/day every two to three weeks at prednisone doses between 20 and 10 mg/day.
-1 mg/day every two to four weeks at prednisone doses between 10 and 5 mg/day.
-0.5 mg/day every two to four weeks at prednisone doses from 5 mg/day down. This can be achieved by alternating daily doses, eg, 5 mg on day one and 4 mg on day two.
My GP ( I think you call the PCPs in the US) went absolutely ballistic at the way my reduction had been handled by haemos and devised a plan for me. When I got down to 7.5mg a day it took me another 6 months to get to 3mg a day.
I strongly suggest you see you PCP about this asap.
If Poseymint (another member of this forum) sees your post she will back me up.
Thank you so much for the reply! I know you are extremely knowledgeable about tapers so I was hoping you would see my message! Thank you! I wanted to clarify though. I’m not sure if you thought I meant like stop taking the prednisone altogether once I hit 30mg but no that’s not what I meant. She would like for me to continue to take the pred at that dose just stay at 30mg but not stop taking it. I will definitely talk to other providers about this and mention the info that you’ve given me! I so appreciate it.
Diagnosed in 2014. I'm also a renal specialist nurse
Thank you received: 326
Never had Ritux but looks like it may be having an effect. Some people take months for it to kick in.
With count that high I wouldn't want to be on 30mg for long. My GP said once one gets down to 15-10mg a day that is when the 'fun' starts. I hate to be the bearer of bad news but you are in for a long haul getting of the wretched Pred.
When I was first diagnosed my count was 12. My GP put me on the sick for 2 weeks initially. I was actually off work for 11 months. All but those first 2 weeks related to steroids. Firstly from the side effects I has a hypermanic insomniac with the concentration span of a gnat and completely incapable of caring for patients and then from the withdrawal symptoms when I could barely function. I have never been able to cut my dose by more than 0.5mg/day/ month without suffering. I hope you have a better time of it than me.
mrsb04 that sounds so awful! How are you doing now? Are you in a watch and wait? Or remission? How long have you been dealing with ITP? I know the info is on the site somewhere sorry! Ehhh that made me a bit sad lol I didn’t think the journey of getting off of this stuff would be long or bad. But I’d rather be safe and do it all the right way! I didn’t think Pred would suck so much but it’s just mainly sleeping issues for me it’s pretty annoying but I know I need to go through these trials to try to get better. I’m hoping the Ritux does something for me! I will continue to update. Thank you!
Diagnosed in 2014. I'm also a renal specialist nurse
Thank you received: 326
I have had ITP for just over 5 years & been taking Eltrombopag (Promacta) almost 3 years now. I tried various drugs prior to starting it none of them successful apart from high dose Pred. If I could maintain a platelet count above 30 without meds I would be delighted but unfortunately I can’t and am too symptomatic if count falls below 20. I have just gone down to 1mg of Pred a day, my aim is to be off it by the end of the year.
Holy cow, 394 on second dose ! Beyond healthy is right.
Sandi has some real jewels of knowledge in her old posts. Haven't seen her here in awhile. Too bad. I guess one eventually gets tired of posting. Especially with an ITP remission. From memory, didn't her counts go down a bit on the third or fourth treatment? Then go back up again after it was all over?
The Platelet Disorder Support Association does not provide medical advice or endorse any medication, vitamins or herbs. The information contained herein is not intended nor implied to be a substitute for professional medical advice and is provided for educational purposes only. Always seek the advice of your physician or other qualified healthcare provider before starting any new treatment, discontinuing an existing treatment and to discuss any questions you may have regarding your unique medical condition.
Platelet Disorder Support Association 8751 Brecksville Road, Suite 150, Cleveland, Ohio 44141 Phone: 1-87-PLATELET | 877-528-3538 (toll free) | or 440-746-9003 E-mail: email@example.com