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.
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