Failed treatments

Hello, It has now been a little over a year since I was diagnosed with ITP. I have gone through multiple infusions of IVIG, Ritux,which failed to make any difference, 2 hospitalizations for massive bleeds and most recently 3 1/2 months of Prednisone hell. The steroids initially worked but as we started to taper, my numbers dropped. I had very severe reactions to the steroids including a massive swollen face and neck and back pain to the point of having to be off of work for 6 weeks. My Hematologist added supplements in an effort to boost my platelets to no avail. I am now off the Prednisone and back to getting IVIG every 21 days. It has been suggested that I get a splenectomy to which I have refused. My spleen has been scanned and it is of normal size and seemingly healthy and I have no reason to believe that removing it will give me any relief from low platelets. I guess I am now at a point of accepting that for the rest of my life I will be chasing a platelet count and in a constant state of wondering when the next 7 hours of infusion will be. This is very sad to me as this diagnosis has changed my entire life. I am a member of PDSA and read postings often, I have not found many who have gone into spontaneous remission. I am adjusting, but it is difficult and at times very frustrating and depressing.

Rose:

Have you thought about Promacta or N-Plate? Either of these might work for you. If they get you to a safe level (between 30k and 50k), you could lead a perfectly, normal life.

Remission is always a good goal, but failure to achieve that does not mean a normal life isn't possible. Lower your expectations a bit and you will feel much more upbeat.

I've said it before and I'll say it again. Remission is always possible, even with the seemingly rough cases. A year of ITP isn't very long, although I know it seems that way to you. It took me 8 years to get a long remission. There is data that suggests that N-Plate does sometimes cause remission.

Hi Sandi, I have talked with my Hematologist about N-Plate and she tends to think it is best to give to patients who have had their Spleen removed. I am against the Splenectomy totally. I am scheduled for IVIG infusion this Monday 4/22/13 as my platelet count had dropped into the teens. I will likely have an appointment with her in a month or so and at that time will re visit the N-Plate subject. Since I have only been off of the Prednisone for 3 weeks I am still healing from the beating my body took and would prefer to wait a bit before putting more medication on board. Thank you for your encouragement and kind words. I know I am not unlike many here who are a bit discouraged and do know how blessed I really am. Thankfully I am still able to work and have great insurance which covers the very expensive treatment for ITP.

Rose:

N-Plate and splenectomies have nothing to do with each other. It sounds like she is just pushing her own personal preference which may not be what is best for you. IVIG is long and pretty temporary and is also putting more drugs into your system.

You will get to a point where managing this gets easier. It just takes time to find the right treatment.

Rose,

I am also refusing splenectomy even though my first doctor was pushing for it and wasnt willing to do anything else after i failed rituxin. i was very stressed and scared. i read an article on pdsa about waiting a year before even considering it. I went to an ITP specialist last week who is willing to work with me using other treatments. Right now I am on Nplate and cyclosporine. He said it could take some time to kick in and if these drugs do not work we will try something else. I think you need to get a 2nd opinion if your doctor will not do anything else besides splenectomy.

Hi Sandi, I have read a lot about N-Plate and know it is given to patients who still have their Spleen. My Hematologist initially agreed with me about Splenectomy but she does seem to be leaning toward the surgery. She knows that I do not want this surgery and she is not pushing too hard, but at this point the only thing being offered is IVIG. I am giving my body a rest after the hell of taking Prednisone and she is fine with this. I know the IVIG only lasts 3-4 weeks, but at least it gives me a little reprieve from the low counts.I will continue to post as to where I am in this journey. Thank you so much for your support and encouraging words. Rose

Hello, I am considering a second opinion but for now will wait until I feel my body has recovered from the Prednisone war which took it's toll. I will revisit the N-Plate subject with her again at my next appointment. Please keep me posted as to your response to the N-Plate and Cyclosporine combination..I so hope this works for you! I would love to know how long you have had ITP and the treatments you have tried. Thanks again and take care. Rose

Actually Nplate works better in those with a spleen. People who have had a splenectomy almost always need a higher dose of Nplate than those who still have their spleen. But it is a serious medication and it is usual in the UK for other drugs to have been tried before resorting to using it. My haematologist would probably suggest mycophenolate and then rituxan before Nplate.

I'm certainly not recommending you have a splenectomy, Rose, but I don't think a scan can show whether your spleen destroys platelets or not. A healthy-looking spleen is capable of destroying platelets. (Of course, once you have that healthy-looking, platelet-destroying spleen out, your liver may decide it wants to destroy platelets. That is probably what happened to me.)

Ann, she's already had Rituxan. Didn't work.

Before my splenectomies I had Nplate and am on it again. It has worked both before and after the splenectomies. If I were you I would look more into Nplate or Promacta. I tried Promacta before my first splenectomy and it didn't have much success but it does for a lot of people.

Rose,

I was diagnosed with itp on December 28th, 2012 even though looking back the bruises started in September. I didn't think too much of it until I had petichae and blood blisters in my mouth. I have tried IVGs which worked 3 times temporarily, prednisone unsuccessfully, Rituxin unsuccessfully and Nplate ( which first doctor said was unsuccessful but new doctor said the doseage may not have been high enough and may not have been on it long enough.

Please let your body heal after prednisone. I was a mess for a few weeks after that... So tired, achy and depressed. I will never go back on it. You will feel better though soon though!

Chasty,

I'm glad you brought that up. I was wondering if you could have different reactions to Promacta and Nplate. Do I understand correctly that Nplate is working for you but Promacta did not?

Rose,

I meant to tell you this earlier, but I felt that exact same way as you a few weeks ago. I don't think the prednisone withdrawal is helping you too much either. After I saw the itp specialist last week. he said this is not a death sentence. however it has put things into perspective for me. I am going to live my life as normally as possible. I decided I am not doing any more IVIG treatments even if my counts are low. Luckily though I do not seem to be a bleeder just a major bruiser. I'm going to modify my lifestyle a little bit to avoid extreme dangers. I started taking my dogs for walks everyday after work and this is helping me clear my head. I also think connecting with others on here has been helping me. I am not alone in living with this disease. I have a great support system of friends and family but sometimes I feel that unless you have had this disease you don't truly understand it so connecting on pdsa has been great!

Vdeutsch85,

You are correct. Nplate is currently working for me and Promacta did not. I am meeting with one of my hematologists next week on Tuesday to see what she thinks we could do besides Nplate to bring my counts up and try to hold them steady. Currently I'm on a back and forth dosage with Nplate to keep my counts up. I only took Promacta prior to my first splenectomy.

Chasty:

If you are responding to N-Plate, why do something else? N-Plate has actually caused remission for some people, according to recent research.

Thank you for sharing. My first hematologist said if you respond to one you will respond to the other, but I guess not true. Maybe if Nplate doesn't work I can ask to try promacta

You're right, it's not true. I've seen people here who have not responded to one, but did respond to the other.

Sandi,

Sorry I haven't responded sooner. Life has been hectic and somewhat overwhelming. I wanted to see if there was anything else that might work besides Nplate so I wouldn't have to go to the doctor's office each week.

What else have you tried? Rituxan? Imuran?

Chasty,

I am currently on cyclosporine. I've been on it for a month. My counts have been very good!

I've had prednisone, ivig, platelet transfusions, 2 failed splenectomies, nplate, promacta, rituxan, cyclosporine & vincristine. Out of all of that nplate is the only thing that seems to work at this time.

Have you tried Cellcept (or its generic)? It is similar to Cyclosporine in action.
I've used Cellcept twice now; first time was for a couple of years. At that time there was no generic and the copay was a tad high, so I switched to Cyclosporine. Cyclosporine eventually just stopped working...basically stopped overnight. I used Promacta for 3 years after that.
2012 insurance change had me looking for a lower cost treatment, switched to generic Cellcept at $10 a month. It has been working well for a few months now. The ITP symptoms are virtually non-existent and I only get checked once a month....which will change back to twice a year shortly.
Note: A count over 30k, with few symptoms equates to 'working well' for me.
.

I have not hear of Cellcept except in passing. One of my hematologists thinks that Nplate and/or Promacta would be the best thing for me. She believes that the other drugs besides those would have worse side effects for me. (Yes I have 2 that I deal with at Vanderbilt University Medical Center - Vanderbilt Ingram Cancer Center.) The other that I see weekly to get my CBC and Nplate from believes that Promacta won't work as it did not work for me in the past when I was on it. Neither have brought up Cellcept.

You don't have to wait for them to suggest it. You can make the suggestion. Most doctors are agreeable to patient suggestions unless they have a good reason why it's not a good idea. The thing is though, if this treatment is working, you might not really want to rock the boat and use something else. CellCept may not work quickly and you'd be spending time with low counts unless you did both at the same time for a while.

Both hematologists I see are very good about suggesting something they think would work best. One of them I even saw last month I directly asked her what she thought would be the best treatment plan and what other options she thinks would work as far as treatment. Both hematologists believe that Nplate is my best bet at this point in the road (roller coaster). I have a good relationship with both of my hematologists, they are both through the same clinic - just in different locations, but they do communicate with each other aboout me. Nplate at this point is doing what it's supposed to do but if I were to go without treatment my counts would crash near zero again. They were zero when I was first diagnosed last year in January.

Hello, just a follow up to this initial post. I am still getting IVIG about every 21 days as my platelets drop to around the mid teens by the third week. I still suffer the effects of the massive dose of Prednisone I was on for almost 4 months, but am very slowly feeling better. I was never told about the body & muscle aches and pain that go along with that devil drug. Never again! My Hematologist wants me to have my Spleen removed and I flat out refuse unless she can show me that it will work, and she had no data to support this. So we are sort of at a standstill except for the IVIG. I have stopped looking at my numbers as I am drawn every week and that really helps me psychologically. I know I will receive a phone call when I need infusion. As we all know this is a mental game as well as physical and we are all dealing with ITP as best we can. I am so grateful to have all of you for support.

Chasty:

I think a lot of us would agree that N-Plate is probably your best option right now (as your doctors do). We made other suggestions because you were not all that happy having to get weekly shots. That's why I suggested that you talk to your doctors about alternatives.

Rose:

Yes, it is a psychological issue too. I'm glad you found a way to deal with it.

Hi Sandi
, Well I have finally come to a decision regarding my current Hematologist. I have an appointment for a second opinion next week. The final straw was last week when I at the infusion center and had just completed a 7 hour round of IVIG, she approached me and said, "Well, have you decided yet?" I did not even know what she was talking about so I asked her what she meant. She said, "About your Spleen." I looked at her and said I am not having my Spleen removed, at which point she said "So your just going to do IVIG every 3 weeks?". By the time I got to my car I was sobbing..enough is enough. I have an appointment with a Hematologist within the Kaiser system, but a totally different group of Hem/Onc Physicians. I need to hear from someone different that my only option at this point is Splenectomy..which I doubt he will say to me. Remember all I have had is Ritux and Prednisone at this point, plus IVIG about every 21 days. Wish me luck and I will certainly update my status once I have seen the new Hematologist. Rose

Rose, don't let the doctor bully you into something you're not ready for! When I was first diagnosed, I got a second opinion too. This doctor told me the same thing my hema told me. I decided not to go the splenectomy route since they couldn't tell me that was the issue. The only reason I had it done was because I wanted off the pred.

Good luck with your appointment!