New to all of this

On the new hematologist front, I've been considering what I want to say to the new one. Obviously I'll give him my history, including allergies, sinusities, and everything leading up to my ITP diagnosis and after.
I'm planning on being very upfront, and talking about looking at autoimmune holistically, that I have a conventional PCP, I'm supplementing with a natural path, I'll likely be taking vitamins and other supplements, and that I'm ultimately looking for a supportive health care team so that I can make the best decisions. Additionally, I'm not looking to be rushed into anything (even if that means I find myself needing IVIG in a pinch), and I intend to keep my spleen.

Here's my question. I know I need to self advocate. Does this come across as being to inflexible? This is what I'm looking for, but I don't want them to think "geez this guy is going to be annoying", and granted, if that's what they're thinking, I probably shouldn't see them anyway.

Thoughts?

By the way, the daddy-daughter dance went great.

Count today was 58. Not exactly inspiring... might just need to get used to that, since I felt the same about last Monday's 33. At least the daily average was better! After 12 days at 70mg Pred starting from 10, I was "hoping" to be 80. Since 8 days from 16 put me at 87. I'm sure there are lots of factors. One way or another, it's hard not to feel better about the idea of getting off Prednisone.

Anyway, staying at 70 for at least another week. Next count is Monday. Seems excessive... We said maybe drop to 65 after the next count. I really don't expect much to change over the next two weeks, but I guess the more data points, the better of an idea I have of what's going on, though again, so many factors can influence that, I'm not sure that it's worth getting the data points. Just giving myself a ~5 days bruise on my inner elbow.

I forced his hand a bit, by telling him I currently have no desire to get a splenectomy. Regarding Rituximab, I also asked his office to research if there's a test for JVC virus. I know it's incredibly unlikely to develop PML, but hey, more information the better. So many people get this thing for things other than ITP, that generally, the safety of it isn't all that bad.

Neither of us thinks Prednisone will kick me out of this. I have the 2nd hematologist on Friday, so if nothing else, I'll have a second opinion, and who knows, maybe I'll be looking at NPlate or Promacta, or something else instead?

Well...most conventional doctors won't listen to talk about natural treatment methods. You can try, but you might not get too far. Mine always cut me off. Don't be surprised if you don't get to say too much about that. They also usually don't want to hear about what you think led up to it. Maybe you'll get lucky since he did win a compassionate award.

I would stress what you do and don't want to do regarding conventional treatments. Try not to get any preconceived notions about what they might be thinking. You may be wrong and you're already thinking negative thoughts about this guy. This is a good thing coming up! If it works out, great. If not, there are more doctors around. The goal is to get a doctor who will work with you and be a team player, and also one who will calm your fears. It's good to know what you want to say ahead of time but don't play the scenario in your head. Let him take the lead too and hear what he has to say. You only get so much time in there so use it wisely.

Yes, there is a test for the JC virus. There is still a risk of PML even with a negative on the JC virus, but the risk is very small and usually affects people who are immunosuppressed (not sure how much Prednisone would affect that).

I don't think you'll get much from Prednisone either. You are responding, but the response isn't all that great.

Sandi wrote: Yes, there is a test for the JC virus. There is still a risk of PML even with a negative on the JC virus, but the risk is very small and usually affects people who are immunosuppressed (not sure how much Prednisone would affect that).

I don't think you'll get much from Prednisone either. You are responding, but the response isn't all that great.

Yeah, I know

Regarding JC, do know if it's a blood test or spinal tap? Even with a positive, I think the overall chances are really small, I think I saw something like .004% on one study where like 25 out of 125,000 people got it.

So far, I haven't heard of a deadly brain virus associated with NPlate or Promacta.... Just saying.

And you bring up a good point. I'm not sure how far I should be weened off of Prednisone before possibly receiving Rituximab. Any thoughts? Low as possible seems ideal to me.

Good luck with new doctor! Second opinion is always good. I agree with Sandi on how conventional doctors respond to talk about natural treatments. But hey, anything you can do to improve your overall health can't be bad. And you'll know that you've done everything you can do. Also its important to be yourself and express yourself, building a rapport with the doc is an important part of the whole journey.
When I brought up alternative ideas to my hemo, I got the blank stare with deafening silence- tumbleweeds blowing through the room. But for so many other reasons my doc is perfect- he knows the science, he knows the treatments, hes almost always right in what he thinks, really brilliant sometimes. And when I disagree, he'll usually go along with what I want. He lets me make my own decisions- I find that empowering. I even feel like the treatments work better with less side effects if I am in a good agreement emotionally to taking the drug. Plus I like how my hematologist doesn't get excited when my counts go low, hes very calm about it.
In time you'll get to know what your body is doing, and where you feel safe with numbers. Probably like you said, seeing what the prednisone does before going on to Rituxan(or next thing) makes sense. Hope the pred works for you!

Thanks! I'm hoping for more than a second opinion, but if nothing else, that's the minimum I'll get.

I decided to be open with my current hematologist yesterday, and spoke briefly about the naturalpath I'm seeing. He actually seemed slightly interested, and I basically explained that I'm using it to compliment everything else, not replace primary care, or anything, and that the focus would likely be reducing inflammation and promoting overall health. He completely admitted he is focused on hematology, and that his expertise doesn't go outside of that scope. I give him a lot of credit for that. I just wanted him to know I might be on additional vitamins and supplements.

I still have a hard time accepting Rituxan. I mean, PDSA lists 3% of ITP patients getting extremely ill or dying from it. and while I know those odds are small, it just feels like with all the different drugs, there's gotta be another treatment with better odds. I don't know this for a fact, but it almost feels like my odds are better to do nothing, than accept 3%.

So, it'll be interesting to see what the 2nd hematologist has to say.

ytsejam02 wrote: Thanks! I'm hoping for more than a second opinion, but if nothing else, that's the minimum I'll get.

I decided to be open with my current hematologist yesterday, and spoke briefly about the naturalpath I'm seeing. He actually seemed slightly interested, and I basically explained that I'm using it to compliment everything else, not replace primary care, or anything, and that the focus would likely be reducing inflammation and promoting overall health. He completely admitted he is focused on hematology, and that his expertise doesn't go outside of that scope. I give him a lot of credit for that. I just wanted him to know I might be on additional vitamins and supplements.

I still have a hard time accepting Rituxan. I mean, PDSA lists 3% of ITP patients getting extremely ill or dying from it. and while I know those odds are small, it just feels like with all the different drugs, there's gotta be another treatment with better odds. I don't know this for a fact, but it almost feels like my odds are better to do nothing, than accept 3%.

So, it'll be interesting to see what the 2nd hematologist has to say.

It sounds like your last count was nice and safe. It's nice that for the pain of taking steroids, you at least get a decent response!
You sound exactly like me when I was deciding between Promacta and Rituxan a little over a year ago. I was totally hung up on that 3% too You just make the best decisions you can as you go along and over time you may change your mind about what you want to try. Good luck with the new hematologist. Hopefully you will find a less stressful environment with the new doctor!

momto3boys wrote: It sounds like your last count was nice and safe. It's nice that for the pain of taking steroids, you at least get a decent response!
You sound exactly like me when I was deciding between Promacta and Rituxan a little over a year ago. I was totally hung up on that 3% too You just make the best decisions you can as you go along and over time you may change your mind about what you want to try. Good luck with the new hematologist. Hopefully you will find a less stressful environment with the new doctor!

I suppose it's decent. I don't have much to base it on. My hematologist and I certainly weren't impressed. But will I take it? Yes. The only issue I've had on Pred (knock on wood) has been muscle loss. Yeah, I get hungry at odd times, but we don't have a lot of excess food kicking around our house on principal, and I'm just trained to eat at specific times, so no weight gain at all thankfully. Don't get me wrong, I want off it.

I've also read that generally people who react well to Prednisone have a better chance of succeeding at Rituxan, so, given my middle of the road response, it's making me think Rituxan isn't worth trying, at least not as the next step.

Anyway, if you don't mind my asking, did you go with Promacta or Rituxan?

I chose Promacta. At the time it sounded a little more positive (working on production, not destruction, lol). I like to travel and didn't want to try Rituxan and have the concern of not being able to receive immunizations for at least 12 months following treatment. (In addition to my PML fears, haha)

I've been on the Promacta a little more than a year and have been doing okay so far. (My thread is the "My Promacta Journey" so you can see the ups and downs I've had along the way).

I'm going to consult with an expert later in the month, but I can say that I'm a lot more amenable to the idea of Rituxan now than I was back when I was originally deciding on treatments. Time changes our views of risk, I suppose! There is no one right way of going about this.

Jay:
Weight gain from steroids isn't just from over-eating. Prednisone causes water retention, so that could possibly occur at some point. Avoiding salt and sugar can help, but on high doses, it usually happens. Most people get the moon face too, and that is caused by muscle distribution due to steroids. I'm telling you so that if it happens, you won't blame yourself for something that you did. Sometimes it's unavoidable. Those things will go back to normal after the drug is tapered and stopped.

It's great that your side effects are minimal so far. You might be one of the lucky ones who gets by without the horrors.

Sandi wrote: Jay:
Weight gain from steroids isn't just from over-eating. Prednisone causes water retention, so that could possibly occur at some point. Avoiding salt and sugar can help, but on high doses, it usually happens. Most people get the moon face too, and that is caused by muscle distribution due to steroids. I'm telling you so that if it happens, you won't blame yourself for something that you did. Sometimes it's unavoidable. Those things will go back to normal after the drug is tapered and stopped.

It's great that your side effects are minimal so far. You might be one of the lucky ones who gets by without the horrors.

Oh I know. Not getting the moon face. Yet. In fact, I've been making an effort to drink more water, milk, etc.
I appreciate your concern, and always value your input! I do expect something else to pop up the longer I stay on it, so really, I don't even want to find out if I'm a lucky one. I want to get off it and move on, just trying to find the courage to do it. There's something less threatening about a little pill you take in the morning, vs something like Rituximab, even though it's likely much worse.

I've been reading through momto3boys Promacta thread. The rollercoaster sounds familiar! But right now, that would be my preference.

Never put on a gram in the 3 years I've been on steroids but hate the other side effects. Am currently on antibiotics to clear up a very nasty cellulitis in my leg from the tiniest of scratches

This is not meant to scare you, Jay or anyone, but wow I didn't know Rituxan was dangerous for people who have rheumatoid arthritis?! The risk of PML is higher if you have RA? I'm reading the Mayo Clinic website- I had never read all these risks and side effects of Rituxan before. It also mentions Lupus but doesn't specify what the risk is. Just "tell your doctor if you have lupus".
I had one of the rare side effects. That was my sense of taste changed- water tasted delicious! I missed that when the Rituxan wore off at 6 mos. As I've posted before, I had a partial response, counts were up to 25K for about 6 mos. I wanted to do another round but my hemo wouldn't allow it. He said the risk is too great for a low response. I got a second opinion and second hematologist agreed I should not do Rituxan again and suggested Promacta. I'm glad now that I moved on to the TPOs. I've had the best results with them, and the fewest side effects. They were designed for ITP, and in my opinion they have been good drugs. Hoping the cost will come down one day.

www.mayoclinic.org/drugs-supplements/rituximab-intravenous-route/precautions/drg-20068057

Posey - usually the risk of PML is higher in those with other autoimmune disorders because they either tend to be on immunosuppressants or have low white cells. A healthy individual has a better chance of avoiding complications.

I wouldn't risk Rituxan again for a small response either. Too toxic to keep putting in your body.

Sandi wrote: Posey - usually the risk of PML is higher in those with other autoimmune disorders because they either tend to be on immunosuppressants or have low white cells. A healthy individual has a better chance of avoiding complications.

I wouldn't risk Rituxan again for a small response either. Too toxic to keep putting in your body.

I've been reviewing my labs. My white blood cell count is actually on the high end. Could be allergies, but from my research, probably due to the Prednisone.

poseymint wrote: This is not meant to scare you, Jay or anyone, but wow I didn't know Rituxan was dangerous for people who have rheumatoid arthritis?! The risk of PML is higher if you have RA? I'm reading the Mayo Clinic website- I had never read all these risks and side effects of Rituxan before. It also mentions Lupus but doesn't specify what the risk is. Just "tell your doctor if you have lupus".
I had one of the rare side effects. That was my sense of taste changed- water tasted delicious! I missed that when the Rituxan wore off at 6 mos. As I've posted before, I had a partial response, counts were up to 25K for about 6 mos. I wanted to do another round but my hemo wouldn't allow it. He said the risk is too great for a low response. I got a second opinion and second hematologist agreed I should not do Rituxan again and suggested Promacta. I'm glad now that I moved on to the TPOs. I've had the best results with them, and the fewest side effects. They were designed for ITP, and in my opinion they have been good drugs. Hoping the cost will come down one day.

www.mayoclinic.org/drugs-supplements/rituximab-intravenous-route/precautions/drg-20068057

I think it's more heavily prescribed for people with RA, which would certainly account for the higher rates of PML.
Your sense of taste changed? That's interesting! I'm sure that's rare, and I'm assuming not a big deal?

Don't worry, you're not scaring me anymore than I'm scaring myself. Which I'm quite good at.

Well, if nothing else, I just confirmed that Promacta is covered by my insurance. Once authorized of course. So, that's good news.

Jay,
At the end of the day you are going to have to find a doc that you trust and follow his/her instructions. I have followed this thread since you started it. I am a few months farther along in the process (October 2016 diagnosis). Pretty much every drug that they give for ITP has a list of horrible side effects. Talk with the doc, ask what side effects he has seen in his other patients. Every doc has their own method and progression based on previous patients. There are a couple of people in posts above that's doc said no to a second round of Rituximab. My doc says he has had several respond to a second round after the first round response was mild. Just make sure the doc has ITP experience and will sit and discuss the options with you. At the end of the day you have to choose your path based on the doc's direction and your comfort level.
So far I have done Prednisone, Rituximab, and currently taking Promacta.

D.Mann wrote: Jay,
At the end of the day you are going to have to find a doc that you trust and follow his/her instructions. I have followed this thread since you started it. I am a few months farther along in the process (October 2016 diagnosis). Pretty much every drug that they give for ITP has a list of horrible side effects. Talk with the doc, ask what side effects he has seen in his other patients. Every doc has their own method and progression based on previous patients. There are a couple of people in posts above that's doc said no to a second round of Rituximab. My doc says he has had several respond to a second round after the first round response was mild. Just make sure the doc has ITP experience and will sit and discuss the options with you. At the end of the day you have to choose your path based on the doc's direction and your comfort level.
So far I have done Prednisone, Rituximab, and currently taking Promacta.

I'm seeing a second hematologist tomorrow, so fingers crossed!

Does that mean 1 round of Rituximab didn't work for you? How's it going on Promacta?

After my round of rituxin I was slowly climbing. After 1.5 months I got sick. Regular doc thought it was sinus infection and gave me an antibiotic. Turns out it was the flu and the antibiotic can cause platelets to drop in rare cases. I ended up in the hospital with a count of 3 and lots of very unpleasant symptoms. After 1 week on promacta I was at an unbelievable 140 up from 10. I go in next week for a count, it has been a month since the 140. I am not having any symptoms so I suspect I will have a good count. I am taking 25mg daily. My hemo doesn't see promacta as a good long term solution due to cost, but I found out my current insurance pays 100% for it so I am going to discuss it with him. Insurance paid $3700 for a month supply, I could not do that personally so I understand his thinking. At my last visit we discussed second rituxin and losing the spleen.

Jay - yes, Prednisone can cause the white count to go up. You are correct!

D.Mann - the flu can also cause counts to drop. You were double-whammied.

Jay- re: how my sense of taste changed. It was not a bad thing, actually kind of a fun side effect. I especially noticed it with water. Water tasted like water but the experience was enhanced somehow. Water was more refreshing, more exciting (for lack of better words) especially ice water. My sense of taste was somehow heightened. And it was very clear that heightened sense of taste was from Rituxan. Because it began around the time of the infusions. Then after 6mos my counts gradually dropped from a steady 25 to below 10, and as they dropped, I lost the enhanced sense of taste. Water tasted like plain old water again. sad- haha

Sandi wrote: Jay - yes, Prednisone can cause the white count to go up. You are correct!

That seems so bizarre! High WBC means my immune system is overactive, no? That seems like it should be a bad thing for my platelets!

I never gave it much thought. It was just a fact. High white cells are better than low white cells...added protection. It's not necessarily bad for platelets. Prednisone works for many people regardless of what the white cells are doing.

It can also cause calcium, potassium and magnesium loss, so be sure to get those checked out too. Add bananas to your diet.

Sandi wrote: I never gave it much thought. It was just a fact. High white cells are better than low white cells...added protection. It's not necessarily bad for platelets. Prednisone works for many people regardless of what the white cells are doing.

It can also cause calcium, potassium and magnesium loss, so be sure to get those checked out too. Add bananas to your diet.

Bananas are a staple in my house!

My current plan was to start ramping down on Prednisone. 65 starting Monday. I'll get another count that day two, after about 17 days on 70. I'm assuming the numbers won't be terribly high, which to me would imply some semblance of a plateau. 65 will be at least for a week.

That should give me time to figure out my next move, which I'm pretty sure I know what I want (Promacta). I just need to get the support of the Dr.

D.Mann wrote: After my round of rituxin I was slowly climbing. After 1.5 months I got sick. Regular doc thought it was sinus infection and gave me an antibiotic. Turns out it was the flu and the antibiotic can cause platelets to drop in rare cases. I ended up in the hospital with a count of 3 and lots of very unpleasant symptoms. After 1 week on promacta I was at an unbelievable 140 up from 10. I go in next week for a count, it has been a month since the 140. I am not having any symptoms so I suspect I will have a good count. I am taking 25mg daily. My hemo doesn't see promacta as a good long term solution due to cost, but I found out my current insurance pays 100% for it so I am going to discuss it with him. Insurance paid $3700 for a month supply, I could not do that personally so I understand his thinking. At my last visit we discussed second rituxin and losing the spleen.

DMann, I honestly don't know that I think of any of these drugs as long term solutions. I mean, if Rituxan worked for me, let's say for a year, does that mean I keep getting it done yearly (give or take)? Of course the hope is always no, but in that context, it doesn't sound like a long term solution either.

And who knows what will be available 5 years from? Or 10?

25mg/day sounds great! half the initial dose to my understanding. Do you talk to your Dr about going lower, with a potential ween?

Just got back from the 2nd hematologist. I apologize for the long post.

It was interesting. First the count... 40. Boo. Down from 58! 70mg of Prednisone for what? No reason at this point. Was planning on starting the taper Monday, now I'm convinced I might as well.

I spoke to him for probably 45 minutes. We talked about treatment philosophy. He's conservative, which is what I was looking for. He did admit to being "old school" in that he believes splenectomy is a perfectly valid option. That doesn't surprise me, given his age. It's fine, I can still say no. And who knows, it might still be an option somewhere in the future, but I certainly wouldn't do it past a certain age. His major concern is long term toxicity with treatments, which is mine as well, so I really think we are on the same page.

He even admitted that Dr's are more the problem for ITP patients than ITP is.

That being said, he wants me to ween of Prednisone, and try some IVIg infusions. They do it on premise, so no hospital stay. Just a 2-3 hours a couple of times per administration. I see the side effects on this site. Generally speaking it seems safe. He was pretty adamant that it was pretty darn safe. Of course, he said Rituxan was also pretty safe, just not as adamant as he was about IVIg. And honestly, I know he's not wrong. A very high percentage (97) don't get extremely ill or die. He didn't seem opposed to Promacta or NPlate. I don't know why Dr's get hung up on cost. They don't pay for it.

Another positive was, I asked him when this would happen, he said probably 1 or 2 weeks. I asked if he needed to see me again before that, he said no. For me, that was a weight off my shoulders. I know I could say no to my other hema, but I don't know, just didn't feel right.

I have one more visit with my existing hema on Monday, and it's actually with a covering Dr. Just to get the count. Unfortunately it's too late to cancel. I have another one for the week after, which I'll cancel.

He told me he's treated maybe 500 ITP patients in his career. Most times he does not see refractory. I'm pretty sure people have told me this here, but it's still nice to hear.

Anyway, I considered it a positive experience, aside from that damn count!!

If anyone has anything to add on IVIg, or anything else I said above, I'd love to hear their thoughts.

Hmmm. IVIG is fairly safe, probably the safest treatment there is as far as long-term side effects, but I don't understand the reasoning behind suggesting it. It's pretty short-lived and is usually only used for a rescue treatment if counts are unsafe. The main side effect that we see here is aseptic meningitis which can be pretty miserable if you get it, but it goes away after a few days. Here is a list of possible side effects:
www.drugs.com/sfx/immune-globulin-intravenous-side-effects.html

It probably is best to taper off of Prednisone. It's not getting you very far. I'm glad he's okay with N-Plate and Promacta because those are probably your best bet.

Sandi wrote: Hmmm. IVIG is fairly safe, probably the safest treatment there is as far as long-term side effects, but I don't understand the reasoning behind suggesting it. It's pretty short-lived and is usually only used for a rescue treatment if counts are unsafe. The main side effect that we see here is aseptic meningitis which can be pretty miserable if you get it, but it goes away after a few days. Here is a list of possible side effects:
www.drugs.com/sfx/immune-globulin-intravenous-side-effects.html

It probably is best to taper off of Prednisone. It's not getting you very far. I'm glad he's okay with N-Plate and Promacta because those are probably your best bet.

I tend to agree on the TPO-RAs, again, especially given my bleh response to Prednisone.

Regarding IVIg, he told me several things. He said, we won't know how long it lasts until we try it. I'm a little skeptical on that front. But I'm keep my fingers crossed. He said he has given people 1, 2, or 3 rounds, and their platelets stayed up. So if there's any chance of that, I'm willing to take it relative to the safety.

An as a side note, turns out my wife has a 2nd cousin who was diagnosed with ITP as a teen. She apparently received IVIg once every 2 months for years. At least until she got pregnant and her ITP went away. Lucky her!

The other side effect for me is purely mental. If I go thru a process similar to Rituxan, maybe I won't be so scared of it? But again, doesn't seem to make sense at this point.