Another new(ish)bie...

Hi all
I'm 39 and was diagnosed at the end of July after knowing something wasn't quite right - I had a ton of bruises. At that time my platelets were 20,000. They started me on prednisone 100mg per day for 4 weeks and then I slowly tapered. 1 week after I started the prednisone, I went up to 91K. My doc had told me that even 1 glass of wine would slow my platelet production. But - since I was new to this and liked my wine, I thought I'd be ok with just one glass... The next week I was down to 70K. So - haven't had a glass of wine since. What are everyone's thoughts on alcohol?
Anyway, I did fine until I started to taper off the prednisone (which near the end was not fun - hot flashes, racing heart-thought I was starting early menopause). I started to drop pretty quick with the taper, so my doc decided to do IVIG infusions. I was down to 34K the day of my first infusion. I had read to be well hydrated to avoid a headache - so I did, but still got horrific headaches. After two IVIG infusions (beginning of Sept) my counts have hung around the 65-70K range. I'm so over this! The not knowing is killer! Not knowing what my next count will be, not knowing what the next treatment step will be or should be or what will work for me... UGH! I know it could be a lot worse and I have to remind myself of that. I was tested for all of the other things that can cause ITP and was all negative. I had a weird viral infection about 5 weeks before I was diagnosed and they say that's what caused this.
So now here I am... was 75K one week, 45K the next, 67K the next. Now its been almost 2 weeks since then and I'm noticing tiny pinpoint bruises on my arms - like little broken blood vessels. I always read that you don't need to treat until you're symptomatic. What exactly is meant by that??? My only symptom has ever been bruising. It's Wednesday and my next blood draw isn't until Monday... Do I wait?
And now for an extra off-the-wall question... at my job, we are going through the process of re-examining our benefits. I have myself and my 3 kiddos on my health insurance. We've always been healthy, so I chose the high deductible plan (pre ITP) - the one in which I can have an HSA account (to put my kids in braces). Now, after my $60K worth of infusions, I'm wondering if I should choose the low deductible plan... $2000 deductible vs $4000 deductible. ???
I know I'm jumping around... but I have one more question. One doc suggested rituxan next and the other suggested IVIG again. The IVIG doc said if we flood my spleen with IVIG hopefully it would come to expect it and would stop destroying my platelets. The headache sucked, but I otherwise tolerated it well. It scares me to try something else new... Like I don't want to push my luck. Can someone give me direction on treatment?
Thanks for everything!!!

www.ebmt.org/Contents/Resources/Library/Resourcesfornurses/Documents/ITP%20Handbook.PDF ....
Have a look at this it may answer some of your questions.

Each person is different into what symptoms they have with a particular count for instance I bruise easily with a count below 30 but don't get blood blisters in my mouth unless my count is below 10

Gosh that is a lot of questions. Didn't you know there is a limit :lol:

My thoughts on alcohol & counts: I like your story and probably react similarly, no count evidence though.

I think it is not just symptoms, but 'wet' bleeding symptoms that is important. Like a nose bleed that won't stop, or bleeding gums. Most doctors will 'treat' if one's count is below 30, or, there is bleeding (regardless of count).

Should you wait until Monday? One thing you can do is to call your doc office and ask to get tested right away. If an emergency hospital is easily available then waiting is an alternative. They have drugs to stop bleeding - even with low counts.

As for insurance, you should notice that the plan with a low (2k) deductible is way more expensive per month than the high deductible plan. In my experience, if you don't get sick, the low deductible plan will cost you more for the whole year. And vice versa, if you do get sick (max out the deductible) that plan will cost you less. Run the numbers for your situation and see how it comes out. LOL, then decide if your going to be sick next year.

About the IVIG & Rituxan. The risk of Rituxan treatment is small but can be very grave in consequences. Here is an article I recently ran across that looks very comprehensive on risks.
www.researchgate.net/publication/42638552_Rituximab-Associated_Infections

The risks with IVIG is less, and also, far less grave. Take a look at this article on IVIG.
www.smw.ch/content/smw-2012-13593/

Notice in figure 2 some representative treatment and responses to IVIG. I dunno, looks like the dose of subsequent treatments are normally much less than the original first treatment. If your doc says more IVIG may get you into remission / sustained better counts that sounds better than Rituxan.

Oh BTW, here is a pretty good reference for ITP treatments in general. It includes some risk info too.
onlinelibrary.wiley.com/doi/10.1046/j.1365-2141.2002.03669.x/full

Hope this helps...

In the USA insurance deductibles and coverage has changed a lot over the last few years. I work for a large company and have seen my cost increase while my coverage decreased. I was just diagnosed in October and had to renew my insurance coverage for 2017 the week after getting out of the hospital. I ended up keeping my higher deductible plan and increasing my health spending account input. My reasoning was due to the out of pocket maximum of my plan and the next plan up were identical. Meaning eventually if everything fall apart and I am back in the hospital I will be paying out the same amount of money, but if I do not have a major incident during the year my cost will be down. Not everyone can do this I know, but look hard out the total out of pocket with each plan.

I was around 40 my first CBC too, I ask my hematologist about alcohol and he said the 1 drink was fine but not to indulge. In general it seems not to affect counts in others from what I've read here. I have omitted it for the most part but do drink the occasional one here and there and have not noticed it in results.

All doctors give different answers about alcohol. I don't think that one glass of wine every once in a while will do much damage. There are people here who continue to drink and never notice any drops. It's hard to correlate because you may have dropped anyway.

ITP is hard at first because you don't know what to expect and feel out of control. That gets better in time. Some people go into remission and ITP is not always a life long thing. If not, you will learn when you need to worry and when it's okay. Bruising is usually a sign of a drop, but not always. I tried not to worry about it unless it got significantly worse as the days went by. Any bleeding is obviously a sign that maybe you should get a count. Just know that having low counts do not = death. Most people can handle low counts because people with ITP tend to have large platelets that work well and tiny platelet fragments that also aid in clotting.

IVIG does not cause remission no matter how much you flood your body with it. I have never heard it put that way in my 19 years on this forum (daily). IVIG is always temporary unless the ITP is acute. In that case, it would have gone away without the IVIG anyway. Rituxan can cause remission if a person is responsive, and that usually lasts a year on average. It is a much more toxic treatment though.

Directions on treatments....read as much as you can about the experiences here, then ask questions. N-Plate, Promacta, Rituxan, Prednisone, Decadron and Win-Rho are all valid options. You will find a lot of info.

As for insurance, I can't tell you what to do. ITP can get expensive. I stuck with steroids for years because I wanted to keep it cheap. I had two girls in college and chose to spend my money for that. Only you know what you can afford.

www.bloodjournal.org/content/115/2/168?sso-checked=true#ref-74

This is more up to date and extremely well referenced

Hi all!

Just a little update (with more questions-lol):

I went in the next day after I posted my bagillion questions and was at 50K. The next week was 37K and my doc wanted to do IVIG infusions again saying that eventually my spleen might come to expect the IgG and stop destroying my platelets. He also started talking splenectomy...

Anyway, because I had such a bad headache with the last round of IVIG, he said we'd do a little decadron to help with the headache. I had read that 37K is still plenty high for us ITP-er's, but needed dental surgery and had to be above 60K in order to do that - so I went for it. Turns out the decadron was 40mg for 4 days... and as I researched after I started feeling terrible on it, I find out that that is a whole other ITP treatment. I'll take the IVIG headaches any day!

This time after IVIG I was up to 277K!!! Then 2 weeks later down to 79K, the next week 36K and he started talking about more IVIG, decadron and a splenectomy.

Now, one week later I'm at 211K without anything! ??? My doc tells me he wants to do IVIG while I'm this high and we scheduled for next week.

Has anyone heard of this or can anyone explain this to me??? -Why I'd be this high again without any intervention after dropping so quickly after the IVIG/decadron? And why we'd be doing IVIG while I'm this high?

I am just completely baffled at why my count is back up in the 200's???

There are just so many treatment options and with the talk of a splenectomy, I thought I'd better get a second opinion and am seeing another doc to discuss later this week.

Thanks for all your help

I would definitely be looking for a second opinion.

It is possible that your ITP is an acute case, meaning that like the flu, it came and went. It is also possible that you are now in a remission, which can happen with high-dose dexamethasone treatment. As Sandi said, it is unlikely that a remission could be caused by IVIG. Your doctor's wanting to try another round of IVIG, while your platelets are very normal, is off-the-wall outside-the-box and contrary to all protocol. He may have an interesting "hunch", but it is not evidence-based medicine. You are wise to be getting a 2nd opinion. Just make sure it is someone really qualified, not just "another" opinion. It is worthwhile even if you have to travel to see somebody really good. Oh, and stay away from the scalpel. You may need that spleen someday.

Agree - second opinion. I have never heard that 'theory' in all of my years researching ITP. I don't think the spleen is actually capable of expecting anything. It sounds like he wants to scare it into submission. :huh: It is very off the wall. IVIG is known as a rescue treatment, which means that it is used to get counts up fairly quickly when they are low. Using it when counts are high is a waste of time since it doesn't usually last long and well, it isn't needed.

Most people with ITP also have production problems. Destruction isn't the only battle.

As for why your counts are up...it is odd, but has been known to happen. ITP is unpredictable that way. I can't tell you why it happened, but I can tell you that you can't ever go by just one count. See what happens over the next few weeks.

This doctor seems to be very old school. He's only suggesting the four treatments that were used many years ago. There are other options these days, as you know.

my3, take a look at this 'old school' article about repeated IVIG treatments.
www.bloodjournal.org/content/bloodjournal/82/5/1415.full.pdf?sso-checked=true

Figure 1 shows a typical response when someone does not respond well enough to IVIG to retreat with more. Figure 2 shows a typical response when someone does respond well to IVIG. Note that treatment is discontinued once there is a sustained response.

Couple of relevant points.
- If you look at the start/base count of those that do respond to IVIG, they are typically over about 30. With your higher count (above 30) fluctuations that could qualify you as a possible responder.
- And then there is your 36K count after IVIG. Was that 4 weeks from start of IVIG treatment? If so, I think that would put you into borderline responder territory as well. The paper suggests 50K (on average) after 4 weeks as a threshold to do additional IVIG therapy.

From other papers I've read, remission from steroids is about 10 times more probable than remission from IVIG. That would make IVIG remission around 2% of population. Very small. Some might even say 'statistically insignificant'. But, today it is looking like you may be in that group ! !

About the doc second opinion. I think it is safe to say that 'watch and wait' will be the expected second opinion. LOL, it certainly seems to be the opinion from those here.

Nevertheless, I'd ask your current doc why more IVIG. I'd say something like 'you've treated patients in the past with IVIG in this situation' (high counts). Ask him to explain. With deliberation, if it sounds like horse poo or 'it worked once', I'd go with the second opinion (which should be watch and wait).

In my opinion, I like your 211 count. As I understand, your IVIG peak (277) is your theoretical maximum - a situation where your spleen isn't even destroying (10 day) old platelets. So 211 sounds like a number one would expect from a normally functioning system.

Good luck...

As usual, I agree with Sandi and Rob. A second opinion most definitely!

If you have a normal count, no need for any treatment. For some people, their bout with ITP is fleeting. I certainly hope that you are one of those!

Definitely don't let them take your spleen. That's crazy talk with numbers like those! A splenectomy is forever, lol. (I often look back to my childhood when they took my spleen and wish I could get it back! It does lots of important things that we still don't fully understand.)

Best wishes for continued normal counts!

Hal - by "old school", I meant the treatments that were used long ago. Up until the 80's, the only four were Prednisone, Decadron, IVIG and splenectomy. I wasn't insinuating that those treatments should not be used any more, just that if a doctor only mentions those four, I'd question how up to date he is with ITP. Win-Rho was added at one point, but it wasn't until the 2000's that new treatments were finally introduced.

Sandi wrote: I wasn't insinuating that those treatments should not be used any more,

Ok, that hadn't crossed my mind.

Sandi wrote: just that if a doctor only mentions those four, I'd question how up to date he is with ITP.

This was exactly my thinking too. The four options together with the talk on splenectomy made the doc sound, LOL, archaic...

Gosh, wasn't that article that Rob posted absolutely eye opening? You know, vaccines are used to create new antibodies. Do you suppose something can be developed to unlearn antibodies? That could change the course of SLE too, wouldn't it?

Hal9000 wrote: Gosh, wasn't that article that Rob posted absolutely eye opening? You know, vaccines are used to create new antibodies. Do you suppose something can be developed to unlearn antibodies? That could change the course of SLE too, wouldn't it?

Who knows what is going on in the labs these days. Turning off certain antibodies would be key, but is probably pretty complex.

I had my second opinion appt yesterday. Really liked the guy... He said he would have treated me longer in the beginning with high dose steroids (8wks w/ 2mo taper) and no other treatment until I was symptomatic with bleeding or less than 20. Now that I'm 211,000 we're going to wait and see!

I am not going to do the IVIG/decadron with my counts this high like my first doc wanted... 2nd doc so nicely said "there is no science behind that". :silly:

I live in a small (5K) town where my PCP is; work in a larger town (18K) where my 1st hematologist is - 30mi from home; and this 2nd opinion doc is in a larger city (110K) - 2.5hrs from home. This 2nd opinion doc suggested for me to do bloodwork through my PCP and my PCP can discuss with him.

I'm ok with this plan - how do I go about breaking up with my first guy? Thing is, if I need treatments or anything - it will more than likely happen at the cancer center with my first doc. How does this all work?

Thanks again for all of your help and thoughts!

my3blessings wrote: I had my second opinion appt yesterday. Really liked the guy... He said he would have treated me longer in the beginning with high dose steroids (8wks w/ 2mo taper) and no other treatment until I was symptomatic with bleeding or less than 20. Now that I'm 211,000 we're going to wait and see!

I am not going to do the IVIG/decadron with my counts this high like my first doc wanted... 2nd doc so nicely said "there is no science behind that". :silly:

I live in a small (5K) town where my PCP is; work in a larger town (18K) where my 1st hematologist is - 30mi from home; and this 2nd opinion doc is in a larger city (110K) - 2.5hrs from home. This 2nd opinion doc suggested for me to do bloodwork through my PCP and my PCP can discuss with him.

I'm ok with this plan - how do I go about breaking up with my first guy? Thing is, if I need treatments or anything - it will more than likely happen at the cancer center with my first doc. How does this all work?

Thanks again for all of your help and thoughts!

Great news about the new doctor! That sounds like a much more reasonable plan of not treating a normal count.

Regarding future logistics of having to potentially use the closer facility with the original doctor, I don't have any advice. I would just say that patients switch providers all the time for all kinds of reasons, so you certainly don't have an obligation to remain with the original doctor. I don't think you need to say anything to that office right now if you have no follow-up scheduled. Your plan of checking blood work periodically with your PCP and having him follow up with the good 2nd doctor sounds perfect.

Hopefully you will have no need to do anything further. Good luck!

That sounds much better!

You'd have to see if the two doctors will work together. Some are willing to do that, some are not.

my3 IMHO, your steroid response wasn't so good. I would wonder if going on steroids initially for a longer period of time would have just confirmed to a greater degree that not so good response.

On the other hand, a 277 IVIG response is difficult to ignore as the dominant treatment effect. The paper I mentioned earlier seemed to suggest you are/were borderline candidate for remission through IVIG. Certainly a better candidate than I and my hema was suggesting either more (2nd) IVIG or switch to Rituxin - with preference to more IVIG. In hind sight, Dex with IVIG seems comprehensive in treatment for you.

You can fire your fist doc but I'd thank him for potentially putting you in remission first.

Is your PCP requiring you to select one of the two specialists going forward (insurance reasons)? Shouldn't be hard to persuade first doc to wait and watch - especially if not doing so means loosing a patient.

Seems like under wait and watch you might be able to not fire anybody yet. That is, will the PCP allow a second opinion for a future treatment visit with your first doc? A sort of have your cake and eat it too?

Just thinking out loud...