ITP "lifer" New Here and Seeking Treatment Advice

Hi group,

I just wanted to take a moment to introduce myself and to solicit some advice from the collective knowledge I see displayed in these groups.

A bit of background:
I was diagnosed with ITP when I was 8 years old and did the whole shebang of treatments as a child (ivIG, prednisone, splenectomy). Prior to my splenectomy my counts were running around 10K, and I had a limited response to the surgery. After the splenectomy my normal levels became 70-80K and I would have crashes whenever I became sick.

I managed things after surgery while growing up by just “self treating” and taking a single time small burst of prednisone (10 or 20mg) whenever I was sick and had a monthly bleed that wouldn’t stop, or ended up with blood blisters in my mouth. I didn’t need any kind of treatment that often so this worked for many years and I wasn’t actively followed by a hematologist.

I was lucky to be able to have three children and managed the pregnancies with mega-doses of prednisone. Keeping my counts above the 30Ks was very tough in the third trimesters, but I managed to have all the births naturally, so I never needed any emergency platelet raising measures during delivery.

Currently:
I just turned 40 and have been having a tough time with my counts for the past few months. At the beginning of the year I had to have my first blood transfusion ever because I got sick, had my counts crash, and this coincided with my monthly cycle. HGB ended up around 6 and I was in the hospital for a transfusion. Even at that point I was very responsive to my prednisone burst and was in the hospital with counts a little below 200K just from having taking 20mg on two separate days. I was just a bit too late in doing it and ended up losing too much blood before I popped my counts up.

Fast forward to this month. I had 20K when I decided to get a hematologist to follow along with my ITP and to see if I can do anything to stop this monthly cycle of too much blood loss followed by anemia all the time. After I did my usual burst of prednisone with the hematologist’s consent, I was only up to 38K the following week. My doctor put me on 40mg daily for that next week and my counts went to 84K at the next check. Doctor kept me at 40mg daily and will do another count next Tuesday. She wants to see how high I can go on this dosage.

However, this is the first time I have been on any significant amount of prednisone in 10 years and the side effects are horrific this time around. Insomnia, manic episodes, depression, constant hunger, etc. I’m a mess! I am going to tell her I’m done after the next count and will be tapering off of the medicine. She offered to taper me off this week because she wants to try Rituximab as a next step, but I am trying to tolerate this for one last week to see what happens. I am terrified by the potential for PML with Rituximab. I have three kids and don’t know how I feel about that kind of a risk, even though very rare. I find myself wondering if my international travel back in September didn’t ramp my immune system into a new state of platelet eating that is causing me to not have my usual platelet spike with a single administration of prednisone.

I guess I’m just looking for support and pointers to particularly useful threads/topics in the archives where I can start learning what my options are for treatment going forward. I’d also love to hear about experiences with Rituximab as I float that idea around in my head for something to try next. Apparently my body isn’t going to let me manage this thing with steroids for much longer without me going crazy, so it’s time to start shopping around.

Thanks in advance!
Momto3boys

why not try TPOs

You've got several options and you've come to a good place to hear stories of how others have dealt with what you are dealing with.

First off, I want to make sure you know that you don't have to be tapered off prednisone before starting Rituxan. It sounds like maybe your doctor gave you that impression. Since Rituxan can take up to 12 weeks to be fully effective, if that's your next course of action, no need to wait. Also, you should search these threads and the Internet for "low dose rituxan" which is theorized to be as effective as the higher dose given to cancer patients.

As mrsb mentions, the TPOs are also an option, though they require a commitment to treat for a while to find the right dose and then stay on that dose.

Another option if steriods have worked for you in the past as you say they have is an infusion of solumedrol. Not as common for ITP as some other treatments, but can be effective.

There's also DEX and IVIg, which I'll let others comment on.

Your doctor will check you for hep b or c (can't remember which) before rituxan, and I think that minimizes the PML risk, but you should do your own research on that.

This is the treatment section
pdsa.org/treatments.html

This talks of the TPOs
pdsa.org/component/k2/item/100.html?Itemid=122

84k is a great count - my new hematologist wouldn't have liked the spike you had going to 200k so quickly, she feels that is dangerous. None of us like prednisone - in fact I refused it last time my count tanked.

Wow, you guys are fast. Thanks so much for the quick feedback! I'm guessing that my hematologist is considering Rituxan because of it being a four time administration deal and then wait and see. These TPOs seem like more of a long term commitment/treatment and they sound expensive.

I have lots of research ahead of me, but tamar thanks for the tip about not needing to taper before starting Rituxan. That will change my timeframe a bit, and I really need to evaluate the PML risks by reading more. She did mention the Hep B screening prior to going that route, so I need to understand better how much getting cleared with that result mitigates the risks.

I also like the sound of "low dose" Rituxan. It makes it sound safer and happier :laugh:

Melinda, thanks for the links and I appreciate the perspective on the count. Personally, I am fine with low counts as long as I don't have active bleeds or the bleed/anemia cycle I'm currently in. 84K is definitely rocking high in my book, so I'm kinda asking myself why I let her talk me into another week of Prednisone pain for the sake of a data point. I guess the Rituxan risk thing freaked me out in the office so I jumped with the known evil instead. It doesn't help that my emotions are a roller coaster (yay pred) and I haven't researched anything in such a long time. Maybe I'm coming off of a lifetime of denial and need to take the bull by the horns. I definitely need to come into this from a position of more knowledge and that's what you are all helping me do, so I thank you!

Yes, your ITP could have been caused by an infection, or also by a drug you might have used to treat. Do you know what infection you were treated for? Some infections can lie dormant and be reactivated by immunosuppressive treatments, and I include corticosteroids (such as prednisone) in this category.

onlinelibrary.wiley.com/doi/10.1002/art.23883/pdf
REVIEW: Viral Infection and Reactivation in Autoimmune Disease Eliza F. Chakravarty
ARTHRITIS & RHEUMATISM Vol. 58, No. 10, October 2008, pp 2949–2957
DOI 10.1002/art.23883 © 2008, American College of Rheumatology

Many of the treatments for ITP are immunosuppressive. Mrs. B mentioned TPOs (Promacta and Nplate) because they are not immunosuppressive, and have an excellent safety record although they are much newer and hence do not have a safety record for long term use. There is a risk of blood clots with TPOs, which may be of special concern if one has had a splenectomy (as it also increases risk of clots) so treatment is intended to keep platelets at the 50k level to help balance the risk of clotting.

"Balancing the risk" is the the hardest part of treating ITP, and involves a great deal of personal judgment, depending on how you value the various risks - of brain bleeds, blood clots, reactivating infections, steroid crazies, etc. This is one reason there is not one right answer for everybody.

You do have quite a few choices and the decisions are never easy.

First, PML and Hep B reactivation are two different potential issues. Getting checked for JCV can minimize the risk for PML. A person should also be checked for Hep B prior to Rituxan since Rituxan can cause it to become active. I do consider Rituxan to be a fairly toxic treatment, although many people here have used it, including me. It can also be expensive. Most people do well with it and have few side effects. I did end up with serum sickness which ended up causing an autoimmune response that triggered another autoimmune disorder. It probably works 50% to 60% of the time. You also have to keep in mind that since you are asplenic, using steroids and Rituxan can place you at a higher risk for infections for 6 to 12 months. Also, vaccines are not usually effective for 6 to 12 months after Rituxan use.

The TPO's are pretty effective with an 80% to 90% success rate, but you're right, they do require a commitment. Most people do well with few side effects. As Rob pointed out, blood clots are a risk with the TPO's and the risk is higher when one is asplenic. Counts should be maintained around 50k and should not be normalized.

You can also look into Decadron, CellCept, and Imuran although those are not ideal either.

I hope we helped, but it looks to me as if we might have confused you even more!

mom I'm not sure how long you have been on the 40mg of prednisone but you have been at this ITP business for a long time so you know not to just stop it or decrease too quickly. I recall when I was diagnosed and on 60mg we were moving to Tokyo so my doctor decreased the dose to 30mg hoping to get me off it before we moved and my count hit the gutter fast.

Also once after the real flu my count went up to 401k - when my new hematologist [just got her last year] heard that she was not happy, but of course nothing could have been done about it. She doesn't like big jumps in count because of the strokes.

I will try to avoid a dex pulse if at all possible - but that is me, it's another steroid and I don't want to get slammed with it.

When I refused prednisone back in 2002 when my count tanked I had WinRho, one IV did the trick - I asked my hematologist why not IVIg, she said she never had a patient go into remission with IVIg.

One thing that comes up, gets mentioned, is brain bleeds & sometimes I wonder if that just doesn't freak people out - that's something I've never thought about - heck my brother in law fell and hit his head and had a bad brain bleed he didn't know he had for a few weeks, me with ITP since 1989 has never had one.

I have a friend who has been in "remission" for years after having had Rituxan [also helped her RA]. I have a friend on a TPO who is doing very well. One just doesn't know - and we are all so different.

Lets hope your count evens out so you don't have to go further with treatment - wouldn't that be nice - but you are right, you need to take the bull by the horns and learn everything that's new and do what you feel is best for you! But you sound like you already know that so you actually are a step ahead of most

Hi Rob,
Thanks for the link to that article (Now I get the need for the Hep B labs before Rituxin). When contemplating treatments I have to keep in mind what other things I may be "releasing" in mucking around more with my immune system. My mother had a horrible bout with shingles a few years ago and I'd love to avoid such a scenario. If I decide to go the Rituxin route it seems like I would be better off avoiding foreign travel and being conscious of my immune compromised state for at least a year (or longer?). Does that sound about right? Anyone have any practical tips for what they have done/not done after undergoing Rituxin treatment?

I like the sound of these TPOs because I like the idea of boosting instead of "damping down." Glass half full not half empty kinda thinking. I will have to start looking into the nitty gritty of real world logistics of cost and insurance coverage for this stuff. Ugh, you are right that there is sure no easy answer for any of this. Thanks for your thoughtful response! I'm feeling bad for my parents who had to wade through all of this for me back in the 80s in those pre-internet days. I sure wish I could go back and get my spleen though, lol.

Ahh, okay Sandi. I read that article that Rob posted and I understand the difference. That serum sickness sounds rough and triggering another autoimmune disorder had to have been unimaginably disheartening! What was involved with that, just a bad reaction to the treatment (if you don't mind my asking)?

More knowledge is always better IMHO, and I need to get to a place where I know more or as much about my options as my hemo. In a 5-10 minute office visit I can't really expect to be educated and treated and understand all of the implications of the various treatments. I hope to get to a point where I can drive the discussion of where to head next. Long way to go though, and you will all have to excuse some of my silly questions!

Melinda wrote: mom I'm not sure how long you have been on the 40mg of prednisone but you have been at this ITP business for a long time so you know not to just stop it or decrease too quickly. I recall when I was diagnosed and on 60mg we were moving to Tokyo so my doctor decreased the dose to 30mg hoping to get me off it before we moved and my count hit the gutter fast.

<snip>

I have a friend who has been in "remission" for years after having had Rituxan [also helped her RA]. I have a friend on a TPO who is doing very well. One just doesn't know - and we are all so different.

Lets hope your count evens out so you don't have to go further with treatment - wouldn't that be nice - but you are right, you need to take the bull by the horns and learn everything that's new and do what you feel is best for you! But you sound like you already know that so you actually are a step ahead of most

Melinda, this is only my second week on 40 (next count next Tuesday), but I've been reading older threads about the recommendations here to taper even more slowly than hematologists recommend. I know to expect the crazy muscle achiness and general malaise, but since I'm tolerating the prednisone so poorly this time around (age?), I have a feeling that the taper will be worse as well.

I hear you about there being just too many variables and factors in every case. I just need to make my peace with something and go with it. After waking up this morning at 2AM and deciding to do touch up painting in the living room at that time, I'm getting subtle little hints that the steroids ain't gonna be the best choice for me any more. But it sure is satisfying to have smudge free walls

I really do appreciate all of the links and help that I am receiving here as I get back up to speed! I'm surely behind the game, but I'm stubborn and I'll get there :laugh:

I'm not the scientific guru many of these wonderful folks here are. I can only offer food for thought.

About 1 1/2 years ago, my MD wanted to try Rituxan after daily prednisone failed to maintain safe counts. I was reluctant about Rituxan, too. Didn't like the 50/50 response rate and paltry 50/50 sustained response rate coupled with such serious potential side effects, so I backed out at the last minute. Rituxan is expensive, too, if you figure you could end up needing more after year or two. (It could last 5 year or longer; no way to anticipate anything about it or this stupid disease.)

This is only my MD's opinion... Yours may not agree... The Rituxan-linked PML is likliest to happen with cancer patients and hasn't been demonstrated to be high risk in ITP patients. But I'm here to tell you, I've had plenty of MDs be wrong about plenty of things in my lifetime experience. For what that's worth.

I instead chose NPlate, with its 80% response rate and negligible side effects. It's not a problem for me to go in once a week for injection and blood count, but that could be a problem for a younger woman with a more active life.

Insurance-wise, it was better for me to use NPlate vs. the daily pill, Promacta. NPlate is billed under the medical portion of my plan and covered at 100%; Promacta is billed under my drug plan and would carry a higher co-pay than I'd be able to manage.

Good luck with your decision.

Mom:

Don't feel too bad for your parents. Back in the 80's, choices for ITP were very limited. All that was available was IVIG, Prednisone and splenectomy. My sister had ITP back then and she only used steroids. It was much easier to decide.

I'd suggest no foreign travel if you go the Rituxan route. Immunosuppression like that is nothing to mess around with. If sepsis hits, it hits fast.

Serum sickness is a sort of delayed allergic reaction. It occurs 2 to 3 weeks after the first Rituxan infusion. It hits suddenly and the symptoms are severe joint pain, fever, possible hives, headache, etc. It usually lasts 5 to 7 days and is very painful. It usually clears up but mine really didn't. I kept having muscle pain, joint pain and feeling like I had the flu. That went on for a year and a half and slowly, my blood work began to indicate Lupus. It's 10 years later and it's become debilitating. That is a very rare reaction though and I believe that I was predisposed to Lupus and may have ended up with it at some point anyway. That was my trigger though.

PML is more common in cancer patients not because they have cancer, but because they are usually already immunosuppressed from chemo. If a person has had the JC Virus (and many people have), it is more likely to cause PML if one is immunosuppressed.

momto3boys wrote:

I need to get to a place where I know more or as much about my options as my hemo.

Well put!

My wife, Ellen, is the one with ITP; she was treated August of 2014 with Rituxan. She works in an AIDS clinic swarming with opportunistic infections, but her hematologist assured Ellen that if her health is otherwise good, infection is generally not a problem, and she has not been ill this entire time. Rituxan knocks out only one part of the immune system, and apparently there are redundancies in the system. Still, I don't know whether she would use Rituxan the next time.

midwest6708 wrote:

This is only my MD's opinion... Yours may not agree... The Rituxan-linked PML is likliest to happen with cancer patients and hasn't been demonstrated to be high risk in ITP patients.

I think the reasoning is that cancer patients are more likely to be exposed to multiple immunosuppressive treatments than are ITP patients - which may or may not be true.

Regarding serum sickness - I got it from amoxicillin. My reaction was very very swollen/red/hot extremely painful knees and ankles - and palms of my hands - I could hardly put one foot in front of the other to walk, but had to take myself to the ER as husband & sons were on a skiing trip.

I wouldn't think fear of serum sickness should stop someone from using Rituxan should it - if that is the case then people shouldn't take penicillins or any other med that has serum sickness as a reaction. However once someone has had serum sickness to a mediation that med should not be taken again. I now cannot have any penicillins.

www.nlm.nih.gov/medlineplus/ency/article/000820.htm
[this does mentions rituxan, also penicillin and sulfa]
"Serum sickness is a reaction that is similar to an allergy. The immune system reacts to medications that contain proteins used to treat immune conditions. Or it can react to antiserum, the liquid part of blood that contains antibodies given to a person to help protect them against germs or poisonous substances."

"Symptoms usually do not develop until 7 to 21 days after the first dose of antiserum or exposure to the medication. However, some people may develop symptoms in 1 to 3 days if they have already been exposed to the substance."

I agree - fear of serum sickness should not stop a person from using Rituxan. You do have to weigh all of the pros and cons though. Serum sickness would be the lesser evil of the three risks mentioned and most recover fully. I was just very unlucky. From observing over the years, I have noticed that people who have Lupus or seem predisposed to Lupus have more problems with Rituxan than those who don't.

I still don't know how you drove yourself, Melinda. The second time I had serum sickness, I laid in bed for 8 hours waiting for my husband to get back from work. I couldn't get up to go to the bathroom or get anything to drink. The second time was worse though. More pain, my skin was purple and peeling and I had hives which didn't happen the first time. It is a horrible thing to go through.

midwest6708 wrote: I'm not the scientific guru many of these wonderful folks here are. I can only offer food for thought.

About 1 1/2 years ago, my MD wanted to try Rituxan after daily prednisone failed to maintain safe counts. I was reluctant about Rituxan, too. Didn't like the 50/50 response rate and paltry 50/50 sustained response rate coupled with such serious potential side effects, so I backed out at the last minute. Rituxan is expensive, too, if you figure you could end up needing more after year or two. (It could last 5 year or longer; no way to anticipate anything about it or this stupid disease.)

This is only my MD's opinion... Yours may not agree... The Rituxan-linked PML is likliest to happen with cancer patients and hasn't been demonstrated to be high risk in ITP patients. But I'm here to tell you, I've had plenty of MDs be wrong about plenty of things in my lifetime experience. For what that's worth.

I instead chose NPlate, with its 80% response rate and negligible side effects. It's not a problem for me to go in once a week for injection and blood count, but that could be a problem for a younger woman with a more active life.

Insurance-wise, it was better for me to use NPlate vs. the daily pill, Promacta. NPlate is billed under the medical portion of my plan and covered at 100%; Promacta is billed under my drug plan and would carry a higher co-pay than I'd be able to manage.

Good luck with your decision.

Thank you so much for relating your experiences! As I'm reading and researching this seems to be the direction that I am going in my thinking. The long term Rituxan numbers aren't pushing me in that direction, and the toxicity and immunosuppressant effects are swaying me against that as a next option (not to mention my PML fear!). I really like the look of the Promacta so far if I've just got to do something on the hematological side, but am also looking into the idea of trying to manage things on the gyno side. If I can try something like an IUD to significantly decrease the bleeding (I need to head over to the women's forum! :laugh: ), then I would rather do something like that and float along with lower counts of 30-40K. I'm not sure what my baseline is any more since I haven't treated in so long, so once I taper (slowly slowly!) my current bout of steroids I'm thinking of doing a watch and see with weekly counts. I don't have any issues aside from the monthly bleed, so if I can manage that in another way, then maybe I won't have to jump in with the long term management of the TPO-RAs quite yet.

And of course, this is still all in the abstract. Not sure what my hemo and insurance would have to say about my plans, lol! Getting my own ducks in a row first

Sandi wrote: Mom:

Don't feel too bad for your parents. Back in the 80's, choices for ITP were very limited. All that was available was IVIG, Prednisone and splenectomy. My sister had ITP back then and she only used steroids. It was much easier to decide.

I'd suggest no foreign travel if you go the Rituxan route. Immunosuppression like that is nothing to mess around with. If sepsis hits, it hits fast.

Serum sickness is a sort of delayed allergic reaction. It occurs 2 to 3 weeks after the first Rituxan infusion. It hits suddenly and the symptoms are severe joint pain, fever, possible hives, headache, etc. It usually lasts 5 to 7 days and is very painful. It usually clears up but mine really didn't. I kept having muscle pain, joint pain and feeling like I had the flu. That went on for a year and a half and slowly, my blood work began to indicate Lupus. It's 10 years later and it's become debilitating. That is a very rare reaction though and I believe that I was predisposed to Lupus and may have ended up with it at some point anyway. That was my trigger though.

PML is more common in cancer patients not because they have cancer, but because they are usually already immunosuppressed from chemo. If a person has had the JC Virus (and many people have), it is more likely to cause PML if one is immunosuppressed.

True, Sandi. I guess all of these new treatments weren't around, which is why I had exactly those things you listed: Pred, IVIG, Splenectomy, Pred. Kid of the 80s!

I'm leaning to the TPO-RAs if I have to treat after my current blast of pred. and I can't attack this from the gyno front. But who knows, maybe I'll end up at some kind of a good level for stability --- bwahahahahaha, not holding my breath, but anything's possible!

I'm so sorry to hear about the Lupus. That seems like such a mysterious and debilitating condition. I just checked out a book from the library about women and auto-immune diseases. It's an older book, but I'm just looking to expand some of my general knowledge base. I'm sure I'll learn more about Lupus as I read that. This steroid insomnia means I have so much more time on my hands! Brain foggy time, but time nonetheless!

Thanks so much for taking the time to expand upon your experiences. Between reading research (PubMed is AWESOME! I've been hiding under a rock for so many years and had no idea of the wealth of health data at my fingertips) and hearing first hand accounts of the treatments here, I think I'm getting myself into a good position to make the best choice going forward.

Melinda wrote: Regarding serum sickness - I got it from amoxicillin. My reaction was very very swollen/red/hot extremely painful knees and ankles - and palms of my hands - I could hardly put one foot in front of the other to walk, but had to take myself to the ER as husband & sons were on a skiing trip.

I wouldn't think fear of serum sickness should stop someone from using Rituxan should it - if that is the case then people shouldn't take penicillins or any other med that has serum sickness as a reaction. However once someone has had serum sickness to a mediation that med should not be taken again. I now cannot have any penicillins.

www.nlm.nih.gov/medlineplus/ency/article/000820.htm
[this does mentions rituxan, also penicillin and sulfa]
"Serum sickness is a reaction that is similar to an allergy. The immune system reacts to medications that contain proteins used to treat immune conditions. Or it can react to antiserum, the liquid part of blood that contains antibodies given to a person to help protect them against germs or poisonous substances."

"Symptoms usually do not develop until 7 to 21 days after the first dose of antiserum or exposure to the medication. However, some people may develop symptoms in 1 to 3 days if they have already been exposed to the substance."

Thanks for helping with the serum sickness question. I think Rituxan has plenty of other aspects to scare me without the consideration of serum sickness, so my plans are heading in another direction.

You do what you feel is right for you mom and that's all you can do. You already seem a step ahead because you do research, you are aware it is your body and you can say no, you aren't trying to get your count in the high upper range but at a safe number.

Unfortunately there isn't anything out there for any illness/disease/condition/ailment that can be taken without the possibility of a side effect/side effects. There are some treatments I'd think of for myself as a last resort - some of those already mentioned above. But I have learned to never say never because that phrase will come back to bite you in the bum later.

I enjoy reading your posts and I wish you the best - and look forward to reading more from you!

Argh,

Today was rough. So since tomorrow is a holiday and I'm going absolutely bonkers on the Pred this time (evidenced by the fact that I was again up at 2AM and researching here and posting) I thought I'd go in for a final CBC before I taper. My count today was 72K (down from 84K on Monday) while still being on the 40mg Pred dosage.

My doctor wasn't available to speak with, but whichever doctor was in the office glanced at my labs and passed on the message to stay with 40mg. I am determined to get off the steroids because the psychological effects this time are just so debilitating. I don't have any procedure coming up or any need for a high count. I kinda wish that we could just do labs and get back in touch with what my body is doing on its own before I start jumping this way or that with treatments. I will really be fine if my new normal is 30K without intervention (provided I manage the gyno stuff). I have decided to taper despite the message passed on by whoever saw the labs but wanted some advice on best ways to do so. I would have thought to start with 30mg tomorrow (and maybe the next day), then down to 20mg the following, but feel like some of the older threads recommended a slower taper. Since I'm not getting the bang from the pred this time, tapering isn't about maintaining some great stasis I might have going on (since I'm down today it seems like I'm going to have to explore other options regardless). I just want to get off ASAP without doing damage or triggering a worse platelet crash (Well, they seem to be taking a downturn on their own, but you know what I mean).

Any thoughts?

I need to get out from under the cloud of sleeplessness/depression/brain fog to make some decisions. Maybe I'm being completely irrational about not staying at 40mg for the moment, but I'm just not invested in it or seeing any potential benefit from doing so. Feel free to tell me if I'm sounding unrealistic, my mind is really not my own at the moment.

Lots of platelets to you all. I'm feeling kind of like a moocher by taking all of your great links and advice and soliciting more advice despite being new, but during this bout it seems like I need talking off of the ledge.

Prednisone will do that to you. We've all been there. After a while you don't know where Prednisone starts and the real you ends. he best thing to do is accept it and try to go with the flow. I learned that trick my second time on the high doses and it went much better. I laughed at myself all the time instead of letting the moods control me. Of course it's best to get off of it as soon as you can, but while you are on it, don't fight the ride.

Has your GYN checked to see if the bleeding is gyno-related? Just a thought. I had a friend who didn't have ITP and bled horribly due to fibroids.

Sandi wrote: Prednisone will do that to you. We've all been there. After a while you don't know where Prednisone starts and the real you ends. he best thing to do is accept it and try to go with the flow. I learned that trick my second time on the high doses and it went much better. I laughed at myself all the time instead of letting the moods control me. Of course it's best to get off of it as soon as you can, but while you are on it, don't fight the ride.

Has your GYN checked to see if the bleeding is gyno-related? Just a thought. I had a friend who didn't have ITP and bled horribly due to fibroids.

I know. The lack of sleep is just making everything seem so dramatic and "end of the world," which it obviously is not. I have cut the caffeine (reading that coffee is bad for platelets, no! my new nespresso, I'm so bummed... I'm starting to lose myself down the rabbit hole of looking at what to eat and what not to eat and seeing all the contradictory information... too many variables)...

Regarding the bleeding, got an ultrasound and biopsy done earlier in the week to rule out other complications. We'll see what they come back with on that front.

I think the appearance of the cushingoid face today triggered some deep memory of the trauma of prednisone in the teen years. I'm feeling rather shallow indeed. Going with the flow is excellent advice. I'll keep trying to bat this sleep deprived crazy me out of the way and listen to the inner voice of reason.

Thanks!

Sandi where there's a will there's a way - I just HAD to get to the ER because I wanted something to stop the pain so badly, I wanted a diagnosis so badly, I thought I was going to die, I HAD to get there!! I didn't even think to call a friend to take me, that's how goofed up my thinking was from the pain - I just knew I needed help badly!!

Mom have you thought about tranexamic acid for the heavy bleeding?

You don't have to drastically change your diet. Most of us agree that moderation is the key. Sometimes platelets do what they want regardless of what you do or do not do.

Thanks for the practical wisdom Sandi. I really enjoyed reading some of your older posts about Magnesium supplementation, and I'm giving that a go since it can't hurt.

I have also realized that my last two counts (84 and 72) are essentially the same, so I'm not worrying about the blips up and down here and there. Older posts about alphabet soup were very helpful! I'm looking forward to my appointment on Tuesday armed with lots of questions and a good idea of what I want to do going forward. I've started my steroid taper, so even being proactive there makes me feel like I'm moving in a good direction.

I definitely am not the kind of person who can go on some major elimination diet and just start eating "chicken and rice" and then adding in other foods to see what effect they may have on the counts. That sounds like an exercise in futility.

I appreciate your taking the time to help out newbies like me! Thanks!

For what is worth, I have been tested for micronutrient deficiencies, food allergies, tree allergies, mold allergies and animal allergies. Pretty much I have none. I am allergic to black tea, swordfish and honey! My micronutrients are all fine, no deficiencies. My doctor said I am the healthiest person he knows. I have not seen any research showing a link between what we eat and ITP. I think we are all different. Just as some people here have numbers go up when they get sick and others whose numbers go down when they are sick. It is a frustrating disease-no known cause and totally unpredictable. Oh joy!

I am so impressed by how you have managed so well for so many years! Things have changed a lot since you were first diagnosed, and there are some relatively new medications out there that you should investigate. I've had ITP now for 4 years and did go through the Rituxan treatments three years ago, with absolutely no change whatsoever. I then began treatment with Promacta two years ago when my numbers were in the low teens. It is one of the two new TPO's (platelet production stimulants; Nplate is the other) and can be taken in pill form, with doses ranging from 12.5 mg to 100 mg., so there is a lot of room to experiment with. I've had absolutely no side effects on Promacta; basically just take a pill every night before I go to bed. Like you and many others on this website, what scared me the most from the beginning was all of the warnings and "potential" side effects of the various treatments; hence this website has been great for researching the various treatment options. Also, I don't know where you live but a second opinion is always a good option, especially if your hematologist is one who rarely sees patients with ITP.

Hahaha, not really anything to be impressed by, I think I've always just been relatively responsive to steroids and managed to not bungle things up too much with my self-dosing attempts.

It's good to hear about your experiences with Promacta. I'm going to see my hematologist this afternoon to have the official "what are we going to do now" conversation since I'm taking steroids off of the table. She's a younger doctor (really young!), but seems up on the range of treatments (I think she may have been hinting at TPO-RAs after Rituxin at our last meeting, but I hadn't done my research at that point so I may be misremembering). I have great hopes that she will be flexible and work with me a lot more than some of the older male hematologists who I've had to work with in the past. Old school doctors who are set in their ways and get threatened when patients advocate for themselves are definitely to be avoided!

I'll be sure to update here after my appointment (dragging hubby along to make sure no residual steroid psychoses cloud my judgment in the office) and thanks again for your experiences with Promacta. Making sure I understand clotting risks is important.