My Promacta Journey

Sounds good! Hopefully you are on the right track now!

Glad to hear you are getting some consistency. Thanks for checking back in.

I've been spacing out my labwork more (life is busy and the doctor said I could, lol!)
Here is the latest
8/23/17 plt 52,000
50mg Promacta daily

Right on target for the medicine. Not mucking around with the dosage at all seems to have done me well. I actually did these labs at Georgetown because I was already over there. I'm probably going to try LabCorp closer to where I live for the next few checks and I'll have to see how the numbers run. It's nice to not have suspicious labs after all of those wonky counts at the finger prick office!

Great news! You finally got some stability!

Good news indeed

Hi momto3boys,
Yay!!!! I am so happy to hear you have stabilized on Promacta and that your life is also stabilizing and you are getting more time to do what you want to do with less blood draws!
Be Well,
Cindy

9/12/17 plt 42,000
50mg Promacta daily

Still hanging out in the zone. Probably no effects of the CBD in this result because I had only started it a few days prior to going in for labs. Maybe in a few weeks when I get labwork again I'll see a difference. Or, maybe not Not feeling any different one way or another, but these herbal type thingys can sometimes have effects after several months. Happy to have my numbers vaguely consistent, woot woot!

Wow fantastic news!
My platelets today were 112,000 down from 170,000 on Friday. I am hoping they remain stable. I am on the 50 Promacta, Parasite cleanse and CBD but only 10 mg. How much are you on? Had IVIG 2 weeks ago along with a 4 day 40mg a day Dex burst. If my numbers go down to 50 he wants me to do IVIG, does that make sense? I think there is something to the Dex burst. Maybe, I just ask for that if I have some wiggle room at 50,000? That way we'll know like everyone says what is working. Thoughts?

Cindy1 wrote: Wow fantastic news!
My platelets today were 112,000 down from 170,000 on Friday. I am hoping they remain stable. I am on the 50 Promacta, Parasite cleanse and CBD but only 10 mg. How much are you on? Had IVIG 2 weeks ago along with a 4 day 40mg a day Dex burst. If my numbers go down to 50 he wants me to do IVIG, does that make sense? I think there is something to the Dex burst. Maybe, I just ask for that if I have some wiggle room at 50,000? That way we'll know like everyone says what is working. Thoughts?

I'm using the sublingual SOL CBD 5mg twice daily. So 10mg a day as well. I had commented before that I think it does not make sense to put you on IVIg at 50,000 while also trying promacta. If you don't want to follow the advice of the mayo clinic and want to give up on promacta without trying the 75mg dosage, that is between you and your doctor. Continuing to use promacta without actually giving it a shot just doesn't make sense and increases your risk of strokes and clots. Not good stuff! There is nothing to say that you have to keep trying promacta if you aren't ready to give it a full shot, if you know what I mean. It's okay to be scared and to not be able to wait out some of the lower counts while you are waiting to see if it works. Maybe that just means that it isn't the right treatment for you now. At some point you may not want to deal with the dex/steroid side effects any more and be more receptive to trying something like promacta or NPlate for maintenance. You are in the early stages and are probably still coming to terms with having ITP. Maybe going for the steroids works for you in the short term until you are better able to accept that you might have to deal with low counts for a long time. I think a different local doctor for you would be better and help you with your fears, because your treatments are not being responsibly managed by your current doctor.

It's all about choices and trade-offs. We all have to make tough decisions and you will have to work through your concerns in the best way for you. Continuing to learn is the best way to get past the fear and to keep you from making decisions based on fear that aren't good for your long-term disease management. All the best!

Hi,
Thanks for your thoughts. It is hard because my dr doesn't want to be a team he wants to tell me what to do. I will try the 75 of Promcacta if this current treatment of CBD and Parasite cleanse doesn't make a difference but I am scared to take 75mg of Promacta right now with my counts at 112,000. Right? Target is 50,000.

Heres what I would do and hopefully it won't be an issue...take IVIG X 1 day for a bridge if platelets go down to 30,000 on Friday (he wants it at 50,000-way too high) and then up the Promacta to 75.

That makes sense right?

Thanks!

Cindy - what makes sense is to use Promacta only and see what it does on its own. No bridges. That might mean that you'd experience a drop in counts, at which point you'd raise the Promacta dose to 75 and see what happens after a few weeks. If counts still do not respond, then you know Promacta isn't working and you'd stop that drug altogether and try something else. Most people know going into Promacta that they might experience low counts and have to ride it out. If it's not working for you, and we have no way to know that right now, then there is no point continuing to take it. You will never get stable mixing all of these treatments and will continue to chase counts all over the place using these bridges. If you fear the low counts that much, as Mom said, then maybe Promacta isn't the right treatment for you right now.

My Hema wouldn't treat at 30k, then again, I sought out a conservative hematologist. Sometimes I think he might be too conservative...

Anyway, dor what it's worth, when my Hema agreed to put me on Promacta, my count was 16. After some running around with insurance for approval and their rules for purchase, it was maybe 3 or so weeks before I received the pills. I know none of us likes having low counts for a lot of reasons. Thankfully I wound up with just some new body art (what most people refer to as bruises). Of course, then it takes time for the pills to have an effect...

I don't know if that helps, just trying to offer some encouragement for not stressing out and not adding a ton of meds to your body all at once.

Cindy I think several of us have suggested that there is a lot going on treatment wise so you do not know what is working and what isn't at present.
I agree with Sandi stay Promacta ONLY and give it time.
Quite frankly in my personal & professional opinion taking IVIg at this stage is dangerous and completely unnecessary. If your haemo is forcing you into this then it is time to change to a new one.
The only reason I am taking Promacta is to keep my count above 25 as I am too symptomatic below that. By which I mean I am covered in bruises, am so tired and cold I can hardly function. Get below 12 and I have blood blisters in my mouth, get into single figures and I drip blood nasally. If it wasn't for this I would opt not to treat at all but I still have to work. Once I have retired I may well stop treatment and see what happens.
Over here in the UK over 30 is an acceptable count (unless surgery is involved when a count of 50 is required) and a watch & wait approach is generally applied.

Cindy1 wrote: Hi,
Thanks for your thoughts. It is hard because my dr doesn't want to be a team he wants to tell me what to do. I will try the 75 of Promcacta if this current treatment of CBD and Parasite cleanse doesn't make a difference but I am scared to take 75mg of Promacta right now with my counts at 112,000. Right? Target is 50,000.

Heres what I would do and hopefully it won't be an issue...take IVIG X 1 day for a bridge if platelets go down to 30,000 on Friday (he wants it at 50,000-way too high) and then up the Promacta to 75.

That makes sense right?
Thanks!

No, Cindy, I still don't think you are getting the idea about the Promacta. You do not take ANY IVIg (or steroids or NPlate or any other treatment) while you are trying to see if Promacta will work for you. Your count may get low. You may get bruises. You may get mouth sores. You start the medication and see what happens with your count. Maybe you start off at 10 or 15 or 23. Maybe after a few weeks you trend slightly higher. Maybe just up by an average of 10 or 20. As long as you aren't throwing other treatments of ANY KIND in there, you will know that you are having a gradual upward trend over time. Some patients get a spike quickly from Promacta. Others (like me and lots of others on here) get very slow rises into safe numbers. Safe numbers may look like 35,000 one week and 55,000 the next. You have the right ideas about what the correct count ranges are, but you are missing the idea that you can only titrate your dose if you aren't on anything else that is simultaneously altering your count.

Frankly, you have been given some great advice from Anne, Sandi, and ytsejam02. Absolutely spot on. I personally believe that Promacta and NPlate are the best treatment options we have now (that's why I'm going that route!). If you want my personal opinion of what I would do in your situation, I would immediately stop doing IVIg and Dex of any kind and let them clear out of my system to see if Promacta can do anything for me. But you are not us. You may totally freak out and be unable to live normally if you have to spend some time with some low counts to give it a chance. You know yourself and how you will react best. My steroid side effects (insomnia, personality changes, weight gain, moon face, reading about long term effects on so many body systems) were far worse than any side effects (none at the moment) from Promacta, so that factored into my decision. Maybe you do these dex pulses and don't have side effects, so that is working for you.

Anyway, just wanted to clarify the IVIg and Promacta thing (no no no on doing them together). I totally concur with all of the other advice above. And if your doctor is forcing IVIg down your throat, you REALLY need a new one. That would be non-negotiable for me.

Just my advice, I am just sharing my personal thoughts. Keep working through it all. That's what we are here for

Thanks! I appreciate you spelling that out.

Thanks for spelling it out for me. The problem is my counts have gone down to 2,000 then 2 weeks later 1,000. It really isn't safe so I get the bridge idea of IVIG at least at 10,000 but not at 50,000. sigh.
Anyway maybe it will be 50,000 or above Friday and it will be a non issue.

Thanks. I agree with your doctor!

Cindy - most of us have been down below 5k, you're not alone there. The symptoms matter more. How were your symptoms at those counts?

HI,
To answer your question, by the time I am at 5,000 I am crashing down to 2,000 or 1,000 it does not stop. What happens is bI get blood blisters in my mouth. Of course on the downward trend I have multiple gotten bruises which are fine but the up to 6 blood blisters in my mouth are concerning to me and the drs. It is just too close to the brain having little bleeds. Have you heard of may people getting multiple blood blisters in the mouth? Anyway, crosssing my fingers for decent numbers tomorrow. I was 112,000 this past Monday.
Be Well

Cindy1 wrote: HI,
To answer your question, by the time I am at 5,000 I am crashing down to 2,000 or 1,000 it does not stop. What happens is bI get blood blisters in my mouth. Of course on the downward trend I have multiple gotten bruises which are fine but the up to 6 blood blisters in my mouth are concerning to me and the drs. It is just too close to the brain having little bleeds. Have you heard of may people getting multiple blood blisters in the mouth? Anyway, crosssing my fingers for decent numbers tomorrow. I was 112,000 this past Monday.
Be Well

Just regarding the blood blisters, yep, I've had bouts of those throughout my life. My maximum number at one time was maybe 12-15? They are super annoying when you want to eat, that's for sure. I think lots of people get blood blisters at low counts, but I'm not one to know the likelihood of getting a brain bleed if you have blood blisters. In all of my times with counts that low, I luckily never had any brain bleeding (maybe 40-50 times throughout my life when my count got low enough to get the blood blisters).

A good idea might be to search here on the forums for stories of other people who get counts of zero and 1 and see how they managed periods of really low counts (some people have a hard time getting above 5!) Just to give you more of an idea that you are not alone. And on the blood blisters, oh yeah, that's part of the ITP joy that I think most of us have had at one point or another.

Hope your counts do well.

Thanks for sharing and your good thoughts for my counts tomorrow. The doctors say having the blood blisters, makes one more susceptible to bleeds. Before I got blood blisters, he was fine with me at 5,000 or lower. I will do some research on our site, good idea.
Be Well,
Cindy

I get the blisters below 20 most of the time. Sometimes just 1 or 2 sometimes a lot. Usually I just have a couple of large ones and a lot of tiny ones. They seem to be worse now that I'm taking a blood thinner off and on for a clot.

10/4/17 plt 42,000
50mg Promacta daily

Coincidentally, exact same platelet count as last time. In the zone, all is good and no changes.
Hgb improved and is now 11.5, so obviously my oral iron is doing the trick and I'm working my way back up.
Looks like the CBD isn't doing anything in particular for my platelets. I just started my second bottle of it and will likely not order it again, since it's not cheap. I'll finish out what I have, just in case there is some sort of an upward swing next time, but it looks like not much/any effect on me. It was worth a shot

Hi momto3boys,
That is great news that your platelets are stable and in a good zone!
I stopped the CBD cause my platelets tanked on them. Now I have been on Promacta for two weeks at 75mg. I also started some homeopathics last week. I'll try anything, Got any snake oil. HAHA. So this Friday will tell if I have stabilized or not. That is my usual 2 week wipe out and need IVIG date. I'm hopeful it will go well.
Next week they want to do a bone marrow biopsy cause my WBC have been hovering lowish 2.8-4 lately. They believe it is going to show nothing important or bad. How are your WBC?
Finally, if platelets are not better, I'll do Rituxin in 2 weeks to reboot my system.
Never a dull on this end. Glad you are getting some dullness on your end.
Cindy

Hi momto3boys,
That is great news that your platelets are stable and in a good zone!
I stopped the CBD cause my platelets tanked on them. Now I have been on Promacta for two weeks at 75mg. I also started some homeopathics last week. I'll try anything, Got any snake oil. HAHA. So this Friday will tell if I have stabilized or not. That is my usual 2 week wipe out and need IVIG date. I'm hopeful it will go well.
Next week they want to do a bone marrow biopsy cause my WBC have been hovering lowish 2.8-4 lately. They believe it is going to show nothing important or bad. How are your WBC?
Finally, if platelets are not better, I'll do Rituxin in 2 weeks to reboot my system.
Never a dull on this end. Glad you are getting some dullness on your end.
Cindy

Cindy1 wrote: Hi momto3boys,
That is great news that your platelets are stable and in a good zone!
I stopped the CBD cause my platelets tanked on them. Now I have been on Promacta for two weeks at 75mg. I also started some homeopathics last week. I'll try anything, Got any snake oil. HAHA. So this Friday will tell if I have stabilized or not. That is my usual 2 week wipe out and need IVIG date. I'm hopeful it will go well.
Next week they want to do a bone marrow biopsy cause my WBC have been hovering lowish 2.8-4 lately. They believe it is going to show nothing important or bad. How are your WBC?
Finally, if platelets are not better, I'll do Rituxin in 2 weeks to reboot my system.
Never a dull on this end. Glad you are getting some dullness on your end.
Cindy

Well, it's hard to say that your platelets tanked on CBD because you have a lot of other medication going on, so maybe your CBD didn't do anything and your platelets fell as they have been lately when your IVIg and Dex wear off. Maybe you can revisit it sometime once you get more stable to see if you get some benefit. I haven't totally written it off myself. There are lots of variables and different formulations/doses/methods of administration. There's a lot to experiment with there, but I'm not more motivated at the moment since Promacta is working well enough for me right now.

I had a bone marrow biopsy way back when (32 years ago when I was diagnosed), and it ruled out other conditions and confirmed my ITP diagnosis. Hopefully that will go well and rule out other reasons for your low WBC. I had a splenectomy done as a child, so I'm not a good person to ask about WBC. Mine are either at the high edge of the normal range or above the normal range by a bit (11-12 ish when higher, in the 10s most of the time), but people who have had splenectomies tend to have high white counts.

It looks like you are considering Rituxan, and searching for more information here in the forums as well as the PDSA treatment information pages is a good starting point. From your calling it a "reboot," I'd say you should definitely look into it more. It is a pretty serious treatment with significant affects on your immune system. My previous doctor wanted to try Rituxan with me before Promacta, but I said no after reading about all of the risks and potential complications. We agreed on my trying Promacta instead because I was more comfortable with the risks involved with that than with Rituxan.

If you do decide to try Rituxan, please make sure that you are not taking Promacta at the same time. Those treatments are not intended for use together, and your doctor thus far hasn't followed treatment guidelines on other medications, so you need to make sure that he doesn't do those together. I know it's tempting to try everything at once, but that is not going to give you stable counts and has the greatest potential to cause you harm. Most people with ITP have problems with the effects of treatments, not because of low platelet counts.

It's always tough to pick what you want to try, so the best way is to just read about everything and educate yourself. I hope your biopsy goes well and everything is okay with that. Your time for boring maintenance will come too. I paid my dues with LOTS of exciting times over my 32 years, even though I am relatively stable now. The beginning after diagnosis is always the toughest time to get through while you are still learning about everything. It will pass

Cindy1
I think you should stay on Eltrombopag for a while and nothing else, as others including me have previously advised.

I think you should persevere with eltrombopag too Cindy.it took me about 6 months to get from 1 to 20 on 75 mg after I had a crash but the better news is that on that dose both my WBC and my red cell count quickly normalised. I had had a bone marrow biopsy that showed very poor marrow but now,21 months later I still have normal white and red counts and my platelet count is 130 on 75mg3x wk and 50mg 4x wk.

Looking good Margaret

Just doing a little dietary experiment effect update. I've been too busy to go for a count last week or this week, so I'm just going to do one next week when I am scheduled to see the doctor anyway.

Anyway, I finally decided to go back to no sugar and no flour, after struggling for the past few months to lose weight/improve health with intermittent fasting (stopping eating around 4-5 pm and then having breakfast around 9 am) as well as consuming primarily healthy foods. IF is pretty easy to manage and feels good, but it just seems that my body and sugar can't be friends. Poor sleep, brain fog, constant food cravings, etc.

I haven't cut dairy, but I am doing no added sugar (still eating fruit) and no grains for two weeks to see how it goes. Today is day 4, and I'm past most of the withdrawal symptoms (headache, feverish feeling, a bit cranky). Of course, my platelets have crashed (new ITP bruise on leg and a single blood blister in my mouth), which is annoying. I'm hopeful that it's just from the stress of going cold turkey with the sugar and that they will rebound some by next week's appointment.

Regardless, sleep, energy, and mental clarity are all SOOO much better. Cravings are way down as well. I remember initially feeling much better with the paleo as well, but just found it so hard to maintain. Maybe having dairy but no sugar will make this more sustainable. If being in better health also means that my immune system is working harder (and thus eating more platelets), then I'll have to reevaluate what to do with that catch 22. It's still early days, though.

I did watch part of the "What the Health" documentary, but had a hard time giving much credence to the doctor who was claiming that sugar consumption had no causal effect with regards to diabetes. My mother developed type II diabetes late in life, and watching her overall dietary profile led me to see the effects of sugar on her. She never liked meat much, so that wasn't much of a factor for her, but her sugar addiction increased over time and led to very disordered eating. I think there are people who can do great on a vegan diet (I know some), but with my genetics, I'm seeing first hand that my body has more trouble with sugars and white flour. I guess it all goes back to individual genetic makeup and we have to experiment on ourselves and see what makes us feel better. I'm at least on the path to figuring myself out (better late than never!) and will keep experimenting with different healthy foods and diets to see what works. Epigenetics and factors that control gene expression are really interesting and something I'm trying to learn more about as well.

Just a little random update for my thread which I can look back on later to keep track of what I've been trying.