My Promacta Journey

Sandi,
No, no MTHFR gene mutation testing. I've read some about that, and it would be interesting to have that data.

Anne,
Thanks for that article! Interesting read, and being on the lower end of the count spectrum, it sounds like it should mostly have been pretty close in my case (no normal counts here, lol!). I'm still suspicious though, because it seems to me like there would be dependencies on the technique/timing of the phlebotomist (sometimes I would get the stick and then a relatively long delay before the actual collection. Even with low platelets, surely my "giant platelets" would be doing some clotting/clumping and changing of the values).
I'll always wonder Especially if my new labwork all ends up showing higher numbers.

Are you on Nplate soon. Thoughts on Nplate vs Promacta? Thanks!

Hi,
I just read through your journey. All of the entries are really helpful. I am just 2 months into this roller coaster maddness ride. I think that they called my issue ITP without doing a strong investigation of other issues. I do have positive high ANA screen, High Fibrin Degrading Products, Positive AB Sjorgens A 1.2, and high (21) antithyroglobulins.
I am glad you found a good dr. I had a similarly conservative alarmist dr initially and switched to a great one that the Platelet association recommended but it is still very confusing and hard for me to get my arms around what is better Nplate vs Promacta vs maybe something else and it is was hard for me to think I am safe at 7,000 platelets but am making friends with that, I am still not sure I believe I have a true ITP diagnosis. But who knows!?! I am thankful for all the community and help on this website! I'd be lost without it. Cindy

Cindy:

Your labs do indicate possible rheumatological or thyroid disorders, but they probably have not progressed enough yet to be diagnosed. It's also possible that it will never happen. Antibodies can come and go. ITP can be a first symptoms of either or a common joining disorder. ITP is always considered to be the primary disorder until something else is diagnosed, then it becomes secondary.

You don't have to believe that you are safe at 7k. It's not a safe count, but if you have already started treatment (which you did), there usually isn't much choice but to wait it out. That's exactly what you did and counts went up. If symptoms are few, 7k is not a reason to panic nor is it a medical emergency but yes, you should treat at that point if possible..

Cindy1 wrote: Hi,
I just read through your journey. All of the entries are really helpful. I am just 2 months into this roller coaster maddness ride. I think that they called my issue ITP without doing a strong investigation of other issues. I do have positive high ANA screen, High Fibrin Degrading Products, Positive AB Sjorgens A 1.2, and high (21) antithyroglobulins.
I am glad you found a good dr. I had a similarly conservative alarmist dr initially and switched to a great one that the Platelet association recommended but it is still very confusing and hard for me to get my arms around what is better Nplate vs Promacta vs maybe something else and it is was hard for me to think I am safe at 7,000 platelets but am making friends with that, I am still not sure I believe I have a true ITP diagnosis. But who knows!?! I am thankful for all the community and help on this website! I'd be lost without it. Cindy

Hi Cindy! I'm glad that some of my history was helpful for you. Since you've only been dealing with things for two months, I can understand that it must still be quite overwhelming. I've been dealing with things since I was a child and I still get overwhelmed at times.

I'm glad that you were able to find a better doctor. Until now, I didn't have any doctors that were as thorough, so it's quite a pleasure to be in good hands! Hopefully one of the treatments you are considering can get you up and above 30,000 so that you will achieve a safer count. I think NPlate and Promacta are both great choices of the options that are available now. There are people who have success on both, and then there are people for whom one or the other works. You won't know until you try, and often the logistics of taking the medication determine which one patients try first. If going into the office for a shot once a week sounds easier for you (I'm assuming you are in the US. In the UK they can self administer NPlate at home and don't have to go into an office every week), then you might try NPlate first. If taking a daily pill (with some dietary restrictions surrounding when you can take it) sounds more convenient, then Promacta might be somewhere to start. If your insurance ends up with one of them being cheaper than the other, then that might determine what you choose.

Some people don't like the idea that "but I'll be taking this medicine forever!" because these are considered "maintenance" medications. But people have achieved remissions on them and have been able to stop taking them after they stabilize. No one knows what the future holds, and what new treatments may be available soon. Getting safe counts with the minimum amount of treatments and toxicities is the name of the game! Good luck in making your decisions.

Hi Guys
So I went to a PCP who actually drew blood to check for autoimmune and infectious diseases yesterday. YAY! And by the way count is not 145,000. Better than last weekend 2,000.
But I have a few new questions:
1. Hematologist wants me to take 50mg Promacta every day starting now. I forget if at what number of platelets I should stop it. Also, does it take 2-3 weeks to start working?
2. He told me to consider Rituxin instead of Promacta too. Any thoughts?
3. He wants to up me to 10mcg/kg of Nplate from initially 5 - 8mg/kg if my platelets are 20,000 or below Wednesday and whenever.
4. I have been having nausea lately on no meds is that a symptom of ITP?
5. At what point does it make sense to do a bone marrow biopsy?

Thanks for your help with these questions.
Cindy

Hi Cindy. My thoughts:

1. Promacta can work in a few days for some and a few weeks for others. It's impossible to know when it would start working for you. What dose did he give you? You don't really stop taking Promacta....if counts are too high, the dose should be lowered to try to reach the target count of around 50k. It might take a few times of playing with the dose to get it right, but you don't just stop the drug. Usually when the drug is stopped, counts drop. It's a maintenance drug.

2. I wouldn't consider Rituxan. With your history of labs that may point to other autoimmune problems, you might fall into the group of people that seem to have hypersensitivity reactions to Rituxan. That's just my opinion based on years of observation. Most people that try Rituxan usually end up on Promacta anyway at some point. You're already ahead of the game.

3. If you are starting Promacta, I'm not sure I'd consider N-Plate too on top of that. They should not be used together and could cause counts to skyrocket. You also wouldn't know if Promacta is working or if it's N-Plate that caused counts to go up. This guy really treats aggressively and it's almost too aggressive. Your ups and downs are too extreme and that is more dangerous than just easing things along in the right direction.

4. No, nausea is not a symptom of ITP.

5. Protocol states that the only time a bone marrow biopsy is needed is if a patient does not respond to any treatment or the CBC shows abnormal red or white cells in addition to low platelets. Bone marrow biopsies are rarely ever needed.

Wow Sandi, I REALLY appreciate your response!!!!!!
I tried looking answers up but it was not going well and you know all the answers and your reply was speedy quick. THANKS, it is so helpful.
I felt the same way about adding the NPlate especially at 10mg/kg. The whole thing is kind of crazy. He will want to give me Nplate though if my count is 20,000 or less. Hopefully it will not be an issue and I'll be over 20,000 or at least over 15,000 but the truth is I don't want to be back to 2,000!

He gave me 50 mg of the Promacta and I am at 150,000 platelets right now. So what you are saying is, we watch it and see where it goes over the next few weeks and shoot for a target of 50,000, right?

Thanks also for the bone marrow biopsy info. Would you consider I respond to medication even if it lasts just 2 weeks before I bottom out again? My RBC and WBC are within normal limits.

Thanks for you help and have a great night.
Cindy

Cindy:

I don't really know all of the answers, but I know enough. Hopefully your count is not below 20k because N-Plate and Promacta should not be used together. They both do the same thing. That could be a dangerous situation and is not necessary. That would be like using Dex and Prednisone at the same time. Did you start taking Promacta yet?

Yes, I would consider you responsive to treatments even though your counts drop. Your counts drop because your doctor is not using the treatments correctly according to protocol. N-Plate should not just be used as a quick boost and then stopped. You get the kitchen sink thrown at you, your counts jump up and then he stops treatment until you bottom out again. That will not allow stability. When you start Promacta, you have to ride it out for a few weeks and see what happens. You have to let the drug do it's thing and track the response. You can't do that if you are using other treatments on top of it. I could see using something else with Promacta if you were below 5k and had symptoms, but not N-Plate.

Thanks! I will be prepared with your good info.
First Promacta pill tonight........
Be Well,
Cindy

Oh, Nplate with Promacta. Heavy sarcasm: what could possibly go wrong?

Normally steroids or IVIG, depending on which one responds to, is used to bridge the time between Nplate and Promacta. Seriously, I would consider taking low dose Aspirin everyday during this transition to reduce the probability of having a stroke.

Taking Nplate & Promacta together is plain dangerous. Giving IVIg to patients taking either is also dangerous. My haemo will not use it for patients on TPOs. Counts on Nplate can swing all over the place. Mine could be anything from high 20s to over 200.
Personally I'd stick with Promacta alone and give it chance to work. If it does you can then manipulate your dose to keep your counts close to 50k as possible. I've been on it 6 months now (with no side effects ) and jiggling around with my dose. I've been on 25/25/50 since the beginning of June and my count is holding at an average over last 4 counts of 55K (lowest 46k highest 68k) which is exactly where I want to be.

Well, with counts that are not stable and prone to drop, I'm not sure that aspirin is a good idea. There's already too much in the mix.

Thanks so much! Needed a laugh from sarcasm this morning! Crazy ideas this dr has. My new primary dr is having me see another hemo, I'm really glad after reading all the responses to my question and his plan! Fingers crossed there is a hemo that can deal with this safely!

By the way when I was at 1.3 million I did take baby aspirin!

I agree I never want to be at critically high levels again either. I have been from 2,000 to 1.3 million in the past 2 months! It is pure insanity. I am not sure how I am not incredibly depressed. I am trying to remain positive. Hopefully the Promacta will get things stabilized!

First, I am glad you are stable! Second, thanks for giving me hope that this Promacta might stabilize my platelets at a safe level and I can live a normal life again!!!!!!!!! I feel like I have been in a time warp since May 1.
Heres to being stable and safe.

A new Hemo is a good idea. I'm seeing doctors that fall into three categories: 1. They know exactly how the TPO's should be used and act accordingly, 2. They use the TPO's but seem to have no idea what they are doing and use them inappropriately, and 3. They refuse to use TPO's because they have formed opinions about them that are not quite accurate.

I can see taking aspirin when counts are way too high, but not in the normal range since a fast drop can happen. You don't know if you will even respond to Promacta yet. I'm betting that you will, but have no idea how long it will take. It could be right away. Hopefully he will dose you accordingly.

My fingers are crossed. I'll keep you all posted. Thanks again for your sharing your experiences! Your messages and information have helped me out soooo much and mean the world to my treatment and my mental health.

Hi
Sigh,
I am getting an endoscopy Thurs am if platelets are over 50,000. Lots of luck with that one right? Well maybe with the Promacta 50mg - 3rd dose tonight the platelets will start stabilizing?

But if my platelets are 20,000 on Thursday, aren't I better off adding an Nplate shot then my numbers going back to 2,000 again? I think so but don't understand the dangers other than high platelet count and clot risks. Any input?

Trying to keep my spirits up.

I don't recall what you were on that sent your counts skyrocketing up to 1.3 million. Whatever is was please don't do that again. Your doctor wants to increase your Nplate dose to 10mcg?? That is reckless dosing of a potentially very dangerous drug. Adding in 50mg Promacta- I loved Hal's response when he wrote- What could possibly go wrong? haha We've had people on this forum who have had strokes from counts too high with the TPOs. Please be careful. Hope your counts stay up! I responded to Promacta within a week. good luck! This is from the Amgen website regarding Nplate and blood clots--

Important Safety Information
What is the most important information I should know about Nplate®?
Nplate® can cause serious side effects:
Higher risk for blood clots:
You may have a higher risk of getting a blood clot if your platelet count becomes high during treatment with Nplate®. You may have severe complications or die from some forms of blood clots, such as clots that spread to the lungs or that cause heart attacks or strokes. Your healthcare provider will check your blood platelet counts and change your dose or stop Nplate® if your platelet counts get high.
If you have a chronic liver disease, you may get blood clots in the veins of your liver. This may affect your liver function.

Cindy:
Clot risks are serious. As Posey wrote above, clots can cause heart attacks, strokes and DVT's, all of which can be fatal. Yes, there is a risk here on either end....low counts can cause bleeding or clots can cause strokes/heart attacks. Neither one is preferable of course, but having low counts does not mean that something awful will happen. You've already been there and you are fine. Symptoms matter more than the actual count. If you get N-Plate on top of Promacta, you run the risk of super high counts again. Clots are more common when counts shoot up like yours have in the past, especially when you are on two drugs that can cause clots. That should be avoided. Chances are, you will respond to Promacta and it's okay to just wait for Promacta to begin to work. I think your doctor put a real fear of low counts into your head. Yes, it can be scary but you respond to treatments so you will get out of the danger zone in a reasonable time period. You don't have to put yourself at risk of clotting to achieve that. Slow and steady is okay.

We've had members here who have had blood clots. I've seen it happen more often than bleeding. Young people in their teens and twenties have had strokes. I get e-mails from parents occasionally asking me about it because it happened to their child. You have every reason to be hopeful that your counts will be under control soon with Promacta (provided your doctor doses it right). Everything could be stable soon, so try to stay calm and focus on that.

Thanks for the encouraging words Sandi; I needed them.
I agree 10/kg is way too much NPlate. And hopefully the Promacta will kick in!
I can keep taking the Promacta at 10:30 at night. As long as it is two hours after dinner, right?
Cindy

It was that the triple antibiotics along with platelet bag, IVIG, NPlate and dex allowed my blood count to climb to 1.3. and within reasonable limits for 7 weeks.
I have never sustained a normal platelet blood count for more than 2 weeks except whenm I had the antibiotics added into the mix. Ever heard of that?
And OK, I get it. I will not let them over drug me! No blood clots for this gal or any of us!!!!
Can I get an endoscopy with biopsies with a 50,000 platelet count?
Thanks,
Cindy

Yes, most people will not maintain a normal count unless they are on treatments that keep the count stable. Your treatments have been too erratic to maintain counts. Your counts are responding erratically just like the treatments.

I forgot about the husband who was here a few months ago. He suspects that his wife died of micro-clots due to N-Plate use. Protocol should be taken seriously unless there are unusual circumstances that warrant another plan. Your situation seem to be normal.

If the doctor says that an endoscopy can be done with 50k, it probably can. DMann just had a splenectomy with less than that.

Wow Sandi,
That is scary and sad stuff. I took a pic of it and will use it if I need to with my doctor. OK, deep breath, my situation seems to be normal...consistent meds and consistent platelets here we come!
Have a good night and thanks.
Cindy

FYI...
The Dangers of Nplate (Romiplostim) include Death

IMHO, the day you started Promacta is the day your counts became under control.

Also, best to not eat 4 hours before or after taking it - not 2. For details about those pesky 'cat ions' may want to go over the link mrsb gave on taking Promacta as recommended by the manufacturer.

Cindy - it's probably better to use actual literature for your doctor rather than posts from a discussion board. It's not nearly as credible as information from the manufacturer or real studies.

Good point.
I called Nplate and they have no studies using Nplate and Promacta together.
Hopefully the platlets will be high enough that this won't be an issue.
Have a good night!
Cindy

I've been doing a bit of traveling and neglected to update my thread after my last appointment.

The 3 counts that I got from the Georgetown labs were 98, 45, and 90. Based on those "target zone" numbers, Dr. Kessler advised me to stay the course with Promacta (50 mg) for now. Certainly more consistent results than the rollercoaster numbers I was getting at the finger prick lab, so this sounds good to me. I will be seeing an ophthalmologist in about a week to check on the status of any cataract development. Fingers crossed that things are okay with my eyes, and then I'll just be maintaining with Promacta for the foreseeable future. I'll be doing lab work in my area every two weeks (the doctor said that I can stretch this out to once a month, but I'm not quite ready for that big of a gap yet. Maybe work my way to 3 weeks if the numbers are balancing out.) and checking back in with the doctor in 3-4 months.

Just an update that things are boring (always great news!) with me and I'm hanging out at 50mg.