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TOPIC: Watch and wait recommendations?

Watch and wait recommendations? 4 weeks 20 hours ago #68606

  • Gmelnick
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Hi all,

I was just diagnosed with ITP less than a month ago. I had no symptoms, my low platelets were an incidental finding when I went to an urgent care for a stomach bug.

I did one round of high dose Dexamethasone (40mg orally for 4 days) which brought my platelet count from 5 all the way up to 200. 2 weeks after I started the steroids, it’s now back down to 50. My hematologist wants me to do another round of high dose Dexamethasone for another 4 days and she also wants to schedule me for rituxan infusions.

I am a 31 year old woman. I am very healthy, and I have never had any health problems up to this point in my life. I have zero symptoms other than a heavy menstruated flow. No bruising, no bleeding, no petechia. When my platelet level was 5 and they did the blood draw, I stopped bleeding immediately and did not even saturate the gauze pad.

I’m wondering what is everyone’s experience with this watch and wait approach? My hematologist is recommending all of these serious treatments that have serious side effects with no guarantee of it actually sustainably increasing my platelet level. It’s hard for me to justify going down this path. I’d like to try the watch and wait approach but I want to hear other’s experience. What is the real risk of bleeding? At what platelet level?

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Watch and wait recommendations? 4 weeks 13 hours ago #68607

  • JJ
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Personally I wouldn't treat at 50, I'd wait and see what happens first. But I would treat with a count of 5. So I would wait and if it goes back down I'd treat. Which treatment you choose is another question entirely. I use Nplate.

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Watch and wait recommendations? 4 weeks 13 hours ago #68608

  • Gmelnick
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What has been your experience with Nplate? Did you use that as your first second line therapy or did you try something else before that?

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Watch and wait recommendations? 4 weeks 12 hours ago #68610

  • mrsb04
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Gmelnick
A count of 50 does not need treating, I agree with JJ watch and wait, more steroids at this stage is a no no, as for Rituximab being suggested already I'm speechless. My advice is find a new haemo.

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Watch and wait recommendations? 4 weeks 12 hours ago #68612

  • ecoclayton
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I would and have waited at 50. In my case I have been slowly dropping the from a high of 118 (6 months ago) until yesterday when I was at 30. I am going to try Doptelet, but am getting one more count next week to see where I am at first. I have only tried Dex, that didn't do anything, and prednisone that took me to 118.

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Watch and wait recommendations? 4 weeks 11 hours ago #68613

  • Gmelnick
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Mrsb: When I first found out about this last month, my platelet count went from 41 to 5 overnight, so I think she was trying to be cautious since previously it had dropped significantly. That drop could have been because I was sick with the GI bug though. In terms of the recommendation for the rituxan so early... all the studies that I've read so far have indicated that using it concurrently with dex early in diagnosis of ITP produces more favorable results. Have you seen other information? What is your experience?

What I was thinking this time is to do the second round of dex, then see where my platelets go. Already I have been at a platelet level of 5 with no signs of bleeding. I'm confused and hesitant to continue with other types of treatment because if I'm at such high risk of bleeding with a level of 5, why didn't I hemorrhage when I got my blood drawn? I had no problem clotting within 30 seconds. Do any of you have any insight into this? Thanks!

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Watch and wait recommendations? 3 weeks 6 days ago #68619

  • midwest6708
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I've been dealing with this for 11 years and have yet to be able to correlate count with symptoms. I've been at 5 and had none; have been above 50 and had spontaneous bruising and petechiae. I will say though, that since I've been on NPlate, I have fewer symptoms of any kind, even when the count is very low. I have no explanation for any of it. It just happens sometimes.

In the beginning, I refused to treat until the count was pretty regularly below 30. Prednisone worked well for me at below-typical doses, so I stayed on it for over 2 years. Then I wanted off it. Went to NPlate. Tried Rituxan two years ago, had a terrible reaction and went back to NPlate.

I've glanced at the studies regarding Dex and Rituxan, but don't know enough about them to comment. It's worth looking into more deeply, though, especially since you're in early stages.

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Watch and wait recommendations? 3 weeks 6 days ago #68623

  • poseymint
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In the UK they tend to look more at symptoms than numbers. Thats important to know. You are doing a good job watching your symptoms and seeing what your body is telling you. There have been many reports on this forum where the doctors are looking only at numbers and they end up over-treating the patient with toxic drugs trying to get their numbers up to normal. On the Mayo Clinic website there used to be a warning to ITP patients, it said, " the treatments are often worse than the disease". That warning has been taken down, but I always remember it when choosing a treatment or just living with low platelets.

I also have little to no symptoms of bleeding even at low numbers (and I'm in my 60s). Over 10 years my platelet counts have been as low as 1, 2 and 3 with no symptoms at all. And yes, like you said, my blood also clots right away when I get a blood draw. Often if I have bruises its when my counts are in the 20-30 range. I believe there are other factors compensating for low platelets in my case. there are studies about that- microparticles/ platelets too small to count, activated platelets and large platelets that work extra hard, plus other chemicals in the "clotting cascade" that pick up the slack for platelets. Blood clotting is so important to survival that there are over 50 chemicals involved in clotting called the "clotting cascade". Platelets are one important piece, but its very much more complicated than low platelets=bleeding. There is much more going on.

So what I've seen is that everyone has to assess their own risks. Like what you are doing, watch your symptoms and decide what you are comfortable with. I had more fear when I was first diagnosed, over time I developed more trust that I was okay. I have refused many treatments such as splenectomy, platelet transfusions, Nplate dose increases because low platelets are simply not a medical emergency for me. That can make the medical staff quite upset, but I've found with ITP, you have to trust your instincts and make decisions for yourself.

I like to have counts over 20 but I'm not concerned when they go in the teens. Under 10 and I would take prednisone to bump them back up. I have a policy to not drive on the freeway if counts are under 20. My counts are usually in the 30s- I get weekly Nplate injections to keep them there. As others have said, I would not treat if counts were 50. You might have a temporary ITP and numbers will go back up naturally. I hope so! Good luck

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Watch and wait recommendations? 3 weeks 6 days ago #68624

  • mrsb04
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Gmelnick
I wasn't offered Rituximab initially and as a nurse if I had been I would have declined it at such an early stage. It is not without risk or side effects. I've cared for patients who have used it to suppress auto immune inflammatory conditions but they were full of cold permanently after taking it which put me off. However that is not to say I would never try it. I may have to one day. It would be preferable to a splenectomy which I am never having.

Poseymint is right to warn about treatments being worse than the condition.
I started on Prednisolone as 1mg/kg 5.5 years ago which worked almost instantly from count of 12 to 87 in under 72 hours. I am still weaning off the wretched stuff now. It is no good as a long term treatment as I need 20mg daily to keep count above 20. High doses make me absolutely manic/exhausted and incapable of functioning as an intelligent human being. Withdrawal symptoms ++ at dose drops so have had to taper at snail's pace. Am now down to 1mg/day.
I do take an occasional boost if my count hits the deck which it does if I contract a virus or undergo a major stress.

I tried various treatments before starting Eltrombopag (Promacta) 3 years ago:
- Azathioprine (partially successful but screaming diarrhoea once dose increased so stopped it).
- MMF (poor response until on maximum dose but depression and very low moods like never before).
- Fostamatinib (no side effects but didn't work).
- Romiplostim aka N Plate (counts swung all over the place anything from single figures to >200, gave it up as a bad job when a count of 6 resulted in the cancellation of planned surgery).

My symptoms have gradually disappeared since being on Eltrombopag. I do bruise at times but can always account for why, my natural clumsiness can be a nuisance at times.
I wish I could maintain a count above 20 without medication but that doesn't seem to be the case unfortunately as I become far too symptomatic.

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Watch and wait recommendations? 3 weeks 4 days ago #68629

  • Gmelnick
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Thank you all for the replies so far. This forum has been extremely helpful.

Mrsb, I am also a nurse. I have come across a couple of people that post on here that are nurses it seems like. More than I would have guessed. Being in health care I think we’re more likely to get out there and do our own research rather than just take whatever our doctor’s say at face value. I’m 31 like I said in my original post, I’ve never had any allergy or immune problems before. I don’t even have food allergies as far as I know (seeing a functional med doctor this week to maybe look into that...). I’ve worked in the ER for 8 years and maybe got sick once or twice a year. I’m incredibly healthy: I do yoga, hike, go rock climbing, eat vegetarian and minimize dairy already. It’s extremely frustrating to hear from the hematologist that we’re not sure what has caused this and there’s nothing that can be done other than these really heavy duty meds that have a ton of potential side effects and not that great of a chance of increasing my platelet count for a long period of time. I’m pretty thrown off having to deal with this all of a sudden, like many people on here I’m sure.

From what I’m reading from all of you, it sounds like at this point I should wait to see what my platelets do now that this second round of dexamethasone is over, which is what I was leaning towards. I posted another thread asking for data about the actual risk of bleeding at low levels. Someone posted an article that referenced an overall annual chance of major bleeding events for those in my age group as 0.4%. This makes me much more comfortable watching and waiting, especially since I have no major bruising, petechia, mucosal bleeding, etc., even with my platelets at 5! I will say that I have been having heavier menstruated cycles, but I’m going to talk to my PCP about getting started on a BCP.

I have another question for you all: obviously the big bleeding events we don’t want would be internal bleeding events like intracranial hemorrhage and GI bleeding. I’ve read this is very unlikely in all age groups, especially <40 years old. I know bleeding risk has more to do with the health of blood vessels, BP, etc. I’m curious if anyone has any information or experience about if anyone has ever had serious internal bleeding events without having any petechia, bruising, mucosal bleeding which I’m gathering are far more common than the internal bleeding events? I’d like to think there would be some external signs of bleeding before a sudden major internal bleeding event, but I’m not sure if this is just wishful thinking and me trying to rationalize my watching and waiting rather than aggressively treating?

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Watch and wait recommendations? 3 weeks 15 hours ago #68662

  • Gmelnick
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I’m posting on here for some possible advice..

My platelets yesterday were 30. This was 4 days after I finished my second round of 4 days of dexamethasone. My doctor wants me to start rituxan next week and do a third round of dex. So far, my only bleeding symptom has been heavy menstrual periods. My low platelets were an incidental finding, not something I sought care for. I responded well to dex both times. the first time my platelets went from 5 to 200, then dropped down again to 50. The second round they went up to 70, now back down to 30. I asked her about a watch and wait type of approach and she was pretty adamant that she did not recommend that. Does anyone have any input that could be helpful here?

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Watch and wait recommendations? 3 weeks 14 hours ago #68663

  • midwest6708
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Hello again.
Bear in mind that you're holding the reins. There are as many approaches to dealing with ITP as there are doctors. If you're sensing that yours might be a tad more aggressive than you prefer, it wouldn't be wrong to decline her recommendations. Proceed quickly only if you're leaning toward the newer theory that treating with a combo of therapies at onset of the disease can sometimes produce quicker and longer-lasting remissions than using a single treatment. There is some good information about that in the following article titled Comparison of first-line treatments for newly diagnosed Immune Thrombocytopenia, from the PDSA newsletter archive. (You may have to scroll down the page to find the relevant article.)
There's also a link within it to the full journal-published article, if your interested in that:
pdsa.org/2019-enews/item/1870-pdsa-enews-093019.html

That said, "watchful waiting" is becoming a more frequently-used, approved option. So if you're the type who feels the less intervention the better - especially interventions with higher risk ratios - don't feel dismissed by a doctor who doesn't have the same mindset. Watchful waiting even has its own paragraph on this site's treatments page, although it's more of a strategy than a "treatment" per se. If you haven't yet found the Treatments page, by all means look it up.

I was diagnosed at age 58 with a count of 27. I refused any treatment at all for 2 years, because my count hovered between there and 60 during that period, and I didn't like the risks of any of treatment out there. Then again... I do sometimes wonder if the kind of combo treatment described above would have served me better in the long run, if it had been offered. Too late to know now. And I also wonder if I'd have done things differently if I had been a younger woman with pregnancy plans. Individual circumstances play a huge role in treatment decisions. You have to know yourself well in order to make your best decision.

Read everything from reputable sources that your brain can absorb. Then you'll be able to sort the bad doctors from the best. I personally don't think inflexible MDs who have one agenda to push are ever best.

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Watch and wait recommendations? 2 weeks 5 days ago #68677

  • Gmelnick
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Thanks for your response.

I’ve done a ton of reading. I’m going to go ahead with the rituximab. I started my third round of high dose dex as my heme recommended.

I’m very active.. I love to go backpacking and rock climbing. I’d like to be able to get back to doing all my normal sci-fi cities with minimal need for monitoring. I think from what I’ve read so far, this has the highest chance of stabilizing my platelet levels for the longest duration and possible remission compared to all the other options.

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Watch and wait recommendations? 2 weeks 4 days ago #68681

  • midwest6708
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I certainly wish you the best of luck with it! Hope you'll let us know how it works out.

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Watch and wait recommendations? 2 weeks 18 hours ago #68712

  • Gmelnick
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Just an update.. I did my first rituximab infusion on Monday. My platelets were 58 before I started because I was on day 4 of the high dose dexamethasone. Yesterday platelets were up to 124! The infusion wasn’t bad at all. I didn’t have any infusion reactions. I did feel really tired and almost like I was sick when the infusion was done. I went home and slept and felt fine after. I’m not sure if it was from the infusion though or if it was from the IV Benadryl. They premedicated me with that to prevent any infusion reactions... I wasn’t able to sleep during the infusion even though it made me pretty drowsy because I had so much anxiety about the infusion. For the 2nd infusion they’re going to let me take Zyrtec instead. So if I don’t feel sick after the infusion then it was definitely just the Benadryl.

I’ve seen some posts about how people the respond to steroids tend to respond to rituximab. I respond to steroids and also seem to be responding to rituximab, just as an anecdotal point.

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Watch and wait recommendations? 1 week 6 days ago #68724

  • midwest6708
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I get what you mean about the anxiety of that first infusion!
Sounds like you're doing well. No infusion reaction at all is unusual, I think. I'm glad for you.

A response to the Rituxan this soon would be rare. It usually takes at least several weeks to work. I won't say it can't happen, but it's very much more likely the Dex is what drove your platelets up.

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Watch and wait recommendations? 1 week 1 day ago #68779

  • Hal9000
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Gmelnick wrote: ...
I’ve seen some posts about how people the respond to steroids tend to respond to rituximab. I respond to steroids and also seem to be responding to rituximab, just as an anecdotal point.

Gmelnick, I do not respond to steroids at all, but do respond to IVIG - like few others. LOL, so with that clearly ITP is not homogeneous. That is, there is no one ITP type. Further, the anecdotal evidence of you and I (only) is that there is at least two types of ITP. And so goes the science of 'pattern recognition'. I am so glad I took the course on Pattern Recognition.
en.wikipedia.org/wiki/Pattern_recognition

Anyway. It was my own failure to respond to Rituxan that lead me to research member reports on this forum about what does, and what does not, work in ITP. To see what response successes are associated, and which are not associated. This lead me to create my ITP treatments table and assertions like: a good steroid response has an association with a good Rituxan response. It's not a 100% association, for sure. But it's not bad. Maybe 80% or so.

BTW, that 200 count was pretty impressive. Nice.

Cheers to a long remission.

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Watch and wait recommendations? 1 week 1 day ago #68783

  • Gmelnick
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Update for anyone who is interested: I got my second infusion Tuesday this week. Since I tolerated it well the first time, I was able to get this infusion at a much faster rate. I started at 100 mL/hr, then increased by 100 mL/hr for a max rate of 400 mL/hr, still zero infusion reaction. I also premedicated with zyrtec this time instead of IV benadryl. This was a lot better, I wasn't as drowsy.

My platelets prior to starting the infusion were 74, still a good number.

Halfway through, only 2 more infusions to go. My fingers are crossed that I won't have to do another round of dex.

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Watch and wait recommendations? 1 week 3 hours ago #68796

  • GrouchoMarx
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It is very difficult to give or to take advices since everyone and every case is different.
There are several points to take into consideration.
- The wait and see approach might involved more visit to the clinic in order to see ur levels of platelets regularly. Are you ok with it? I hate it. Since I am on Promacta, I do it once every 3 months. On the wait and see mode every week or every 2 weeks was the minimum blood extraction I had. Unfortunately, as it is the case with diabetics, we cant perform a daily test at home to know at anytime our evolution. Btw the test result will be valid for a day, since in 24h our platelets count could have changed exponentially.
- Our illness is poorly understood yet to some extent and the consequences of having a very low platelet level even less. So, the educated mind of the doctor, his or her fears, his more or less conservative approach will affect you a lot. for instance, some doctors will not be happy to see you flying with less than 40K and others wouldn't care. The same applies to Sport, alcohol or even sex.
- When we get sick, the chances are that we go even below our lowest average threshold. Somebody who fluctuates between 30 to 50k, can perfectly end up below 10k few times a year without knowing it.
- It will also depend on ur active life. Somebody who doesn't do any sport and have no activity risk might feel more comfortable with the wait and see approach than a firefighter doing paragliding every weekend.

Unfortunately, there are many variables to consider for a straight answer.

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Watch and wait recommendations? 3 days 3 hours ago #68826

  • Hal9000
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Strong steroid response, strong Rituxan response, no reaction on first infusion...
Hard to ask for better results than that Gmelnick.

LOL, for what it's worth, my prediction is somewhere around 200 on next infusion.

Cheers to 'Vitamin R' !

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