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TOPIC: Need Advice Please :(

Need Advice Please :( 1 month 3 weeks ago #66188

  • Carcamoc10
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@ MelA: I’ve heard we are also at risk of a stroke, but why is this? Is it the medications or treatments we’re on??

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Need Advice Please :( 1 month 3 weeks ago #66203

  • b2h
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That sounds good. I hope your appt. goes well. Let us know.

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Need Advice Please :( 1 month 3 weeks ago #66204

  • Carcamoc10
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b2h: I will keep y’all posted, thank you! :)

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Need Advice Please :( 1 month 3 weeks ago #66205

  • MelA
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@ Carcamoc I'm not sure - I just know that some think since platelets low there is no danger, but there is.
Maybe you could ask at your appointment. Good luck!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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Need Advice Please :( 1 month 3 weeks ago #66206

  • GrouchoMarx
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Good luck and keep it posted:)
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Need Advice Please :( 1 month 3 weeks ago #66207

  • GrouchoMarx
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It is an issue not investigated. With no real data. Try to find studies on activities of people with ITP and Strokes (brain hemorrhagic, due to bleeding):

Some doctors are less concerned than others and many basically try to forbid something to be on the safe side

To know that someone with ITP had a stroke doesn't mean anything if we don't know:
1 - Was it due to an accident? obviously if someone with ITP hit his head badly with a count below 10000 he has more chances of a Stroke. But we don't go hitting our head. Right?

2 - Does the ITP person who had a stroke was already predisposed by another illness (eg malformation) or by many risks factors (eg
High blood pressure, tobacco smoking, obesity, high blood cholesterol, diabetes mellitus, previous TIA, atrial fibrillation ?

Low platelets doesnt destroy your veins or artery it might just not stop the bleeding. For a stroke something else must have done it.

Conclusion (Opinion, I am not a doctor): If you have naturally chances for a stroke indeed watch what you are doing if over 20000/30000 with a good general health your risk (except for accident) is negligible. But once again, why nobody investigate it?

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Need Advice Please :( 1 month 3 weeks ago #66221

  • Hal9000
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Carcamoc10, FYI...
Stumbled across this. Thought it might be of interest to you.
"Eltrombopag Plus Pulsed Dexamethasone As First Line Therapy for Subjects with Immune Thrombocytopenic Purpura (ITP)"
www.bloodjournal.org/content/132/Suppl_1/733?sso-checked=true
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Need Advice Please :( 1 month 3 weeks ago #66224

  • Carcamoc10
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@ Hal: I have to wonder why I was never offered a Dex Pulse. It’s something I’ll bring up at my next appointment for sure though! Thank you!

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Need Advice Please :( 1 month 3 weeks ago #66231

  • mrsb04
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@Carcamoc10
Just be aware Dex is a much stronger steroid than Pred with a lot longer half life so any side effects a likely to be more horrid than Pred.
I fear it would be too much for me to try as I suffer badly with high dose Pred.
However that is no reason to say that you would suffer too.

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Need Advice Please :( 1 month 3 weeks ago #66232

  • GrouchoMarx
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Our additional problem with ITP is that other people's positive and negative experiences with any particular treatment doesn't mean it will be our experience.
As it was for me, Pred was terrible. Unknowledged Doctors put me on 100 mg for a sustained period of time for absolutely nothing. I count those months as the worst period of my life. Until my current doctor put the count on 20mg. I started to have my life back. But even 20mg was a nuisance at medium term. Then we switched to one DeX Pulse.
I was told it is much stronger, I even hesitated but to my surprise except for the 4th and 5th day it was very well taken. You take only for 4 days but I guess on the 4th and 5th you summed up a lots of drug in your body to be bothered.

However the rollercoaster descends from there and you might not take anything for weeks or months if you are lucky enough. Remember it doesnt need tapping, while on 100mg pred you still have many weeks ahead of tappering.
So, I suggest you try and see....but it is your decision:)

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Need Advice Please :( 1 month 3 weeks ago #66233

  • mrsb04
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It is absolutely Carcamoc10's decision.
One of the things I love about this site is people's experiences and how they handled them.
Anecdotal evidence although not substantiated by a research base is, in my opinion, just as valuable as a learning tool.
Frequently it covers the things the medics didn't tell you or didn't know in the first place.
It allows one greater scope for making a more informed decision.
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Need Advice Please :( 1 month 3 weeks ago #66234

  • Carcamoc10
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@ mrsb04: Definitely something to keep in mind! I won’t mind asking my hemo about it and getting his opinion before making a decision.

@ grouchomarx: If I keep struggling as I’ve been, I think it would be smart to give it a try. For now, I’m still on 75mg Promacta!

On the bright side, I had labs done yesterday and am up from 15 to 44 without a rescue treatment. (They called me yesterday about delivering some IVIG for this purpose but have just now gotten the ball rolling on it, so it hasn’t been sent out yet) I don’t know to what to attribute this increase, but I began taking probiotics this last week as well as blackstrap molasses for my iron deficiency! Hopefully my platelets continue trending upwards or at the very least stay put :)

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Need Advice Please :( 1 month 3 weeks ago #66248

  • johnmerrick
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i didn't read all the comments. having said that if your number is 10K or under you can't joke with that. you could die. don't ignore it because you don't have any symptoms... by the time you have symptoms it's to late and you're dead.
get a better hemo. i understand the money thing ...at the end of the day it's your decision. for me not a chance in hell am i going to be walking around with under 10K and not get treatment.
just because you have people walking around with 3K or 5K for years without any problems means nothing. tons of people smoke and don't get cancer but smoking still causes cancer. if you google i'm sure you could find somebody who died with 5k and did nothing about it cause they thought they'd be fine.

just my 2 cents. decision is yours at the end of the day.

good luck to you.

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Need Advice Please :( 1 month 2 weeks ago #66251

  • Carcamoc10
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@ johnmerrick: Hi, thank you, I actually agree with you there! I think my issue is with being sent to the ER every time. I was told by my hemo after my diagnosis that now that we know I have ITP, should I ever need rescue treatment it could be done in office. Platelet transfusions could be done outpatient...etc. As for the under 10K deal, yes it makes me extremely nervous and I am not without bothersome symptoms at that level...but it happens almost every single time that I have labs under 10K and I’ll go into the hospital the next day(when they call me informing me I am low) and I’ll be up to 15K or something similar! They still treat me, but I feel like I could very well do that at my hemo’s office with less inconvenience and less money...

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Need Advice Please :( 1 month 2 weeks ago #66252

  • GrouchoMarx
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I am sorry to hear Carcamoc that you are struggling to keep it over 10K. Hope you will manage more tolerable levels soon.
I guess you are still using first line medication. What about second line? promacta Rituximab etc....

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Need Advice Please :( 1 month 2 weeks ago #66254

  • GrouchoMarx
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www.ncbi.nlm.nih.gov/pmc/articles/PMC3410635/

An article that explains very well the matter.

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Need Advice Please :( 1 month 2 weeks ago #66256

  • Carcamoc10
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@ grouchomarx: I started Promacta in January because I had steroid refractory ITP and I crashed after I finished my prednisone taper! And I completed Rituxan in March, so I guess we’re still waiting to see if it worked..? Hemo decided to do the Rituxan because the Promacta was not stabilizing me, levels were all over the place. I was actually supposed to stop taking the Promacta once I began the Rituxan rounds, but they feared I would crash again if they did, and I did bottom out when they tried to start tapering me off the Promacta! Hence why I’m still on the 75mg dose! So I’ve tried a few things, but I still have hope there’s something out there that will keep me in the safe zone for the most part!

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Need Advice Please :( 1 month 2 weeks ago #66260

  • GrouchoMarx
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I am sorry to hear you are still looking for the right treatment. Hope you find one soon. Hope also you have a good health insurance. :)
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Need Advice Please :( 1 month 2 weeks ago #66261

  • johnmerrick
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here is what you can do. email a hemo that specializes in ITP tell him exactly what you have tried so far and the results. make sure everything is very clear and not confusing. maybe have someone else read it and see if they understand it. then email him and ask him his opinion as to what to try.
maybe email a couple of these guys. then when they respond take that to your hemo and say lets try this.
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Need Advice Please :( 1 month 2 weeks ago #66305

  • Carcamoc10
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Just wanted to give an update...I am up to 74K from 44K last week!!! Still doing 75mg Promacta, but I’ve kept taking probiotics and some blackstrap molasses for my iron deficiency...as is often the case, I don’t know if I can attribute the increase to that, but I will continue taking them just to be safe! Hopefully I get good news at my appointment with my hemo next week, but I’m so glad I’m trending upwards without IVIG for a change :)

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Need Advice Please :( 1 month 2 weeks ago #66306

  • GrouchoMarx
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Excellent news. You see something works. That's the only thing I ask the 21st century medicine :)
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Need Advice Please :( 1 month 2 weeks ago #66309

  • b2h
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That's great. Happy to hear you can stay away from the IVIg. :)
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Need Advice Please :( 1 month 1 week ago #66317

  • JJ
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Groucho, you might be interested to know that a UK hospital is doing a study looking for pinpoint brain bleeds in ITP patients. They are doing MRIs on patients who have had counts below 30 at any time and looking to see if there is evidence of any minor bleeds.

You also might like to know that it is not necessary to taper prednisone/prednisolone if it is not taken for longer that 2 weeks. I have done chemo for lymphoma with 100mg pred for 5 days every 3 weeks with no taper. It's just not necessary.

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Need Advice Please :( 1 month 1 week ago #66318

  • mrsb04
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JJ
At which hospital is this UK research taking place ?

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Need Advice Please :( 1 month 1 week ago #66319

  • GrouchoMarx
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That's an excellent news. We need to have some scientific evidence that there is a risk for the brain in healthy patients.

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Need Advice Please :( 1 month 1 week ago #66325

  • Hal9000
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Carcamoc10 wrote: ...I am up to 74K from 44K last week!!! Still doing 75mg Promacta, but I’ve kept taking probiotics and some blackstrap molasses for my iron deficiency...

Nice count.
Question. Can you identify when the iron deficiency started? For example, did it coincide with when counts dropped from 300 while on 25 mg Promacta? Or, did you mention being tired to the doctor and a follow up test showed it as already low?

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Need Advice Please :( 1 month 1 week ago #66327

  • Carcamoc10
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Hal: Unfortunately neither I nor the doctor can pinpoint when I started being iron deficient as I spent the better part of last year (undiagnosed) with ITP symptoms (including very heavy and long menstrual cycles)...I had a bone marrow biopsy done the first week of January and my hemo told me my storage iron was at 7 when he discussed the results of it! He did say he was not surprised since I had complained about the heavy cycles when I’m low on platelets...actually said it’s very common for women to be iron deficient in general because of our cycles!

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Need Advice Please :( 1 month 5 days ago #66352

  • Carcamoc10
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Just wanted to give an update to anyone who’s interested...I’m in the hospital with a count of 2K...only came in because I had a scary fast onset of symptoms, which is not typical for me. Had a blemish that wouldn’t stop bleeding and also some when I brushed my teeth...& it just went downhill from there! Luckily, I’m in the middle of IVIG right now and I’m hoping it’ll keep working like it has been for me so far! I’m hoping to get out of here today!

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Need Advice Please :( 1 month 5 days ago #66353

  • GrouchoMarx
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I am sorry to hear. Hope you will recover soon. As you normally do with a transfusion. I wonder how you went that low being on promacta with a high of 75000?

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Need Advice Please :( 1 month 5 days ago #66354

  • JJ
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mrsb04 wrote: JJ
At which hospital is this UK research taking place ?


Hammersmith under Dr Nichola Cooper. She does a lot of research.
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