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Any questions that you want asked at conference

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12 years 9 months ago #34505 by Vdeutsch85
Any questions that you want asked at conference was created by Vdeutsch85
I will be going to the pdsa conference next weekend. If you have any specific questions that you want answered you can post them and I will try to get them answered!

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  • CindyAnn
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  • Diagnosed Jan 10, 2008. Rituxan treatment in May 2009. Treated with Prednisone off and on until 08/23/17 - 12.5mg Promacta as of 10/22/17
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12 years 9 months ago #34530 by CindyAnn
Replied by CindyAnn on topic Any questions that you want asked at conference
My Hemo has prescribed Amicar (Aminocaproic acid is the generic name) and asked that I keep it on hand and call first if I have a bleed.

Questions - How fast does it work? What are side the effects? Why is in not prescribed for ITP very often?

Promacta & N-Plate (TPO’s) – Testing for the the Lupus Anticoagulant one of the antibodies for Antiphospholipid Syndrome (APS) - Is it or will it be a standard/required test prior to prescribing?

Cindy Ann
The following user(s) said Thank You: crystal lee

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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12 years 9 months ago #34532 by Sandi
Replied by Sandi on topic Any questions that you want asked at conference
Cindy - good job. I knew there was a question that we had but couldn't remember what it was. Amicar!

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  • karenr
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  • Diagnosed in 2000, at 59, after being on moderately high doses of NSAIDs for arthritis. Splenectomy and rituxan both failed (2004). Did well on prednisone till summer 2018--then terrible reactions. Promacta since 11-19.
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12 years 9 months ago #34541 by karenr
Replied by karenr on topic Any questions that you want asked at conference
In addition to Cindy's Amcar questions, could you find out if it is useful for big nosebleeds?

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12 years 9 months ago #34553 by Vdeutsch85
Replied by Vdeutsch85 on topic Any questions that you want asked at conference
I def will ask! Keep posting and I will make a list!

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12 years 9 months ago #34575 by crystal lee
Replied by crystal lee on topic Any questions that you want asked at conference
Hi, I am not sure if you will be around for children's part but, if so..How about TPO'S vs Rituxan in refactory chronic children (under 5)

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  • karenr
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  • Diagnosed in 2000, at 59, after being on moderately high doses of NSAIDs for arthritis. Splenectomy and rituxan both failed (2004). Did well on prednisone till summer 2018--then terrible reactions. Promacta since 11-19.
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12 years 9 months ago #34584 by karenr
Replied by karenr on topic Any questions that you want asked at conference
Could you also ask about what supplements are not advisable for ITP patients? I was told once that Omega 3s are not recommended--is this still true? How about glucosamine and chondritin?

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12 years 9 months ago #34596 by Winnifred
Replied by Winnifred on topic Any questions that you want asked at conference
I have a 2 questions you can ask!

When are they going to make a splenectomy a last resort? (unless there is something physically wrong with it) And pass the word along to all the doctors out there!


How do we as patients get doctors to listen to us? Instead of making us go through the same old conversation! Don't have to add this part! (patient auto responses in order) Yes I know I could die! No I don't want my spleen out! No I do not want Pred. This (_____)is the treatment works best for me? Repeat many times if your in an emergency!


Ps: I'm Canadian so in reality my questions do not count!

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12 years 9 months ago #34599 by Vdeutsch85
Replied by Vdeutsch85 on topic Any questions that you want asked at conference
Julia,

I will def ask the question about how we get doctors to listen to us. I have been frustrated with that myself. I also will ask when spleenectomies will become a last resort.

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12 years 9 months ago #34886 by Vdeutsch85
Replied by Vdeutsch85 on topic Any questions that you want asked at conference
The doctors on the panel often prescribe Amicar as well as other medications like it often. I stops bleeding very quickly wow for patients with primary ITP. They also said very low side effects. One doctor says he keeps patients on it for periods of times when counts are low as a precaution. As far as having anti phospholipid syndrome goes, I would ask what the safety of three drugs are.

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12 years 9 months ago #34887 by Vdeutsch85
Replied by Vdeutsch85 on topic Any questions that you want asked at conference
They really advised seeing an ITP specialist.

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12 years 9 months ago #34888 by Vdeutsch85
Replied by Vdeutsch85 on topic Any questions that you want asked at conference
You are still right on the money....they said no to these drugs as well as fish oil.
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12 years 9 months ago #34889 by Vdeutsch85
Replied by Vdeutsch85 on topic Any questions that you want asked at conference
I didn't go to the children's part by the are 1.5 years old safely taken nplate

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12 years 9 months ago #34890 by Vdeutsch85
Replied by Vdeutsch85 on topic Any questions that you want asked at conference
This one may be confusing but when someone has antiphospholpipid syndrome, people should be checked if they are consistently in the 50-60 platelet range, have had vascular thrombosis or have had pregnancy morbidity.

And to answer about Amicar and this syndrome, I would ask a doctor

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  • CindyAnn
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  • Diagnosed Jan 10, 2008. Rituxan treatment in May 2009. Treated with Prednisone off and on until 08/23/17 - 12.5mg Promacta as of 10/22/17
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12 years 9 months ago #34909 by CindyAnn
Replied by CindyAnn on topic Any questions that you want asked at conference
THANK YOU !!! Vdeutsch85

Some day I will have to attend one - so much information to learn.

Cindy Ann

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12 years 9 months ago #34911 by Vdeutsch85
Replied by Vdeutsch85 on topic Any questions that you want asked at conference
CindyAnn,

I would highly recommend it!

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  • karenr
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  • Diagnosed in 2000, at 59, after being on moderately high doses of NSAIDs for arthritis. Splenectomy and rituxan both failed (2004). Did well on prednisone till summer 2018--then terrible reactions. Promacta since 11-19.
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12 years 9 months ago #34914 by karenr
Replied by karenr on topic Any questions that you want asked at conference
Yes, like Cindy, I thank you for trying to get info from the experts for us.

I did get to go to the conference when it was in San Francisco. Hope it returns to the west again soon!

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12 years 9 months ago #34926 by Vdeutsch85
Replied by Vdeutsch85 on topic Any questions that you want asked at conference
They are taking suggestions for next location, so maybe shoot an email!

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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12 years 9 months ago #34955 by Sandi
Replied by Sandi on topic Any questions that you want asked at conference

Vdeutsch85 wrote: This one may be confusing but when someone has antiphospholpipid syndrome, people should be checked if they are consistently in the 50-60 platelet range, have had vascular thrombosis or have had pregnancy morbidity.


Well, I have had the APL antibodies and have had counts in single digits, have not had a clot, and never had a miscarriage. I was advised to take aspirin as a precaution and would be hesitant to use TPO's. That may be the norm, but apparently not for everyone.

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12 years 9 months ago #34974 by Vdeutsch85
Replied by Vdeutsch85 on topic Any questions that you want asked at conference
Sandi,

I think there are outliers with all of these autoimmune diseases. .....or maybe you are an extraterrestrial....j/k. I'm just wondering, did you have children before you were diagnosed with ITP and lupus? I am going to have to mak some tough decisions in next few years because I would like to have biological children in next few years.

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  • karenr
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  • Diagnosed in 2000, at 59, after being on moderately high doses of NSAIDs for arthritis. Splenectomy and rituxan both failed (2004). Did well on prednisone till summer 2018--then terrible reactions. Promacta since 11-19.
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12 years 9 months ago #34975 by karenr
Replied by karenr on topic Any questions that you want asked at conference
Sandi, why are you reluctant to try TPOs? I'm trying to decide if I should try Promacta. My hematologist is willing, even suggested it (though I've done pretty well with prednisone for 13 years).

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12 years 9 months ago #35034 by DeeDee Marie
Replied by DeeDee Marie on topic Any questions that you want asked at conference
Karen,
If you are doing so well just on prednisone, why rock the boat? I was at the conference last year and was told (for my situation) not to use TPOs. For me, it could lead to bone-marrow problems.

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  • karenr
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  • Diagnosed in 2000, at 59, after being on moderately high doses of NSAIDs for arthritis. Splenectomy and rituxan both failed (2004). Did well on prednisone till summer 2018--then terrible reactions. Promacta since 11-19.
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12 years 9 months ago #35073 by karenr
Replied by karenr on topic Any questions that you want asked at conference
Deedee, I worry about the long-term effects of pred. I've been lucky so far, but I've been on pred most of the past 13 years. Right now 10 mg/day keeps me at about 40K. Because of nosebleeds, my hema has wanted me to stay about 40K.

Might Promacta lead to bone-marrow problems for everyone who takes it?

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12 years 9 months ago #35078 by DeeDee Marie
Replied by DeeDee Marie on topic Any questions that you want asked at conference
Karen, my family had a history of blood disorders, so the doctor I talked to told me not to take Promacta or N-Plate; might lead to MDS. Another, older lady at the conference was heading to bone marrow problems (like MDS). She was taking one of those meds and they talked with her husband for quite a long time on what to do for her. I think that MDS leads to complete bone marrow failure (that's what happened to my brother).

Actually, taking the 10 mg and staying at 40 is really good. If you could just keep walking or doing something to help your bones to stay healthy. At least you don't have to worry about crashing like some of us. I think you could use Amica for the nose bleeds? Did you check into this?

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  • Melinda
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12 years 9 months ago - 12 years 9 months ago #35079 by Melinda
Replied by Melinda on topic Any questions that you want asked at conference
13 years on prednisone - not good. I know someone who has been on prednisone for over 20 years, varying doses and now has osteoporosis and multiple compression fractures in the spine. Unfortunately this person cannot get off prednisone due to a side effect from an autoimmune disease, not ITP. And yes this was a person who stayed active DeeDee Marie - not any more though, the pain of the osteoporosis as seen to that.

Karen I really am surprised your hematologist keeps you on prednisone.

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12 years 9 months ago #35081 by DeeDee Marie
Replied by DeeDee Marie on topic Any questions that you want asked at conference
Melinda, I am just saying for me I will not have an option of taking any of TPOs. The top doctor at the conference even suggested I seek out a doctor for MDS (thinking I may develop it in the future). So, if my platelets drop again like they did the last time, I will have to take the steroids (which was Decadron in my case). Any way you look at it, all these meds are bad; but, Karen has done really well so far.

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  • Melinda
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12 years 9 months ago - 12 years 9 months ago #35083 by Melinda
Replied by Melinda on topic Any questions that you want asked at conference
I didn't word things right I guess. This person I'm speaking of has no choice, must take prednisone daily and has been for over 20 years. I am surprised Karen's hematologist is keeping her on prednisone daily when there are other options as prednisone has horrible side effects. For the person I know it is osteoporosis and many compression fractures of the spine - not a good way to live, in that pain. Started prednisone in 1989 and just recently diagnosed with osteoporosis. As I said, she was active and that didn't help her bones at all.

You are talking about having to take steroids again, you aren't taking it daily right?

So I really said what I said for Karen's benefit since she is on it daily as is the person I know. My hematologist back in 1991 said I had to get off prednisone, she did not want me on it a long time - but since we were overseas and that hematologist would panic I stayed on them another 2 years.

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12 years 9 months ago #35086 by DeeDee Marie
Replied by DeeDee Marie on topic Any questions that you want asked at conference
My husband and I both have osteoporosis but somehow I've avoided the bad affects that come with it. I'm not sure why. My husband has it worse than I do, but he is doing okay so far.

The Decadron pulses I got last time were very strong and I was given quite a few. But, currently, I am not taking any. It is really a hard decision to make on what medication you want to take. But, seeing my brother die from a illness similar to MDS did it for me. I just as soon not take anything if and when I relapse again. When you get to that point, there is not hope unless your body can stand a bone marrow transplant.

Also, is your friend very old? My husband's uncle is having the same problem (but he is 85). He gets the spinal fractures and has had about 4 operations. He says he's in a lot of pain and I don't think he took much prednisone for his prostrate cancer (not sure what they gave him).

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  • Melinda
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12 years 9 months ago #35087 by Melinda
Replied by Melinda on topic Any questions that you want asked at conference
DeeDee Marie you have no choice!

I'm sorry both you and your husband have osteoporosis - I think what the lesson here is that men DO get it! My thought is most doctors think of it as a female disorder when it isn't.

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  • karenr
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  • Diagnosed in 2000, at 59, after being on moderately high doses of NSAIDs for arthritis. Splenectomy and rituxan both failed (2004). Did well on prednisone till summer 2018--then terrible reactions. Promacta since 11-19.
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12 years 9 months ago #35089 by karenr
Replied by karenr on topic Any questions that you want asked at conference
Thanks for your input, DeeDee Marie and Melinda.

My hema has kept me on pred for all these years because I've--so far--had no bad side effects that anyone can discern. (Even my cataracts were not prednisone-caused, the ophthalmologist said.) I have been on Fosamax, however, for some of those years, and I do try to do weight-bearing exercise as well as water exercise. I have osteopoenia, but not yet osteoporosis. I have a bone density test every year or two.

But I worry that my good luck won't last. I'm 72 and have other risk factors for osteoporosis--never had children, have a thin body structure, have osteoporosis in the family.

I'm going to ask about Arnica for nosebleeds. I've been able to avoid them the past two months with vigilant nose care--gel spray, gel at night, etc. AND probably keeping my platelets above 20s.

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