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Feeling Very Discouraged

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11 years 9 months ago #42940 by renee106
Replied by renee106 on topic Feeling Very Discouraged
I had my count done today and my levels have dropped to 27. My hemo is leaving me on the 10 Prednisone for now and will check it again next week. So far the only symptom I have is blood blisters in my mouth. He seems to discount those which I find confusing. I think if I don't show any higher numbers he is going to want to try me on another drug in two weeks. He has mentioned Promacta several times but not NPlate. I have no idea which I would prefer. The side effects seem about the same. But I'm still hoping the Rituxin will magically kick in. It could happen.

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11 years 9 months ago #42942 by Joerg
Replied by Joerg on topic Feeling Very Discouraged
Hi Renee,

I'm on Nplate for 2 years now and I have 0 sideeffects. Or rather 0 that I can see or feel.
If you have a choice I'd go for Nplate since I've heard that Promacta has more sideeffects.
The downside to Nplate is that you need to inject it. I got a weekly injection from the hemo for ~4 weeks and ever since I'm doing the injection myself. Its a bit cumbersome to do, but manageable.

But fingers crossed your counts go up and you don't need either!

Cheers
Joerg
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11 years 8 months ago #42966 by renee106
Replied by renee106 on topic Feeling Very Discouraged
Hi Joerg,

I looked up Nplate today and am surprised in the differences in side effects from Promacta. They are less and appear less severe. My hemo has never mentioned that drug to me but I am going to discuss it with him. I don't mind injections and to me the restrictions on when to take Promacta seem like that could be a pain. Thank you so much for the suggestion.

I would love to not have to take anything else. I failed miserably on Prednisone and so far Rituxin still hasn't done the trick. But I too have my fingers crossed that next weeks count is going to be good.

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11 years 8 months ago #42970 by Ann
Replied by Ann on topic Feeling Very Discouraged
I too used Nplate with no side effects. I was able to come off it almost a year ago and now maintain counts in the 80s with no treatment. Before Nplate I had counts below 5 and all the other treatments I tried either had intolerable side effects or simply did not work. I too self injected and only went for a count and prescription every 8 weeks. If you are not allowed to self inject, it may influence your decision.

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  • weirdjack
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11 years 8 months ago #42972 by weirdjack
Replied by weirdjack on topic Feeling Very Discouraged
I used Promacta for 3 years. The restrictions on when to take aren't as bad as they might seem.
Far less side effects than the various immune-suppressants I've used. Everyone is different though.
I much prefer taking a pill (Promacta) to getting injections (Nplate). Everyone is different though.
Once I got stable on Promacta, I only needed a count and hematologist visit twice a year. Everyone is different though.
Wish I could afford to use still use Promacta, it was the best treatment I've had in the past 12 years.

.

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11 years 8 months ago #43025 by Vdeutsch85
Replied by Vdeutsch85 on topic Feeling Very Discouraged
I will tell you from my experience that I've been on both Nplate and Promacta and on Nplate I had this weird bone pain the first 2-3 days after the shot. It was bearable, but have had no side effects on Promacta. I go for my monthly liver checks and have been fine. I also am highly active and like the fact that once stable I only have to go for monthly CBC's rather than weekly with Nplate. It's completely a personal choice. You have to find what's best for you. The good thing is there are two options.

I do know that Amgen ( Nplate) was much easier to get drug assistance from, but I am able to get drug assistance for Promacta as well (GSK) since my co-pay with insurance is $250, and I am a teacher and living on a teacher salary. I pay $75 a month so affordable.
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11 years 8 months ago #43029 by renee106
Replied by renee106 on topic Feeling Very Discouraged
Thanks for the information on your personal experiences Vdeutsch85, wierdjack and Ann. My hemo thought Rituxin would work for me but, unfortunately, my counts just keep dropping. It is so difficult to decide what to try next. Since different things work for different people it's a guessing game that I don't really want to continue to play. I hate putting more drugs in my system and hope this one will work this time. They all seem so toxic to me with the potential for numerous side effects. My hemo seems to be pushing for Promacta but then he could change his mind again. Unless I really tank in numbers I don't have to decide until the 20th. I have read the info on all of them but that doesn't tell me which one is the one that will keep my counts up. How do people make that decision? It seems so overwhelming and frustrating!

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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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11 years 8 months ago - 11 years 8 months ago #43037 by Sandi
Replied by Sandi on topic Feeling Very Discouraged
You decide based on lifestyle, side effects, time constraints, insurance, etc. All you can do is try the one that seems the best and go from there.

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11 years 8 months ago #43112 by renee106
Replied by renee106 on topic Feeling Very Discouraged
My count today was 33, up from 27 last week. I'll take any little increase I can get! My trend seems to be going from the 30s to the 20s weekly. I am still getting blood sores in my mouth daily and recently have been getting small bruises on my arms and legs - a new development. But I haven't had any nose bleeds in several weeks which is wonderful. I am still being kept on 10mg. prednisone.

I think I have decided I want to try Nplate. Since my hemo has never mentioned that drug to me it may not be his first choice. I didn't see my him today, only had the blood draw. Next week we have an appointment to decided what's next. I hope he is open to a discussion on this.

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11 years 8 months ago #43122 by Rob16
Replied by Rob16 on topic Feeling Very Discouraged
Renee, If you are getting blood blisters with platelets in the 30s, you might be consuming something that is making your remaining platelets less sticky. You might want to check the list of "Food and Supplements that Interfere with Platelet Function".
pdsa.org/about-itp/warnings.html?highlight=WyJhc3BpcmluIl0=
And just in case you did not know: stay away from aspirin products. Also ibuprofen and other NSAIDs.
Here is an article that has some good tables of drugs to avoid:
asheducationbook.hematologylibrary.org/content/2011/1/391.full
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11 years 8 months ago #43135 by renee106
Replied by renee106 on topic Feeling Very Discouraged
Hi Rob,

I have checked that list and it contains most things I do not consume. I am a big coffee drinker (black with no sugar) and have often wondered about that. In the past I was addicted to Diet Pepsi but, since my diagnosis, I have pretty much stopped except occasionally and once in a while I'll have a candy bar. I'm a vegetarian and have been for over 30 years which is why I believe I have never had any major health issues. What exactly does "sticky platelets means?"

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11 years 8 months ago #43142 by Rob16
Replied by Rob16 on topic Feeling Very Discouraged
Hi Renee,

Sticky platelets refers to the fact that platelets stick together in order to begin forming a clot. Platelets sticking together is the first step in forming a clot to stop bleeding. Aspirin, for example, does not actually "thin" the blood. It interferes with the ability of platelets to stick together, so that the platelets are less effective at clotting. Other so-called blood thinners, like warfarin, interfere with later stages of clot formation.

I am glad you checked the list, but sorry you did not find an answer to why you are still having blood sores with labs over 30k.

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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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11 years 8 months ago #43143 by Sandi
Replied by Sandi on topic Feeling Very Discouraged
Do you take any herbal supplements? Those can sometimes be overlooked as harmless.

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  • midwest6708
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  • ~ Janet ~ Diagnosed Sept. 2008
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11 years 8 months ago - 11 years 8 months ago #43147 by midwest6708
Replied by midwest6708 on topic Feeling Very Discouraged

Sandi wrote: Do you take any herbal supplements? Those can sometimes be overlooked as harmless.

Good point.
I have just begun to rethink fish oil. My hema says it's fine, but it is on the PDSA list of things that can interfere with platelet function (not necessarily count).
I'm down to 14K now. Might be best to try to optimize their functionality since there are so few of them.

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11 years 8 months ago #43159 by renee106
Replied by renee106 on topic Feeling Very Discouraged
Rob - Thanks for the explanation for sticky platelets. I think the blood sores are because my numbers are continually going from the 20s to the 30s and back again. I may have a day or two without them and then they are back. At least they aren't painful.

Sandi - I stopped taking all of my Chinese herbs after my diagnosis and now only take regular vitamins. My hemo said all of them are fine so I'm taking him at his word.

And so the great mystery of why I have this and why it won't go away remains!!!!!

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11 years 8 months ago #43274 by renee106
Replied by renee106 on topic Feeling Very Discouraged
I saw my hemo today and my counts have dropped to 26. It's strange because I have no symptoms. My bruises have magically begun to fade and I have no blood blisters in my mouth. This is the first time I have dropped this low without that happening. My hemo wants to start a new round of Rituxin beginning next week. It has only been about 4 weeks since my last treatment but he wants to do this now instead of waiting any longer or starting me on either Promacta or Nplate. I had an easy time with Rituxin last time so am assuming this time will not be any different for me. I left his office just feeling so frustrated. I really thought my counts were up - such a disappointment.

Have any of you ever had a second round of Rituxin so soon after the first one?

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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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11 years 8 months ago #43275 by Sandi
Replied by Sandi on topic Feeling Very Discouraged
Renee:

I think I'd get a second opinion. If Rituxan didn't work the first time, it's not going to work this time. Since ITP can be long-term, it's a good idea to reduce toxicity as much as possible and not have unnecessary treatments.

I never see people using Rituxan like that. It either works after a few weeks (in which case you don't need more) or it doesn't work at all (in which case more is pointless). Having more doesn't make it work better.

Not having symptoms is good.

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  • midwest6708
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  • ~ Janet ~ Diagnosed Sept. 2008
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11 years 8 months ago #43282 by midwest6708
Replied by midwest6708 on topic Feeling Very Discouraged
I've been reading dozens of studies and articles about Rituxan for ITP lately. I have never seen one that experimented with back to back rounds of it. That's all I can say about that specifically.

But, I'll add...

Since you seem to have been a very healthy person all your life, you may not have had a great deal of experience with multiple doctors. I've been healthy, too, but have had children, had many ill relatives and friends. So a lot of MDs have directly and indirectly crossed my path. Not all of them have been worthy of blind trust. There have been mistakes - some minor, some major, one of them fatal.

It pays to arrive at your own treatment decision based on as much factual knowledge as you can absorb from all sources. You should be questioning this advice you're being given.

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11 years 8 months ago #43295 by eklein
Replied by eklein on topic Feeling Very Discouraged
Janet,
That is so in the bullseye! "Not all of them have been worth of blind trust." I love it. We have to be our own advocates.
Erica
And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K

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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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11 years 8 months ago #43300 by Sandi
Replied by Sandi on topic Feeling Very Discouraged
Agree with both of you 100%! Drugs like Rituxan and other immunosuppressants raise the risk of cancer. It's not to be taken lightly, especially if it does not work.

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11 years 8 months ago #43301 by Ruth
Replied by Ruth on topic Feeling Very Discouraged
I am in my third reoccurrence of ITP. First time prednisone worked, second time splenectomy and now 39 years later I am in my third occurrence. This time my hema tried prednisone, IViG and Rituxin. Nothing worked. I was in single digits but very few symptoms fortunately, (last treatment of Rituxin was 7/13) so we waited and watched with no treatments but cbc's and dr. visits or calls. Knew I would be treated if symptoms or counts went below ten again. Last cbc was 50! I am so glad she did not want to treat me but did the watch and wait. 50 is perfect. It jumped from 30 to 50 in one month. It is possible. Don't give up and don't over treat is my mantra. I have traveled all over once I got over my concern with numbers in the teens. Living life to its fullest. I do realize that we are each individual and what has worked for me may not work for others. But perhaps I give some hope.....

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11 years 8 months ago #43390 by renee106
Replied by renee106 on topic Feeling Very Discouraged
Thank you all for the info and encouragement. I went on line to check Rituxin and it said you should wait 6 months for a second treatment. I told my hemo I wasn't willing to take it again so soon and, even though I don't know if he agreed with the 6 month wait, he said okay. My count was 25 during his visit and I think my numbers are dropping - my symptoms are getting worse. He is planning on starting me on Nplate next week. I did call to get a second opinion but the dr. can't see me until October! I would rather wait to try something else but I just keep on dropping in numbers and my hemo is concerned with my symptoms. I know some people on this site do the "wait and see" but until I can get a little higher I'm afraid to that do. I have read people's experiences on Nplate and they seem positive for the most part so I am going to give it a try. Maybe this one will work for me (fingers crossed).

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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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11 years 8 months ago #43394 by Sandi
Replied by Sandi on topic Feeling Very Discouraged
Renee:

Your plan is just fine. At 25k, most of us would consider a treatment plan at that point. Some would wait, but sometimes it's just inevitable. N-Plate is a good option.
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11 years 8 months ago #43407 by Vdeutsch85
Replied by Vdeutsch85 on topic Feeling Very Discouraged
I think you should start Nplate while you are waiting for the 2nd opinion. I'm all about 2nd opnions
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11 years 8 months ago #43409 by renee106
Replied by renee106 on topic Feeling Very Discouraged
I never thought about getting a second opinion. I guess because I have never had a disease before all of this is totally new territory for me, even though I'm up there in years. For many years I only saw my primary dr. for my yearly tests and treated any thing I got, like the flu, with Chinese herbs. I have such a negative opinion of Western drugs that treatment for me is difficult, so I don't always think clearly. I'm still relatively new with all of this but reading on this board has really helped me tremendously. You guys are great!!!!!

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