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Watchful Waiting 21 year ITP Senior Looking for Experience with Treatments

  • Kats1929
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  • I was diagnosed with ITP in 2002. Outside of a half dozen IVIG infusions and prednisone, I have lived with low platelet counts for 21 years. I average mid to low teens with occasional single digits.
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1 year 3 months ago #72970 by Kats1929
I was diagnosed with ITP at 49 years old. In my 21 years with ITP, I elected early on for minimal treatments for surgeries and single digit crisis' which included homeopathic treatments, diet, prednisone and IVIG. With pred and IVIG, I respond well but then wipe out the platelets in short order. My average counts are 12 -14,000. Occasionally I have had high teens and single digits as well.This past year I have experienced three episodes of single digits.  I had a thyroid cancer scare 3 years ago that required it be removed. Since then, it has become impossible to keep a stable number the hematologist feels comfortable with. Currently I have been on a low dose of prednisone for 6 months (This was helping the MS I have as well.) but now it isn't working and I know the damage it causes. It is not a long term treatment. Hemo is suggesting NPlate, Rituxan or splenectomy. Has anyone out here been in my boat where you started these treatments late into the disease? Yesterday my cardio suggested since I have had no bleeding events in the 21 years outside of petechia and fatigue, he wouldn't do anything since the NPlate has blood clots as rare side effect. I am as about as knowledgable about the treatments as a lay person can be to make a decision. I was looking for people who have real world experience with starting treatment late in life. I've pretty much ruled out Rixtuxan (I have had horrible reactions to IVIG and the dr. does not want to use.) and splenectomy (There is evidence it is better done at 40 or younger). I was born with a compromised immune system. So I have struggled my whole life with one thing or another. I do not do well with medicines (always some kind of reaction). I realize everyone reacts different. Thanks in advance for help! 

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  • midwest6708
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  • ~ Janet ~ Diagnosed Sept. 2008
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1 year 3 months ago - 1 year 3 months ago #72971 by midwest6708
It seems our philosophies about treatments are very similar.  When I was first diagnosed at age 58, I realized the risks of treatment were about even with the risks of the disease.  I was very careful to educate myself before accepting any of them.  I was also adamantly opposed to parting with my spleen.  The success rate in my age group is less than 40%.    

I went mostly untreated for the first three years or so.  Then, single-digit counts started to occur more frequently, so I began taking a daily dose of prednisone, never going above 20 mgs.  After two more years, that regimen lost its dependability, but I refused to raise the dose.  My doctor then encouraged me to try Rituxan.  I was initially very reluctant, being concerned from reading personal accounts here on the board of patients who'd acquired serum sickness from the treatment.  After several months, I agreed to it.  While the office nurse set about getting insurance approval for it, a kind of primal fear kicked up in my gut.  I felt that I would be harmed and ultimately backed out.  By that time, NPlate had been in use for more than 10 years and had FDA approval for ITP, which are my personal benchmarks for trying any new kind of med.  In October of 2014, I started NPlate but couldn't achieve a stable count of 50 that is the goal of TPO treatment. 

When I finally had enough of wildly fluctuating counts with NPlate in 2018, I decided to set aside my fear, trust my doctor, and go ahead with Rituxan.  Sure enough, I was felled by serum sickness and spent six days in the hospital, two of them in ICU.  I was left with permanent vestibular nerve damage that causes me disability every single day and will never improve.  No professional will admit that Rituxan caused this problem for me, but I'm a good researcher.  I found journal articles that describe the same kind of vestibular damage caused by a monoclonal AB drug for an AI disease.

So now I'm about to turn 73 and am still taking NPlate.  I've thought many times about switching to Promacta to see if it would produce more stable counts.  But it would cost me at least $80 a month, while NPlate costs me nothing under my Medicare advantage plan.  Besides, I found a small study that concluded there's little chance that a switch from one to the other would achieve a better result.  I may someday decide to investigate the newest drugs available now that work by different mechanisms than the TPOs.  But for now, I'm satisfied with counts that run between 30 and 100.  My lowest count in the last four years was 20, and I haven't had a single-digit count in that time. 

Yes, I know I have a higher risk of a clot when my count is above 50, but I choose to accept it.  At 73, I'd have a similar risk of clots WITHOUT taking NPlate, at least as I see it.   Sorry this turned out so long, but it's my story.  Hope it helps, at least a little. 



 

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  • Kats1929
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  • I was diagnosed with ITP in 2002. Outside of a half dozen IVIG infusions and prednisone, I have lived with low platelet counts for 21 years. I average mid to low teens with occasional single digits.
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1 year 3 months ago #72973 by Kats1929
Thank you Midwest6708 for sharing your experiences. That was exactly what I was hoping for. ITP can be such a lonely disease when there is no one to talk to about questions and concerns. We do share the same philosophy and my current doctor does not appreciate the sesimic shift I am undergoing to even seriously consider treatments. I have looked at the NPlate and Promacta wondering what the difference was in terms of response with people using this forum. I have studied all the info on this site and anything I can get my hands on. If I go this route I would like to know I am choosing the better one for me which I know is hard to predict. I also have noted that there is not a lot of research out there concerning older ITP patient's response rates. I've got to think that as we get older it is different in some ways. I have a high tolerance for low platelet counts but do get anxious at less than 9,000. Since I was talked into three IVIG treatments last year (two being back to back), it took me all summer to become stable and then a spider bite put me in single digits. I was in in North Carolina and that hematologist put me on Prednisone to get me out of single digits and I have taken less than 10 mg since August. I maintained August to December high teens although it has done a number on my gut. Both hematologists have had me come in weekly for over a year. I recognize their concern, but having that number hold me hostage weekly is for the birds! I wouldn't even be considering treatment now if it weren't for the fact I have several other medical procedures I need to be done unrelated (or are they?) to ITP but can't get the platelets high enough to do them.

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  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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1 year 3 months ago - 1 year 3 months ago #72979 by mrsb04
Kats 1929
I was diagnosed at 57. IVIg does nothing for me. High  dose pred works but side effects too much to bear, let alone long term implications.

Azathioprine (Imuran) and MMF (Cellcept) didn't' work.  

Romiplostim (N Plate) counts swung all over the place and lost response to it twice.

Eltrombopag (Promacta) more successful with  more stable counts but only on maximum dose with annoying side effects. Plus the dietary restrictions a pain for someone who needs calcium supplements due to steroid induced osteoporosis.

In 2015 I took part in the Fostamatinib (Tavlesse) trial. I had no side effects,  my count was safely stable in 30's to 40's however  I  got kicked off the trial after 6 months as not reaching target count of 50.

I've just been on  the PRN1008 trial, again target count 50.  After 5 months of weekly blood tests with three counts in single figures and only four above 15 (21 being the highest)  I was failing it  spectacularly and elected to terminate my participation. Had to take anti nausea meds throughout. Could not see the point in continuing talking a med to counteract side effects of an ineffective med.

Fostamatinib (Tavlesse) has just been licensed over here in England so I have elected to go back on it. If it keeps my count above 20 I will consider that a success. Would like to be above 25 as will then be completely asymptomatic. 

I am never  parting with my spleen and as yet have not considered mab therapy of any kind. 

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  • Kats1929
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  • I was diagnosed with ITP in 2002. Outside of a half dozen IVIG infusions and prednisone, I have lived with low platelet counts for 21 years. I average mid to low teens with occasional single digits.
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1 year 3 months ago #72980 by Kats1929
Thank you mrsb04 for sharing your experiences. It helps to see what others have tried in treatments. I am just so skeptical about introducing a treatment to my system. I always end up with another problem.  I have been truly blessed using homeopathic methods the past 20+ years with no bleeding events and the occasional single digits. The single digits have increased the past 3 years, but I still so would like to hold off western treatment until it is clear I can't hold my 'in the past' stable low teen counts. I always have trouble getting off prednisone and always crash. I have taken it for 6 months now at less than 10mg. I know it is going to be a problem coming off it. I LOVE your kitty! 

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1 year 3 months ago #72981 by RR01
Hi Kats1929,
I have just started on homeopathy as well for my ITP. If you are Ok with can you please share the names of the homeopathy meds that you took for ITP? Thank you.

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  • Kats1929
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  • I was diagnosed with ITP in 2002. Outside of a half dozen IVIG infusions and prednisone, I have lived with low platelet counts for 21 years. I average mid to low teens with occasional single digits.
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1 year 3 months ago #72983 by Kats1929
Hi mrsb04 - Sorry I just now read your email. Homeopathically I have tried different things through the years. Until 5 months ago, I drank a Chinese tea formula from a Chinese doctor. I got off of it because I had been on it 20 years and felt it wasn't having the same effect at this stage of my ITP. I brewed a packet each week and drank two cups a day. I have toyed with my diet through the years avoiding foods entirely that are listed as platelet reducers and increase food intake of foods that increase platelets and support the blood. I follow the Mediterranean diet and the Eat Right for Your Blood Type diet. I also am trying to avoid wheat as it does not agree with my digestive system. I do not have Celiac disease. Does it have an effect? It helps with my platelet counts to a degree, but mostly I feel better. I have thought about trying the Macrobiotic diet but for me it would be difficult to follow on a day to day basis. I take a high potency probiotic 2x a day (Renew Life 50 Billion Critical Care or Extra Digestive Care.) I take a daily Chlorophyll supplement (Total Greens by Sunny Greens). I try to eat foods that are close to the ground as possible avoiding processed foods entirely and organic. Preservatives are a trigger for me. I walk 4-5 miles a day. I have to be careful to go over this as walking too much can have a negative impact on my platelet count but I so need it for my mind and physical well being. (I have MS as well.) I practice mindfulness and make time each day to pray and quiet my mind. I wish I had been able to let go of stressful life events through the years as they were out of my control and had a negative impact on my platelet count. I do feel blessed that God has seen me through to this stage of my ITP and I am thankful. I have tried Healing Touch Therapy when I was going through my mom's illness and it helped me cope. I tried Reiki Energy Therapy at an ITP conference in Orlando years ago and it was a positive experience. I never found a therapist locally. I hope you find things that work for you. I am always tinkering with homeopathic avenues. My first hematologist use to laugh and ask 'Well what are you doing now?' He actually felt like these therapies complimented and supported the body. My current hemo doctor says 'It's an autoimmune disease, nothing homeopathically affects your counts.' I know better. 

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  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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1 year 3 months ago #72987 by mrsb04
Kats 1929
I haven't  sent you any emails 

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1 year 3 weeks ago #73141 by JulieM
Hi Kats - you say you don't have any bleeding events, have they found your few platelets to work well or have any special characteristics? I understand it's scary to have low numbers, but if you've gone this long without much treatment, what is the ultimate goal of starting treatment when you have no symptoms? Have they ever considered Puesdothrombocitopenia or anything else in your case with no major bleeding events?

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