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05 Feb 2023 18:45
  • RR01
  • 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.
05 Feb 2023 13:50
  • Kats1929
  • 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! 
04 Feb 2023 03:36
  • mrsb04
  • 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. 
04 Feb 2023 02:41
  • mrsb04
  • mrsb04
I wear an SOS talisman round my neck and have a steroid card in my purse.
03 Feb 2023 22:27
  • Laurenliw7
  • Laurenliw7
Thanks, CindyL!
03 Feb 2023 10:16
  • CindyL
  • CindyL
Dopey suited me back then and in some ways still does!  :)

Thanks for the smiley face!
Category: Social Chat
03 Feb 2023 10:06
  • CindyL
  • CindyL
I have 2, one is just a cheap bracelet that says ITP.  My other one is official, and has ITP,  on prednisone and a couple of other things that I can't remember.  I don't wear either one of them any more, but probably should.  I'm in remission but know it could come back at any time.
03 Feb 2023 00:04
  • MelA
  • MelA
That does explain the length of the site being down - thanks mrsb!

I still have to smile over "Dopey"!

For the wink smiley I just typed ; and then right next to it ) ;)
For a smile smiley type : then ) right next to it  :)
For a frown : then ( right next to it :(
Category: Social Chat
02 Feb 2023 21:06
  • Kats1929
  • 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.
02 Feb 2023 19:39
  • Laurenliw7
  • Laurenliw7
Does anyone wear or carry a medical alert ID (bracelet, necklace, watch band, wallet card, etc) with them?

If you do, what do you have written on it? I’m thinking “ITP - bleeding disorder, no NSAIDS or aspirin”. 

Thank you!
02 Feb 2023 15:59
  • midwest6708
  • 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. 



 
02 Feb 2023 12:36
  • Kats1929
  • 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! 
02 Feb 2023 10:58
  • CindyL
  • CindyL
Yup, Dopey!  My favorite dwarf.  Where did you get the smiley face?
That explains a lot, mrsb!  Thanks for the explanation!  Good to know!
Category: Social Chat
02 Feb 2023 10:46
  • CindyL
  • CindyL
02 Feb 2023 02:00
  • mrsb04
  • mrsb04
I emailed Jeff wondering if it was a UK access thing as had that before.
He replied telling me the site had been compromised and had to be fixed.
Category: Social Chat
02 Feb 2023 00:05
  • MelA
  • MelA
Dopey huh?  Oh my!! ;)

When we had a 20 gallon fish tank many many years ago our son wanted to name each of the fish - now that was something!

We just had an arctic front and it lasted way too long!  I'm not fond of temperatures below 0 !!

This site just pissed me off - was down for 3-4 days.
Category: Social Chat
01 Feb 2023 16:27
  • mrsb04
  • mrsb04
CindyL
Yes count was 12. Sorry I got distracted by the dog having a hissy fit about a pigeon being in his garden.
I have edited original post as also failed to state  I have actually  started Fostamatinib!!!! 
I agree with the confusion. The problem is caused by brand names chosen by the manufacturers. All drugs have a generic name which is generally the same world wide, e.g. Promacta in USA, Revolade in UK generic name for both is Eltrombopag. 
 
01 Feb 2023 10:16
  • CindyL
  • CindyL
Was your count in the double digits, mrsb?
I get confused by all the different names for the treatments.  I wish all the countries would agree on one name!
I do hope you get off the pred permanently!
01 Feb 2023 10:05
  • CindyL
  • CindyL
I can't speak about the other Provinces, but here in mine (New Brunswick), it was totally my decision.   At least in my city.  It was suggested, but like you said, mrsb, there was no proof it would work, so I said no.
01 Feb 2023 09:07
  • mrsb04
  • mrsb04
My platelet count on 27th January taking daily 10mg Pred and 25mg Eltrombopag was 12. 
Fostamatinib on the NHS has been available in Scotland for 2 years and is now, at last, available in England (and I presume Wales).  
Alongside 5m Pred/day it kept me reasonably  stable during the trial 7 years ago so here's hoping it does so again. Have started on 100mg twice daily. 
Who knows one day I might get off Pred altogether.
01 Feb 2023 06:51
  • mrsb04
  • mrsb04
So glad I don't live in Canada. Being forced to have an operation that may not work at all is an absolutely appalling state of affairs. Cannot understand why doctors don't do something about it . 
28 Jan 2023 10:24
  • CindyL
  • CindyL
I really hope your splenectomy works for you, Paige. I get how you just want your life back.  That's why I agreed (2 years after diagnosis) I brought up splenectomy to my doctor.  I wanted off the Prednisone!  It worked for a month or two, then my counts dropped again.  Back on the pred for the next 5 years until I did Rituxan.  My doc is the top in his field here too.
Please do keep us posted on how you are doing.
28 Jan 2023 10:06
  • CindyL
  • CindyL
I was just cranky that day!  But it does get frustrating.
They really are!  I could watch them all day.  We've had pretty crappy weather the last couple of days so I don't think they've been out and about.Even my sister shook her head at me when I told her I had them named.  I can really only identify 2 of the does.  They're the biggest of the five, and one of them is usually alone.  Right now it's nice out, so I'm hoping they show up.  It's supposed to get cloudy and cold later this afternoon, so no walk today or tomorrow. (Cold and wet tomorrow)
Many years ago when my family had CB radios, my handle was Dopey.  We had one in the house and the other one was on the boat.
Category: Social Chat
28 Jan 2023 07:48
  • PYager1313
  • PYager1313
I have been tested for H Pylori and it was negative.  In Canada, in my province in order to have access to other types of treatment and drugs there's protocols they have to follow.  One of them is the splenectomy before I'd gain access to say Rituximab.  We were offered another drug but at this point in my care we weighed the risks and surgery and life without a spleen and the potential of being over this hurdle in life won that debate.  My hematologist is one of the best in my country here so I am going to trust his recommendations and his belief that my ITP is refractory and will be hopefully controlled after this surgery is complete.  I chose not to want to try any more medications. I just want my life back and to not be in a hospital anymore. My counts haven't moved above 5 in over 2 weeks with all these different meds.  Thank you for the care and concern. 

Paige Y
28 Jan 2023 07:41
  • PYager1313
  • PYager1313
We've tried another high does of dexamethasone and prednisone along with an immunosuppressive.  I trust my physicians in this treatment plan.  They are very certain my ITP was caused by the c 19 Vax.  After being on all these medications for 2 months and In hospital for 3 weeks the surgery and potential of it working is more of a positive outcome for me than sitting and waiting. 
28 Jan 2023 02:33
  • mrsb04
  • mrsb04
PYager
It is absolutely impossible to call your ITP refractory after such  short period of time, you haven't tried sufficient treatments, let alone given the ones you  have tried a chance to work..some take a couple of months to start working.
You haven't even mentioned TPORAs so I'm assuming they haven't been offered. 

If you haven't been tested for Hpylori make sure you do and get the results before you decide to part with your spleen. If you are positive it needs treating and hopefully your ITP will improve and you keep your spleen.

Sad to see some doctors are blindly carrying  on doing what they have always done rather than  practicing  evidence based medicine. 
I sincerely hope that your medics have not promised you a splenectomy will work along with explaining  the downsides of not having a spleen.
Plus you need to know what your management plan will be if splenectomy fails. Is that when TPORAs will be mentioned I wonder?
 
28 Jan 2023 00:39
  • MelA
  • MelA
You mentioned you were going back on prednisone a week ago - did that do anything?
28 Jan 2023 00:34
  • PYager1313
  • PYager1313
Hi, 

So I have decided to go ahead with the splenectomy.  My hematologist and internal medicine team have both been trying as many treatments as we could and I am still not responding to anything. In Canada the next step is surgery before they offer anything experimental or expensive, at least here in Saskatchewan. So we are just awaiting a date next week for my surgery. They believe my ITP is refractory and with the removal I will have normal counts again.  I will just then be living with asplania and having to watch my immune system more carefully. Myself and my family definitely weighed the pros and cons and to be honest I just want to be able to leave the hospital. My life has been on hold, I miss my son and my husband. I will post an update once my surgery is done and what my counts respond like. We really do hope this is the answer and if it's not then there are other treatments we can have access too once my spleen is removed. 
Thank you for all the care and concern and information. 

Paige 
28 Jan 2023 00:27
  • MelA
  • MelA
It is frustrating when you can't get to what you want!
Oh Cindy how fortunate you are to have the does in the your area and you can watch them and name them (she's not nuts Steven, just a little goofy - ha ha ;)   I'd name them too though).      In the open area behind our house we see some deer every now and then, so beautiful and majestic.
Category: Social Chat
28 Jan 2023 00:20
  • MelA
  • MelA
I too am with mrsb.  You were diagnosed in December and had so many treatments thrown at you in a very short time and now a splenectomy is being considered by your team - you need to read and read and read, about all the treatments and about splenectomy, splenectomy is not a cure it is a maybe, and as far as I know there isn't a cure for ITP.   The only reason I was offered [not told to have] a splenectomy is because when I was diagnosed in 1989 there was only splenectomy & prednisone for treatments, I chose prednisone because no doctor could assure me splenectomy was a cure.   With ITP the body is making antibodies that attach to the platelets, once these antibodies are detected in the the places that cleanse the blood those platelets with the antibodies attached are flagged as not normal and are destroyed, that's how it was explained to me - the spleen is not the only blood cleansing location in the body, spleen removed the platelets can still be destroyed elsewhere.  As mrsb said, the spleen is doing its job. 

The above being said - it is your body and you should do what you feel is best for you!!   Keep us posted.
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