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.

Thanks, mrsb!

Yup, Dopey!  My favorite dwarf.  Where did you get the smiley face?
That explains a lot, mrsb!  Thanks for the explanation!  Good to know!

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! 

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. 



 

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!

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.

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

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.

Dopey suited me back then and in some ways still does! 

Thanks for the smiley face!

Thanks, CindyL!

I wear an SOS talisman round my neck and have a steroid card in my purse.

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. 

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! 

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.

Good you have that around your neck mrsb - some put it in their purse or wallet but in an emergency they aren't going to take time to go looking in the wallet or purse or glove box etc to see if one has a medical alert.

I've been bad - haven't worn my bracelet in a number of years, have it over the gear shift which is probably a place they wouldn't take time to look either.

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. 

I have an emergency card in my purse, says ITP, give tranexamic acid if bleeding too much, and which doctor to call for more info.
Not sure everybody would read and understand it, I've had quite strange experiences with a couple emergency doctors.

Hi!
Does anybody here know what exactly causes diarrhea as a side effect of Revolade? 

I was told categorically not to use  just a purse also wear either a bracelet, or a dog tag/talisman round my neck. 
Our ITP association provides wrist bands but to be honest I'm not sure how much use they are as the information wears off quite quickly. 

Kats 1929
I haven't  sent you any emails 

Hello! I’ve been taking Tavalisse for almost 3 years now and it has worked with “less dangerous side effects” for the most part actually taking my counts to almost 400 on occasion (100 x2 per day)

 It HAS increased my BP (I was already on meds for it) and I’ve been living with pretty constant - SORRY - diarrhea for almost the entire time. Sometimes I get by with Imodium and sometimes not even that helps.

The challenge with ITP as you know is that it can be so different among patients themselves with differing responses to medications. Please keep us posted. I hope things go remarkably well for you!

Karen - My experience with platelet counts on Tavalisse has been similar to yours in that, on occasion, they go into the 200 - to almost 400 range. When it goes that high consistently, my provider and I have gotten excited and reduced the dose too 100 per day only to have something (like a COVID vaccine or an infection) happen, and they plummet.

So, we’ve settled on 100 x2 per day.

Chad - I was in great shape after a splenectomy in 1993. I went almost 18 years without thinking about ITP and it “returned” after a flu shot in 2010. I had avoided flu shots forever.

That said, so glad that your counts are holding.

Be well.

My daughter had a splenectomy which successfully treated her ITP.  She now needs to be-re-immunized every 5 years to keep her immunity to bacterial infections strong in the  absence of a spleen.  Does anyone have a good list of the immunizations required?  the doctors we talk to seem to be googling for answers just as we are.  Looking for a definitive list.  Thanks for any assistance.  

Hi, Mary, the only immunizations I keep up on are the flu shot every year and the pneumonia shot every 5 years.  Other than that, I just live my life.

Hi... My husband has ITP, which is being treated by Nplate, and he may be having a loss of response. We have an excellent hematologist, but we'd like a second opinion. We'll appreciate any recommendations!

UK Guidelines
Make sure you have received all your routine immunisations (talk to your doctor or practice nurse, or visit  NHS.UK ); there are some extra immunisations people with asplenia or splenic dysfunction should have.In particular you should ensure you have received the following vaccinations to help prevent infections to which you are particularly vulnerable:

• pneumococcal vaccine (PPV23) every 5 years
• meningococcal ACWY vaccine
• meningococcal B vaccine
• influenza (every year)

Presumably not updated to include Covid 

I don't know if there are guidelines here in Canada.  I've never looked into it.  I haven't seen my hema dr since 2011 when I did the Rituxan.  My family doc watches me now.  I religiously get the flu shot every year and I think I'm due for the pneumonia shot next year.
With all the new suggestions for the Covid vax, we did ask our doctor about that and he said we're fine.   I'm sure if something changes, he'll be on top of it.

Do you have a university/teaching hospital nearby?