I am somewhat new here and wanted to introduce myself.
My name's Luke and ITP is a fairly new thing for me. I might have suffered from mild ITP early on in my life but it only started to be problematic after I've undergone treatment in 2013 (4 years of remission so far, so I am definitely hopeful!). I was given Rituximab as part of my treatment which might have helped offset it until 2015, but acquired ITP is suspected as a possible side-effect of chemo, so the other components of the treatment probably did that.
The first two years I made do with short term combinations of corticosteroids and IVIG. My ITP always seems to come in spring and go into remission a couple months later.
Or so it did until this year. I was hospitalized with 3k which further dropped to 1k and I ended up spending 7 days in hospital as conventional treatments proved ineffective this time. Then, I was given Nplate which had an immediate effect and my platelets shot up yo 450k, combined with a shock dose of corticosteroids (three days of high dosage). This worked for three weeks after which I was given another Nplate, this time without the shock dose and it only lasted about 10 days. The good news is that it is effective still.
Despite this, we're currently trying Revolade / Promacta and I am at 130k after one week of 50mg/day dose and feeling great. I am going to be traveling abroad early next year and so my hematologist wanted to try me on Revolade as it would be much more convenient (plus it is more likely to keep less erratic counts and also apparently should be better as a potential "remission trigger").
So I do feel lucky that I currently have two methods of treatment available to me, both of which could probably be combined with corticosteroids to be more effective. ITP is a very annoying condition but it is nowhere near as bad as chemotherapy so I generally try to just be grateful I am where I am. Even when I was down to 1, I never had any serious symptoms beside petechiae in my mouth and easy bruises (hands, legs and sometimes nose) and I can somewhat self diagnose myself this way, together with increased fatigue.
We're trying to find out what triggers my "spring season" ITP but I am not sure we'll succeed... But as others have pointed out, there are far worse conditions to have and having experienced one such, it gives me good appreciation of what I have.
I think that's enough of my rambling Thanks to everyone who took the time to read this and thank you for having me here! This website is a great place to be and browse through and it helps me realize there's more of us out there, for better or worse. Cheers!
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conquerator2
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Good to have you on here and thanks for sharing your story. Alk the best for getting everything steady for your travels. ....where are you off to?
Actually where are you starting? Are you US or UK?
I am just about to start Rituximab after years of on off lowish dose (occasionally high) corcortisoids.. and some Anti D.
I feel nervous about this as I have tried to resist for 10 years... I am similar to you know terms of being g fairly symptom free. Platelets are 8 at the moment. ..lowest ever for me.
Did they try you on this one? Or is ot another name for one you mentioned?
I reside in the Czech Republic which (luckily enough for me) has universal health care which also includes most prescription drugs (including Nplate and Revolade).
I think that's very much in line with the way health care works in the UK, Germany, etc.
I intend to study in Canada so I'll definitely need to make some arrangements for that as they do not cover prescription drugs there.
I did mention Rituximab. It's usually the first line of defense right after corticosteroids / IVIG / Anti-D (that one we haven't tried yet but I am aware of it, how's it administered and how time consuming it is?). Rituximab is usually fine and can work for a long time or not (anywhere from a couple of months to years) so it's a good drug to try, ususally side-effects free (then again I've never had any! But most people have no issues with it). The only disadvantage is that it takes a couple hours to administer.
Thanks for reply. Anti D used to take about 3-4 hours every 4-5 months. No side effects at start but then found headache plus very tired the next day.....
Alright, thanks. I'll keep it on the back burner as an option but Revolade is definitely the less intrusive option right now, followed by Nplate. Keep me posted!
I think my sons ITP is due to allergies as he also has swollen inferior terbinates which is caused by allergies. His nasal passage is completely blocked. My son had IVIG as the steroids were not effective. Poor little man is only 2 and has needles weekly, sometimes twice a week. His platelets drop by the hundred, he is sitting at 63 last week..hoping this friday will be a little better.
I def have to agree, we think ourselves extremely lucky..we see the chemo patients and it breaks my heart.
It very well might be allergies and it's been suspected, however we're not sure of a way to combat that as I don't want to be eating corticosteroids proactively all year.
I'm interested in the allergy theory. I never suffered from hay fever or any similar allergy until I reached about 40 when it arrived with a bang - severely streaming nose for large parts of the year. My ITP started at about the same time. My platelet count was sometimes in single figures and my symptoms included bleeding gums, nose bleeds, bruising and fatigue. It took some time to find the right drug but eltrombopag (revolade/promacta) was like a miracle. After about 15 months on that drug my dose is down to 25mg twice a week and will soon be stopped as my counts stay around 200 and I seem to be in remission, as shown by my IPF reading. Interestingly I have had no hay fever or allergic symptoms for months now. I can't help thinking the 2 are connected.
It would make sense, since both allergies and ITP are related to the immune system. My theory is that an allergic reaction can serve as a trigger for your body to start attaching anti body to the platelets. Now, I am not saying that is the sole possible trigger of ITP, but others like infections and illnesses also have to do with an increased immune system response to something.
Apparently, Revolade / Promacta have an effect on the immune system in more ways than one, so they may very well have some kind of corrective effect on it. According to my hematologist, Revolade is more likely to trigger remission than other drugs (which would also support your theory) so it all fits together. I am currently on Revolade as well... I thought I saw a petechiae in my mouth yesterday but it seems to be disappearing whatever it is (paranoid much :P) and I do generally feel better and more even in terms of energy levels than on any other drug, which is good. We'll see after my next scheduled check how well Revolade is doing
my child was diagnose with itp 3 month ago she try prednisolone ,dexametasone ,ritaximab,so far nothing works ,moment she stopes prednisone her numbers drops from 50.000 to 15 000.anybody know if ritaximab works ride away or we have to wait.and 1 more thing she gain 20 pounds during treatment ,any suggestions/
luke .. your ok bro …. I am in the 40k / 45k range with 50mg. promacta and 300mg. danazol as nothing else worked so I am ok also for now .. I am from florida and last week traveled to the phiiippines .. will be here for at least 6 months … MAKE SURE YOU HAVE YOUR PRESCRIPTION AND A DOCTORS NOTE WITH YOU WHEN ARRIVING AT CUSTOMS AS THEY CAN CONFISCATE YOUR MEDS WHICH WOULD BE A NITEMARE ALSO ANY RENEWALS THAT YOU HAVE MAILED HAVE THE SAME IN THE BOX .. FEDX WILL NOT MAIL EVEN ASPRIN SO DHL OR UPS IS OK .. I also appreciate the disease we have compared to other issues we could have .. last month at the doctors office it was full so they put me in the chemo waiting room and I looked at those people waiting to die and said to myself this I T P is nothing .. god bless .........… ARE YOU IN THE STATES ??? jimmy jiimmy@comcast.net
Hey Jimmy, yea I am in LA currently. I got a second opinion here and it confirmed ITP again and the other issues I have, mostly immune related.
So far the doctors and facilities here have been top notch so I can't complain.
Currently on 8mg methylprednisolone and around 100k so fingers crossed! Should be making my way up to Vancouver, BC later this month if things keep up!
C 2 .. 100K WOULD BE A DREAM FOR ME BRO !!! THE PAST 10 YEARS I HAVE ALWAYS BEEN 70K / 85 k then my drop to the teens .. doctors never mentioned my low platlelets till the drop .. looking for an attorney now .. hey they actually told me that my low platelets was normal for me .. wtf .. also they had me on terazosin for the prostate which I found out causes thrombocytopenia .. we are not going to die from this but I am concerned about the side effects ??? blood work is always wacky .. stay in touch bro .. jimmy ……….. jimmy@comcast.net
You too! I wouldn't be too concerned about the side effects. That's something we can focus on when / if they show and only when our counts are stabilized
Somehow I missed your earlier post regarding your treatment protocols. You are extremely well informed and I always learn from your posts.
My doctor (GP) and the pharmacist did not know anything about Revolade or Eltrombopag. The pharmacist looked it up and informed me that here, in Canada, Eltrombopag costs $2,000/month and Revolade costs $1,800 per month.
Welcome to Canada. We are much better in other ways than pharmaceuticals. Hope you have a wonderful time in Vancouver.
Lots of that has been through self research; I am always being respectful to doctors, but it's always good to not completely rely on their knowledge and do your own research.
Yes, thrombopoetic (bone marrow stimulants - Revolade / Promacta, Nplate) are very expensive in Canada. I hope I won't need them or that Canada will finally adopt the universal Pharmacare system for all drug prescriptions like many European countries do, but we'll see!
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Thanks to everyone who took the time to read this and thank you for having me here! This website is a great place to be and browse through and it helps me realize there's more of us out there, for better or worse. Cheers! 
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