Since being diagnosed with ITP, what ... - ITP Support Assoc...
Since being diagnosed with ITP, what is the HIGHEST platelet count that you have had?
hi there still waiting to try eltrombo kind regards salmagal
highest count 240, but now between 60 to 70
Highest count 200, lowest 4, in remission since August 2010 and count at last check in November 2011 was 144. By coincidence it was also 144 in July 2011. Next check 30th April so fingers crossed !!!!
May I ask what medication you are taking?
Mags
Hello mags, I had Rituximab in August 2010 and have been in remission since then. Before that I had Prednisolone on four different occasions over a period of four years. My ITP statred completely without any previous illness in July 2006 when my platelet levels were 4. Main symptoms were bruising and tiredness. My platelets always went up to over 100 when I had Prednisolone but as soon as the steroid was withdrawn my platelet levels fell back to between 10 and 20. I also tried Azathioprine twice and reacted very badly( rahes, severe dizziness, nausea, fever, very unpleasant) so in July 2010 I was started on Rituximab which is given in 4 separate transfussions which last anything from 5 to 8 hours depending on whether or not the patient shows any signs of bad reaction. I am aware that Rituximab is quite expensive, albeit we are lucky that the NHS covers all the cost . Just like all ITP treatments Rituximab does not work for everyone. I am just grayeful that so far it has worked for me and I have not had any medication at all since August 2010.
I will ask my consultant about Rituximab, it has never been offered to me for trial. I have had ITP since I was 2 years old, had a splenectomy and appenectomy when I was 3. I was on steroids not long after leaving hospital for a while then everything went into remission till I was 25 when a combined dose of pneaumonia and meningitis vaccinations caused for some reason a relapse.The doctors didn't say it was that but I'm guessing that's the cause as I was fine before. I was given everything under the sun to try and get it under control, I started with a count of 4, with a rash on my feet and legs and black bruises. High dose of steroids for a while and also a one off transfusion of steroids pushed it up to over 100, but was short lived. Had Azathioprine for a trial along with Losec (omeprozole) for the chronic indegestion and steroids and penicillin v and some other ones I cant remember, I should have been rattling lol. I had a new form of immuno globulins too but that only lasted a short time too for a trial, I wonder if that was Rituximab as I was a guinea pig for a week. I will still ask anyway. Great news for you though, I'm pleased for you
Hello swheels, sorry to hear that you have been having such a difficult time trying to get your platelets to stabilise. I am just grateful that Rituximab worked for me and it might be worth you asking about it
It did occur to me that you might want to discuss your case/treatment with an ITP specialist to get a second opinion so to speak.
We have may questions from ITP sufferers and their families asking whether it is possible to get a second opinion about their case. ITP is very rare with only about 4000 people in the UK suffering from it at any one time. Therefore many doctors and hospitals do not see many ITP cases and by their own admission are not ITP experts.
If you feel that you want to refer to an ITP specialist then it is your right as a patient to do so and the attached link provides a list of the recognised ITP specialists in the UK....... ukitpregistry.com/itpforum/...
Anyway hope this helps and do keep in touch.
Best wishes Anthony
I'm due my annual review this month - my last count was 32, I hope it's improved!!
Good luck Lynnek. Like you I am due my 1/2 yearly review at the end of this month. Fingers crossed for good platelet numbers.
Since my diagnosis in July 2009 (count 18) I've had 2 sessions of prednisolone, both of which got my count up to over 300 - I had an 18 month remission after the first course, but then my count fell pretty soon after the second one. I was around 25 for a month or so, and then it dropped to 4, then to 2, when I was in hospital for IVIg. Shot up to 140, then a week later, dropped to 26, then to 13, now currently 9. Rituximab is being discussed, will speak to docs about that on Thursday as am keen to keep a splenectomy at bay (not a great idea with allergies to penicillin and erythromycin!). So, 3-4 weeks after IVIg, I feel fine but have some petechiae and some prize-winning haematomas 
Hi Rachel
I have had a splenectomy and it did nothing to help my ITP. Rituximab had no effect on me either. You just have to try different drug regimes to find the one that suits you. My spleen was taken out 20th March last year and we are still trying to find the right combination of drugs for me. Just keep going and dont give up or give in.
NickyD
Hi NickyD. Not good to hear about splenectomy. I was diagnosis April last year with ITP after seeing 2 doctors locally and at Mayo. After 15 transfusionsof platelets, 2 IVIG and 4 rounds of Rituximab in September the counts got to 58K and since then have progressively gone down. To add to this, . I had to have back surgery due to herniated disk just last week. Got pumped with 4 units of platelets for surgery and today the counts are down to 11K. Now they are talking about taking my spleen. What's left after that if it does not work? Not overly encouraging!
Highest count 1400 - why stop your poll at over 600? I have had several counts in the 900's.
I have just amended the range of options on the poll to give a wider perspective. Many apologies that on the original options I did not give a broader range.
Sorry Nicky , it is simply because HealthUnlocked just do not give us any more than 8 response boxes. It is difficult to fit in the entire range so many apologies that I could not include more options.
The range looks much better, thank you. Am I the only person with a count that has gone above 1,000? I have tried to register my count but it does not appear to have been logged.
HI Anthony
Having said my count was not registered - I now see it has been !
Nicky
I know what you mean, it does seem to take a while to update sometimes. I will email HealthUnlocked HQ to see if it is a common issue .
I recommend pregnancy. Mine slowly crept up from 40 to 80, then slowly came back to 50 over two years (but still breastfeeding, so may drop further when that stops). There is a chance of it going the other way, though, which is obviously as problem.
My lowest has been 4, my highest after a steroid transfusion over 100 for a short time.
Anthony I just read your reply up above, I do see a specialist in haemotology every time I go to Heartlands hospital. I did ask about it and as I have not had a reaction or relapse, they seem to think that as my ITP responds to steroids the new treatment would be a new steroid beginning with D for 3 days, then try the rituximab. As I am stabalised around 20-25 they are satisfied at the moment. I will keep asking though, and to be fair they have been great.
Moderation team
