The 'Quick Reply' and 'Go to Editor' are now working.  

Please test everything out and let me know if there are any other things that aren't working correctly.

Thank you, Jeff
pdsa.org

Thanks for your hard work, Jeff! It can't be easy maintaining a web site. Even when I'm complaining, I appreciate your work.

Clive, I have been in remission since 2011 from Rituxan (here in Canada) (Rituximab, I'm assuming in the UK).
I'm probably in the minority for success.

I'll jump in here too... I cannot edit anything...I click on Goto editor and get the response 404 error Component is missing

Clive
(Sorry I cannot find a way to turn your quote into coloured italics like we used to on the old system to indicate we were quoting)......"I might be lucky and be one of the 20% where remission lasts 5 years, but it is more likely that I will be one of the 60% for whom remission does not even last 2 years. What happens then? I don't know!"

If you have responded well Rituximab courses can be repeated if your count drops again. .

That should read news but I cannot edit it.

Good new ImPatient I am pleased for you.

Mel, don't take this the wrong way, but I'm glad you're having issues too! lol I was beginning to think I was alone with the issues. I too couldn't edit my reply when things started working properly again. Then it went back to the way it was when I first reported the problem to Jeff.
I forgot to look at make sure my profile picture was right today. I'm assuming it is as it's been working properly for the last couple of days.
I did have the "mark all as read", but it wouldn't work. I tried everything Jeff had suggested, but nothing worked. It just started working all of a sudden. Hopefully all the kinks will be worked out soon.

Thanks Mel.
Sorry, I misspelled Mycophenolate!
The haematologist wanted me off it mainly because of possible long-term side effects (eg increased risk of cancer), but also I think to check whether I still needed a treatment, at that point.
My count dropped to 50s *during* the Rituximab treatment - increased after the first two, then dropped. I had the fourth and final treatment 10 days ago, and the subsequent blood test showed a slight further drop (58>56). I have no problems with that count but I'm concerned it hasn't stopped dropping, because Mycophenolate takes 6-8 weeks to kick in. Strangely, the haematologist said he'd see me in 6 weeks and no need for any blood tests until just before that appointment. I think this is rash. I plan to have another test in two weeks.

I couldn't edit my post to add:

I have checked the same "new" (no longer new as I have looked at it a number of times now) reply in the adults section and it still shows it not read - there is no where to click on "mark all read" -

Sorry to butt in here Cindy/Jeff - but it won't let me send a message in this section, all I could put in was the subject

I was able to send a message to Margaret in a different thread but I could NOT edit it to make a sentence make more sense
This has just been since the new update

I tried to edit my response to you Margaret to ask if ....... did your hematologist give you a good reason to go off Mychophenlate and use Rituximab
Sorry my fingers didn't get it right in the first post and I couldn't edit it to make it right

Margaret did you tell your hematologist you did not want to go off Mychophenlate - did give you good reason to go off it and use Rituximab? Do you have problems when your count is in the upper 50s? How long after completing the 4 weeks of Rituximab did your count drop to the 50s? Is it possible that you could still have a good response to Rituximab?

ITP is totally unpredictable. I felt very bad to hear that rituximab didn't help with your ITP. And hope MMF kicks in faster. Mine MMF has again started working I guess.I had a cold again 3 weeks ago and at that time my count was 46. I got a test last week and it showed 73. It's following the same trajectory it did like last year. I asked my doc about long term exposure to MMF and what effects it can have. He said it's a very safe medicine unless you have side effects from it. My only problem with mmf currently is increased risk of skin cancer as mentioned on the box. I'll ask my doc the next time I visit him regarding this.
Hoping you get a response soon..

Thanks Aaklon. I didn't get the boost I hoped for from Rituximab. So I'm now back on Mycophenolate, which I didn't really want to discontinue in July. But it will probably take two months to kick in again.
There were several possibilities considered by the haemotologist but ultimately returning to the one which worked for me seems better than experimenting with others.
I hope your count is going well

After completing 4 weeks of Rituximab - I had good results for two weeks (22>85>129) but then two drops (>58>56). Still a reasonable count, but quite disappointing after the early improvement. I'm now back on Mychophenlate, which I really didn't want to discontinue when the haemotologist took me off it.

I did click my profile picture and it brought up your info. I couldn't even find the "manage your account" button. But like I said, all seems to be fine right now. If I have any more issues, I'll let you know.

Not sure what happened, if you did something or it just needed time, but all seems to be working right now, so thanks!

Today I'm Margaret. I went to "My Profile" and all the information there is right. But when I clicked on edit, your information came up again.

Neither of those two suggestions worked. Your profile came up under my picture (right above this post and one a few posts back) and the same with the link you posted. Any other suggestions?

Nope, not fixed! Went back the way it was when I made my original post.

Not sure what happened, but everything is back to normal!

HI, Jeff. Love the new look, it's rich looking.
Two things I noticed today, I can't mark all the posts that are old as read and on the main page, it has drbean's avatar instead of mine.
Nothing too major, just more curious as to how the avatar got switched. Hope you can fix it.
Thanks for all your hard work!

Hi Susie,

I hope you are getting on alright. I recently found this patient leaflet which I thought might be useful to you. It contains information about treatment options and supporting ITP patients to be involved in treatment decisions. [ www.itpsupport.org.uk/download/ITP%20Shared%20Decision%20Making%20Toolkit%20FINAL%20Version.pdf ] If you do find it helpful, maybe you could fill it in and send it to your haematologist?

If you are still looking for treatment suggestions, I would also mention eltrombopag or similar medications as non-steroid options. These stimulate your bone marrow to make more platelets (if I remember correctly) and personally I had no side effects from eltrombopag at all, and it worked for me for years. I don't know if there are any contraindications for osteoporosis or other medications you may be on, though.

In terms of blood test results: if you get your bloods done at your GP practice, you could ask of they have online services, such as the NHS app. If so, you might be able to access your blood results on there. You could also ask the reception team at your hospital department (haematology?) if there is any way for you to request blood test results. Ideally they would assign you a specialist nurse who you could contact.

Best Wishes,
Raph

Hi Cathy,
I am interested to know if you have any update on your potential mast cell disorder. I have a lot of symptoms that could indicate mcas, mastocytosis, or HaT (Hereditary alpha-tryptasemia) but it is hard to know for sure as these symptoms can be caused by so many things.
Hope you are well,
Raph

Hi everyone!
I have chronic ITP and I've recently been considering the possibility that I have comorbid mastocytosis or another mast cell disorder.
A study I read hypothesised that for some people ITP might be caused by mast cell disorders (unfortunately I lost the link).
The mayo clinic also lists bleeding disorders as a symptom of systemic mastocytosis.
I was wondering if anyone here has experience of ITP alongside a mast cell disorder or HaT (hereditary alpha-tryptasemia)?

Good for you!! I think my hematologist would say that 80k is the same as your 90k.
Keep it up - I'm happy for you!!