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.

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

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.

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.

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

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..

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?

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

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 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" -

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.

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.

Good new ImPatient I am pleased for you.

That should read news but I cannot edit it.

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. .

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, 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.

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

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

Hello,

How is your wife doing? Is she okay? are there anymore supplements/medications that she has been doing to keep her stable?

Thank you

Hi,

Yes she is currently stable with Quercetin and Doptelet alone...Some fluctuation, but never below 140...Just added Egcg and waiting a couple of weeks to see if any improvement. Hope is to lower dosage on Doptelet from 40mg daily as don't really know long term effects.

Thank you Jeff - I am typing this as a Quick Reply I was able to go to the editor too. And thank you for all you do!!!

Hi everyone,

In 2007 when I was 13 before school I had to do mandatory health check and my platelets were at 13k. Got sent to hematologists for bone marrow biopsy, didnt show anything. They were suspecting that it could be caused by my tonsils, I would get sick pretty often with sore throat, temperature, inflammed tonsils. As I as still sitting in single digits, they gave me IVIg to increase my platelets for operation. It increased to 75k ish and I had my tonsils removed. Had some minor bleeding complications afterwards but they burned the wound. After surgery my platelets would jump around 40-70 range and we decided not to take any extra treatments. I would get my bloodwork done every 2-4 weeks and it seemed to never change much. I would get sick, it would drop to 30-35k, get over the sickness and it would jump back to 50k.

Spent my teenage years being cautious about my condition. No heavy lifting, dangerous sports etc. Never had any major bleedings, just bruises that would pop up there and here.

We were speculating that my ITP was caused by tick encephalitis vaccine that I had at the start of the year. But hematologists were not able to tell us anything more.

In 2021 I noticed petechiae and I instantly knew my platelets dropped again. Went straight to the hospital, had bloodwork done and it came to 6k. I got put on prednisolon, my platelets jumped up to 40-50k range but after few months of suffering from from pred side effects (I had severe muscle pain) I was given an opportunity to try Eltrombopag (revolade/promacta). Started at 75mg was ranging around 50k, after a year it slowly went up to almost 100k and I went down to 50mg dosage. Since then its been ranging 60-70k at 50mg. If I understood correctly using eltrombopag for a long time can mess up my bonemarrow which might lead to cancer? Something about cells becoming more round if Im not mistaken? My hetologist is not concerned about that at all and is refusing to do bonemarrow biopsy (last one done 3 years ago). Overall I dont have any side effects whatsoever from Eltrombopag, but bonemarrow problem and possibility of thrombosis is always on my mind. I feel stuck at this point.

Hi, Raph.
I was not able to find out anything useful about the relationship of mast cell issues and ITP. However, I seem to have stumbled into a treatment for them as part of a clinical trial I have been enrolled in since February 2023. And that is to take a low dose of dexamethasone over a long period of time.

The drug trial is for a new BTK inhibitor called Rizilbrutinib. I go to the University of Southern California once a month to check on my progress. Because my platelet count had been below 5 for most of the previous 6 years, the doctor running the drug trial wanted to raise my platelets before starting the trial and make sure they were around 30 even if I was not receiving the trial drug during the first 6 months (this was a double-blinded study and so the doctor and his staff didn't know if I would be receiving the drug or a placebo at first.) So he put me on Doptelet. It didn't work by itself at first, so we added 1 mg of Dexamethasone to the protocol, and that succeeded in raising my platelets to safe levels over 30. Over time, I have taken 40 mg of Doptelet and .5 mg of Dex daily in addition to the trial drug. Since then, my platelets have reached a high of 328 and have stayed in the safe zone above 30 for all but 2 weeks since starting the trial.

I had developed an allergic reaction to NPlate about 10 years ago, which stopped working after 14 months and led to my developing salicylate sensitivity. As I result, I broke out in itchy rashes whenever I tried to eat most fruits and vegetables. About six months after starting the clinical trial, I realized I could eat these foods and no longer broke out in rashes. I credit the small doses of dex I have been taking during this time for my success in getting over my food sensitivities.

My platelets have been stable and over 100 (around 180) for the past two months. So I am starting to wean off the dex, and after that, will start reducing the Doptelet and see if I can get off of that, too. I don't know yet if the study drug will work on its own. But I am very happy to be free of the salicylate sensitivity and be able to eat most foods again.

So if you are experiencing allergic symptoms and dex seems to work for you, you can ask your doctor to prescribe 1 mg of dex and see if that helps raise your platelets. My platelets went up to 30 within 1 week of starting the Dex and Doptelet combo, even before I started the clinical trial. So that may be an option for you to try. Low dose dex might even help you to get better results with Eltrombopag. (Note that prednisone doesn't work for me even though dex does.)

Also, I had previously tried the short-term dex protocol (4 days at 40 mg/day), and while that temporarily raised my platelets, they fell back to less than 5 a few days after getting off it.

Good luck with this. Let me know what happens.

Best regards, Cathy



Best regards, Cathy

Just in case this can help even one PDSA member, I think it is important share my ITP issue. I had a diagnosis of ITP for 8 months in 2017 with platelets crashing to as low as 1,000 and needed IVIG and decadron, etc to keep me from bleeding out. FYI, my ITP occurred one month after I rode horses in the jungle of Costa Rica. I went to a great University hospital Dr. and to a large well known clinic hematologist and these specialists said I'll have ITP forever. The great news is they were WRONG! I was cured in 1 month by a homeopathic dr who did rife therapy and after I took over the counter antiparasite medication. I have not had ITP since 2017.

Just in case this can help even one PDSA member, I think it is important share my ITP issue. I had a diagnosis of ITP for 8 months in 2017 with platelets crashing to as low as 1,000 and needed IVIG and decadron, etc to keep me from bleeding out. FYI, my ITP occurred one month after I rode horses in the jungle of Costa Rica. I went to a great University hospital Dr. and to a large well known clinic hematologist and these specialists said I'll have ITP forever. The great news is they were WRONG! I was cured in 1 month by a homeopathic dr who did rife therapy and after I took over the counter antiparasite medication. I have not had ITP since 2017. Hopefully this information is helpful. 

Hi Clary123,
I hope you are doing well.

Hi Patc,
Just checking in on how you are doing.
Cindy1