Itp: Hi I have recently been diagnosed... - ITP Support Assoc...

ITP Support Association

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Itp

sarb30
sarb30

Hi

I have recently been diagnosed with itp and i had the ivig treatment a week and half ago as my levels had dropped to 2 after the infusion levels went up to 110 now i have suddenly come out with blood blisters in my moith and have bruises on my legs with petechiae does this mean my levels have dropped again has anyone had this

Thanks

14 Replies
oldestnewest

Yes I would say that your levels have dropped to below 10 again as the blood blisters and petechiae are a common indicator (been there, done that). It was good to see that you responded to the IVIG (I didn't) so they may give you another course of that or else move you onto one of the other available treatments.

Hidden
Hidden in reply to Robert1959

I get exactly the same when my counts are low. ring your doctor asap.

Yes, my experience is the same. The IVIG would lift my count by about 80-100 then after about 2 weeks they tend to drop back to under 10 and the bruises, blood blisters, blood in the nose and fatigue were the warning signs. So you need to get an urgent appointment with your haematologist. It's very dispiriting but the good news is that you respond to IVIG so it's available as rescue remedy if you get into trouble. They should now start making decisions about the care you need going forward. Many ITP sufferers whose count is not too low or who don't suffer from symptoms need no active treatment and are just monitored. If, like me, you do need treatment there are many options available and you will need patience while they work their way through them until they find the one that works for you. In my case I have tried steroids, rituximab, and azathioprine with either short term response or no response at all. I am currently on MMF and things are looking positive. Don't despair, they will sort you out eventually :-)

What is mmf

AnthonyHeard
AnthonyHeardAdministrator in reply to Mselle

MMF is a a short name for Mychophenolate Mofetil ( I have been on it since April 2016 and it has worked for me pretty well ). It suppresses the immune system as does Prednisolone, Azathioprine, Rituximab. It is a drug which is used primarily in patients who have had an organ transplant as it helps to prevent the immune system from rejecting the new organ. The only thing is that MMF takes about 3 months to impact on the platelet count so it is not a quick fix if you have a very low count. Here in the UK MMF is getting more widely used now for ITP but it is not as well known as Prednisolone or Azathioprine for example. I know that one major research hospital here in the UK is looking at using it in conjunction with Prednisolone so that the patient ends up taking lower doses of the steroid. You can check out my own experiences with MMF at mu ITP blog....If you click on the following link....

anthonyheard.simplesite.com

and scroll down to the Chapter entitled ....."The Moment You Know, You Know, You Know"..... that will reveal details of my MMF experience.

Hope that all helps

Best wishes

Anthony

Hi Anthony. Can I ask you a bit more about your experiences when you were first taking MMF? I started taking it 7 weeks ago, initially on a dose of 500mg a day and that was doubled 4 weeks ago to 1gm a day. I've had some periods when my platelets were sitting and higher levels than they have previously achieved but I've had a couple of big dips to single figures and needed IVIG as a rescue. I'm starting to wonder whether MMF has been another failure (prednisone and rituximab both helped briefly but then failed). My consultant has taked about another dosage increase. Do you think there is still a chance it could work ?

Thanks,

Amanda

AnthonyHeard
AnthonyHeardAdministrator in reply to prudencepayes

MMF can take upto 3 months to impact on the platelet count so if you have only been taking it for 7 weeks I would say keep going for at least another 4 weeks or so. In my case I was already on Prednisolone and my platelet count had been stabilised by it for 3 months and they gradually reduced my Prednisolone dosage at the same time as putting me on the MMF. So I had my platelet count maintained so to speak by the reducing dosage of Prednisolone whilst the MMF was kicking in. Once I had been on the MMF for 3 months my Prednisolone was taken away.

The big plus for Prednisolone is that if it is going to work it works quickly (usually within a week) and of course it is cheap.

So for me it was as follows..

April 2016 Prednisolone 50 mg per day reducing by 5 mg per week, AND 500 mg twice per day of MMF

May 2016 Prednisolone 30 mg per day reducing by 5 mg per week, AND 500 mg twice per day of MMF

June 2016 Prednisolone 10 mg per day until mid June then 5 mg per day till end June AND 500 mg twice per day of MMF

July 2016 NO further Prednisolone just the MMF at 500 mg twice per day.

The thing is we are all different and of course respond differently to each treatment BUT as a general rule of thumb if you get a positive response from Prednisolone in MOST cases it is a good indicator that you will get a positive response from MMF.

Hope this helps

Best wishes

Anthony

PS ....Since mid May I am now on just 500 mg per day of the MMF, my specialist feels that it will keep my platelets at pretty stable levels and minimise the need for too much of the drug.

AnthonyHeard
AnthonyHeardAdministrator in reply to prudencepayes

Another observation also would be that if you started on 500 mg a day it seems a bit low. The dosage is usually based on our size /body mass and my specialist suggested that actually he would have started me on 600 mg twice a day as a minimum BUT I insisted I started on 500 mg twice per day and luckily for me it worked.

If you are now on Ig then it should start to help and as I said give it another 4 weeks or so to see. Are you based in the UK ?

If you are UK based you can always get a 2nd opinion on your treatment. If you are in the UK where are you being treated currently?

Hi Anthony

Thank you very much for your helpful observations. I'm living in Hertfordshire and have had care from my local hospital, but asked for a referral to an ITP centre of excellence and have seen J.P. Westwood at UCLH. My care is being shared with my local hospital. My next UCLH appointment is in July. He has recommended a further increase to 1.5g of MMF before then. At the July appointment he will decide if the MMF is working. If not he recommends a TPO agonist which he feels confident will do the trick.

Amanda

AnthonyHeard
AnthonyHeardAdministrator in reply to prudencepayes

If MMF had not worked for me then I would next be on a TPO agonist so your specialist is clearly thinking the way that mine has. I have not met any of the specialists from UCLH but know they have an excellent reputation so you are in good hands.

Incidentally I went to school in Hertfordshire, Potters Bar to be exact Dame Alice Owens School.

Best wishes

Anthony

I'm a bit further west than that, but not far away. Thanks for your support - I'll let you know how it goes.

Amanda

What is an ivg treatment?

AnthonyHeard
AnthonyHeardAdministrator in reply to Mselle

Mselle... the following link is to a list of all the treatments for ITP including IVIG....itpsupport.org.uk/index.php...

Hi Sarb!

it sounds like your platelets have dropped considerably, the IVIG sometimes is only a short term fix, are you on any steroids or retiximab

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