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ITP Support Association
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Dropping after 4 months

Four months on from finishing my Rituxamab treatment - today my levels fell 10.000 to 51.000 from last months 61.000.

I wasn’t expecting this until maybe February 2020, it’s so annoying, as a grown man almost 40, I could cry with the news today.

I thought Rituxamab would be the way forward.

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poor you, have my sympathy after going through all that treatment.

Did the same, hasnt worked. Poops!

but still ....i am ok with levels down to 20000, long as they dont go lower (which they have) so if you stay at 50.....could be ok? if you dont have symptoms

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Hi. Don't despair about a drop of 10,000. Platelets naturally very anyway and you may find at your next check that they have risen again. I read on this forum that finding the right ITP treatment can be a long and frustrating road, and that was the case for me. I tried several drugs that failed to help (including rituximab) but we got there in the end and my counts now tend to be in the 120,000 to 180,00 range and I feel very well. So chin up, you'll get there !

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Thank you hopefully in one month that’s the case and yesterday was a blip, yesterday was the hardest in almost two years with ITP, and my mind is still heavy today.

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What did finally work for you? I'm currently at 23 with no treatment. It would be great to be able to live a little more care free.

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The drug that finally worked for me was eltrombopag (also known as Revolade or Promacta). This a drug that works in a different way. It doesn't supress your immune system, instead it stimulates platelet production. My haemotologist said he is seeing over 90% success rate using this drug and I have been able to reduce my dosage to a very low level and still keep my platelets in the 100-200 range, with an occasional drop a bit lower if I have an infection. I am monitored about every 6 weeks. It was only when I was put on this drug and started to feel normal that I fully appreciated how ropey I was feeling before. Might be worth discussing with your Heamotologist. Good luck.

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Are you still taking revolade?

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Hi. Yes I am now on a dose of 25mg three times a week. It is a very low dose but still keeps my count around 100 to 200. We tried gradually coming off the drug altogether but my platelets dropped right down again, so I will continue on 25mg three times a week for now.

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How long revolade take to response? My wife started taking it 4th day running with 50 mg/day. Now her count is 5k.

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I also started on 50mg a day. My count wasn't tested for 2 weeks and by then it had risen to 300, but it definitely took over a week for my 'low platelet' symptoms to disappear. I don't think you should be too worried. 4 days is very early in the treatment. Please do let me know how she gets on.

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She is not having any serious bleeding problem but somedays wet purpura comes out inside the mouth. Please tell me how long that medicine you have taken? Have your doc reduced the dose after rising 300k?

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I have been on the medication now for nearly 2 years. Yes, they did reduce my dose when my count rose to 300. They like to try to keep it around 100, and that is where it is most of the time now

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PRU …. STARTED PROMACTA 7 DAYS AGO .. A ITTLE 3K BUMP UP TO 36K AND DR, SAYS GIVE ANOTHER 2 WEEKS .. HOPE / HOPE .. JIMMY

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Good news that it's moving in the right direction. Let us know how it goes :-)

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just started promacta what r the side effects ????? 140 k is normal …… congrats ……. what dosage promacta and idoes that have to taken for the rest of your life ??????????????? I read where promacta keeps platelets up even after you stop taking it ?? stay well .. jimmy

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Hi Jimmy. I haven't had any side effect problems since I've been taking it. I did develop a bald patch behind one ear but I think that may have been caused either by stress or by some different pills I was taking before, and fortunately it has now grown back completely. I am taking 1 tablet (25mg) 3 days a week. That is a very low dose but keeps my platelets up in a very safe range. Be prepared for possible temporary drops if you have a cold. It is very important to follow the advice about not taking the tablets with certain foods. You should have been given a leaflet with all the info you need. I am expecting to stay on the tablets long term. We did try weaning me off the tablets a few weeks ago but my platelets fell so I went back on them and they rose again. However, I have heard that a minority of people have been able to come off the tablets and still keep safe platelet levels. Le tme know how it is going when you can.

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pru … so its the best drug to take for our situations ( little side effects ) very expensive and I know many eople cant afford it ??? as I was 60k last week and another count tomorrow .. I will let you know … weaning off the prednisone ( 1.5 mg. now ) and the danazol ?? I am 4 months into this and praying for remission ???????????? the promacta site does say that it MAY keep levels up without taking it anymore … stay well and stay in touch .. jimmy

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Sounds like your counts are moving in the right direction ! I had heard that it is an expensive drug but in the UK it is provided on our health service so we get it for free. Even in adults ITP sometimes goes into spontaneous remission. Mine disappeared for about 7 years without treatment but then returned. Another thing to remeber is that if you respond well to the drug (and most people do) it may be possible for your dose to be reduced considerably. I only take 75mg a week now and I met another lady at the blood clinic who is on a similar dose. Let me know how it goes :-)

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My count has steadied at about 38k (no meds/ treatment) without issue. It has dropped from 85k when I was first diagnosed in 95 to this.

As long as I don't go below 10k, the docs don't worry....and as I only have bloods done every six months, I only know what they are at that point.

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So you get no signs?

I get bruising, fatigue really tired, pains in my head and more blood than usual going to toilet, in September my eye filled with blood.

I would be afraid not to get treated, I had two relations one 40 years ago the other 30 years ago with 30 year age gaps who died of bleeds to the brain.

I think the must have had what I have but didn’t not know and were never tested, I can’t be sure but I know they died from a sign of it.

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I bruise and get tired, but after 23 years of dealing with this, I've learned how to pace myself. No blood when I go to the loo...if there were, then I'd be thinking bowel problems, not ITP, unless it was piles of course.

I don't know where you are, but in the UK and Belgium, if you are asymptomatic, they don't intervene until your count is about 10k. My count has fluctuated 20k in 2 days in the past, so unless you are having daily blood tests, you only ever get a snapshot.

I know to look out for nosebleeds, and unusual bleeding in my mouth; apart from that, I try to forget about it.

People get bleeds on the brain without ITP; my father in law had one after a GA.

There are posters on here whose count is normally about 10k; they travel internationally, work etc. I think you have to focus u s on how you feel as opposed to what the numbers are. I've felt lousy with a count of 55k, and full of beans with a count of 19k so go figure as they say.

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I had the camera work done in that department and everything was fine, they took a sample while doing it (Polop)

I understand that anyone could get a bleed anywhere, but I was using the family history as a guide, I don’t want anything like that, it’s scary.

I was in my 20s for I think 10 months of 2018, my consultant has said ideally the would not like levels to go below 20.000 because then there is a risk of bleeding.

Maybe with time hopefully I will come to deal with it like you, but to me it’s still new, it was tough this week I expected them to be up.

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Having ITP triggered by being pregnant, I didn't have time to be scared about having it, as I was dealing with a new baby, and yes, I had him in the normal fashion.

I think you have to learn to live with this and just carry on. This week I've flown to Vienna, spent a couple of days there walking around soaking up the architecture and doing some shopping, and whilst I'm tired, I don think it's made my platelets dive. I drive; isn't that more dangerous than ITP.

Probably, as I know I will bleed once a month, being female, I am more sanguine than you. I also tell myself this could be worse....I could have cancer, MS, Parkinson's, which would limit my life far more than this.

You haven't got ITP, it has got you...you are the one who has the control about how you deal with it. Feel the fear and do it anyway!!

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