What has been your treatment? - ITP Support Assoc...

ITP Support Association

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What has been your treatment?

RamblinAstateMan
RamblinAstateMan

Just curious what has been your Doctor’s go to treatment/prognosis?

The hematologist I originally began seeing initially had me on 80 mg of steroids for about 4-5 weeks and once my platelets continued to fall tapered me off began doing a combination of IVG transfusion and platelet transfusion-both temporarily worked but my platelets began to slowly fall again. I’ve read both these treatments are “band aid” treatments. There was another extreme form of medicine he wanted me to begin taking (started with an R can’t remember full name) but my PcP advised not taking it.

To complicate matters further more, the hematologist said my ANA came back positive, and he said that was indicative of lupus and wanted me to see rheumatologist. Flip side, my PcP disagreed, saying i am not exhibiting any symptoms for lupus and when he ran another ana blood work, he said it came back “perfectly normal.”

Obviously, I am currently seeking a second opinion but just curious if those with ITP have had equally if not more frustrating experiences like I have. Also, has anyone been given like a “long term treatment regiment” and has that seemed to help your itp condition?

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Sorry wanted to add a few more details...

-Sure many of you are aware but ivg/platelet transfusions are EXPENSIVE. Not to mention don’t seem to resolve the issue.

-The hematologist i’ve been seeing said if this “R” medicine didn’t work was going to suggest having my spleen removed. I’ve had someone I know who also has ITP strongly advise me against doing this, has this didn’t resolve his ITP and now has seemingly further weakened his immunity system. I have also done further reading that indicates the removal and resolution rates are iffy at best.

-As of this posting I have requested a second opinion from a different specialized doctor, and until I seem this individual am doing my best to still eat right, limit myself to little to no alcohol, and doing further reading on what can help boost platelet counts (some articles have suggest taking B-12 supplements). Has anyone taken this or other supplements?

Hi. I live in UK. My platelet count fell to 1 back in February and like you I was given high dose steroids (though 60 mg not 80). Initially they resulted in good and quick increase of the platelets but then fell back. I was switched to another specialist who has had me on a drug called Eltrombopag (where do these names come from - took me weeks to learn how to pronounce it). So I have progressed to 70 but slipped back to 52 count. However the doctor says he is happy with that, that if I stabilise around 50 he will recommend reducing the dose of the drug from the maximum, 75mg to 50mg. I am very keen for this because when I started on it I was on 50 mg and the side effects had mostly been mild initially (bumpy rash, visual problems) but these passed and then when the count had stalled I had to take 75mg and now my most worrying problem is hair loss. The doctor thinks this is related to the higher dose of the drug.

I am coping ok but depresssed to be told it will most likely be a condition I will always have and just have to try and manage. I certainly don’t like the prospect of being on this drug long term.

I too would be interested to hear others’ experiences. Good luck to you RamblinAstateMan. I hope this is useful information,

I'm sorry to hear about your hair loss, and thank you for sharing your experience with me! It's been positive to read about others experiences (amazing the wide range of history everyone has had with ITP despite it being a rare affliction).

I am beginning to believe I too will have this for the remainder of my life (I also have Thalassemia to boot!). I just hope I can make it long enough to see my daughter grow up to be a rambunctious, smart alleck woman like her mother and I!

Hi I’m also in UK I gave been diagnosed with ITP SINCE 2016 my count averages 42 but does go up and down a bit my consultant says he won’t put me in anything unless it drops to under 30 luckily it only dropped to 29 once but went up a couple of days later so not had any medication yet. I have been taking the following for a couple of years a multivitamin, Papaya extract, a pre and pro biotic, vitamin B12 and 50ug of vitamin D3 a day all of which I heard was good to take for ITP. People that have had their spleens removed in general wish they hadn’t so you need to really do your homework before you consider that. Good luck

Long enough? ITPers has the same life expectancy than the rest of the population. My theory is that probably it will be higher due to the fact that we take care of ourselves so much after been diagnosed

I have done end plate, but then stopped working, had my spleen removed, numbers went crazy high, leveled out then crashed. They put me on rituximab for 4 weeks, went from 11000 to 12000 to 1. I take steroids, seem to just go from one drug to next see what will work. He said he could increase n plate injections. But right now checking platelets twice a week. Just had to have transfusion last week of what the call a 6 pack of platelets. Good luck to you. Splenectomy 50/50 chance to work. My blood dr said my liver now is removing platelets.

Hi

I had 7 treatments over 3 years, including a splenectomy, before finding one that worked for me. My consultant told me straight away that there was not any sure fire cure and it would be a matter of trial and error. Each treatment had different side effects including hair loss and one that gave me meningitis and a retinal bleed.

I think it is a matter of keeping on going until you find one that suits you. I got used to being told that the treatment had not worked. If you lower your expectations for finding a treatment that works, you will be less upset when it doesn't.

However, there is light at the end of the tunnel, just keep going and don't give up. There are lots of us that have been through what you are going through and will be here to support you. It is very scary and you can feel very alone even if you are surrounded by people that care.

Take care.

Nicky

The following link is to the most recent International Consensus on the treatment of ITP which is basically the general guide for what to treat ITP with and when.

Suffice it to say that every case is different because we are all different, we all have different medical histories and issues but the International Consensus document is a general guide for health professionals treating ITP patients...

Here is the link to it ...

itpsupport.org.uk/images/do...

A further useful link is to a list of all the current ITP treatments ....

itpsupport.org.uk/index.php...

Hope this all helps.

If you wish to have a look at my ITP blog, please do. It covers much of my 14 years of ITP ..

myownpurplepatch.simplesite...

I am also in UK. After trying steroids and Ivig infusion when my platelets went up and then started to fall, I was given an infusion of Rituximab (your R perhaps?). Again a rise followed by a fall. Then on to Romiplostim (another R) in the form of NPlate injections. I was on this treatment for about three years with a steady count of 40-60. Then in 2017 I started on Eltrombopag tablets (25 mg daily) and my count rapidly rose (at one point it reached over 400!). It has now stabilised at around 100-125 which both myself and my haematologist are happy with. However I do realise that as I live in UK all this treatment is basically free at point of use. I hope you find something that works for you and wish you well.

Yes unfortunately in good ole ‘Murica, after insurance i’m still owing $300-$400 a pop for platelet and IVG transfusion. But some of the medication you said you’ve taken is that has helped is interesting; i’ll have to bring it up with my hematologist next time I see him.

Hi my treatment has consisted of steroids to start. Then went to blood transfusions numerous of those. I was on promacta for about a year. With no positive outcome really. IVIG I had four of those. I also had a 4 rounds of the chemo drug rituxan. That wasn't a good experience at all. Now I am on doptelet. The side effects I have are almost to much. However I can now make it to a hospital if something happens instead of bleeding out. My count stays between 35,000 & 50,000 now. It does drop though and I can only take 10 milligrams a week. Anymore then that and it causes me to much pain to where I can't get around at all makes me very ill. The doptelet is very expressive here in the US. For 9 pills it's right around $18,000. The good thing is I can only take a half a pill a week. So the 9 lasts for 2 months.

Hello. I was diagnosed with ITP in 2009. All meds seem to apply to us all, there is no cure available so it is all down to working with your haematologist to stay in the safe zone.

I started with a high dose of Prednisolone, I still take a 'maintenance dose ' of 5mg to help with platelet count. Next came Azathioprine, really had bad side effects with that. Next came Rituximab which didn't work for me, Nplate worked for quite a few months and then just stopped having any effect. It must be 3 years ago I started taking Eltrombopag. So far, so good, platelet count is just over the 100 mark which for me is really good. Side effects? Everything has side effects, sometimes I have blamed the medication unfairly because it could be a reaction with some other medication. The only time I have had IVIG was to boost platelets before some serious dental work. I didn't want to undergo spleen removal, it was the belief that the spleen was where platelets died, but belief may have changed now. I may have forgotten some of the treatments, I do, among other problems have a 'brain fog' but I am taking other tablets so could be anything that causes it. I wish you and our fellow sufferers luck that you will soon be stable and remember that new treatments are coming along all the time.

Kevin

Skegness

I am also in the UK and I must admit I have had an easy time with ITP compared to many others. I was diagnosed with a count of 2 just in time for my 60 birthday 6 years ago now. Even at my lowest point with ITP I have always felt physically well. Steroids did not work for me, spleen removal was discussed but even though I did not know much about it at the time I rejected that option, thought it was a bit drastic cutting bits out of me when I felt so well. The hospital put me on Eltrombopag and I have never looked back. Was on 50mg for first 4 1/2 years and my count slowly moved up to just over 150, am now on 25mg and my count was 96 at my last test.

I try and have a healthy diet, don’t drink much alcohol and keep very physically active. I don’t think of myself having an illness, I have a condition which fortunately for me is being well managed by Eltrombopag. Long may it continue and good luck to everyone.

It is nearly impossible to meet someone that has ITP face to face. We are very much a minority and that makes it much harder to deal with.

Fellow sufferers all have a similar story to tell, steroids are always the first treatment and have been for many years. What happens afterwards is when treatments change. Eltrombopag or Revolade has been the only treatment to work for me, others may say not and unfortunately that is the problem with ITP. I dont believe there is anything that works for all.

I wouldn't have spleen removed and haven't read a post that promotes it. I refused on more than one occasion, there are no guarantees it will work so why!

IVIG by its very nature is a temporary measure, we have an illness that kills off platelets, inject some more to boost the count and then our bodies just kill them off. Vital for operations or accidents but thats it.

If the R is a four weeks course of treatment then I have had it. Treatment targets your T cells. I had a slight reaction on the first treatment but no other problems apart from it not working on me.

You do right in leaving off alcohol and trying to eat well, I don't really believe in supplements but each to their own

I am not a medical professional and all I have written is my point of view. I wish you all the best.

Oct 2019 zero platelets. prednisone, platelet transfusions, IVig transfusions . Then I get 4 transfusions of Rutixan. Platelets stay up for 2-3 years and then I go through the same routine.

I can't tell you doses, but I started with dexamethasone for a few days, took a few days off went from 110k to 29k after stopping, started prednisone, did that for about 3 months and took rituximab while tapering off prednisone. At the end I was around 120k. Got a blood test a month or two later and I'm at 89k.

2 years ago I was diagnosed with ITP in a routine checkup with a count of 9K. No bleedings and feeling well. Prednisone and rounds of Dexamethasone put my platelets over 150 but as it was discontinued my count fell to 39K.

Tried Dapsone and it put my platelets closer to 50K but the secondary effects was too important for me.

Then Promacta/Revolade came and after a while it kicked up the count to reach 96K, however most of the time it fluctuates from 50 to 60. Unfortunately after 9 months the count dropped to 25K steady for a month in 3 bloodtest. I am in the phase of trying to figure out why. Too much aspartame lately? Cos I stopped exercising? Cos o stopped Sauna? Am going through a viral process? Changing diets, bought papaya leave extract, resuming exercises and soon also sauna and I will see.

The positive note is the lack of bleeding or petechiaes, also the high MVP (over 13.5), that means I have actually more platetelers than what the machine is counting.

I am worried because I am hypochondriac but when I rationalise it, I see that there is little consequences in my daily life. Remember external signs are more important than the count.

Still didn't try Rituximab. I leave it as an option if I really go bad, but not yet.

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