Any advice?

[Jordan1991]

I'm a 24 year old male who has been diagnosed with ITP about 2\3 weeks ago. My platelets were 2 when I was taken to hospital but have since rose to 28. Is there any advice out there for people living with this condition. Currently taking 95mg if a steroid I don't remember the name of. Going for a bone marrow examination next Friday as well. Any advice for the examination? I heard it can be quite painful.

[Robert1959]

The steroid that you are on is probably Prednisone which is the first treatment normally given. If you are like most of us here you will probably experience sleeplessness, brain fog, increased appetite and few other side-effects that will have you looking forward to the day that you are weened off it. The other interesting thing to know is that it often gives an initial increase to your platelet count but many have a relapse a few weeks later and then have to start on one of the other treatments. In my case I was given 100mg and my count went 9, 20, 60 in the first 3 days, 160 the next week and then back to 13 the week after - do not be discouraged if this also happens to you.

I have had 2 bone marrow biopsy's and from my experience there was no pain at all. A local anesthetic is given and the sample was taken from my hip bone - all I felt was a feeling of pressure as the needle was inserted but certainly no pain.

Don't be surprised if your treatment goes on for many months as they try to find a medication that works for you. My specialist said at the beginning that it would take 12 months and in the end she was right. At the time I thought that I was never going to get better as I was resistant to many treatments and my counts remained very low (0-5) with all the worst symptoms for months on end but now I know that your health can be restored. When I was ill I did not know of this website and so unfortunately just battled on blindly - you will gain so much insight from the others here that will give you comfort through your illness so keep asking questions and we will offer advice from our experiences to help you.

Robert

[Eileen-Emily in reply to Robert1959]

I think Robert has summed matters up quite succinctly. Just think positively we really are the lucky ones we have been diagnosed now to find a treatment that permits us to lead a fairly normal life. Good luck prednisolone treatment does not last forever. The bone marrow test they should have provided me with a gag I babbled being so nervous I think I gave the Doctor and Nurse my life history! I worried unnecessarily so don't you worry and remember to take a gag with you!

[mikelly321 in reply to Robert1959]

Hi Robert,

What treatment protocol after a year finally worked for you?

Thanks!

My wife did the Rituxin treatment in March which many here have found helpful. She stabilized temporarily at around 55, but her count has dropping steadily recently to 33.

[Robert1959 in reply to mikelly321]

It was only NPlate (Romiplostim) that worked for me. In the first 4 months after diagnosis (9 Feb 2014) I was given Prednisone, IVIG, Dapsone, Cyclosporine, Tranexamic Acid, Rituximab and Dexamethasone and none of them worked with a personal best count of 0.

I then was given NPlate and after 5 weeks I finally reacted and went to 33. For the next 5 months I was given varying doses at various intervals (sometimes 3 weeks between injections) until 1 week (5 Nov 2014) I just suddenly stopped destroying platelets and stabilised at 200+ where I still am today (some 22 months ago now) without any treatments at all.

I know that not everyone has had success on NPlate but for me it was a wonder drug and a life saver with very few side-effects (mild headache only) compared to the other treatments.

Even though I was deemed severe refractory, I consider myself so fortunate that my ITP only lasted 9 months which put me in the 'Persistent' category rather the the long term 'Chronic' category that unfortunately so many here have. It was certainly an experience that I don't wish to go through again.

Robert

[mikelly321 in reply to Robert1959]

thanks, Robert! she is going to try NPlate next.

[Jordan1991]

Thanks guys for the advice!! Feeling a lot better about the bone marrow examination now! Was kinda neavous! The prednisone isn't working that great which is why there doing the test just to make sure. It's been a complete nightmare with work! Have already had 3 weeks off as I've not hit a safe level of platelets yet, and the doctors signed me off for another 6 weeks! Just wanna get back to some kind of Normality. Are there going to be times when I'm finally back at work that my platelets are to low to go in or? What's a safe enough level do you reckon?

[SoporRose]

Robert's response was indeed, quite helpful, but I will tell you that I did find the bone marrow biopsy quite painful. I had it done five years ago and the pain has never entirely gone away. I don't know if the fact that I am overweight contributed to the persistence of the pain; it is also true that I tend to be very sensitive to medications and procedures.

I had an awful time on Prednisone as well. I don't remember most of the months that I was on it, but the chorus at the haematologist's office has been "We don't ever want to put you on Prednisone again." I have a feeling that I was not very pleasant to be around and am grateful that no one has offered any details of my behaviour.

The good news is that, although I relapsed after a year, I then went through a series of Rituxan infusions. That was over three years ago and my counts are still around 190k. Hang in there and let us know how you are doing.

Ruth

[Pollyangel]

Hi Jordan

Going back to work will depend what kind of work you do and, also how you feel in yourself.

I am office based and was told I was at a safe level at 40... but at 40 I was still having days of chronic fatigue that meant it wasn't possible. I function fine when my count is 60 or over but... everyone seems to have a different level they can work with.

My first episode (last year) took about 3 months to sort out. Steriods didn't work with me and I ended up on a tablet called Eltrombopag. My ITP re-occurred January of this year... and I'm just starting work next week... so that's been 9 months.

Don't dispair... you'll get great advice and support from this site... from people who have experienced what you are going through.

If ITP is going to be with you for a while.. you learn to adjust.. it's a pain and an inconvenience. Hopefully you'll be sorted in jig time xx

[holcotts in reply to Pollyangel]

Hello Pollyangel, untested in how you are finding the eltrobopag? Does it make you feel rotten? Are your platelets stable? I am wondering about trying it. Thanks

[Pollyangel in reply to holcotts]

Hi holcotts

My Consultant first prescribed Eltrombopag last year during my first episode of ITP. I didn't react well to either Steroid or Immune System Suppressants - that was why I was given Eltrombopag. First episode, my count increased significantly over a short period of time and all, I was drug free after 4 months.

This is my second episode of ITP and other than an initial course of steroids and an infusion my treatment over the last 9 months has been Eltrombopag.

I've been on 50mg daily and the side effects that I have had have been manageable.

The main side effect I suffer from is excess sweating and itchy skin. My excess sweating is around my head and neck area - I could probably have shares in Kleenex due to the amount of paper hankies I go through and, an antihistamine takes the edge of the itch.

My vision can sometimes be a bit on the blurry at times however, this doesn't last too long and doesn't cause me any problems.

My hair is a bit poorly but I don't know if that is solely down to Eltrombopag or as result of being on steroids last year and the ITP itself.

My count has been slower to react using only Eltrombopag however, that said, my count sat at a reasonable 40ish mark for a number of months. Just recently my count has started to increase so starting to see a little improvement. I think I've taken a little longer in recovery than my Consultant expected - but as you know yourself, platelet count is not an exact science.

Hope this is of some help but, if you have any other questions, drop me note

Pauline

[holcotts in reply to Pollyangel]

thank you so much for this Pauline, really helpful xxx

[Ironspur14]

Hi, my view is its a life changer! But not as bad as all seems right now I'm sure. Right now you are probably at the worst point - new to it, under the steroids, and confused as to what will happen in future. But don't fear, the specialist know their stuff and will treat and advise as appropriate.

As for living with it, each person is different. I get tired, when count is low, but when normal and not drugged up I feel fine and not much changes from before. Apart from I gave up football (to much risk).

Overall, I would say you will find your own way with dealing with it, just try be healthy and remove any unnecessary risk towards your health if you can. It's a long road your on now, there will lots of ups and downs, but just try to be positive.

[Jordan1991]

Thanks to everyone for the useful insight and support!! Just another quick question. Am I right in assuming that leukaemia has been ruled out!? My mother is such a worrier and keeps mentioning it which is obviously make me a tad nervous. I'm sure it would of been one of the first things ruled out when I was admitted to hospital. Thanks guys.

[SoporRose in reply to Jordan1991]

My understanding is that part of the reason to do the biopsy is to (one hopes) rule out leukemia or other potential causes. So I'm afraid you can't promise your mother anything yet. I know how you feel. Part of the burden of a chronic disease is the awareness that it affects the people around you and can be hard on them too.

[LannaBarnett]

I'm 21 and was diagnosed two years ago. They started me on the steroids. 100mg prednisone a day! Watch it you'll gain weight like crazy! I hated the steroids so much. I had a bone marrow biopsy done. Honestly they sedated me and it wasn't awful. Luckily it wasn't my marrow. So I moved onto have rituxamab (chemotherapy). I started that in Janurary 2016. I've had no problems with my platelets since the chemo. My lowest platelet count ever was 0. Today they are 122,000. I wish you the best. It's a very challenging road that makes you feel hopeless and defeated at times. Hang tight you'll figure out something that works for you. Good luck buddy.

[Mrsb04]

ebmt.org/Contents/Resources...

This might be of use.

[jwk4]

I agree Jordan, I haven't had a bone marrow biopsy done but my head keeps going to leukemia. I'm taking solice from the fact that all other blood levels are normal.