Worried

[Bm939]

I'm new to this ITP thing. New to being sick at all actually. I'm finding it very hard not being in control of my body. My platelets dropped to 6 three weeks ago. I've been on prednisone ever since. My platelets are slowly increasing. The highest I've had is 37. I'm worried I'm not responding to prednisone. And I really do not like taking them. Just worried.

[Tenk]

Hi,

It sounds like you are responding to something - improving from 6 to 36 was similar to my own rather slow but steady improvements when I was first diagnosed in April.

It's ok to feel worried - this is new and it is a disorder that reminds you that you are not in control of your body.

my haematologist wasn't convinced that my 9 weeks of steroids helped either, I only got up to mid 60s and mostly the rises came after a major taper off them.

I went through a period of looking for lots of alternative / complementary therapies too - I adjusted my diet, my lifestyle, added reflexology, breathing exercises, vitamins and aloe Vera juice, cold showers, mindfulness, daytime naps!

In the end I went up to 156 without really knowing what it was that helped. For 2.5 months I was flying high then two weeks ago I noticed the fatigue first return and then the petechiae. I'm back in the teens now and still going down I think. We don't know why.

It is a disorder of no order! There is no rhyme or reason.

The best thing I have done is work to come to terms with it in my life, rather than try to fight it. But I'm not there yet. I cried tears of rage and fear when I found out on Monday that my counts were dropping below 20 again and still going down. The next day I woke and did these things (from another post of mine earlier this week...):

I concentrated on:

1. Things I can still do (e.g. I'm still choosing to cycle in London to work)

2. Noticing when my mind wanders into anxiety mode (wanting to check whether the rash has spread, thinning ahead to when my net blood test is). Calmly noticing that I am getting anxious and 'inviting' my thoughts to let go. Sounds very hippy, but it is something I find works for me.

3. Allowing myself to check for symptoms only once a day - in morning after shower.

4. Admitting if there are one or two things that would go very wrong if I couldn't attend (at the last minute at work) etc... (I give a lot of speeches and have some coming up) and putting plan b in place for the most important ones (an understudy!!).

I also had a very frank conversation with my haematologist last night, staying that I don't want to go back on steroids and want to have a conversation with her before we choose my next meds rather than rushing in (if we have time).

I would never have been able to have that informed conversation (after reading up so much on the ITP association website - join them!) or have ordered my thinking into a more positive (although it is still a struggle to stay positive) five months ago when I was first diagnosed.

I really feel for you now as my last 36 hours were quite emotional, reminding me of the initial diagnosis.

So, go easy on yourself. And if you find yourself fearful or anxious, that's OK. You will come to know this disorder and it's place in your life soon. If you want to ask questions of your doctor - ask and keep asking. Meantime, take an hour at a time. Focus on what you can do. Spend as much of that hour as you can thinking of other things. Then reach for the next hour knowing you lived that last one as best as you could.

Tenk

[Bm939 in reply to Tenk]

Thank you. It just feels so much better knowing that there are other people dealing with this. I go through moments of panic but i am just focusing on living as normally as I can.

[Tenk in reply to Bm939]

I agree. It is so helpful to know there are people out there you can ask and talk to about this and they have been living it too.

[Fionn123]

Hi, I think it's normal to be worried about ITP especially when you're first diagnosed as it's such an unknown. I've had it for five years and had never been sick before that. I was put on prednisone when my platelet count dropped to 4 - it went up to 93 but didn't stay there. I thought the side-effects of the steroids were worse than the condition itself so I haven't been on meds since 2013. My Haemotologist will only treat if my count goes below 20 - it's been slowly dropping and in May had gone down to 22 - I panicked and thought I needed to take better care of myself so started the blood type diet which for me means cutting out wheat and I feel much better for it and my count has gone back up to 43. You can't control ITP but you also can't take your body for granted either - it forces you to take care of yourself and put your needs first - you may need to pace yourself - fatigue can be a big issue with it but I've now learned how much I can and can't do and to build in regular rest days.

[wjoyful]

I've been on prednesone for 3 months now and the highest I've been on it is 60 but when I started to come off it I fell to 28 and she put me back on again. Now my np tells me they are taking me off and see how low it goes. I take a vit cocktail that seems to make me feel better so when I get taken off I'll check out a naturalpath.

You will get used to your ITP experience. Good luck and I hope your ride is a short one

[Bm939 in reply to wjoyful]

What kind of vitamin cocktail do you take?

[Olivia2812]

Know how you feel, platelets were 9 started predisolone but they didn't move at all, so whilst in hospital covered in large bruises, they gave me the immune globulin, but again awful response, nothing ! So now having a drug also used to treat leukaemia. .after one session platelets moved up to 27 ! So thrilled it's a good start. So even when I was getting totally despondent, it's worth hanging in there. Can't wait till Wednesday and see what they are at after two treatments. 🤞X

[Bm939 in reply to Olivia2812]

Good luck! This is quite the journey it's all very hard to understand. It just seems that everyone responds differently.

[Zaff]

It was a huge shock to me too when I was diagnosed, one day OK and a very active person, the next gums bleeding and covered with huge bruises, my platelets had gone down to 4! The Predisalone worked for me but I had dreadful side effects and withdrawal symptoms but I had a cold a few months later and suddenly the symptoms returned, Prednisalone again, even worse side effects then I was rushed into hospital with internal bleeding and platelets down to 2 the consultant suggested Ritubimax which was unpleasant while the course lasted but at last my platelets went up slowly and have stayed above 140 for the last 18 months, I still have regular blood tests and Im very conscious of keeping an eye out for any symptoms returning.

the drawback of having a very much reduced immune system meant I then spent 9 months suffering from just about every virus and infection imaginable, throat, chest, urine etc etc. I was very down at this time, lived on antibiotics and seemed to spend my life at my GPs or hospital seeing various consultants and having tests and scans. I have now come to terms that I will not 'get better' but rather the condition and the side effects of drugs and/or a much reduced immune system is with me for life and it has to be managed rather than be cured and to make the most of the times I feel well and be kind to myself when I dont.

I hope this doesnt sound too gloomy but acceptance seems a very important part of managing the condition after the intial shock

[PKScott]

After reading your post, I am not sure where to begin. So I will begin here. This is what I have learned and I hope it will help you. I wrote this for me about my ITP based on information I pieced (Manipulated their writings) together from what others had shared.

"ITP: How Does it feel?

-How does it feel to be told that you will likely live for the rest of your years with a rare, mostly unpredictable and unknown autoimmune disorder that will affect your blood’s ability to clot and heal and your immune system’s basic ability to fight off infection?

-How does it feel to be told that there is little to no information about your disorder, that every case is different and unique, and will most likely eventually couple with a number of other autoimmune disorders as you age?

- How does it feel to be told that you need to change, stop, or modify everything in your current life because your greatest risk is having a brain hemorrhage?

- If that's not enough, also to be told that stress along with exposure to germs is going to be number factor in maintaining stable health.

– That there is no long term plan for the treatment of your disorder and all you can do is suppress your immune system and manage the side effects?

-As different treatments become available, we can weigh the risk factors & side effects. All of this just to discuss the possible changes in order to move forward with a new maintenance health plan." -PK SCOTT & OTHERS

I have Chronic Primary ITP and I am not new to this. I have been to a 0 count and back to my big 41k as of last friday. I live with a walk around count averaging 40K and below. As long as I am asymptomatic I will not take any treatments. This is my choice. I will discuss treatment options if I am consistently below 20K. I found myself a walking science experiment for the first 7 years or so and this will not work for my life. You do not have controI over a lot of things and that will drive you mad. It drove me batty. So to help with this... I would urge you to research and learn as much as you can about ITP, treatments, and the such. Reason being, the more you know the better questions you will ask your doctor and the more empowered you will feel. This is what I learned.

I do not like Prednisone at all. I choose not to take it because of the negative effects on my mind & body. There are other choices for ITP out there and I have tried most all of them. I had my spleen removed at the age of 30. I'm 43 now. It didn't work.

What did work for me was Prednisone, low dose antibiotics, N-Plate, &/ IVIG. None however are long term for me. The PDSA is an organization that is all about ITP and is a great resource. I found them about 10 years ago.

I have learned that everyone's journey is very different. I have learned the more you know the more in control you will feel. I have learned that ITP is a rollercoaster ride. I hope my reply has help you in the smallest way. I am wishing you much love, light and laughter along your journey. Namaste.

[Bm939]

Well a little update. After four weeks on prednisone my platelets went to 63. Which feels good. I saw my hemotoligist today and we are going to decrease the prednisone to 50mg. He does however want me to have a colonoscopy because there was blood in a stool sample. Has anyone else had this issue?

[Bm939]

Well a little update. After four weeks on prednisone my platelets went to 63. Which feels good. I saw my hemotoligist today and we are going to decrease the prednisone to 50mg. He does however want me to have a colonoscopy because there was blood in a stool sample. Has anyone else had this issue?