Anxiety and itp

[Sarah-Ambam]

Hi all, I've recently had in the last 6 months my itp back. Had spleen Out 24 years ago but itp is back. It fluctuates between 30 and 60. Cannot get treatment unless it goes below 30 and steroids don't work. Can anyone give me any tips on coping with anxiety as they tell me to keep an eye on myself with bruising etc and if I suspect it's low then get to hospital. Hate living like this. Every time I have a bad headache I worry about brain bleeds. I know I'm lucky as there are far more people worse off but any tips would be appreciated.

[Ltinny]

Greetings Sarah, you are not alone. I could have written your post, the same thing happened to me about 6 months ago. I was having panic attacks out of nowhere, because I would worry that my platelets were too low, or wonder if they had dropped. It got to the point where it was on my mind constantly throughout the day.

My doctor put me on Paxil. We started at 20 mg and worked up to 50. I feel so much better emotionally. I was hesitant to take Paxil because I read about all the side effects, but honestly, I have not been bothered with side effects. Just a little bit of drowsiness for the 1st month, but other than that, it has helped me tremendously. After being on Paxil for 6 months, my platelet count actually increased from 38 to 41. I do not know if anxiety and stress affects platelets, but I do know I feel 85% better.

Hope this post helps you. Stay well my friend

[Sarah-Ambam in reply to Ltinny]

Thank you so much I'll look into that.

[Hidden]

I would say unless you are overly symptomatic ie gum and nose bleeds or wet patechiae then settle with numbers as they are. These may be your new normal. Its best to focus on the symptoms not the numbers. Everybody's platelets function differently you may not have many but they may be large and mature and do a better job. Stress will not help your counts and it really is best to try and get on with your life. The incidents of brain bleeds from ITP are extremely rare and are usually form an underlying condition anyway If you can avoid treatment all the better they all l have side effects one way or the other. Try to do some relaxation stuff just eat well and do everything you would have to maintain a healthy life. It cannot be your focus try and get on with living ( and yes I know it sounds like its easy for me to say) but after living with it for over 18 years and having a child with it to it really is best to be aware but not focus on it. Be find to your body rest when you need to . Anti depressants may help ( if you feel things are getting you down so badly)but make sure they dont contradict. Take care and good luck

[sailor]

MUMOFWELL has the right answer. Far better than taking any drugs. I have lived a normal life for 20 years with a count around 10 and only have medication when I need surgery (like a recent heart bypass), but avoid dangerous pastimes. So get on with living and stop worrying especially about brain bleeds. They are rare.

[Sarah-Ambam in reply to sailor]

Thank you so much for your response it has made me feel loads better. The lowest I'm aware they have gone are 7 but I'm told that many people who have itp have brilliantly large and sticky platelets. Thanks again, stay well my friend.

[NickyD]

It is too easy to look at the negatives with ITP instead of the positives. The roller coaster of counts being up one minute and down the next is not good. A count of between 30 and 60 is actually a good count. Hospital is always there if you need to go in with a bleed and as the others say, a brain bleed is very unusual. Take care. Nicky

[Sarah-Ambam in reply to NickyD]

Thanks for the reassurance. You are absolutely right.

[Padram]

Hi Sarah, you have got wonderful replies. I keep telling myself " don't take life seriously. Nobody gets out alive" . My counts too keep going on a roller coaster. I also tend to bleed at 300000. So relax if you actually have no bleeding . Each person's experience is different. So only you can help yourself. Read /see humorous books/ movies. This is what I did when I was on 60 mg steroid. All the best.