How do you not get anxious and stressed with ITP

So for all you ITPers out there who have had this problem for years how do you do it!? I am newly diagnosed been down to a count of 12. Just finished prednisone and 2 weeks ago a count of 128. Iv recently now had a few small bruises and petechia but not a lot tiny tiny. A tiny blood spot on my lip. You immediately think my blood has gone 'south' you get anxious and stressed. I have a blood test on Tuesday. I know so many people say dont let it control you but how do you stop that feeling of not again!!! And what next after steroids!!! Does this get better to cope with time?

I think it depends on the individual. ITP has never particularly bothered me. But then I've always been the sort of person that feels that if something is not right with my life and I can change it, I will, and if I can't, then there's no point in worrying about it.

What I did with ITP was to find out all about it so that I could make my own decisions about treatments and not leave it to the doctor. For me, it's a matter of not being a passive passenger but taking charge. I also keep everything on a spreadsheet so I know all my counts and treatments from the start. That makes me feel in control too.

What I would do in your present situation is make a decision whether to get a count or wait for the next appointment, and then once the decision is made, relax because you can't do anything more. After steroids I tried mycophenolate (CellCept).

Thanks Ann. I do read a lot about it and keep all counts documented. My mom has ITP aswell. Somehow i have to try to not worry so much. So envy people that just are bon worriers i know it doesnt help and i cant change a count. I guess its all new to me. My mom does well on it not worrying her counts go from 76 to 23 but she has no symptoms at all. Just occasional nose bleed even thats not a bad bleed. I tried excercise water aerobics but worried abput bruising with excessive jumping around. Next step is yoga and reiki!

Fiona,
I can relate because I am a worrying type of person. I can worry about just about anything, but ITP can send me over the edge at times, mainly when I am on prednisone. Even now when I am in remission i can get very anxious at doctors appts. When on pred my anxiety level really amps up. I like a book called The 10 Best Anxiety Management techniques and I use the ones that help me......mainly avoid caffeine and other stimulants, deep breathing, exercise, and thought redirection. I try to focus on what I can control like eating healthy food, getting enough rest and sleep, and exercise like walking and stop focusing on what I cant control like my platelets.

Thanks dru I guess its human nature to want to control every element of our lives and altho we can eat healthily etc we cant control those platelets. Going to the hospital every two weeks is like a real struggle for me. I drink lots of camomile tea! Funny thing was when i was on Prednisone i was not anxious as i knew my platelets responded so well. Kind of safety net! I am hoping yoga and breathing classes will help.

Fiona:

In my case, I already knew what ITP was because my sister had it about 20 years before I did. After I was diagnosed, I began to read and joined this forum. It was new then (1998) and there were some people who really helped me out emotionally. I learned from them early on that this was not a death sentence, and they were all living normal lives. I knew I could do it too. Reading about people who did not respond to treatments, when I did, also helped. What the heck did I have to worry about? My counts were fine and at a safe level. I'd been below 5 a few times and survived, so I knew if I dropped again, no biggie, I'd treat again. I wasn't happy about it, but life went on.

Then I started reading the stories of people who had blood clots along with low counts, and had to juggle blood thinners. Again I thought, what the heck do I have to complain about? I stopped worrying about counts dropping all the time and did not even look at my body any more to see if I had bruises or petechiae. I wasn't going to let it rule me. Like Ann, I also realized that once I gained control by being a bigger part of treatment decisions, treating didn't bother me nearly as much. I decided when, what, how much. My Hemo went along with me.

Then I started reading stories of people who also juggled Hemolytic Anemia, Lupus or any other autoimmune disorder in addition to ITP and I thanked my lucky stars that I wasn't dealing with that too. It sure put things into perspective and made ITP seem easy.

I would say, yes, it does get easier over time and in time, you stop thinking about it so much. You ride the highs and get through the lows and that's about it. Knowledge is power, and perspective sure changes the spin on things.

Thanks Sandi, you always come up with such good replies.....
Somehow right now reading replies and listening to others on here does help.
I know I am newly diagnosed, there is a LOT to deal with right now as to how I can try and push myself to live my life right now. Lots of tears but trying really hard to not let this overwhelm me.
Was so glad when prednisone worked for me and I should be grateful that it did, so I guess now that my count has dropped since I stopped it the secondary treatments have to be decided upon, just so much to read about treatments and there are always such horror stories with side-effects especially those causing cancer etc.... So lets see. What I find really fascinating is that with ITP everyone is SO different and sometimes peoples counts can be so low and they have no symptoms and others can be higher and they can have symptoms, I remember at 54 I had 2 bruises which I dont remember anything happening but that was all. At 12 I had nothing.
Now 2 weeks ago I was 128 but this weekend noticed Petechia (however you spell it) and 1 small bruise so you suddenly think, what count must I be then.....

Going to get my count done tomorrow so lets see.

Relax and figure out what works for you. Time and knowledge make it easier.
12k is about where I stay with treatment. It isn't as scary as one might think. Symptoms are more important than the number.

What's next? immune-suppressants like Cellcept and Cyclosporine are options. Promacta and Nplate are the new kids on the block, both increase platelet production (both are really expensive). Then there are infusions like Rituxan and such. Lots of proven treatments out there. You sort of have to do what the shampoo bottle says; 'rinse and repeat as necessary'.
Everyone is different and responds to treatment differently. And everyone's real-life workable platelet level is different. You have to find out where your comfort zone is, what keeps you there, and how to relax with that...it's a balancing act.
Most importantly, remember that it is ITP.
My hematologist is based at The James Cancer Hospital, so when I sit in the waiting room I am smacked in the head with the reminder that my ITP is....well....just ITP. That doesn't diminish the disorder, but it does put things into perspective for me.

.

Agree with others' suggestions.
I have found keeping busy with work, family (including 8 little grandies) & community groups takes my mind off ITP. My family remind me to have a checkup regularly. Every day here is like being on a roller-coaster & I am grateful I can do what I choose to do. I am also surrounded by people with much worse health issues, both mentally & physically, & appreciate how well I am, despite ITP.

Go easy on the chamomile tea - related to feverfew which is on the list of substances that interfere with platelet function.

mj

You also have to remember that people who don't have ITP bruise also. Small, yellow bruises are usually nothing to worry about. If they are large and deep purple or black, that is more concerning. A few small bruises do not worry me in the least. I usually have them all the time anyway due to medications and my dogs jumping on me.

I have had bruises and petechiae at higher counts, so that taught me not to panic when I see it. I can't tell you how many times people freak out, run in for counts positive that they will be low, and find out things are just fine. Once it happens to you a few times, you'll relax a bit too.

Thanks Sandi, lets hope that is the case tomorrow!
Hopefully I will get used to this condition soon, with the help of others, my mom and perhaps some relaxation techniques. I will learn to know 'my' signs.

I was diagnosed in dec of 2012. I will say the first year of having it is an emotional roller coaster. My best advice was to research all treatments and have a doctor that understands itp. My doctor did not know a lot about itp and he was always in panic mode which made me overly anxious and stressed. You will get to know your body and when your counts are low. I was at 40 three weeks ago and had several bruises and was exhausted, so counts and symptoms vary for different people. Also being on here and talking to people with itp has highly benefited me. You realize that most are living very " normal" lives.

The first doctor that talked to me about ITP asked me if I wanted to go to the hospital for my last night or die at home. So I had a bit of a stressful start with ITP too.

You'll meet a lot of doctors that have no clue and that are very frightend by our condition. Forget them!!!
Look for a doctor that has other patients with ITP. The hemo I have now is very relaxed. He has a lot of experience and does not freak out if my count goes down. He knows it will go back up. Either by itself or from his treatment.
He once explained to me that the pallet count in your blood can be very low and you might see bruises and nosebleed and all the rest, but if you have a serious cut and start to bleed the pallets stored in your bones kick in. The bones store about 90% off your pallets.
So even a very low count only becomes serious if it exists for a long time.

The more you know about ITP and the longer you live with it, the less it will worry you.

In the beginning I was sick with worries and constantly looking for sympthoms and thinking about what could be. At the moment, 4 years later, maybe 1% of my thoughts are about ITP.

It remains a pain in the back, but I'm sure you'll find that you can make peace with it and have a wonderful life!

You have a lot of good responses. I was diagnosed in 1989 just shy of when we were scheduled to moved to Tokyo. Moved on 60mg of prednisone and not knowing if I'd even have a hematologist, but I ended up with the most fantastic hematologist there [turned out he knew my US hematologist]. From there we moved to Hong Kong and I knew so much more than that hematologist, didn't really trust her, she'd panic which made me panic. I am so glad I did not ruin this opportunity for my family and say we can't go because I have ITP!

Of course it is stressful - our body has turned against us. In time you learn to live with it and do what you have to / want to do.

I went into a remission of sorts for a number of years, counts ranged from 85k-125k. In 2002 I relapsed after a tetanus booster - and got so stressed I gave myself shingles, that was really dumb! Refused to take prednisone so was given an IV of WinRho and I've been in a "remission" since.

Good luck with your CBC tomorrow!

You are going to do just fine!

Fiona , like you I was recently diagnosed with ITP, and my personality is to be nervous. I'm trying to not let this take over my life. We like to travel, and have already cancelled one trip. I'm determined to make my next trip in 2 weeks. I'm also always looking to see if I have any little spots bruises on me. I think as many of the people here have already said, with time and experience with ITP it becomes easier to handle and live with. I'm currently taking pred. , started at 60 mg 4 weeks ago, platelets raised to 208. My last CBC I was on 20mg and my platelet count was 124. doctor lowered me to 10 mg and I get tested Wednesday.

I also played a head game with myself that was quite effective. When I got a decent count, I firmly told myself that in my mind, it would stay at that number until someone told me differently after the next CBC. I didn't allow the fear of a drop to take over, because if the last count was 55, that was just fine and there was no reason to always believe that the worst would happen. I got rid of the "Chicken Little" mindset that the sky was about to fall at any moment. You can't live like that and it truly wastes days of your life.

I also realized that the fear of low counts was a bit irrational on my part. Since I could get them up pretty quickly with treatment, the only thing I didn't like was having to treat. I actually hated it. But you know what? I am an adult and could suck it up - there are worse things that many people have to go through. Treating was a small blip in life and although not pleasant, I was still able to go about my life. I could walk, I could talk, I was perfectly healthy in every other way. There are choices: you can think of yourself as being sick and frail, or you can think of yourself as a healthy person who happens to have low platelets. It can take time to get to that point. I've seen newly diagnosed people come here and feel totally lost and frantic, and I've seen newly diagnosed people come here and honestly think it's no big deal. Many times, the reactions of their Hemo can make the difference with how people deal with ITP emotionally. There are many variables, but I do know this: everyone calms down eventually.

Many times, the reactions of their Hemo can make the difference with how people deal with ITP emotionally.

I always forget about that Sandi, but you are correct.
When I initially met my hematologist (12+ years ago), he was the most reassuring doc I'd ever run into.
That helped tremendously.
Laughing with your hematologist about wearing a foam-rubber helmet is good medicine!

.

Hi Fiona, it took me about 12 months to relax about the whole ITP thing, a big part is I think that taking prednisone makes you feel pretty bad, I got Itp in 2010 and I agree with what Sandi says about the dr reaction and also educating yourself, I was sent home from hospital with a bucket of prednisone and all the information I got about the prednisone was that I would put on weight easily.... Lol weight was the smallest part, to start with I thought it was the ITP that made me feel so awful but it was the prednisone, it worked a treat but made me a little crazy, cried about the smallest thing, try peeling boiled eggs with the pred jitters, there is a challenge for you

Ha! Milly, I sometimes find peeling eggs a challenge without Prednisone!

Sandi, I never thought I would get to the point that I can now have a giggle about some of the crazy stuff I done on prednisone but it did work for me and I know it doesn't work for everyone. I do take the ITP seriously but I also know that there are so many worse things out there, I also understand that in the beginning this is so hard, your mind thinks crazy thoughts and I never thought that my life would return to normal, I thought all the people on here to be a little crazy that they could just accept this, but now I am one of the crazies

Thanks everyone for such great comments. I know i have to try and relax and get used to this. As one you said after all its only ITP. Still very scarey. Last night was not great, i know i have my blood count today, but as the signs on my body show i know i have dropped. I was 128 two weeks ago and yesterday and last night i got a lot of red dots, and even in my mouth and a few small bruises. So i know it has to be a drop. I live by myself so in the middle of the night you see all these signs you do panic. You think this must be bleeding under the skin so whats it doing internally. Its scarey. But as you all say you get to know the signs and sometimes small bruising is not a low low count.
Well lets see what the next step is today and what they say. Hold fingers and toes, and thank you everyone out there for your comments!

I have to say it does sound as if your count has dropped. You now have to decide whether you want to go back up on a high dose of steroids which the doctor may suggest, or if you want to try something else. Be sure about what you want and let the doctor know.

The same happened to me. I was off the steroids for six weeks and then woke one day with petechiae everywhere and a count of 1. I chose to try mycophenolate although I did do some low dose prednisolone while waiting for the mycophenolate to take effect.

Hi Ann so I guess I have the choice of going back on steroids or maybe asking for a lower dosage I was on 90mg previously to start. Hopefully as the steroids made my platelets increase quickly it will work again. So worth asking today. I am sure they have their procedure they follow. I am sure I am not their only ITP patient. what a roller coaster ride this is. My consultant said he was hoping I would be the person that responds to steroids and my immune system rectified itself. Don't think the case!

So just as I thought i went for my blood test since been off steroids for a month. Was worried as I had the rash. So bloods went from 128 to 2!! How i have no idea. So they said go home and come back tomorrow for platelets. I was so scared to go home that i stayed in hospital. That night they started me again on 90mg Prednisolone as i had before. No platelets given. So they went from 2 to 5 and yesterday went back to 2. I know its been only 3 dosages but i thought like last time it would shoot up. So obviously my anxiety levels are through the roof. Lots of tears and its been awful. They want to wait and watch before Platelets are given. I only have a few small bruises and petechia is going. Perhaps in the UK they do it differently. I just am nervous they are so calm. Or should i be asking or pressing for more. I dont know. I know i am in the right place. They said once i hit 10 i can go home. Hospitals are never easy to sleep and remain calm. I know i have to have patience but this is SO hard.

Fiona please don't panic. Most of us have had counts that low and just carry on working or whatever. The only thing I would do is ask to try another treatment. Giving platelets would be pointless as they wouldn't last long as your body would simply kill them off. Platelets are only really any good for surgery or serious bleeding situations where you need an immediate response.

Thanks Ann. I just worry as I guess its all new. They said to give steroids a bit longer and as it worked the first time they hoping for it to work the second time. Doesnt help my consultant is on holiday! As you kind of develop a relationship with them. He is very calming and gives you all the information. Guess ill have to read up on other treatments and see. How do you not worry at a count of 2 if you will suddenly develop a bleed. Never liked rollercoasters as a child and this feels like a huge big ride i am on!

Fiona:

I agree, try not to panic. I was at 3k and still working. I had a few bruises and petechiae, but other than that, I was fine. You'll get through this. Counts go up, counts go down. That's all part of it.

Ann is right about platelet transfusions. They are not usually given for ITP and can sometimes cause more harm than good (several reasons). When doctors do treat with transfusions, I usually wonder how familiar they are with ITP because it should be reserved for surgeries and bleeding.

Hi Fiona

Just read through your thread. Sorry to hear you were in hospital last time you posted. Are you still in?

I was given platelets when I was first diagnosed. (I'm in the uk too). My count was 2 & I was given 2 bags of platelets at 7pm and sent home. At 10am the next day I returned to hospital for a blood test & my platelets were already back down to 13. My body polished off those platelets within 15 hours & the bags they put in me seemed pretty big!! I know that's not what you want to hear but it's useful to know. Start looking around at the alternative treatments - ivig, rituximab, splenectomy, n-plate - & start weighing up the options YOU want to try. I found that feeling a little more in control of how I wanted to deal with itp helped me.

& like everyone else has said - time helps too. I used to be so anxious - I recall several episodes of bursting into tears at home, hospital & work!! Just before my 12 month itp anniversary last year (I was diagnosed Christmas 2012) I just stopped caring as much. Like sandi already said - I just figured that I'd dropped in the past & I knew what to expect. Itp is more a mild irritation than anything else for me at the moment.

Hope you're feeling ok today

Hi Katsim
Yes still in hospital had a count today of 9. They fidnt want to give me platlets as they said it can be like washing it down a drain. My body would deplete them. I think they wait it out. Any signs of bleeding they would have. So waiting slowly for pred to work. Last time it worked within 5 days and i shot up. This time not so much. Perhaps i had to hit rock bottom down to 2 to realise you can live through it. It is scarey and yes lots of tears. But its nice to know others feel the same. Its the start if my journey so i guess time will make it easier become like a habit. Such an odd condition which varies from person to person.

What treatment did you choose? I am beginning to read it all up now. Frightening tho such side effects to all these drugs!

Urgh - for me hospital (& waiting to get to that magical number 10) was the absolute worst part of my journey!! My count didn't really respond to pred in hospital so I opted for ivig to get me out of there!! I had ivig every three weeks for a while. Then I started responding to pred when I started taking oral contraceptives again. I had an indium scan in Manchester last November (to find out if my platelets were being destroyed in my liver or spleen - only available in the uk!!). My scan showed I was almost entirely losing platelets from my spleen. Splenectomy was my next choice because, for me personally, I wanted a drug free option & knowing my spleen destroyed my platelets made it more "likely" (not 100%) that splenectomy would work. I wanted to be drug free as I'd like another baby.

I was lucky & before I had to choose my count dropped to a HUGE 116. It slowly dropped as I tapered off steroids but I now happily sit around 40-50k, drug free.

You will find your comfort zone. I reached a point at about 9 months post diagnosis that meant I was happy if my counts were above 25. You will hear it said often here & it's true... Symptoms count not platelet numbers. I hope you are out of hospital very soon - just being at home will make things seem better xx