Diagnosed with ITP Last Week

Hi, I'm Steve, aged 29 from the south of the UK. I'm new to the boards and have been on a bit of ride since last Monday.

For three or so weeks I've had some bruising on my legs and later arms which I couldn't fully explain. Initially I'd put these down to playing tennis and squash and pretty much ignored them. I then had some small red dots on my arms and hands which I now know were peticuli.

Last Monday I booked myself in to see my GP who was very quick to recommend an immediate blood test at the local hospital. She explained a few reasons and didn't seem too concerned but did say she wanted to be sure and would call me later with the results. Later that day she did indeed ring and told me that my platelet count was currently zero. Again she kept pretty calm but asked that I immediately visit the hospital to been seen by the medical team quite urgently. Again she stressed not panicking and that there were many options once in the hospital. Fortunately we live only 5 minutes away so getting a bag packed and heading along was pretty quick. I felt pretty upset and now much more scared since to date I've never had the need for any urgent medical care. Googling the possible causes of low platelets during the day had also thrown up some rather scary possibilities.

I arrived and was given a bed on the medical assessment ward, bloods were drawn again and a cannula hooked up. I saw a couple of doctors that evening and already the probable cause being given was ITP. It was something I'd never heard of and the explanation at the time didn't sound too worrying. I'd seen it listed during my earlier searches but hadn't dug into it much.

I stayed overnight on the MAU ward awaiting a transfer to the haematology ward. I was started on 70mg of Prednisolone as first treatment option.

On Tuesday morning I was transferred to haematology where more bloods were taken. I continued my dose of Prenisolone at lunchtime and my results came back at a disappointing zero again. I met with the haematology consultant who took time to explain a little more on ITP and that he was not overly concerned that the steroids may take a day or two more to show results.

Wednedsay was the first positive news as my count was now up to 4. Still not great, but progress finally. I was started on potassium as my level had dropped slightly and kept in on the Predisolone.

Thursday was a less good day as I scored only 1 on the next CBC. Otherwise I was feeling fine.

Friday was better. Now up to 10 on the platelet count and potassium was back to normal.

Saturday's results came in at noon and they were up to 18. It was agreed to give me walking release since I live very close with a visit on Sunday and Monday to get further counts.

I've just got back from the hospital today and I'm a bit down. Yesterdays number had dropped to 16 and today I'm back up but only to 18 again. I'd been hoping for better. Saturday I'd slept a lot and on Sunday I felt a bit more refreshed, but last night I just couldn't sleep. I started to get slightly twitchy sensations in my muscles and could feel my heart beating heavily now and again. I didn't feel too bad but just odd. This morning was the same after maybe an hour of sleep. I now have a headache also. Speaking to the consultant this afternoon he was not too concerned and did agree it could be side effects of the steroids which we would just keep an eye on. Having read that many people don't like these drugs I'm worried how long I may feel like this and also about the possible side effects as the dose is lowered.

However he did explain that the platelet counts are not going up enough for his liking and his next plan it so start me on Privigen IVIg tomorrow morning, running onto Wednesday for a second course.

And that's me up to date. I must admit that after reading as much as possible on ITP over the weekend I'm feeling a little scared about the long term issues I could face. I've read a lot of data that shows quite often this can be longer term and something I may have to manage for some time. That realisation has dented my mood somewhat. My goal is to remain as positive as possible and my consultant gave perhaps successful first treatment figures of around 50-60% with low risk of return. However I'm not sure if this is bedside manor or current thinking. The reports and posts I've scanned seem to show higher likelihoods of never reaching "normal" counts without some kind of continued treatment. All of which have themselves some longer term implications.

So here I am really, reaching out to others who have gone through this same process. I've read back through as many of the older posts as possible, some positive and others not so much. I keep telling myself that I must go on my own case really as I may be a simple case and look back on this in a few months as a distant memory.

I'll try to keep my experience here updated as I progress through the next stages and would welcome anyone's views and shared experiences.

Hi Steve. This Forum is a great source of information and support. I hope you stick around.

First of all, everyone is different when it comes to ITP. Everyone responds differently to treatments. You do not seem to be getting a great response to Prednisone, but that's okay because there are other options. Some people have actually been happy that they don't respond to steroids because then they never have to use it again. That is one positive way to look at it. The side effects can be pretty nasty as you are finding out, and tend to get worse the longer it goes on. Your doctor might want to start tapering you, but it has to be done slowly and you can't just quit.

IVIG is almost always a temporary treatment, usually lasting most people a few days or weeks. Since it takes so long and doesn't really last, I am not a huge fan. However, if you do respond, at least you will know that there is something that works if you should really need it.

Low counts themselves are not necessarily a medical emergency, but symptoms can be, so it's important to take note of that. Blood blisters in the mouth are more concerning than a bit of petechiae, and of course any unusual bleeding can be serious. Since you are being monitored and treated, chances are, you'll be okay. People with ITP can sometimes handle the low counts because platelets are larger and tend to work better. People with ITP also tend to have tiny platelet fragments that cannot be counted, and those can be very protective as well.

As for ITP being chronic, take one step at a time. I have been here since 1998 and have seen many people come and go. We had a woman here recently who initially had a count of zero for well over a week and wasn't responding to any treatments. After about two weeks, her counts shot up and have been in normal range without treatment for over a year. Anything can happen. I've been in remission for about 8 years, but struggled with ups and downs and many treatments for 8 years before that. Remissions do occur, so chronic does not mean for life.

Even if you do not achieve remission, you can still lead a normal life. Many here do, some with chronically low counts under 10. ITP has really come a long way in the last 15 years, and treatment options are better than ever. You just have to find the balance between what works and what you can tolerate. Most do get to that point.

Welcome Steve!

I will be honest....this group has positively changed my life! I hope you also find support, comfort and info. Like I did! I even made close friends!

I am also 29 . I was diagnosed on dec 28th of 2012, I like you did not respond to prednisone but I did respond to IVIG, so hopefully you will too. As Sandi said IVIG is usually temporary. I will be honest I have chronic itp. The first year was very challenging. It was more emotionally challenging than physically. However, I did find a treatment that works for me Promacta ( it's a TPO. I also respond to Nplate). I now live a very active normal life. I am a special education teacher and work out 5 days a week.

My best advice to you would be find a doctor who is very knowledgeable about itp or is open to learning and being up on the latest itp research. I went to someone who wasn't at the beginning and it made things very stressful and depressing. I ended up seeing a specialist and it really changed my life with itp for the better. My other advice would be to connect with others on here. I have great family and friends but it's made a difference to connect with others who are going through or have gone through the same thing.

Thank you both so much for your replies. It does help hugely to interact with others who have gone through this. I'm sat here this morning preparing to head into the hospital for my IVIG in an hour or so. My mood is up and down but I'm working to stay positive and take the steps as they come. I'm trying not to upset myself or my wife.

Having been on the oncology/haematology ward it does give some perspective that I'm better off than many others. I was on a ward with two terminal bone cancer patients so really have little to complain about in comparison.

I'm keeping my fingers crossed that the treatment goes well and I don't see any of the side effects I've read about. Last night my wife, I and two friends took a walk along the seafront. It was nice to do something normal after a week or mostly being hospital bound. However when we got in my knees really ached and felt swollen. Seems that could be another side effect of the Pred. This morning though they are feeling ok.

I remember when I was on pred saying that my knees didn't feel as though they belonged to me. They felt very odd, at first achy but later just weird.

Your count is doing okay on the steroids. 16 and 18 are the same count, the difference is neither here nor there and if they'd tested the same blood again would probably have found another different number. It can take time for the count to go up. Looking back at my records I see that I went up to 15 after a week which everyone was happy with. The following week I was at a huge 85, so don't give up on it yet, it can take time.

Hi Steve,

I was 38 when I was diagnosed with this back in 2012. I thought at the time, I was about as fit and healthy as I had ever been, going to the gym, swimming running ect. So like you it was a huge shock, having never heard about this disorder.

Initially after bruising / bleeding I had monitoring for nearly 12 months with no treatment. I had a bone marrow biopsy to rule out other stuff, but my counts although never reaching the magic 150,000 somewhat bounced around above 30,000. Although I spotted bruising etc, that you just get used to.

It was only these last 3 weeks, that it started again with a vengeance. Bruises bleeding etc and my count was 7,000. I am on prednisone started at 70mg and now being tapered off, as I did have a good response. Side effects with me on this in just 3 weeks was mainly mood swings, I was pretty manic but it's better as the dose is reduced. I also have a huge appetite I have never eaten so much in my life!!

I also, would always feel flat when I visited doctors and got a count that wasn't what I wanted, however as many people have said on this forum, as long as you get above the safe limit, you can go on as normal.

I like you visit oncology and I am thankful that I am not in the same position as others on the ward. In a strange way my attitude to life has changed since this, I now spend more quality time with my family and kids and don't take anything for granted any more.

I am back at the doctors to see how I am doing tomorrow, I hope that you respond to your treatments and can get back to normality as soon as possible.

Hi Steve

Like you I have also just started this journey. I had a count of 12 and put onto steroids. My platelets shot up to 249. Then I was tappered off steroids. They sat at 128. And my next blood test was 2 weeks away. I got a few bruises and the itp rash. Which iv never had before. I remember the nurse taking my blood and I just cried I knew i was in single digits. Turned out I was 2. I was in hospital for 6 days. This time steroids struggled to kick in. Went from 2 to 4 to 5 back down to 2 then 9. Now 15.
The docs do say you have to be patient and wait and when platelets are so low it takes time to get them up quicker than when you have double figures. They also say that its very difficult for computers and tests to determine exactly if its indeed a 2 or 0.
I also went through the guilt of feeling oh poor me but surrounded by cancer patients. Now i think i was given ITP and spared cancer. Its hard at first - so hard. So many ups and downs. Luckily steroids for me put me on a high. And i dont get any real side effects from them. It does help to post and chat to people here. They make you realise and help you come to terms with it.
Fingers crossed my next blood test next week steroids would have worked more. Think this time around its a bigger battle.
I hope you find calm and peace and remember you are not alone!

Thanks everyone again. Yesterday's numbers remained pretty fixed at 13. Just high enough that the doctor would allow me home last night. We started on the IVIG (Privigen) at 11.30am and I was out of the hospital by 6pm. Fortunately I didn't have any reaction and actually felt pretty much normal yesterday except for a slight headache. I'm back in today for the second round and then hopefully we'll see what that does for me.

johncarp25 wrote: Hi Steve,
Side effects with me on this in just 3 weeks was mainly mood swings, I was pretty manic but it's better as the dose is reduced. I also have a huge appetite I have never eaten so much in my life!!

I'm the same with food right now. Eating way more than normal. One positive is eating what I fancy without being told off!

Fiona - Sorry to hear you are going through this also. It's a bizarre experience going from assuming yourself to be fully fit and healthy to being consumed with your daily CBC. On the advice of others I'm trying to forget too much about that for now and just be happy I'm high enough not to be required to spend nights in hospital while keeping things crossed that it does improve. I'm finding that getting out for walks with friends and my wife each day helps to bring back the normality a bit. I'm treating hospital as "work", heading in, doing what I need to and trying to switch it all off when I leave.

SteveG wrote: I'm finding that getting out for walks with friends and my wife each day helps to bring back the normality a bit. I'm treating hospital as "work", heading in, doing what I need to and trying to switch it all off when I leave.

That's what you have to do. Keep things as normal as possible and go on with life. I always thought of Rituxan treatment days as a nice break from work. I could leave that stress for a day and nap or read a book.

Try to drink a lot of water...stay hydrated. IVIG can cause nasty headaches and water can help.

Hi Steve

How are you doing today?

I was 31 when diagnosed (I'm in the north-west of the uk) and had a similar start to you. I had a count of 1 when admitted to hospital - was given 60mg pred - I think my second day I was up to 4, third day was 8 and then fourth day was back down to 6. I didn't get out of hospital until just after my first ivig infusion when my count "soared" to a dizzy height of 22. It came back down within a week and I had another ivig & then another....

I spent 4 months procrastinating and having ivig every 3-4 weeks because it was (for me & for most) a temporary lift in platelet count. I started to think of it as a way of distracting my immune system for a short while, but once it was out of my system it started right back on that platelet destruction. If I could do my initial few months over I would 1) educate myself quickly about all the options out there 2) demand a haematologist who specialises in itp for a second opinion.

I now feel like I know enough to be making informed decisions WITH my haematologist. I got my second opinion last July - 7 months after I was diagnosed - wasted time in hindsight.

This forum is fab - do come back & get support. Some people on here are so experienced! And let us know how you get on. I became a "chronic itp" case last dec (had itp over a year) but I still live a good & normal life. I do pretty much what I like & sometimes even forget about the itp

So I finished the IVIG on Wednesday and to begin with didn't seem to have any reaction initially, although since then I've had a persistent headache since Thursday afternoon, sometimes quite bad. Hopefully that will subside soon.

I'm now also getting indigestion / heartburn which I believe is the Prednisolone. I was woken up this morning feeling pretty strong burning from that. I've taken some Gaviscone which is helping.

In better news, we had my latest counts yesterday and I was up to a much higher 59. The consultant is quite happy with that for now and has discharged me from hospital. I'm back in on Monday for a fresh count. My doctor seems to be taking the line that he hopes this may get me somewhat sorted although the reading I've done does mirror what has been said here and suggests this is less likely to be a long term fix. I guess for now we wait and see.

I'm signed off for the next week to hopefully let my head settle and see how the counts go. Based on Monday's outcome we will look to start tapering the steroids which is no bad thing if I continue to get heartburn. It's all stuff I can put up with but preferred things before I started treatment!

Mood wise I'm doing okay. Trying not to get too anxious about the counts and long term possibilities until we get through the next week or so. I'm hoping that my platelets rise and stay up without needing further IVIG.

The next issue is that on the 26th my wife and I were meant to be flying to Switzerland for 12 days to celebrate our first wedding anniversary. With a 50+ count the doctor was not really sure what to advise. He doesn't have a major issue with the trip but due to the length of time would highly recommend getting a blood test during the trip to ensure my counts are not falling. This ties more into the theory of IVIG possibly only being temporary. This all being dependant on next weeks counts staying up.

I have no idea how and if we could organise the test and whether our insurance would even let us travel with that requirement. My bigger concern would be if I had dropped, being stuck needing treatment away from home. On the other side I really don't want to ruin our anniversary holiday. My wife has been so amazing over the last two weeks and has spent many hours by my side. It really upsets me that because of this we might have to cancel. Has anyone here had experience with travelling abroad at counts around 50?

Hi Steve

Glad you're out of hospital. Hope your counts keep up for a little bit. I won't lie to you - I couldn't have travelled the first few months after my diagnosis - my counts were all over the place & I didn't have a "rescue treatment" that I could take with me.

That said - living life is way more important than counts.

Talk to your travel insurance provider & see what they say. You want to know if they'll cover you if you can't travel & give you your money back. You also want to know that they'll still cover you if you do travel - they will only do that if you tell them about your itp. Also - shop around if you need to change insurance companies - I got mine through money supermarket online for about £10 - my old insurer tried to charge about £60 for travelling with itp!!!!

Also check out the thread below this one on the forum - it's all about flying/travelling with lower counts.

Ultimately it will be your decision - you need to feel happy & comfortable so you enjoy it. Worst case scenario - cancel it, get your money back from your insurance and go when your fully happy with wherever your counts are

Hi Steve,

Glad to hear the counts are improving. The heartburn / indigestion I had terrible and I was told it was the Prednisolone, my doctor prescribed me Ranitidine and it fixed it.

Although my counts did not get as bad as what yours dropped to,( I am just on the Prednisolone, which I am responding too), I too was worrying over our family holiday. The Doctor told me that the facilities are good in Europe ( I guess it depends where as
it's a big place) my doctor said he would do my count before I go and keep me going on the meds, he suggested researching the main local hospital to check facilities so in any event I have a plan on what I would do if there was an issue, and where I would go. Originally I was preparing not to go, but I am of the mindset that I am going. Fully appreciate that your situation is not the same as mine, and you are on totally different treatments.

I guess you have to be comfortable with the decision you make, I am more comfortable about going, as I know I had a good initial reaction to my treatment and staying on it a bit longer will hopefully get me over the trip. I have a lot higher counts on the Prednisolone, than you, but totally get your predicament as when my count fell through the floor, I was ready to cancel. As someone newish to all this, I too would be interested on what longer term ITPers do about holidays when Your in the middle of a flare up!!

Your haematologist should be prescribing something to protect the stomach. Ask for something like omeprazole which is great.

Ann wrote: Your haematologist should be prescribing something to protect the stomach. Ask for something like omeprazole which is great.

Thanks Ann. I'm actually already on Omeprazole since starting on the steroids. Yesterday hopefully was a blip as today no issues with heartburn. My headaches also seem to have stopped as well so feel like my normal self at the moment.

With regards to the holiday I think I'll have to assess it further with the consultant on Monday after my latest blood test. I'm of the mindset that I won't let this affect my life more than it has to, but I also would feel quite vulnerable heading out of the country not knowing if my counts will stay up in the safe zones. My low counts were likely affecting me for 2-3 weeks before I visited the GP and I didn't notice any real effects besides the bruising. Is there any real information of the true risk of dangerous bleeding at lower levels? I've tried to digest what I can find so far and it's hard to really understand when things could be considered more life threatening and would require immediate treatment. I'm not normally a risk taker but I also don't want to hide away either. It's deciding on where to draw the line that I'm now struggling with.

I do feel that if I was further along with the treatments and had proper options should my counts fall I would feel more comfortable going. As it stands now I'm leaning on the side of cancelling unless my consultant really thinks we're good to go. I'm not sure if the next week is long enough though to determine whether the IVIG is a short term boost for me.

Hi Steve. Glad your counts are on the up. I am dreading Tuesday next week for my count but lets see.

With regards to heartburn ask your Doc for Lansoprazole 30mg gastro- resistant capsules. You take them 30-60 minutes before breakfast. Eat breakfast then take steroids. i havnt had problems so far and I am on 90mg steroids.

With regards to a holiday. You need to be comfortable 100% going. I remember i had a count of 128 and asked on the forum here if I should go to France for 8 days. I couldnt make up my mind. I know you cant let ITP ruin your life. But deep down I knew I was newly diagnosed trying to work out things in my head and treatments and unfortunately I knew it was not right for me to go. I would be nervous. My counts suddenly dropped to 2 that week. Luckily no flights booked so that was my decision made. Give yourself time. Dont rush decisions and believe you me I know once I am stsble and once the Docs can see patterns forming of counts etc and monitoring more closely I know I will get to go to France. And perhaps enjoy it more. Armed with the knowledge I will be ok.
I am not to put my life on hold but its all new to me so right now I dont think I am in the right frame of mind for a relaxing holiday. So its stay in the UK for me right now, enjoy the glorious summer weather, and soon I will travel......

Good you responded to Ivig! re travel: Just my opinion,(ITP since 2008) but I'd be leaning the same way you are leaning. I probably wouldn't go out of the country just yet.

My thoughts are you don't have enough information at this point. Yes 50K would be a safe count for travel- my hemo said a person can have open heart surgery at 50K:) But as you said, you don't know if your counts are stable. Plus you don't have a convenient rescue remedy yet- I would want a bottle of pills to carry that I knew would bring my counts up in case I started having signs of low counts.

re your question: Is there any real information of the true risk of dangerous bleeding at lower levels? Seems most agree that the risk increases when counts are below 10K and best to have counts above 20K-30K, but besides that its hard to say what is safe, everyone is so different. Some people have terrible trouble at 20K but then you were okay at zero- good for you and good information! At least you know you are likely okay at lower counts. Good luck with whatever you decide!

Thanks everyone for your valuable input. I'm pretty sure how I'm now leaning but will give myself a little more time to make the final decision. My wife and I discussed the pros/cons and details of my ITP research this weekend and are now considering a change to a UK based holiday (assuming no major side-effects of count issues in the coming week).

FionaJ wrote: Hi Steve. Glad your counts are on the up. I am dreading Tuesday next week for my count but lets see.

Hope it all goes well and your count is good. I'm starting to worry about tomorrow now and what my latest CBC will bring.

Just wanted to say Welcome and here's hoping your one of the people that comes for a bit and than goes because ITP goes!

I too would be interested on what longer term ITPers do about holidays when Your in the middle of a flare up!!

What I do about holidays is the same thing I do every day....get on with my life.
Many of us are living just fine with counts below 20k. Mine stay around 9k-16k with treatment.
The world hasn't come to a screeching halt because I have a low platelet count.

.

Back from my blood test and outpatient appointment with the clinic nurse. Today's count is 94 which is good in the sense that it's still going up, but not as high as my consultant was hoping to see.

I had the chance to share my concerns and questions from the more extensive reading I've done into this condition and we've come to the decision that the holiday abroad would be best cancelled. I have to say that although disappointing, having a definitive decision that weighs on the side of safety at least gives me closure on that item. Managing the ongoing treatment and progress is the priority for now.

We're going to continue the Pred at 70mg for a further week as I'm generally tolerating the side effects. Sleep is still very varied (3 hours in the last 24) but we can look to manage that if needed. I'll be back in next week for my next blood test and to make further decisions on my treatment plans once we have those results. Not much I can do but put it all to one side as best as possible and get on with things.

Glad you've made a decision you're happy with. Are you still planning a short break in the uk? Where are you thinking of? Some places are still having lovely weather

94 isn't too bad. It's a safe count first & foremost!! Much better than my first response to ivig & my response got better each time I had it. Try to relax over the next week (well as much as you can on pred!) and try not to dwell too much on the itp. Hard I know!! Hopefully looking forward to your anniversary will keep you occupied

Thanks Steve, just came back from my blood count at the hospital so gone from 15 to 127 in a week. So very thankful. So lets hope it continues to go upwards for you aswell. Nhs was all over the place today so didnt even get to see a doctor, but lets hope nurses read the right count! Very strange indeed. Going to try ask to stay on 90mg fir another week just for an added boost maybe.

A little update after today's tests...

So I'm a little down this afternoon after learning that my latest count is 48 now so the IVIG definitely doesn't seem long lived. After chatting options we're taking the watch and wait approach for a further week as long as no new bruising shows up. They are hoping that maybe my baseline can sit around 50 but obviously that remains to be seen.

I'm to continue on the Prednisilone at 70mg for now. My ALT liver function tests were slightly abnormal and they've decided to change me from Omerprozole to Rinitidine as the possible cause of that. Pick up the new prescription tomorrow.

I'm not feeling great today as I have had a bad headache which is likely from my bad sleeping pattern I now seem to be in. Often not getting off to sleep until gone midnight and then waking unable to sleep longer at around 4am. That's been fairly consistent except for Saturday where I slept 9 hours straight.

Ah Steve I'm sorry to hear that your count has dropped again. But 48 isn't too bad. My count sits around there and I live a perfectly normal life.

Sometimes it's harder to cope with the treatment side effects that the ITP. It's so difficult when you're getting no sleep because of the steroids. Everything seems harder to manage when you're sleep deprived.

Do you see a specialist in ITP? I ask because my original haemo wasn't a specialist but when steroids didn't have a huge impact on my counts he started to taper me immediately. He didn't take me off them, but a dose of 30mg rather than 60mg had much fewer side effects! Still didn't really work but it wasn't working at higher doses either, so I felt it was the right choice. I suppose in your case though the Ivig may mask any impact the steroids are currently having. Really hope that your counts stays level over the next week!

Have you made any plans for your wedding anniversary? Hope you manage to do something fun to take your mind off all this.

Katsim wrote: Do you see a specialist in ITP? I ask because my original haemo wasn't a specialist but when steroids didn't have a huge impact on my counts he started to taper me immediately... I suppose in your case though the Ivig may mask any impact the steroids are currently having. Really hope that your counts stays level over the next week!

Have you made any plans for your wedding anniversary? Hope you manage to do something fun to take your mind off all this.

Thanks Katsim.

I've not yet ascertained quite how expert my consultant is with ITP specifically although he does seem to be recognised as a good hemo. He is very easy and straightforward to deal with so far but I do need to quiz him more on his experience with ITP as we start to look into longer time management of this. I think I'm happy with the approach so far based on what I've read and will see a little longer how my own personal levels seem to sit for a few more weeks before deciding if pushing for possible second / more expert opinions may be worth considering. My main alarms would be if we start getting towards any discussion of splenectomy too early. So far he seems to be following a pretty standard flow of treatment.

He'd like to taper the Pred soon although he wants to see for a little longer what my levels look like without changing things this week. I take it that he will then know if by tapering the Pred it causes further drops. It's mostly the lack of sleep and extra eating that seem to be my side-effects in the last few days. Back awake again after 3.5 hours sleep! I do seem more snappy and irritable which I hate. Heartburn seems to have eased up, although I guess changing from Omerprazole could affect that. I'm having a lot of mild to medium headaches but I was prone to those before and really think that's just caused by my lack of sleep.

By shear co-incidence my wife was speaking to someone at work about ITP who knows a woman in the area who works for an ITP Support group so that may be a good person for me to speak with as well.

As for our anniversary we're a little stuck. We had hoped to get away in the UK if I was feeling better but with the headaches and now this latest sign of dropping counts even booking a hotel and some nights away here could be a bit wasted (and we wouldn't be able to cover off any cancellation costs). We're considering maybe a night or two in London this weekend as it's close (1.5 hours by train) and can be booked quite last minute. At least doing that would be a nice way to celebrate away from things whilst not being too risky should I need to get back. We'd like to consider trying to rebook our planned holiday later in the year if things pan out and I can get stable counts.

I've made the decision to return to work today on an gentle basis. I hate being off sick as I feel a bit useless and like I'm letting others down. Besides tiredness and headaches I've not much to really stop me and the Dr seems happy if I take it easy and rest when I feel I need to. My manager has been great and is supporting whatever is best for me. Fortunately I work remotely from home so it's no major issue for me to dip in and out of it if I need to. The only concern is it has been a very stressful job for the last few months for various reasons and I want to ensure that part does't risk bringing me down further.

I'd really love to get back to playing tennis which is something I love doing. My weekly club sessions always cheered me up after a hard week. Whilst the Dr didn't rule out general light and non contact exercise he was a bit against tennis for now. Risk of contact is not massive but I guess enough to make it less sensible to try at the moment. That said, I went down for a swim last week and after 4 lengths had to stop feeling pretty weak and woozy so think I need to limit my expectations for now anyway. It just feels like ITP is taking away many of the things I enjoy which doesn't help my mood at times.

Hi Steve,

I fully understand how you feel. ITP and the treatments make you feel weak and Predni can make you a bit of a different person.

BUT, after 4 year with ITP and treatments I can tell you that your life will eventually get back to normal or almost normal.

I work from home too. If I can not sleep because of the steroids I work some hours in the very early morning. I usually wake up around 4 when on Predni. These are usually also the hours with the clearest mind. So I either enjoy them or work on stuff that is difficult. Maybe that is possible for you too. If not: I usually can get back to sleep if I eat something. I try and avoid chocolate, but a banana or an apple also give me a boost of the sugar levels which allows me to go back to sleep at 4:15. It is uncomfortable to get up, but this helps me.

When it comes to exercising. I can't really comment on Tennis since I've never played it. But I've been mountainbiking with level around 20. No extreme stuff and yes it made my hemo nervous, but it also gave me great joy. I don't do it every time, because sometimes with low levels I feel saver than on other days. I always tell me that the biggest risk for a person to die is in a car crash and that never kept me from getting a driver license and drive on the motorways.
Lately I've only been on low Predni level and at the moment I take 0. My personal experience is that above 20 it is difficult to exercise. On that levels I only take walks or ride the bike slowly. Below that I exercise 5 days a week. mountainbike, roadbike and some weights. It also helps me to keep the weight gain at a acceptable level.
Everybody is different and you need to find your way to deal with ITP. Give it time to find your way and you'll really feel a lot better than you do today.

Cheers
Joerg

Katsim, may I ask, what dosage are you on for prednisolone and how long have you been on steroids for?
I am concerned as I am on full 90mg dosage for about 3 weeks now, no tappering as this time around on pred my counts are not souring up like they did last time. Which is weird I thought normally every time you take steroids you get the same results - clearly not and clearly ITP is so different everytime around 'you crash'.
Do people stay on low dosage of steroids for the rest of their life, or do the doctors discourage this? It is also very strange that I came out of hospital 3 weeks ago and since then still I have not seen a Haemotologist I go every week to check my bloods in the Haemo clinic and the nurse just checks the count, previously when I was on pred I saw the Haemo every week, she tested for sugar, BP, and even water retention, and my count was 12 that time. This time is was 2 and no checks nothing. I get told she is on holiday. Its a bit fustrating. Considering getting hold of my Consultant who originally saw me and asking him if they review my notes or blood tests or do I just carry on - the nurse was the one who said carry on with 90mg this week, are they seriously that experienced in this field, surely the Haemotologist should have the last say.?

Hi Steve, so sorry you have dropped - did the Haemotologist say why steroids do not work on certain people, I am having very slow progress aswell this time around, last time on pred it soured up so the sleepless nights, the constant drowziness and lack of energy and of course lets not talk about my moon face, was worth it for the high counts previously, this time around not so much.

I have to say tho, I started to excercise again, well little bit, and someone did write on here you have to try and move and get off the couch in order to get out the drowsiness and lack of energy, it does work.... so will try keep that up.

I also feel that most of the fustrating part of ITP is that it is not known - nobody knows why the counts go up or down or your immune system attacks itself, if they knew that we would be cured. It would be so much easier. Also everyone with ITP is SO different, what works for some doesnt work for others, I have lots of family and friends telling me its the spleen just take that out and you will be solved, but reading into everything its not that simple, its not that 100% accurate as once your spleen is removed your liver can destroy platelets so what works for one doesnt for others.

I know we have to remain positive and patient, it is hard sometimes, and when you feel like your life is on hold, but like everyone else says on this forum, the beginning bit is the hardest, once they can manage the situation then perhaps it will become easier for us.

Ive learnt to be kind to myself spoil yourself in certain ways you can do... so if by coming to London and staying in a Hotel a 'staycation' then do that....

Do you go everyweek for a blood test.... well lets hope next week is a better one!

Fiona - I rarely saw my Hematologist no matter what my counts were. I had the count done at his office and if the counts were low, a nurse would call me with instructions from him. I didn't really see the need to have an office visit all the time and actually would have considered it a waste of time since I had to get back to work. I saw him often enough and was none the worse for not seeing him.

People do not generally stay on low dose steroids for life because of the long term side effects. There might be a handful of people here who do, but it's unusual. I've been on 10 mg's+ for the past 8 or 9 years and it has taken a toll (not for ITP).