ITP

[Fishing55]

Hi I diagnosed with itp last July, platets count was 1had ivigs and platets infusion been up and down since then steroids keep my count up with revolade. Just would like my life back to normal.

[Anthonyh7]

Hello Fishing 55 and I know exactly what you mean about wanting your life back.

I have been living with ITP for 15 years albeit I was only officially diagnosed in July 2006. I was actually suffering many typical ITP symptoms (random, mystery bruises, tiredness/fatigue) for about a year before I was officially diagnosed.

I guess after 15 years I have learned to live a new kind of "normal" life. Undoubtedly ITP does throw in some tricky moments and they seem to come along just when you might think that things are settling down.

I am on Mycophenolate Mofetil (MMF) and it has kept my platelet counts around the normal level for the last 4 years and 3 months with the odd blip along the way. But I have had Prednisolone about 6 times, Rituximab twice as well as Azathioprine (which I couldn't tolerate at all).

If you wish to read a bit more about my story so far then please feel free to have a look at my ITP blog- myownpurplepatch.simplesite...

I have tried to carry on as positively as I can despite my ITP. It is hard work, I won't deny it but I guess I have just realised that you have to focus on the things that you can do rather than on the things you can't.

Also I try to take things day by day rather than look too far ahead, especially now with the Cover-19 situation, things are just so dynamic & some things we just can't control.

Anyway, best wishes to you

Anthony

[Fishing55 in reply to Anthonyh7]

Hi thank you it is nice to hear from other people with the same, Last year I was in hospital 5 times for a week at a time had so many ivigs my last stay was in December. My platets are up and down all the time in one week they were 400 dropped down to 10 lots of bruising so tired all the time have no energy thankfully my children have been a godsend, thank you Susan

[Anthonyh7 in reply to Fishing55]

If you haven't already found them, the following links are to the most reliable & up to date ITP information...

1. itpsupport.org.uk

2.pdsa.org

3.globalitp.org

Hope this helps.

[Millielottie in reply to Anthonyh7]

Hi just read some of your blog. Going to order your book.

I was only diagnosed 19th November with itp suspected to have been caused by flu vaccine. Steroids only got count up in week one then was put on revolade 3 weeks ago and count went up to 69 first week then dropped to 39 so now on 75mg dosage. Struggling with side effects and feeling really low. Is this normal. What other options are there. Very scared.

[Anthonyh7 in reply to Millielottie]

Hello Millielottie, sorry to hear that you have been feeling low & struggling with the various side effects. I know that when I was first diagnosed with ITP in 2006 it completely knocked my self confidence & I felt really floored by the whole thing.

At 46 years old I had never been ill in my life before and it all came as a huge shock. I had steroid treatment and they worked well for me although my platelet counts fell when I came off them. The trouble for me was that the steroids had so many side effects as they do for most people.

I had steroid treatment 6 times on and off, then Azathioprine, then Rituximab twice and now since 2016 Mycophenolate Mofetil (which is working well for me).

In terms of treatment options the following link is a full up to date list of options -

itpsupport.org.uk/index.php...

In regard to Revolade it can take a while for the platelet count to respond & settle down so be patient with it, although, of course do talk things through with your specialist regularly.

In respect of treatment options you can get a second opinion at any time if you wish by getting a referral to an ITP Centre of Excellence, the list of which is at the following link -

ukitpforum.org/index.php/en...

Please also feel free to read my ITP blogs if you wish at

myownpurplepatch.simplesite...

anthonypaulh.tumblr.com

The blogs cover the most recent few years so mainly talk about things from 2016 but they do explain some of the rest of the journey.

I hope all this helps but do ask anything else if you wish. I will always try to answer as best I can.

Best wishes

Anthony

[Millielottie in reply to Anthonyh7]

Hi Thanks for getting back to me.

Yes I have been totally floored with my diagnosis and obviously with covid around this has made it harder.

I just want to get to a point where I can stop worrying so much and being so scared. Worry about covid, getting a blood clot, my side effects and my weight and going on and off loads of drugs.

I have never seen the same specialist on my appointments so makes it hard as no continuity.

I was going to order your book as well on amazon.

Do you drink. I haven't since last August as been trying to lose weight at slimming World but not sure if it is OK to drink again.

Hoping the tiredness lifts as I have always been a busy person and have come to a standstill.

Glad you are doing ok and have found a good treatment x

[Anthonyh7 in reply to Millielottie]

Yes I know exactly what you mean about just feeling so agitated, worried, tired and anxious. All of these things are very familiar to my own experience & everyone I have talked to or met with ITP.

As for what to do about tiredness, I found that making sure you drink plenty of water helps ( for a man water intake is recommended at 1.8 litres per day and for a woman 1.5 litres). I drink about 6 glasses of water per day but also avoid any caffeine and have decaf tea or coffee. Staying well hydrated helps with coping with tiredness/fatigue and eating a well balanced diet also helps.

So I cut down on ready meals/processed foods. Basically I eat plenty of fruit and vegetables, porridge for breakfast, cut down on fats and meat (especially red meat). That said I still have the odd treat but not as often.

I have also cut down on alcohol and now just have a glass of wine with a meal now and again. I have never been a big consumer of alcohol but I do like a glass of wine perhaps once or twice a week. I'd say I drink about 2 glasses wine a week if that.

I found that the best way to deal with it al is - focus on what you can do and not on what you can't. Plus don't worry about what might happen.

I know that when I was first diagnosed I started asking loads of questions and doubted everything. I learned to just focus on what I could control and not worry too much, too far ahead. Easier said than done I know & I still have tricky days myself.

Which part of the UK are you based in. Just wondered where you are being treated ?

I am in Berkshire & see a specialist at Royal Berks Hospital Reading.

Anyway, hope all this helps, do keep in touch and good luck

PS - Just occurred to me - You may wish to join in the following support group on Thursday this week but you need to register beforehand at -

itpsupport.org.uk/index.php...

These online meetings are a really useful & helpful support & are always very friendly, very relaxed. If you can join in I am sure you will get a lot from it. I will be attending so might see you if you can join in.

Best wishes

Anthony

[Millielottie in reply to Anthonyh7]

Hi I live in Scotland a place called Tullibody so travel a 20 minute journey to Forth Valley Hospital. Just frustrated that I am seeing a different haematologist each time I go and last week was a student who didn't know much about condition and had to go and speak to a senior haematologist.

I drink loads eat healthily. I managed to lose 8 pounds whilst on the steroids but in last 2 weeks I have put on 3. Putting that down to not doing as much with the tiredness.

The original haematologist i saw told me that getting the flu vaccine caused me to get itp.

Yes i will try and sign up for Thursday. Ordered your book as well.

This is helping me chatting to someone who has it as well. Thankyou.

[Anthonyh7 in reply to Millielottie]

Completely agree that engaging with other people is a massive help. If you join in with the online meetings I think you will gain a good amount from them.

The first one of the year is on Thursday but there are 2 others already scheduled. You just have to register before the meetings so that you can join in on the day.

The 3 scheduled support groups are for

1. Thursday 14th Jan - itpsupport.org.uk/index.php...

2. Thursday January 21st - itpsupport.org.uk/index.php...

3. Tuesday February 23rd -itpsupport.org.uk/index.php...

You can join any one of the support groups, wherever you are based as long as you register beforehand.

In terms of where you are being treated, you could always get a second opinion from one of the ITP Centres of Excellence. In Scotland they are at Aberdeen Royal Infirmary and Glasgow Royal Infirmary (probably closest to you I'd guess) -

ukitpforum.org/index.php/en...

You can be referred by your GP albeit in these Covid-19 times I'd guess that any consultation/discussion with them would be by phone or ZOOM/Skype/Facetime.

I hope that the book is informative, useful and ultimately positive.

I tried to tell my story as fully and honestly as I could but at the same time leave people feeling that there is life with ITP that can still go on albeit with sensible planning & precautions where needed.

On the whole most hospitals do not see that many ITP cases. My local hospital in Reading will probably only see a maximum of 10 new cases per year if that. So it is quite rare. Many nurses, doctors, GP's will not have heard of it at all. Dentists are also completely unaware of it.

Anyway, all the best and take care.

Anthony

PS - with steroids even when you come off them it can take a good while for the body to adjust to not being on them anymore. Some people take longer to get over them than others but it can take anything up to 3 months in some cases depending on how long you are on them for and how much the dosage was .

[Millielottie in reply to Anthonyh7]

I have registered for the meeting on Thursday so looking forward to it.Yes you are right about the steroids. I only stopped taking them on xmas day so I suppose that will be one of the reasons I am feeling down and lethargic.

I just want to get to a point that my life is a bit more normal as have been so restricted for past 8 weeks. Hoping if count is up next week i can get back to work.

Hope to see you on the meeting on Thursday. Thanks for all your advice and looking forward to reading your book.

[Millielottie in reply to Anthonyh7]

Hi

Sorry to bother you again.

Just wondering if Itp is classed as a critical illness for life insurance and also I presume I need to declare it to the company I am with or do I need to wait longer.

[Anthonyh7 in reply to Millielottie]

Yes you do need to declare it to your insurers. Each insurance company is different and will have different policies (no pun intended) for dealing with ITP. Basically some will not see it as important but some others will. Some may also request a list of any medications that you have been prescribed for your ITP.

It is especially important also to inform any travel insurance you have or take out in the future. Some insurers will cover ITP patients with no extra cost whilst others may charge a higher premium or depending one the specific case and medical history may exclude the ITP from the cover.

I think that the ITP Support Association have a list of insurers for ITP sufferers and it may be worth emailing them at [e-mail]

[Millielottie in reply to Anthonyh7]

Morning I will look into this today as will mine be classed as chronic itp now due to the steroids not working as expected. Do I need to wait until 12 months have passed for that.

I

[Anthonyh7 in reply to Millielottie]

Best to talk it through with the insurers now and they will advise you what they require (if anything). They are all different so I am sure they will have their own procedures.

I have found that with insurance it is best to advise them sooner rather than later and then they can't come back to you later, in the event of any claim you might need to make and suggest you had hidden anything from them.

Hope all goes well. Keep us informed as it is good to hear what experiences people have with these things.

[Millielottie in reply to Anthonyh7]

Thanks for your advice. I will get in touch today and let you know how i get on.

[Lawcomo]

Just had surgery, they removed my spleen 50/50 chance of curing. Currently my counts are normal. I was diagnosed in January of this year. Steroids didn’t do anything for me, had shots of endplate worked a few times but last shot did not boost my platelets. Good luck fighting this disease. This site is good for support and resources.

[NickyD]

My lowest count was zero and my highest count was 1440 (sticky blood) with too many platelets! One week I went from 3 on the Monday to 968 on the Friday and I am still here :). As Anthony says take each day as it comes. There is no logic to this condition, don't try to second guess it.

I too am on MMF and it has stabilised my condition. However that was after 7 other treatments including a splenectomy that did not work and over 125 visits to hospital in 18 months. We all can agree it is a scary condition but it is called idiopathic because no one knows why it occurs or how to best treat it.

I found a lot of solace from contacting people on this site. We know what you are going through and we will listen if you are worried or scared.

Take care.

NickyD