Hi, I've just been diagnosed with ITP platelet count 2 and a mouth full of huge blood blisters and a rash every where plus bruising.

[johnw1952]

I'm on prednisolone and tranexamic acid. Any way to ease my sore mouth would be welcomed. Still in shock at the diagnosis and being self employed, worried about my future.

[dizz]

Hi

Prednisolone will often help lift the platelet count. The rash is called petechaie(pronounced pet-eek-ee-i). The sore mouth can be helped by salt water or get a mouthwash called difflam.

The future? Well it is possible to live a normal life with ITP, I still work and I have to work hard as a Director of a charity. You are only on the first stage treatment, that may work and you may have no further treatments. If you have Chronic ITP then talk to your haematologist about the second line treatments like N plate, rituxamib or IVIG. I would also recommend joining the ITP support association their information is wonderful and has really helped me in having the right information.

I hope that you feel better and that things settle down and you get consistent platelet counts quickly. I remember when I was first diagnosed how worrying it all was.

[johnw1952 in reply to dizz]

Thank you so much. Good to feel there are others who understand the worries and can recommend practical ways to help. Thank you again.

[mags4743]

Hi John - I too remember when I was diagnosed and it is a shock. The sore mouth is probably the worst thing for you at the moment. I too suffer with the occasional blood blister in my mouth and as dizz says I use Difflam and salt water is wonderful, but I also use Bonjela. I am sure the prednisolone will help your count and I hope you feel better soon.

Mags

[owenm]

John,

I was self employed when diagnosed with ITP 3 years ago.

There is help available to you if you are out of work due to illness. (That's why we pay NI contributions)

I had no trouble at all with getting help from the relevant departments/agencies whilst unable to work.

Private message if you wish to discuss further.

Owen

[johnw1952 in reply to owenm]

Thanks Owen

[sailor]

Hi John. You have had some sound advice from the others. I have had ITP for 20 years with only 1 bad nose bleed otherwise steady count around 10 and no medication unless necessary for surgery.

The answer is keep positive and live as near normal a life as you can but be mindful of the dangers of excessive sports or dangerous pursuits that could cause you harm. Do take Dizz's advice and join the support group and do not be frightened to question your haematologist on his knowledge of ITP. The support group have advice on the centers around the country that have experts.

Keep your pecker up. Sailor.

[johnw1952 in reply to sailor]

Thanks Sailor, there's so much info and advice to take in but it all helps. The worst right now are the huge blood filled blisters in my mouth especially on the tongue, which makes eating and speaking difficult.

[sailor]

John, These will go with the mouth wash etc. It does take a little time. Never be afraid to ask questions. There are many contributors to this site who are regulars and can provide help, support and information that no doctor can, because they have been there and know what you are feeling and going through. Good luck and hope they go down quickly. Sailor.

[toolski]

hi john youl be worried sensless i know i was,i am a self employed carpetfitter and i am forever banging my head under stairs or just getting my body knocked about every day,i end up black and blue but i manage no problem,yeah the mouth blisters are a real pain when they appear,i tryed some of the medication they recomended but nothing worked for me,also the side effects seemed quite bad for what little help they were doing,,,i just ignore how many platelets i might or might not have now as each doctors appointment usualy dissapointed me with no platelet count to talk of,,,i am more upbeat about life now and am getting on with it now without worrying too much...i hope you make a recovery or find a way that best suits yourself to deal with this annoying efliction

what do you work as if tou dont mind me asking john?

[johnw1952 in reply to toolski]

Hi Toolski, thanks for that. I reckon I've had this condition for a while, just didn't know until the severe blister episode. looking back, I had occurrences of that previously. So I think that I'll carry on as before but now being a bit more careful. Architectural/surveying work so on sites a lot sometimes with dodgy H&S conditions!

[swheels]

Hi John, I have lived with ITP since I was a baby at 2 years old, I'm 42 now. To start with the steroids will be given to you in a high dosage but as you start to respond it will be reduced, there are some nasty side effects from them, insomnia and knee cramps to bad heart burn and you will bloat up around the face. I would ask for omeprazole to help with the heartburn, as this is the only thing that keeps it under control. If the blood blisters are preventing you from eating comfortably as I can imagine they are, try soups and drinks like complan that help keep you nourished while having difficulty with solids. The blood blisters will go soon and the mouth washes will help too. The support page is a god send and new medical info is always updated. You can lead a relatively normal life, I have only had a few blips in all the years I have lived with this disease. It's mainly strong viruses that can set off a reaction as the immune system has to work extra hard. I have the flu jab every year and pneumonia and meningitis vaccines and also a HiB vaccine every few years. These are mainly because I had a splenectomy and appendectomy when I was 3, but I recommend the flu jab as I rarely get colds in the winter now which helps keep the platelet count up. I'm running at 20-25 but went down to 4 when I was 27. I hope your mouth heals soon and don't be too frightened of the future, the treatments have moved on leaps and bounds. As long as you monitor your warning signs, i.e the rash on your skin, and act on it, you will be fine. Kind regards to you and get well soon, Sheila

[johnw1952]

Hi Sheila, wow your case makes me feel like a right wimp! It's the practical things that really help as the blisters are so b. miserable. The longer term is looking brighter thanks to your and the other supporting advice. Thank you so much, John

[NickyD]

HI John. I am self employed and was diagnosed with ITP with a low count like you. I tried SEVEN different treatments before finding one that worked for me. My count has ranged from zero to 1400 so it has been a roller coaster of a ride. One thing that you may experience is fatigue. Lots of us ITP sufferers say that we feel tired more often than before. When I bruise I think of toolski who ignores his bruises and I say to myself " the bruise is not the size of a dinner plate so nothing to worry about". I also had my spleen out and take penicillin twice a day to offset any infection. Flu jabs are a must if you have a splenectomy and they do work to keep the flu and colds at bay. You are not on your own and can come on this site any time. Mouth blisters, petchiae and bruising are the start of your journey. High doses of steroids will increase your appetite. I was on 80mg of prednisolone per day and ate and ate and ate. I blew up like a balloon and I came off steroids over a year ago and so far have lost 3 stone in weight but have more to shed. There is no sure fire cure so you just have to hang on in there until you find something that works for you. You will get lots of support from other ITP sufferers and we are happy to answer any questions you have as far as we are able. NickyD

[johnw1952 in reply to NickyD]

Hi Nicky, I'm realizing what others have gone through and my situation pales into trivial, at least so far! Once the blisters have gone I think that I'll feel much more positive about the future. It's incredible what a help your and others advice has been and amazingly, how little practical help the GPs give. Thank you so much.

[NickyD in reply to johnw1952]

Hi John, GP's don't know a lot about ITP so cant help. My advice for you at this point is to set up your own excel spreadsheet. Write down the date of each consultation, the medication you are on, the dose of the medication and your blood count. Keep a track of it yourself. My consultant has often asked to see my spreadsheet together with the graph I have also kept showing how my count has changed with the changes in meds and doses of meds. It summarises everything very quickly. Otherwise you have to sit there while they go through pages and pages of your notes. Hope that helps and remember being frightened of ITP is never trivial. NickyD

[virginiabranscom]

Hi John, just adding my voice to the other ITP people and sending my support and best wishes. I was diagnosed in 2000, went through 4 years of WinRho, splenectomy, no treatment for 8 years, then this past couple of years a series of different treatments for suddenly very low platelet counts. Keep your whole health as good as you can and it will help your ITP. Also check out the US support site PDSA.org Best of luck!

[kered in reply to virginiabranscom]

Hi John,

Most of us with ITP were scared when diagnosed but eventually you will come to terms with it. All those drugs whose names we cannot even pronounce suddenly appear . I agree with Virginia in suggesting the PDSA site,plenty of information there from an area with many more ITP patients than in the UK.

One particular piece of advice I found very useful when I was scared ,depressed and upset over 2 years ago was posted there. It can be found at PDSA.org (the .org is important). At the top of the home page click on to join the community, then Discussion Groups . It is free to register. Go to Adults with ITP, and at beginning is Newly Diagnosed and Frequently Asked Questions followed by the first topic Excellent Advice posted in red by Sandi. Information and knowledge is the key for you as most health professionals and GP's have little knowledge of ITP except very basic facts so assume nothing and make sure your Dentist knows. Good luck on your journey and we are all here for support. Derek

[johnw1952 in reply to kered]

Thanks Derek, am joining PDSA right away. Excellent site on Facebook also - amazed at the worldwide community spirit and camaraderie. Thank you very very much. John

[johnw1952 in reply to virginiabranscom]

Hi Virginia, please accept my sincere thanks for all the help and advice given here. It has helped me understand what is happening and seeing the way forwards. Just want to keep the mouth blisters at bay!

[toolski in reply to johnw1952]

Just dont be to hasty in letting the doctors take your spleen,they seem facinated in removing a perfectly healthy organ for god knows what reason,i met a cancer patient who had been instructed to have his spleen removed also who showed me some intresting facts on spleen removal,,,,most of which were of no help to the patient,,,,i was a day away form having mine out when i spoke to this gentleman then refused to habe the op,and was told from the head of glasgow heamotolgay at gartnavel to leave then as this was there way of treating itp,,,,i gave up then after a low platelet spell my local gp refferwd me to stobhill glasgow where the old doctor there said i had done the right thing so dont take the first bit of advice you recieve as 9 times out of ten it could be wrong

[janeyjohnson]

Hi john,

I have had ITP since i was 9 years old but only formally diagnosed last year when i was 45 years old.

The support from the ITP support association and the PDSA has made such a difference to my life. I no longer feel guilty for needing to sleep more than anyone else, i just acknowledge it and pace myself better. I no longer feel as though i am clumsy for always having so many bruises and i no longer feel as though i must have some mental illness, as feeling depressed is part of my condition. It has also explained some serious medical problems that i have had and other conditions i have.

Knowing what is wrong has changed my life for the better, and because of all the advice and support, i have been given i feel the healthiest and happiest that i have ever felt.

I feel stronger and more informed now to face the seriously low platelet counts as i am part of a community.

[artytransplantee]

Hello John, this is to add my best wishes and support, as someone who was diagnosed with ITP just over a year ago. When I was first admitted to hospital - with big bruises, petechiae, bleeding in the nose and mouth - I was shocked and very frightened, so I have some idea of what you are going through now. I've found the ITP Support Association a good source of help and support. They have a quarterly newsletter and you can send off for their information leaflets.

[Hidden]

When I had the mouth blisters I was given liquid tranexamic acid to swish round the mouth before swallowing it. It seemed to dry up the blisters quite quickly. It tastes nice too, like pear drops.

[salmagal]

Hi john hope you have managed through the blood blisters they can be very uncomfortable I was given a mouthwash I have just been taken of Nplate and have had steady count for 6weeks now hoping you are through the worst now