is it fatal ?? new here

[exxxon]

new diagnosed with I t p .. want to share information with others .. scared to death … jimmy

[Robert1959]

Hi Jimmy,

The chances of dying from ITP are very, very rare so do not focus on that. From your message you have only just begun your experience with ITP and you will learn that it is a condition that can be managed rather than it taking over your life. It is probably hard for you to comprehend that right now but once your specialist had determined a suitable course of treatment for you, you will return to a relatively normal lifestyle. Keep us posted on how you progress through the various treatments and we will pass on our personal experiences with each of them as best we can but there is no need to be scared as there are far worse illnesses than having ITP. Who knows, you may even be lucky like I am and go into remission. Regards, Robert

[exxxon in reply to Robert1959]

Robert thank I feel better / on my way to the Philippines in December when my doctor pulled me back from the air port .. platelets were 14 thousand so I guess I would have bled out ??? 9 had no idea ) I am 72 and in great shape .. on prednisone ( 33000 ) started promacta yesterday . they want to wean me off the prednisone .. I had been drinking 3 / 4 beers daily and Tylenol pm and my prostate med ( TEROSZIN ) for 10 years and my platelets were always in the 75 / 85 k range , they said that was normal for me ??? insane !!! TERZOSIN CAUSES ITP as does the Tylenol pm .. and the booze is a platlelet killer .. I booted all of that junkand feel I gave itp to myself ?? thanks again Robert and I feel so much better .. needed some to talk to .. I am a retired from the phila . fire dept and currently in florida till this gets stable ??? tell me about you ?? you have itp ?? you afraid of the meds ?? whats your count ?? what meds you take ?? etc. look forward to hear from you Robert .. jimmy .. 941 979 7762

[Billmox]

Do not worry, ITP is a bind in that you may have to refrain from say sports such soccer or football or ones that could lead to heavy falls, but you can continue a normal life, as I have posted before in my case I carried on working as a front line EMT till retirement after 33 years and my platelet count was and is around 14 - 25 at any given checkup. I have also had radical surgery for cancer and due to fantastic team. I was diagnosed with ITP at 35 how long I had it before then must have been a few years, I now 74 and hope to keep going for a bit longer yet.

The other people on this forum will have the same experience and advice, so fear not.

[exxxon in reply to Billmox]

thanks billmox I feel better as this just caught me off guard … I am 72 and in great shape ( walk 6 /7 miles daily and work out ) I was on my way back to the Philippines in december when my doctor told me don't go .. platelets were 12 thousand .. I would have bled out so I am lucky .. prednisone has me at 32 thousand but they are weaning me off and I started promacta yesterday so I am hopefull to stay in a safe zone .. very concerned that all these meds will kill me ?? you have had this a long time .. what is your count ?? what are you taking ?? are you brusing .. are you a vet ?? I am in florida till I get a go signal from the doctor … what do you think of spleen removal ?? there is a scan to see if it will help or not ?? I retired from phila. fire dept. in 1989 .. also an emt …. small world bro .. please stay in touch with me as I can find no one to talk to about this and again thank you for boosting my spirits .. jimmy … 941 979 7762 … I drank 3 /4 bottles of beer daily and wine and tynenol pm .. and my prostate med TEROZSIN ( which causes itp ) all this shit taken for 10 years so I think that's what got me itp … I dumped all since December and was shocked that the TERZOIN causes itp .. hope your not on it

[Billmox in reply to exxxon]

Hello again Jimmy,

No problem, as it is I am a vet, but never went into combat, spent 6 + 2 with the reserves, spent all my time in Germany in the Cold War, '62 - '68, radars and radio Arty Intel. Some G troops went to Aden and Borneo, just a matter of luck if you was picked or not. Went into the Ambulance service 1970, after driving a bus for a couple of years.

In my case they have removed my spleen which upped my count to around 32 from ten, but it can be 14 - 25 on average, I now only see my hematologist yearly now was about 3 to 4 times at first, but he has told me that I can contact him sooner if I feel I need to. The thing that having no spleen, means that your natural defences to infections such as pneumonia and meningitis and Heb B, C should be given vaccinations for, because of your now missing T cells, and I also take 1000mg Pen V a day for this reason also, I am fortunate that I live in the UK, as far as the cost for this goes I get these free but I paid for forty years in my taxes for this, but any one younger would also get medicines free for this as well, check the ITP sites like this on for more info. Given the above I take no drugs what so ever for MY ITP, I have been given something to boost things up for major surgery.

As far as travel is concerned I do not see how it would be a problem in its self, apart from say getting insurance, I have never heard of ITP drugs harming, but of course allergic reaction's could happen to same as anything else, your doctors would be aware of this. I do get a bruise now and then and wonder where the hell that came from, but not often, and a nose bleeds if I blow to hard, I keep a stock of Tranexamic acid tablets, which I can take for a couple of days if and when I need to I would discuss this with your doctor's.

As someone else has posted there far worse conditions, there is no reason for you to still work out and carry on walking, as far as that goes your are far fitter then me.

Any way all the best to you,

Bill

[exxxon in reply to Billmox]

billy .. 14 / 25 count here they want to give you a transfusion ?? what are you taking to keep the count up .. none ??? don't platelets go to zero and you bleed out ??? your count seems awful low bro ??? no drugs I like that but afraid .. keep talking to me .. jimmy

[Billmox in reply to exxxon]

Hello again Jim,

Yes it is true, I take nothing for my ITP on a daily basis, been that way for 36 years just Tranexamic acid if I have a nose bleed, for two days, but that is not often. My

Hematologist, who is at my present hospital, trained under same team that treated me, they are based at Cambridge University Hospital, Addenbrookes, Cambridge.

He has said that if I were somebody else he might be slightly worried with my count but I cope normally, whether they have been using me as an experiment I don't know, it is the same with my Bowl cancer ( in remission 5 years ) T2 tumour, it has led to me having a colostomy, because my Platelet count was 14, having Chemo and Radiotherapy was out, I had the surgery, and I saw a nurse a couple of times since and I take no drugs at all for that.

Your Doctor's will look after you and you can have input as to info that you can pass on found from this site.

All the Best

Bill

[Lynney11]

I was diagnosed almost 10 years ago when a routine blood test found my count was 60. That was deemed a safe count so was monitored for 5 years when my count dropped to 29. That is when treatment started. Firstly, Prednisolone made my count rise initially but it rapidly fell. Then infusion of IVig which made my count rise with it falling, then Rituximab which had the same result. Next on the list was injections of NPlate (Romiplostim), which worked in that it kept my count fairly stable at 40-60. I self injected every week and was pretty happy with that, but I was restricted in that travel was very difficult cos the injections had to be stored in a fridge. After a little research on my part I discovered that there were tablets (Eltrombopag - also called Revolade), which I tried. Success!! My count rose immediately to over 400; after adjusting the dose to 25mg daily I am now stable at over 100. In fact at my last check up I was told my count was now normal at 150 - not sure if I am in remission, but I will find out at my next check up in April. I just get on with life, visiting the gym 3 times a week, Pilates and tonight trying a stretching class. I have a very positive outlook and never let my ITP rule my life. I regard it as a condition I have, not a disease, not life changing and above all, never frightened by it. Your journey has just begun, good luck in finding something that makes it bearable.

[exxxon in reply to Lynney11]

lynney thank you so much .. are there side effects with revolade ?? they put me on promacta the other day so I am praying I get a good steady bounce .. ay 40 / 50 count were you brusing ?? yes my travel has been stalled so I wait … relative to any other serious disease this is really not bad ??? stay in touch and thanks again .. jimmy

[Lynney11 in reply to exxxon]

The only side effect is dry eyes, and a little acid indigestion, although I was told that it could cause cataracts to form in the eyes. That was one of the reasons I wasn’t offered it at first. However I have had both cataracts in my eyes removed so that does not pose a problem for me. A check also needs to be kept on the liver as problems could occur there, but after 2 years I haven’t experienced any liver problems - all counts are normal. As for bruising, I often bruise and sometimes they are big ones! As long as I am careful I don’t have too many. My haematologist told me that bruising comes with ITP, so it is perfectly normal to have some bruising. Good luck.

[prudencepayes in reply to exxxon]

Hi Jimmy. Revolade is the same drug as Promacta. They are both eltrombopag but for some reason they have a different brand name in the UK to US. My experince was very similar to Lynney. My ITP started off quite slowly but eventually my counts were dropping to 8 (thousand) and i needed rapid treatment. After trying a variety of drugs the Revolade (promacta) worked dramatically and I am now on a low dose which keep my counts around 100-200. I have been told by my hospital in London that they are seeing 90% success rates with the drug. Remember it is not a cure but treatment, but it has still allowed me to live a very normal life and take a lot of the worry away. Good luck ! Let us know how you get on.

[Shneakyoleary in reply to prudencepayes]

Thanks for sharing, I didn’t know about name changes of same drug, it’s good to know when consultants are talking.

[Kyriak51]

II was diagnosed in early 1990’s, my platelets baseline is 30-80 thousand, not Normal normal range for those without ITP is 150-450 thousands. Who ever told you that Terzosin and Tylenol cause ITP is WRONG !!!! The “I” in ITP idiopathic which means UNKNOWN. Reread Robert 1959 post he is correct. Check out this sites educational section and learn as much as you can about our disease. Be well Georgia

[exxxon in reply to Kyriak51]

terazosin is listed in the warnings of side effects .. not all sites list it ?? Tylenol p m is also a plate killer and is also listed .. I can get you the site if you want .. I was 70 / 80 k for 10 years and the doctors ( V A ) said that was normal for me and I never knew till the mega drop ( 14 k ) b4 my trip to the Philippines which I would assume I would have bled out .. I did not know I had it .. stay in touch please .. jimmy

[sharroN42 in reply to exxxon]

Please do send the sites that state tylenol p m (and is that all tylenol?) damage platelets.

Thanks,

Frankie

[Kyriak51 in reply to exxxon]

The listed side effects of Terazosin are: weakness, low blood pressure, drowsiness, stuffy or runny nose,impotence, blurry or hazy vision, nausea, swelling or puffiness in hands, feet, or lower legs. NSAIDs like Advil, Motrin, antidepressants and aspirin interfere with platelet funstion and should not be taken. I take 1500mg Tylenol daily for arthritis pain with the knowledge of my Hematologist who certainly would have told me to stop. The VA doctor probably meant count of 70/80K is the baseline normal for one with ITP. You said your count was 70/80k for 10 years and you were not told that you had ITP, in this country that would be considered negligence and or malpractice. Please ask your pharmacist if Tylenol and Terazosin destroy platelets, they know more about drugs and their side effects than most doctors. Be well Georgia

[exxxon in reply to Kyriak51]

kyriak .. yes for 10 years I was at those levels and was told that was normal me ….. talking to an attorney next week … your 1500 Tylenol is ok .. I mean tyneol P M ……………. taking that for 10 years .. not good … 36k yesterday and only 7 days on the promacta .. dr. says he expects me to ramp up soon and cut me loose to go back to the Philippines .. pray !!! jimmy

[Kyriak51 in reply to exxxon]

Hi Jimmy, I’m confused are you saying your that your baseline platelet count has been 70-80 thousand for the past 10 years but was only recently diagnosed with ITP when your platelets droped to 14 thousand?

Georgia

[exxxon in reply to Kyriak51]

yes for the past 10 years I have always been between 68 thousand and 85 thousand .. I knew nothing of this disease till the big drop in nov. 18 and they always told me my low count was NORMAL for me ???????????????? what I found out was the TERAZOSIN ( for the prostate ) TYNEOL PM AND ALCOHOL WERE KILLING ALL MY PLATELETS ( I cut all out quickly ) so I guess I caused this event ???? doctors really bad news and they can kill a person … I have an attorney looking into my situation .. stay in touch … and stay well … jimmy

[Billmox]

Hello, again,

As a EMT in Philadelphia, you would seen a lot worse things then I as an EMT in Essex County here in the UK, shootings I think I only attended three incidents in 33 years and just a few stabbings, which have got worse since I retired. Lots of RTA's and the usual things EMT's deal with.

Bill.

[exxxon in reply to Billmox]

your in the U K billy so glad your ok … yes Philadelphia was a battle ground .. some times at calls to the projects they would shoot at us and we needed a police escort to get in .. I was in Vietnam for 2 years and phila. was worse .. jimmy

[Billmox in reply to exxxon]

Hello Jimmy,

Hope that you are well, sorry for the delay in replying, there are areas in the UK, council estates which are the same as projects, where you my get a TV or something tipped form on high. If there is anything relating to ITP, such information or type of treatments, that we do over here, I maybe can let you know.

All the Best

Bill

[exxxon in reply to Billmox]

thanks billy .. jimmy

[vernmary]

Jimmy, it is life threatening so you should be under care of a hemotologist so he can keep track of your platlets. I didn't know anything about this disorder until my platelets dropped to 3. Then they rushed me to the hospital where I was diagnosed and gave a massive doses of steroids and a transfusion of platelets. That brought it up to 20 and now, after being on 100mg of prednisone daily taking my platelets to 55 then to 112. I am going down now over the next few weeks on the prednisone and now at 80mg. I am hoping when I finish theses doses I will stay at an acceptable level. When the platelets drop as low as mine, 3, then you take a chance of an internal bleed that you aren't even aware of. Like a brain bleed. And I didn't even know it. I had just started bruising. So, I was lucky or blessed. Take your pick. Don't worry about it. Just make sure you are under a docs care. Best wishes Jimmy..

[exxxon]

vern .. got it … I caught mine down to 18k and that day I was flying to asia so I got lucky as I would have bled out .. I did not know … that was in December 2018 and they had me on 60mg. of prednisone then 200 danazol ( 200mg. ) and now on promacta .. prednisone is down to 15mg. now and see where I am at with no prednisone ??? hope the promacta 50 mg. can hold me up????????? currently at 55k but afraid of a trip back down ???? tomorrow I get a count ??? let you know …. do you bleed or bruise . I ihave several dime size blood pimple on my arms and legs that go away after a week … stay in touch .. jimmy .. r u in the u s a ??

[vernmary]

Yes, I'm in the USA, My platlets are normal no

w. Not taking anything. In Dec, all was well and my hemotologist said I need to be checked every 3 months. I bruised terribly when I was diagnosed. Had never heard of ITP. Was strange to me, but as he pointed out, I could have died that day and never knew what hit me. I am so thankful. Hope all is going well for you... Vern

[vernmary]

Just reading some of the previous posts by others questioning Tylenol PM as a cause of ITP. Idiopathic means, (not known) However, there are things that can wake it from it's sleep if you have a tendency to have the disease. That is why my hemotologist insisted that I not get a flu shot this time around. I had just been diagnosed with ITP and he said the shot just might awaken a sleeping giant. He has been right on target for me as he started me on massive doses of prednisone(100mg and tapering down) therapy of 4 months. That was last spring and now my platelets are at 278 and holding. I see him every 3 months and so far, I'm doing great. He said the 'trick' is giving large doses of prednisone to shock the system. Otherwise, small doses here and there just smack it a little. My body is back to normal now as I gained about 14#, lost that now, and had the moon face. That's also gone. So, to me, my hemotologist is a hero as he saw, he treated and he conquered. I am doing very well now..