TOPIC:

Time for a thaw? Aruba sounds like the place to do it!

Hello everybody

I´m here to say hello. Best wishes for everybody here. Actually Im undergoing a Dexamethasone treatment. On my 4th (fourth) course. All I can tell is that it has not being easy. Dealing with the secondary effects of the medication is being fairly hard.

My hematologist suggested me to remove my spleen but I rather explore other methonds like medication. Any advice will be very appreciated.

Thank you


Best wishes and health

Reboot

Hi reboot,
Just a quick comment on splenectomy which seems to one of the first things suggested after being on steroids . Those things can be nasty and I remember feeling my brain was in a fog and at that time was unable to make any rational discussions for quite a while. So I read as much as I could about having a healthy organ removed on what could of been a futile treatment and take antibiotics for the rest of my life. I decided not to have a splenectomy as there are plenty of other treatments now becoming available. The prevailing medical attitude depends on where you live ,what you can afford and several other factors. So far I have not regretted my approach but ultimately you alone can take that step. So my advice is to hold off for now . There has been a great deal of discussion and personal advice in several topics in this Discussion Forum.
Best of luck, Derek

Reboot!

Excellent advice from Derek! Keep us posted on what transpires.

Jeffrey

Hello Dereck Jeffrey

Very appreciated for your advise. I will keep in touch for my treatment with Dexamethasone. Positive attitude above everything. I've been dealing with lots of hiccups, mood swings, and lower defenses. Hope this 4th course be more friendly.

Once again

Best wishes, health and good vibes

Reboot

Hello everyone,

I am new to this . Diagnosed in 2012. Man cave is a great idea. My 15 month period of remission is over. Back on steroids. Doing the homework on what can be next. All of this is good info. Stick together, be strong.

Bob

Bob,

I was diagnosed in 2012 too. Not doing anything right now. Just had my first crash and I have rebounded naturally. I was down to around 15. I am getting another CBC on Saturday. I am around 25 now.

I am still active and doing what I want to do. Pred did not work for me except for a weight gain!

Jeffrey

Hi People

It has been more than 2 Years since I have come here but that more because I have been busy. I am a 27 year old guy and have had ITP for about 4 Years now. I have tried everything allopathy or conventional medicine has to offer except splenectomy and nothing has really sustained for a while. For the past 2 years I have tried homeopathy and that has also,not really helped much. My counts are generally below 10k and the highest I have hit in the past 2 years is 18k.

I did manage to do an MBA in the past 2 years and have played sports( while obviously being a bit careful) and managed my routine life without much of a problem ( I did not feel tired or fatigued out and I personally believe it is all in our mind) . That being said I am still looking for treatment options as my counts are not really at a safe level but am not very keen on surgery.

Any advice would be appreciated

Regards

Madridista wrote:

Hi People

It has been more than 2 Years since I have come here but that more because I have been busy. I am a 27 year old guy and have had ITP for about 4 Years now. I have tried everything allopathy or conventional medicine has to offer except splenectomy and nothing has really sustained for a while. For the past 2 years I have tried homeopathy and that has also,not really helped much. My counts are generally below 10k and the highest I have hit in the past 2 years is 18k.

I did manage to do an MBA in the past 2 years and have played sports( while obviously being a bit careful) and managed my routine life without much of a problem ( I did not feel tired or fatigued out and I personally believe it is all in our mind) . That being said I am still looking for treatment options as my counts are not really at a safe level but am not very keen on surgery.

Any advice would be appreciated

Regards

Hi Mad!

I am just a little younger than you! Well, more than a little! I am active, swim, bike, run etc. I do not treat. I try to stay fit and eat right. Works for me. The tiredness is real at least for me. It was one of my signs that led me to ITP. You are very right in the mindset that you have to not let it bother you. You just live your life and keep right on going! It is great to see that you are doing that! What can any of us really do? We live with it and manage it, I am not going to let ITP manage me! Where did you get your MBA at? I graduated from IU Indiana University.

Jeffrey

Hey guys

New to the forum so I thought I would pop in here to say hi.

I have to admit that seeing other suffering from fatigue has made me feel better about myself.

I was diagnosed when I was 17 but didnt have any issues until I was 32 after 6 of the most stressful months of my life.

Ever since then I have suffered on and off with fagitute and with 2 small children it can make life very difficult.

I am due to see my hemotologist this thursday as my platelets dropped to 5 and I am currently on 80mg of preds and I am going to ask about the fagitute and see what she says

Keep us posted on the fatigue! I am very interested on your Hema's take on it.

Hope you are doing well!

Jeffrey

Fatigue seems to strike almost all of us. My hematologist said that they are starting to recognize it as a symptom of ITP.

Yes, fatigue was the main reason I knew something was wrong at first. Went to my medical physician, checked my heart health and my LDL levels, but they seem OK, even for a non-athletic type guy. I noticed my fatigue was ruling me out. But he also checked my CBC test and my platelets were too low, around the 50,000. That was back year 2012... I was finally diagnosed May that year.

Now I´ve been four months in a row with Dexamethasone. Feeling, don´t know... But I can actually do my job and hobbies. Dealing with it... Trying to avoid splenectomy, my Hema wanted at first. Next appointment will be after month of August...

Fatigue, it comes and goes... Even I´m managing my weight for the better. Also, it could be advisable to manage time of sleep, taking naps when necesarry. Rest, excersice, and healthy diet that´s what Im through...

Health and Good Vibes

Reboot

You have to remember guys that as part of ITP you will be getting less levels of serotonin in your body which will effect both your mood and can cause bouts of fatigue.

On top of that I do believe that state of mind and overall health also plays an important part.

Hey Guys. My name is Adam, I'm 31 and I was diagnosed about 2 weeks ago when i went in experiencing bruising and burst blood vessels. My count was down to 5. The Hemo put me on a strong dose of Prednizone which boosted my count to 17 the next day but then tapered down to 11 within the next 3 days. Hemo then recommended the ivig since my count was so low. Just finished the 2 day ivig treatment and had a count of 72 after the first day. Still have to wait a couple days to get my next test and see where I am at. I of course have learned to not expect my count to stay up from the ivig but i am wondering how long it will last. Seems to be pretty different for each person. I am also wondering how often i should be testing my count moving forward.

As far as man issues, one question i had was I got my wife pregnant right around when I was having symptoms and probably had a low count. I am curious if this creates any potential risks for the child.

The other thing i have been wondering about is that I have had major back problems the last 3 years with lots of sciatic pain. To treat this I looked into prp (platelet rich plasma) injections as a possible cure for the pain. Now diagnosed, I am wondering if the ITP has played a role in my slow recovery from my back issues.

Glad to have this site as a great resource. Hopefully I can find a treatment that will work for me. Sounds like it will be a long road ahead.

Hi Adam and welcome to the forum.(there's so few of us guys on here) While having ITP is not fun, I'm glad to hear you are responding to treatment so well. As long as your counts stay above 50 most hematologists are ok with that. As far as testing is concerned, once they get your platelets stabilized most hematologists will check about 3-4 times a year. Look around this website, there's so much info on here and it's a great place to vent. You might also want to start with the newly diagnosed section.

As far as the possibility of your children having ITP. All autoimmune diseases have a risk of being passed on.

As far as platelet injections or infusions, they are not recommended because people with ITP destroy them as fast as they are infused so they don't do much good. And for the back pain, all autoimmune diseases compromise your immune system and slow our ability to heal so that's a maybe.

Once again welcome

This topic is relevant for me, since I've got multiple problems with my spine, including a perineural cyst at L5/S1 that is likely the cause of some neuropathy in my legs and stenosis in my neck causing cervical radiculopathy.

So I'm wondering if such problems are more common among people with ITP, and how or if having ITP affects the value of various approaches to treatment. I'm also wondering if recovery from a surgery to my c-spine may be affected by ITP. Any thoughts or experiences would be appreciated.

While ITP won't cause problems with the spine, it can cause issues with any surgeries or invasive treatments that are planned. First off make sure your counts are at a safe level, some surgeons are ok with at least 30k some are want it higher. Also ITP and it treatments can cause a much slower healing response to those therapies due to suppressed immune systems and lowered platelet levels.

Thanks. Good to know. My neurosurgeon said similar; she's happy if my count is about 70. Same with my hematologist. Neither mentioned the possibly slower healing response, however. Maybe that won't apply in my case. (What is the emoji for cautious optimism?)

As far as healing, it depends on what treatments you are on. Some drugs like Rituxan or other biologics can cause it.

hi

This is my first post. I was dx with Itp 4-13. My counts have been between 50,000 and 90,000. I have other immune issues HCV. Recently I was dx with a heat rash. When I first became aware that my platelet count was low I also had this same rash. My hematologist said it wasn't a petechia rash. Anyone else had this I live in Oregon so the weather is fairly mild year round.

(in deep manly voice) hello there.....

Glad to see there's a "man cave" around these parts!!!

I'm mid-fifties, an active, happy guy who one night in 2010 got a non-stop nosebleed. I searched online for "sudden onset hemophilia" at three am until the blood covered my keyboard. Then the gums started too....how inconvenient! A friend who happens to be an ambulance driver took me to the emergency room, were I was to stay for almost six weeks at around $50,000 per week, all-inclusive rate, I would find out later. Thank goodness for my mediocre health care plan; I was on the hook for only half the "full fare."

Since I could not, would not, "clot" they cauterized my nose, but I swallowed blood for days, tubes hanging and my mind racing with Dexamethesone.

A horrible intro to a weird disease.

EVENTUALLY with help of a peer review system ("the cancer board" even though it was ITP) the doctors figured out the drugs I responded to (WinPro, I think was the fourth or fifth course of treatment.) and Dexamethesone.

Let me tell you about The Dex, my Salvation! Wonder drug! A normally upbeat, optimistic and chipper guy, I became SUPERMAN with Dexamethasone. Only stronger. I was ready and willing to save the world. From my hospital bed!!!


Four years of remission....my hemotologist says I will never have to see him again due to consistently normal platelet counts; 120,000-150,000 range. GREAT! I am free of ITP!

Not quite, Jim!

Round Two began in November 0f 2014, with the tell-tale patechia, slight gum/nose bleeding (not as bad the second time) and all-over bruising. I spent "only" three days in hospital for IV-IG and Prednisone. No Dexamethesone for Jim in Round Two as it caused a MAJOR psychological attitude enhancement in Round One.

Last week began Round Three. Same symptoms so I know the routine, blood count >1,000 and 100mg Prednisone daily since 5-22-15 followed by 48 hours in the hospital for my IV-IG. Platelets at 12,000 "and rising." So far the Prednisone is causing only minor inconveniences. I realize I am no SUPERMAN, but I have an even more positive outlook than usual. Sleep comes only via the couch and a blaring TV at one am.

Day after tomorrow is Monday (6-1-15) my first try at Rituxin, a little anxious but hopeful. RX in hand for Demerol, as Doc says it may cause "the jitters" I haven't found info on this just yet. Injected Demerol, I read the little label. Do I do it myself? When? Where? Will I reach around to my buttocks??? What if I fall and bleed out? So many questions, so little time....

ITP is getting easier/more predictable for me, not the scary, weird, major life-complication it was initially.

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I'll check in here occasionally. Glad I remembered this support group last week!

Hi Gary,

In Nov. of 2014 I had Round Two of ITP; after a week when counts were good again I had cellulitis, a very painful/sensitive rash on my ankle/shin. Treated and disappeared, it was probably unrelated according to my hematologist but he couldn't rule it out.

The pain was so severe just sliding pants on hurt sooooo bad. Cellulitis can definitely cause MAJOR problems if untreated or misdiagnosed so don't avoid the doctor!!!!

Here's a link to a fairly typical picture of cellulitis on the shin (not mine, I didn't take pictures!).......

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--Jim in Georgia