What's so bad about this?

So i was diagnosed this month. Had the massive bruises and red dots on my legs. Had the weak and achey back. The migraines... Been in and out of the hospital all month getting the immunoglobulins and donor platelets, started rituxan and we managed to get to 86000 from under 5000 but then they dropped again to 18000. Today they said i was at 20000 and i go back monday to see where they are again.

I'm starting to become confused as to why itp is such a big deal? It seems to me ppl live with it alright. I feel like i should just quit getting treated because i feel fine. I mean i get tired and sore but i take homeopathic stuff that works pretty well. They have me on prednisone and it just makes me feel crappy and makes my jaw clench all day.

I understand if my platelets are low and i get injured it can be critical but that's life for everyone i feel.

What am i missing? What should i be concerned about? :huh:

Well, everyone is different. Some people have serious symptoms at low counts and some do not. Most people treat accordingly. There are some that do not treat, but that usually comes in time after a person knows how and what they respond to and how they will handle the low counts.

Some doctors overreact and some are quite calm. The reaction of the doctor has a lot to do with what goes on as far as hospitalizations and treatments. I think most can agree that the treatments are worse than the disorder in many ways. It's not always a big deal - again, a lot depends on the doctor's demeanor and the patient's emotional response.

It seems like you are having a lot of treatments thrown at you very quickly and in a short period of time. That is sometimes unnecessary. No wonder you are tired of it already. Platelet transfusions are worthless for ITP - not sure why they'd be doing that if you are not bleeding.

The first day i went in i had a toe bleeding, fingers bleeding, gums and nose bleeds. Heh, sounds terrifying but that's all stopped except i do get bloody noses a lot. Idk...i want off the prednisone. It's obviously not doing anything but making my body stress out more with tension.

I mean why keep messing with my body with all this crap if they're just keep dropping over and over. Seems the meds are worse. I know a bone marrow test is high on his list and i just think it's pointless pain to go through. I've already said no to takin my spleen. Seems to not change much either.

I hope you know that you can't just stop Prednisone cold turkey. Make sure you taper. No one likes it but we've all been there. What dose are you on?

Many times the treatments do work, which is why they use them. Sometimes it takes a while to find out what you will respond to. Some get lucky on the first try, it takes longer for others.

40 now. Two pills a day. I was on 70. That was horrible. I guess he's trying to ween me off of it.

I was mentioning my confusion to mom about why this is so concerning and she just said because my brain could bleed.

The weaning isn't just for your bleeding. Going cold turkey from prednisone can lead to Addison's disease. That's what Sandi's warning is about. When you're on prednisone, your body won't continue to make the same amount of natural steroids it usually does. Then, if you suddenly stop, you have none. It's dangerous to deadly. Weaning lets your body start catching up with its normal amount of self-made steroids. Be careful. By the way, the withdrawal from steroids can be miserable. If you find you don't need them at all, however, it's worth going through that to get steroid-free.
Norma

Actually, reading my patient information leaflet enclosed with the tablets.... the long and the short of it, going cold turkey with steroids could be fatal. I am not joking.

The first experience with ITP often is the worst because we don't know what is happening to us and yes your mother is right in that you could potentially have brain bleeds that could be fatal. I am not trying to scare you at all but help you understand

Some of us respond quite calmly to ITP. I have been diagnosed with it now since 2004. I haven't had it all that time but had about 6/7 episodes of it. I know what to expect now - i think. Though am well aware through research etc it could all change as indeed the name has for me because originally was diagnosed with idopathic where as now it is Immune.

You will find varied experiences on here of how people cope with ITP but I think most of us find the tapering the hardest as you have commented on. I am now down to 5mg a day from boxing day episode and finish on thursday. I have had it pretty straight forward. The cold I have right now is worse than any ITP experience for feeling poorly etc.

You will soon learn to ride with it as such. It might be the only episode you have. This is a fairly good website and by hanging around you will find how we all manage it in our ways. I lost my spleen to ITP back in 1996 and that has been very hard at times. The common cold is more frightening to me now than a bout of ITP because of being on lifelong penicillan due to having had meningitis and 18 month later septic shock. Am lucky to be here - literally! But there aint a good support website for splenectomy patients to get together on for me to ask when should I be going to A&E..:sick: as don't like making that decision for myself.

But many of us do respond to ITP with a breeze. Just a few days rest in hospital etc and a moon face to show for it and counting the days to get back on the diet plans properly. Then the hardest bit is making it sound ordinary to anyone new in your life. Others on here really seem to suffer. Its pot luck. And at the moment you are at the beginning and learning it all.

Hope you stick around and feel better as such about it soon. As someone once said on here. Its an inconvience, thats all. Just sometimes can happen when you least want it to :silly: It is upto you how you decide to go forward as many americans it seems do use homeapathy etc. Am English so can afford the doctor with having a social welfare system.

I've got to agree with you, Fight... I think in most cases the treatments are way worse than the ITP. Not that you can totally ignore the potential dangers of very low platelets, mind you, but there are quite a few on here that prefer to take a more conservative "watch and wait" approach, and only treating when their symptoms get out of hand, and not just the count. There's even quite a few doctors that take that approach, though I think that's more prevalent in countries outside of the U.S. Still others have taken a more natural approach and often combined with "watch and wait" they give some alternative healing modalities a try. You might want to check out the Natural Treatments thread for more information on some of them.

Homeopathy has put my daughter's counts at normal levels for 6 1/2 years now. Before I had discovered the best homeopathic remedy for her, and we were going the allopathic treatments (WinRho and IVIG), there were two specific homeopathic remedies that very possibly saved her life. (And, if I could do it all over again, I would never have allowed those treatments, as they weren't helping her, and she was very ill and uncomfortable from them.)
The first homeopathic remedy was Apis, made from the honeybee. It brought her out of an anaphalactic shock reaction that she had half an hour after leaving the hospital after her first ever treatment(WinRho). Just a little bit scary! The Apis worked far better and quicker than the Epi pen they used on her when she later had a second anaphalactic shock while in the hospital, hooked up to all the monitors.
The second remedy that saved her was homeopathic Arnica, when she bonked her head hard just a few days after diagnosis, and got a giant hematoma on top of her head, plus a blinding headache. The Arnica stopped the pain and the CT scan showed that the bleeding stopped. The Arnica helped to reabsorb all the blood and the swelling all went down within the day. This was with a count of 8k.

There are many roads leading to the same place. Be sure and explore all your options.

Rhianna said:
It is upto you how you decide to go forward as many americans it seems do use homeapathy etc. Am English so can afford the doctor with having a social welfare system.

Rhianna,
I think you misunderstand our system here, as well as people's reasons for choosing homeopathy. While we don't yet have a social welfare system, if you are at a lower income level, you will probably qualify for free medical care, especially with certain conditions. If you are middle or upper class or have private insurance, though, you may be out of luck. When my daughter had ITP, in California, anyway, all children with ITP were completely covered by a certain program (the name of which is slipping my mind at the moment). It didn't cost us a cent, but it sure cost the taxpayer's a great deal of money! They were giving her IVIG every week, to the tune of $13,000 each infusion, not to mention all the staff and hospital costs.!!

I don't know of any insurance companies that will pay for homeopathic care, though. A few do cover acupuncture and some cover Naturopathic care, but that is few and far between. Most people in the U.S. who want to seek out alternative health care must pay for it out of pocket. Which is a shame, as so much of it is truly preventative care, and overall, is very, very inexpensive compared to what the insurance companies are more than willing to reimburse allopathic care. So, people aren't going to the homeopath, just because they can't afford to run to the doctor. Quite the reverse, really. They are willing to pay alternative healers out of their own pocket, because they either aren't being helped significantly by any of the more traditional treatments, they are unhappy with the awful side effects, or they're scared about the potential and unknown side effects of the allopathic treatments.
Too, some have had good experiences with alternative modalities helping them with other things, so it's quite normal for them to seek it out when they encounter ITP.

I'm actually surprised that more in the U.K. have not tried homeopathy for ITP, as it seemed it used to be pretty well accepted there. After all, the Royal Family has used homeopathy for many years.. Anyway, I was just surprised by your statement, that's all.

April

Rhiannon, I was told that if I got a fever, I was to go to the doctor or ER right away. In fact, we just got a new doctor and even he told me I was to go see him with any sign of one. Fever or sore throat, go to ER/doctor. Of course, I'm not one to run to either right away. I wait to see if it goes away on it's own. Hubby gets a little perturbed when I do that, but ....Well you get the picture. If the fever was a high one, then yes I'd be going to the ER.

I've been spleenless since /06 and have only been really sick once.

April
Sorry I guess I let my prejuidice get in the way in that whilst there is a valuable role in homeopathy treatments I for one don't really trust it because for me the way it is handed out to people is not regulated enough etc. And the arguments on here seem to highlight people use the option rather than the medical approach because of cost. I know that don't mean everyone makes up their mind on that basis. It is just how things appear to me from what I have read here. And that people resort to homeopathy after medicine has not worked effectively which am not blaming them for exploring. No offence meant there by the way;) . Not everyone has a bad experience with IVIG. I get anemic symptoms which go away as soon as it finished. I don't get the sickness etc. They stop that treatment I believe where I am straight away because one year I was just only beginning to feel quite right and they stopped the bottle instantly. And left it 4 hours before continuing. I have never been sick on it etc. It could be due to how fast the dose is given. I have five bottles a night over 5 days.... Everyone has different side effects but you all write about going home that day the IVIG is given. I have always been an in patient and never gone home on the day/night it is given. I may have been just lucky but timing might be an important factor here which I wish the american and the UK systems could read and find out if there is more to it than just plain luck....

CindyL
Having had meningitis and septic shock I guess am just that bit more anxious about getting it right. When I get the goosebumps I get a little bit more nervy. A&E aren't always happy when I turn up. One doc was positively unhappy almost once. After what felt like some time saying why am there I remember my discharge form from earlier on in the year. He kind of began to mellow when he read it. Then I mentioned my hematology consultant and mellowed a bit more and admitted me for observation... I went last year because the General Practioner Doc sent me home without the needed amoxocillan. I went upto A&E next day and within the hour given the needed dose. I went home and swapped General practioners and now back at my childhood practice.:-}

Began to get worried friday night when the goosebumps started with this cold. But thankfully they have gone. All the instructions say if shivering ring the ambulance... somehow I find that scary to actually do. Am relieved you have been told that too though like I say all the information says so. Just that some A&E docs are better than others. We are not there for a free ride so to speak

hi my count has been 11 to 19 for 4 years with no treatment at all.the doc takes blood once a year thats it .i find i bruse easy so im careful ,allways very tired i just live with it. hope this helps

Aaaaaah! Sorry everybody! I had to reset my password cuz i couldn't log in!

Everyone's comment helped a lot! Thank you!

My count is still fluctuating. I do my 3rd retuxin wednesday but i plan on talking to my dr about stopping it because i don't think it's really changing anything. As well as weaning off the pred.

As for the bone marrow test, what do you think? Have any of you found it was worth checking?

It just seems as long as i'm not as low as ten or under i can just manage alright with my daily things. I use arnica gel and lil tablets for pain. It works enough for my back and shoulders. I just starting going to a chiropractor, too, so i can at least try to relax my body.

Rituxan doesn't work quickly, so it's too soon to expect a response. The average response time is 4 to 12 weeks after the first infusion. As for the Prednisone, tapering sounds like a good idea.

A bone marrow biopsy is not necessary for ITP, but it can give you peace of mind. It is an invasive test, but isn't all that bad. It took me 20 minutes in the doctors office.

Be careful with having adjustments to your neck if your counts are low. There have been reports of blood vessels tearing from adjustments and having low counts could be bad. Pain usually isn't a symptom of ITP, but could be stress related or an underlying autoimmune disorder/inflammation.