I am from the u.s. And was just wondering if everyone on this line is from another country.
Are any of these itp'ers from the Uni... - ITP Support Assoc...
Are any of these itp'ers from the United States?
Written by
22-patience
To view profiles and participate in discussions please or .
40 Replies
•
Hi again, I'm from the northeast of England, our consultants seem to use prednisone and wait n see attitude. When my bloods went down to 7 I wasn't admitted to hospital I'm please to say.
Lin
Hi. Yes, I am from Latvia.
I'm from the Bay Area.
I'm English, living in Belgium.
Indiana here
Massachusetts!
I was just curious. Reading the out of country treatments for ITP seem a lot different than here in the u.s. Would be interested in hearing about treatment used here in the u.s. And what kind of doctors monitor ITP; primary care, hematologist --- just who. I have never been in remission and when I read about people going into remission I wonder just what med's they are taking. I have been on prednisone for years and believe me it has and is taking its toll. I have had a splenectomy, cateract surgery, mager skin problems, osteoporosis, gum and teeth problems------to mention what I can see. Who knows what it has done to my major organs and the way it has made me feel. The only positive is that I am still alive. Today I am taking 30 mg as I just had to have another IVIG. That is a lot of damaging medication. Then, again, trying to work my way down to a tolerable dose to lessen the side effects. This has been ongoing for eight years. Hard not to be bitter. Just have been awaiting that "new medication" that will rid everyone of this terrible disease.
What type of Physican is treating you at the present time ? How it worked for me was that my primary care Physican discovered my platelets were low after a routine blood test. He sent me to a Hematologist who tested me for everything imaginable. Everything came back as normal. One year ago I was preparing for surgery and the Hematologist put me on the most evil drug known to man, Prednisone!!! All hell broke loose and for the first time my platelets crashed and I was admitted to the hospital. My doctor said that they know Prednisone doesn't work but they have to prescribe it before they can prescribe anything else. Anyway, I was weaned off it after a couple of months. My platelets finally crept up a little at a time and about 3 months ago when my Thyroid medication was changed my platelets went up to 150,000. None of my 3 Physicans know the reason. I was told that the "I" in ITP means that the cause is unknown.
Good luck.
Wow sorry to hear that 22-patience but i totally agree with you and feel the same way im from new York and wonder about treatment....im in yhe hospital now and the doctors mentioned splenectomy but im uncomfortable with that idea...having the surgery did it do anything for your platelets please let me know
No, the splenectomy did nothing for me. Nothing!!! I am sorry I did it now. Makes me more susceptible to secondary infections, as we know. Choose wisely.
Thank you for responding to me 22-patience but its so crazy how i feel they are putting pressure on me to do that surgery ive been dealing with itp for a year now and they are saying i will live a normal life i told them ive read about ppl getting a splenectomy and they are sorry that got it done
I'm also from NY and am finally in remission after 8 months of prednisone to no avail. My hematologist decided to go with a 4 week infusion of Rituxan with a pulse dose of Dexamethasone during the first and third infusion. So far this has worked well. I would mention this to your doctors and see if they are willing to try this before jumping to splenectomy. Everything I have been told says that removing the spleen typically does not resolve the ITP. Best of luck to you all!!
Thank you will do....because the pressure the hospital is giving me about splenectomy is scary im ready for a 2nd opinion and some people are not happy they had the surgery
They say removing the spleen may not work but it might help
Absolutely go for a second opinion. In fact your doctor should recommend a second opinion. How low is your count? If you don't mind my asking.
It was a one yesterday I'm still here in the hospital today they gave me the IVIG and steroids
I've also ask them about maybe when I'm discharged if they can prescribe like an immunosuppressant to see if that can help stabilize the itp but they said the steroid with an immunosuppressant but I told him its not working because when I was admitted two weeks ago it didn't work
From California. They have never wanted to try Rituxin on you before taking your Spleen? I have been getting pretty much bi-weekly IVIG infusions since August and my hematologist wants to move to Rituxin asap because I'm not seeing improvement.
Hello:
I'm from the US, Los Angeles to be precise! This site is British. There is a US site, but I don't know the name of it. Im sure that somebody will post the name for you or you could Google it.
Take care and good luck.
I'm from Joplin, Mo. My hematoligist is just a few blocks from my house.. I also have been on the steroids for a while. Mostly by choice, because I also breastfeed my 15 week old baby. I have had ITP a little of a year now. I was diagnosed while I was pregnant with our youngest. I've never been admitted for my platelets. The lowest my platelets have personally been was 6,000. I'm currently taking 30mg of prednisone daily. Every time he tries to take me off we hit 10mg and my platelets start dropping again. He has also mentioned a splenectomy thanks the my insurance who doesn't want to pay for the rutuxin.
22-patience,
I am also from the U.S. Nice to meet someone else from the States here.
Ruth
Nice to meet you, Ruth. I live on the west coast and I do not know anyone personally who has ITP.
I don't know anyone else personally either. I suppose I could ask at the doctoe's, but I'm too worn out for a support group : ).
i'm from Iowa!
Hi! I'm from Peru. Here the medications are the same that is used in other countries. Now I'm in remission, but until last month I was taking eltrombopag for a year.
I think the ITP is related to the everyday stress and the food. So I was trying to handle it and (for me) is wroking.
Hi, I am living in Canada
Im from the us
re the elltrombopag------I am meeting with my hemotologist next week and I know now that because I cannot do the Rituxan treatment she wants me to try Eltrombopag. Anyone had success with it. Like remission? Really would like to know from someone who has tried it rather than believing everything my dr says----- just a little tired of hearing chin music and noticing most of the treatments are not long-term. Thanks for your input. 22-patience (is running low) ha!
Hi! Bay Area, California
Yes...I am from Maryland and currently in my 4th week of Elthrombopag...so far so good. I have battling ITP for last 18 months as a new condition, discovered after routine bloodwork...experienced other autoimmune conditions in the past. I have gone through rounds of IVIG followed by high doses of steroids. I feel like my Hemo Dr. waited quite some time to finally put me on Promacta (Elthrombopag)...he was not convinced/sure of the results/side effects vs time on the market, etc...but he was quick to want to take out my spleen and give me chemo-like drugs!...that wasn't going to happen...I get blood work done every 2 weeks (liver & platelet count) and suspect all is stll extremey well because of the steroids. Only this week do I feel like I may be experiencing one of the side effects--fatigue, as I am just tapering my last dose of steroids so the next couple of weeks will be the litmus test.
I am realizing the the dietary restrictions are a challenging for me...initially I took it at night but that proved to be too restrictive with evening activities. Now I take it early morning (530a) but I am still trying to find appropriate foods to eat within the 4 hours, waiting until 930a will not work, at work LOL!
I have now been on Eltrombopag for about six weeks now. Started with 25mg and my platelets went to 334 so my dr dropped me to 12.5 mg one day and 25mg the next day. And 5mg of prednisone daily. I had terrible reaction when dr took me completely off prednisone so put me back on the 5mg. Well, I am now back on 25mg of the primacy a daily as my platelets dropped very low again. One side effect I am experiencing is swelling of my feet and lower legs. Terribly uncomfortable! I am not especially fatigued but do take naps on occasion now. I, too, have bloodwork weekly right now. I have had ITP since 2007 without remission so am praying that will happen for me some day.
I'm in San Francisco ca, also known as Bay Area
Not what you're looking for?
You may also like...
Are these bruises normal
Hi, my 5 year old daughter has had itp for almost a year now with her platelet being below 10...
Where are you all from?
There doesn't seem to be anyone on here from Texas? And not hardly any from the states? Am I...
How to convert UK test results to the States test results.
I was 125 in my last blood test and am awaiting another in ten days. I'm not sure how
to compare...
Any issues with other blood counts aside from platelets?
My son, 7 yo, was diagnosed with ITP last Jan 6.. do you have any other issues with neutrophils,...
Related Posts
What is the highest count anyone has had? As of this morning mine are at 1400.
Calibration of blood test results from different hospitals? How can you match them.
Cure ITP by homeopathic balancing of the immune system
What is the right dosage of papaya seed or papaya leaf for 7 yo ITP patient?- Does anyone else suffer from memory loss as a side effect of high steroid treatment for ITP?
Moderation team
AnthonyHeardAdministrator
MervynMorganPartner
