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  • tacmom
21 Feb 2010 09:52
Replied by tacmom on topic Rheumatology Appointment
Is a beta blocker the same thing as blood pressure medicine? I've been on that since I was 25 as well. Will have to take that the rest of my life but I find that it helps with headaches too. I've taken myself off a few times when I ran out. The dr told me this is dangerous to do so I've been faithful at taking it for 3 years now. Mine are classified as an ace inhibitor though. Glad your daughter does ok with them! Three more days until Caitlin does the Rituximab! I hope she has no bad side effects!
  • cindyduncan
21 Feb 2010 09:50
my doc said i might have itp and thats it was created by cindyduncan
well it started when i went to dentist in may of 09. dentist now screen before giving pain killers. my bp was 255/155 so dentist sent me down to the er. of course they did a blood test. first my potasium level was very low. so i get this all taken care of and im sent to a reg doc for montoring. doc takes blood and my white count is high and my platelets low so he said wait and see, same thing happened in july august and sept tests allso this time ive been showing doc my unexplained bruises. so in nov my values changed again and he finely says im sending you to a blood doc. on dec 18th i go to a hematologist oncologist. he does a blood test this time i get results on paper to read. my whites are high and my red cells and my platelets 81. so i go in for a bone marrow biopsy and no cancer. then i see the doc jan 4th and he says you may have itp. my platelets run 70 to 80 . he says i gotta get a carbon monoxide detector for high red count or its the smokes so i get the tester and quit smoking. i allso go in for a sonogram on liver and spleen. spleen fine but a hemangoma on liver so im in for an mri its only a birth defect. so i had to go get a colonoscopy for screening too and my female parts. the doctors agree for the colonoscopy a platelet transfusion. no cancer there either perfect colon. now its feb 21th and i dont go back to hematologist till april and no word if i got itp or anything
  • lucidawn
21 Feb 2010 09:48
Replied by lucidawn on topic Timothy's cbc today
Well be going in to the office for injections. Tim has a way of avoiding meds, and going in to the office makes sure he gets his injection. He isn't experiencing any side effects so far, so its looking good. Hopefully, as you say, he will hold at this dose. I think Tim is his hemonc's first Nplate patient. He doesn't have alot of experience with it, it seems. But my boys tend to provide their healthcare providers with new and unusual training and experience all the time,lol. One with CHD and MS, and the other with ITP. My boys just don't fit in to the usual curve.
  • tacmom
21 Feb 2010 09:40
Replied by tacmom on topic Timothy's cbc today
Wow! He is responding great to Nplate! With his history earlier this year, I was thinking he would be going up quite a few doses before he saw a good jump. I hope he remains at 50 or higher at the same dose. With Nplate, they only go up .01 mcg each week if counts are below 50 so it sounds like he is at .02 mcg now. We were able to inject her at home at .05 mcg. I think the general rule to self injection is that the count must remain at 50 or higher for 3 or more consecutive weeks at the same dose. Do you know if Tim qualifies ever for self- injection or will it always be given by a nurse? I hope he is still not experiencing any side effects.
  • mendenmh
21 Feb 2010 09:15
Often, they give a big dose of steroids with surgery, to reduce inflammation and speed healing. Did they do this? Could it have caused the huge jump?

Marcus
  • juliannesmom
21 Feb 2010 09:14
Replied by juliannesmom on topic Please help me!! I'm SOOO scared..
Joya,
Don't jump to have your spleen removed just yet. You started on a treatment that does have nasty side effects, but can be very effective for some. Some folks here take dex five days a month and enjoy the rest of the month with good counts. (It didn't work for my teen, as it raised the counts nicely, but they dramatically crashed upon ending the med.) Some folks like prednisone better than dex, because the side effects, while nasty, can be less dramatic than with dex.

My teen was diagnosed just before her 13th birthday. The first few months of counts were low except when treated, and we really felt we were on a roller coaster. She was admitted to the hospital four times in one year. Twice was for low counts, and she had IV immunoglobulin gamma (IVIG); once was for a nonstop nosebleed, treated with IVIG; and once was for side effects of the IVIG. We like IVIG as a "rescue" treatment for severely low platelets, because she got several weeks of good counts, and usually plateaued after at a safer level.

Remission does occur, even in adolescent and adult females. About fifteen months after diagnosis, my daughter had a really good count with no treatment. After that, her counts stayed in a safe, but not as high as normal, range. Then, about two years after diagnosis, she had a perfectly normal count, and her counts have been normal or near normal ever since.

You don't have to have a normal count to be safe, but the count and symptoms do affect what you can do physically, and the risks you can take in sports. When Julianne's counts were in the twenties and thirties, she was limited to mild tennis, and walking or running on a paved smooth track. When her counts were over 75, she was allowed to resume volleyball (with a risk of a ball to the head) and basketball (which is very physical). She now does anything she wants.

If you get a splenectomy, you may find it doesn't work. (Many here have had a futile splenectomy.) Then, your treatment options for ITP are limited, and you have set up a lifetime risk of infection. (Antibiotics every time you have your teeth done, or minor procedures, and some have to take antibiotics daily for life, all because they have no spleen.) You have a spleen for a reason. If you can manage ITP and still keep your spleen, you need to try to do that. This WILL get more manageable and tolerable as you learn your body's way of dealing with ITP. The body often compensates on its own. We found that my teen soon tolerated low counts better than she did initially, and didn't bruise and bleed even at low counts. Also, vitamin C did not help her counts, but did seem to help with vessel integrity (meaning less bruising, less petechiae, less bleeding) when her counts were low. If you are prone to nosebleeds, keep nosebleed supplies (water, nasal spray, tissues) on hand, especially when you are in sports.

Hang in there.
Norma
  • julia
21 Feb 2010 07:34
Hi Vanessa, im sure it was Lib who had counts way up like yours for a while after the same treatment, I think it lasted a couple of weeks before getting down to a normal count range. Im not sure if shes travelling the world now, that was her plan. So, think of all the places you would like to see! I know what you mean about cadburys creme eggs, have you tried a walnut whip? i throw away the walnut on the top though-its too healthy :ohmy:
Julia
  • snowgoose
21 Feb 2010 03:39
Hi Lauren, My Haematologist has prescribed asprin, it doesn't stop the production of platelets, but it does coat the platelets, and help to prevent clotting.

Has anyone else experienced a extreme increase in platelets after surgery? Anyone???!!!!

Vanessa ;) :silly: :blink: :blush:
  • snowgoose
21 Feb 2010 03:32
Up again from yesterday, but only slightly, not the big jumps of 100 plus a day like last week.......867! ;)

Vanessa
  • Kim
21 Feb 2010 00:01
Replied by Kim on topic Counts down
Thanks everyone. Feeling a little better,although I'm on 20mg of prednisone. I see the immunologist on Monday, so we'll see how it goes with that and with tapering of prednisone. My upper back, shoulder and sternum still hurt but better with the pred. The headaches are better too. I just hate all the drugs. I thought that maybe one of the new meds was causing my platelets to be down, but none list that as a side effect, so I don't think that's it, although you never know with new drugs.

My sister threw me a 50th birthday party -- surprise! All the usual "over the hill" birthday stuff. It was fun, but I'm beat.

Tamar,
I'm a tax accountant, so I like taxes, although we owe this year, so could be that's the problem. If I asked Jim to do the taxes, we'd end up in jail.

Michelle,
I'm at my sisters, so I don't have a link available, but when I get home, I'll send you one.
  • farida
20 Feb 2010 23:31
Replied by farida on topic Newly Diagnosed
and what is the treatment of evans syndrom
  • Sandi
20 Feb 2010 22:35
Replied by Sandi on topic Please help me!! I'm SOOO scared..
Hello Joya! I'm glad you found us. ITP is scary at first. We have all been there. I've had counts as low as yours were and although it's scary, many us have lived through it just fine. You'll be okay.

I didn't think of myself as "sick" with ITP; I just went on normally and decided that I had to manage ITP the best I could. There are other treatments and you did start on a nasty one. Tamar is right - you could get a nice remission from Dex. Sometimes counts stay up after treating. When your counts are up, you can be as active as you want to be.

Do your research before you make any decisions and read as much as you can here.
  • tortie
20 Feb 2010 20:02
Replied by tortie on topic Please help me!! I'm SOOO scared..
I'm surprised they haven't tried IVIG or Anti D as your counts were very low. They could have given you the dex or pred with these. It might be good to find out how you respond to these and how long they work for. They don't normally last longer than a month though. There is also Rituxan and it can give better, more long term results.

You're right to wonder how much to give of your lifestyle to this. It is a personal decision and a tough one. Don't let the steroids decide for you. They are the worst treatment for all your side effects.

Maybe think about trying Rituxan. Some of us here have tried many treatments and they didn't work and some have tried splenectomy and it didn't work.

Just make sure you're 100% comfortable with your choice.


I hope you find your answers.

Michelle
  • Angel85
20 Feb 2010 18:29
Replied by Angel85 on topic Please help me!! I'm SOOO scared..
Hi Joya

Sorry you are going through this. I think you need to just take a couple of deep breaths and try to relax.

I don't like steroids either, but there are other treatments as well, there is a lot of information on this site about treatments, so have a read up of them. I wouldn't be considering a spleenectomy as quickly as you are, my doctor has advised me that would be a very last option for me, so i'd look at all the options and take my time deciding what is the best treatment for youself, removing your spleen isn't always the best option.

Hope everything goes well.
  • julia
20 Feb 2010 17:15
Replied by julia on topic Please help me!! I'm SOOO scared..
Hi Joya,
Glad you found this forum, read up on the ITP, relax and you will be fine. Steroids mess with your eating, sleep, emotions, body & mind. Just remeber these are side effects and you will get through it! Dont hit yourself if you can't do all your sports at the min it will get better. Docs seem to be amazed at people walking around with low platelet counts. You will become more experienced with ITP than a lot of doctors, you know your body and listen to it.
I was admitted 3yrs ago with a count of 9k steroids stopped working so i tried Azathioprine (Imuran) and my last count was 275k i refused a spleenectomy.
Take it easy
Julia
  • CindyL
20 Feb 2010 16:55
Replied by CindyL on topic Please help me!! I'm SOOO scared..
Welcome, Joya. Sorry you are going through all this, and sorry to hear about your Grandfather.

I waited 2 years to have my spleen out, and I am in the same boat as I was before I had it taken out. Being as young as you are, you might have a better chance of remission, but like Tamar says, there are other treatments to consider. What did your doctor say when you asked him/her about removing your spleen?

Take a deep breath and relax, believe it or not, it does/will get better! :)
  • tamar
20 Feb 2010 16:05
Replied by tamar on topic Please help me!! I'm SOOO scared..
Hello Joya,

I'm glad you posted. You will get a lot of good information from people here. I'm sorry you're having to go through this, and sorry to hear about your grandfather.

The most important thing to know is that you can get your platelets up--and if one treatment works, others might, too. Each has positive and negative things to consider. Steroids like dexamethasone can cause weight gain and depression. Dexamethasone also might push you into remission, so you might be almost done with ITP for a long time (or even forever). I'd say it's worth waiting and seeing what happens.

Yes, you can have your spleen removed, but most people do not choose to do that as quickly as you are considering. Why lose a part of your body when it might not be necessary?

I was on prednisone for 6 months, and it was awful. Then I used Anti-D for several years, just a few times a year. Then I tried a low dose of rituxan in February 2008. In September 2008, my platelets went above 100K, and I've only had one count down in the 80s since.

I chose not to have my spleen out, and now I am glad since my platelets are very close to normal. If I had not been able to get them there, I might've tried a splenectomy. I would not have made a quick decision about it though.
  • Joya
20 Feb 2010 15:23
Hello Everyone..

My name is Joya, I'm 21 years old and life in the Netherlands.. Since we don't really have very active fora's on ITP in Dutch I decided to sign op here.. So sorry for the grammer faults etc.

This is my story:
I'm a first year student Lifestyle & Health (This is a study where we learn how to make different groups of people healthier with sport) I'm a dancer, and danced as a cheerleader for a few years. Overall I'm a very active person, I sport 5 times a week all kinds of sports and I hate to sit still.

During one of the sport lessons at school I god kicked. My enckle was very swollen and I decided to go to the docter since I was going snowboarden 1.5 week later and I didn't want to go snowboarding with an injury. I always used to have a lot of bruises but never really thought anything of them.. I am a very simple person and I don't like to go to the docter. In my dancing carreer I always learnt that when you're not dying you can still dance or sport.. So that's how I always lived my life..

So I went to the docter. For the first time in about 8 years. I never ever thought I would have anything. I just thought maybe she'll tape my enckle. When the doctor saw the bruise on my enckle and some other bruises she got worried and had me run some bloodtests..

I went to the lab for the bloodtests on friday around 12. After that I went to the hospital to visit my grandfather. When me and my boyfriend letteraly walked out of the hospital the doctor called and told me I emmediatly had to go the ER to get my blood testet again. She told me they could not messure my blood platlets and that they had to run the tests again because they actually could not believe my counts where so low and I wasn't sick or anything.

So I went to the ER and found out they could not messure my blood platlets at all.. In one test I had only 3k (I think that's how you say it in English) and in an other I had none.. SHOCKING :( I'm never sick not even a cold or anything and now there were interns comming to see if I was really sitting there with those counts.. They could not believe it.. So they started me on dexamethason for 5 days..

The dexamethason got me really sick.. Thank god for my sweet loving boyfriend how took care of me becouse I couldn't even walk the stairs on my own.. after 5 days my counts where back up to 92 and after a week I was up to 131. So I was allowed to stop with the medication and celibrate it in de snow on my holiday.. I did have a lot of withdrawls on my vacation but was still able to enjoy it. Snowboarding went fine I just had to take a nap every day and wasn't able to carry my own luggage or grossery etc.

When i came back from my holiday I felt perfectly fine! I was confidend my counts were great since I fell a lot the whole vacation and didn't even have one bruise! 2 days after I came back I had to go back to the hospital for a new blood test.. And my counts where back down to 23.. Again SHOKING.. the docter wanted to wait another 3 days to see if they would drop any further.. That wednesday my grandfather died very suddenly wich was another big shock..!! On firday my counts dropped to 13.. So back on the dexamethason.. This time for 3 weeks.. 4 days on medication and 3 days off..

This time I have different side effects but still they have so much influence on my life.. :( I am hungry all day!! Wich is new for me because I never really cared for food.. I already gained 2 kg because I can not control my eating.. I am also unable to sport since I almost vaint after running one round.. I feel like my life is passing by and I'm standing still watching from the side line.. I can not really have a normal conversation since I can not come up with words.. It's impossible for me to follow conversations with several people because it is to much for my brain..
I just feel like my life is on hold..

Now I'm on my last week of dexamethason and I have a new docters appointment over 2.5 week.. On my last check up my counts where back up over 300k wich is great!!! But we already new this would happen with the dexamethason..The only thing is.. how long whil they stay up for..

I really really don't have the time to be sick! I'm in my first year of school.. I have a very active life and now everything is falling apart and all I can do is wait and wait and wait.. Im also very scared.. even when my counts are back up.. I don't know when they are back down and they've already proven to be able to drop very fast.. with in a week they can almost disappear.. I now I'll be check very regulary but this can always come back.. I do a lot of team sports and quitting is NO option! Because that is my life.. I don't have anything to life for if I can't dance and play sports!

I talked to my docter about removing my spleen.. I just feel like this whole medical treatment thing is great for people who life a normal life.. People who do not sport several times a week and try to make a living with sport. My whole life is filled with sports.. and now I have nothing.. I already had a problem with depressions and now I feel like I'm in this black whole with np light at the end of the tunnel..

What do you think? Shouldn't I just het a splenectomy? I know it only helps in 70% of the casus but I'm willing to take that risk.. To me the impact of having to go on prednison of the dexamethason doesn't work for a long time (wich I don't tink it will) is way to big! It is ruining my life.. If they just take my spleen out I don't have to be scared all the time.. If I fall of get kicked or bumb into anything..

I don't see how I can life with this.. Please help me..
  • tamar
20 Feb 2010 14:05
Replied by tamar on topic Counts down
Kim, so sorry to hear you're having problems. I hope the lower platelet count (which is still great--you know that) is just a blip. Maybe you are alergic to taxes?? Can Jim do them?
  • Sandi
20 Feb 2010 11:57
Replied by Sandi on topic Counts down
Kim:

I absolutely HATE to hear this. I'm sorry. I hope you can get things under control soon.
  • Angel85
20 Feb 2010 09:11
Replied by Angel85 on topic Counts down
I hope it all gets sorted out quickly and i hope you can get your pain under control quickly as well, take care of yourself try not to stress too much, good luck with it all and let us know how you get on.
  • Angel85
20 Feb 2010 09:06
Replied by Angel85 on topic Happy Birthday Kim!
Congrats on the big 50, It was my dad's 50th last monday and we just had his party tonight.
  • Angel85
20 Feb 2010 09:01
Wow, i can't believe they have gone up again, is there anything they are doing to try to get them down or just watching and waiting at the moment?
  • Angel85
20 Feb 2010 08:38
Replied by Angel85 on topic No. of replies per page
I have noticed that i am sure i have been logged on for more then 5 hours and i haven't had to log back in yet, so maybe they have done something about that
  • solentgal
20 Feb 2010 07:42
Replied by solentgal on topic child age 5yrs with chronic i.t.p
thats ok chick take care and like ya self oranyone feel free to leave message its good toknow that we are notall alone xxxxx much love x
  • julia
20 Feb 2010 05:12
Replied by julia on topic Counts down
Oh I hope it's just a short term blip Kim from a reaction and its back up in no time. Sounds like your in a lot of pain, hope that gets sorted quick too. Get yourself under the blankies and keep warm. Take care
Julia
  • tortie
19 Feb 2010 23:59
Replied by tortie on topic Happy Birthday Kim!
Right on!!! Happy Birthday!

Michelle
  • tortie
19 Feb 2010 23:58
Replied by tortie on topic Counts down
I'm hoping that this resolves easy and quickly for you Kim.

Do you have a good site that explains autoimmune uticaria? i quickly looked it up and it might explain what happens to me on a regular basis.

Michelle
  • eklein
19 Feb 2010 23:01
Replied by eklein on topic Counts down
Oh no Kim - good luck. I've had pleurisy from allergy to ibuprofen. Is it maybe part of the whole allergic reaction you are having to who knows what?
Erica
  • Kim
19 Feb 2010 22:24
Counts down was created by Kim
I'm not complaining, but....My count is down over 100k. I've been holding stead at 250-280 for months, but on Tuesday my count was 146. Kind of freaks me out a little bit.

I've been having problems with itching and rash, which is probably autoimmune uticaria. It's better after several weeks of 3 different antihistamine drugs. With the itching and rash, I've had itchy eyes, nose and burning inf lammed sinus, so I'm also on steroid nasal spray and Zrytech eye drops. At least the itching is better, because that was starting to make me crazy.

On Monday I was working on our taxes, sitting for about 3 hours straight, when all of a sudden I had upper back pain. I thought it was from sitting, because I do get stiff and painful pretty easy, so I figured I was done for the day with sitting and went to get a heating pad and lay down to rest. The pain progressed throughout the day and night, so on Tuesday morning, I was having problems breathing and chest pain. I called the doctor and he ordered me to the ER. I was really in a lot of pain, so of course with my history of PE, they did a PE work up, along with cardiac, because I was having shoulder and arm pain and the EKG was a little off.

The doctor ran all the tests and nothing, so diagnosed pleurisy. I've been having some mild pleurisy, but this was unbelievable and required Oxycotin to manage the pain. I have not had pleurisy like that since transplant and am discouraged and worried about it. I upped my prednisone on Wed to 20mg and have stayed at that dose through today, but tomorrow I'll drop down to 10 and see how it goes. I really didn't get any dose suggestion from the ER doctor and didn't call the rheumatologist, because I lost him last month and have not seen the new guy yet. I do have an appointment with him in early March, because the immunoogist who is treating the uticaria insisted I get an appointment with the rheumatologist. I see the immunologist on Monday, so I'll run it all by him.

I'm concerned because of the increased symptoms of pleurisy, the drop in platelet count, the rash and itching...it all just seems to indicate something autoimmune is going on and I hope it does not mean I'll be back to low platelet counts again, because that will make me worry about APS, ITP, lupus. So far my lupus tests remain negative or very low titers. ANA is negative, DsDNA negative, just a low positive Sm and RNP.

I think I'll have the immunologist run another CBC, so I can see what my platelet count is and hopefully it will be up next week. Wish me luck...
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