scared and confused

Hi everyone:

My best friend found t his site for me. I was recently diagnosed with ITP. Notice unusual bruising , went to my family doctor, she did blood work and call me the next day and admitted me to the hospital for a low palates count of 5,000. They treated it in the hospital with IVG and plaited transfusion plaited count went back up , they released me that Thursday. A week late after having my blood work checked, got a call at work the doctor was readmitting me to the hospital again. They treated it again with some other medicine and a round of transfused platelets. So fare with the predisonone my counts have been staying up. Went to family doctor for follw up this past Thursday count was up to 210,000.

Had follow up with my hematologist and next week we are doing two rounds of IVG two days in a row out patient to.


There is a lot I do not understand about this diseases I have suddenly developed. I am relative a normal , health person who tries to take the best care of myself. But this ITP has me scared, confused, nervous and I hope seek , advice, understanding and information from this site.

I go for blood work every Monday and Thursday, is this something I will be needing to do for the rest of my life?

This year had been a hard year for my already, my mom got sick , I took care of her and she passed away in May. I have a very stressful job as well. Could these things be something that contributed to me developing ITP.

Also in Sept I had a leak in my apartment in the master bedroom(which was my mom’s) from the upstairs apartment washer, they maintence guy had to open up the dry wall to let all the water out. It took them 6 weeks to fix it, I don’t know if at that time I was exposed to any type of toxins that may have lead to this ITP as well?

Thank you all for taking the time to read this very long post.



Michelle

Hi Michelle,
First welcome to the group, you will find the people on here to be very helpful and supportive. I think everyone feels pretty much the same as you when this ITP hits you, most of the time ITP just seems to come from no where and if you are like me I spent the first six months trying to figure out what I had done to have this condition but mostly you will never know the why.

So now the journey begins and sometimes it is a short one and sometimes it can just stay around but try not to worry about that too much. After the initial dx you will have lot's of test and maybe have to try a few treatments but you will find something that works for you and you will be ok. So the blood counts will get less and less, I started on daily test then moved to every couple of days then you go to weeks and then months, it just takes time.

You will probably find being on prednisone not the most enjoyable time, it does have side effects, some feel them more then others. Ivig usually only works for a little while and platelet transfusion are usually only done when you are bleeding as your immune system will destroy the platelets as well.

There seems to be a lot of different opinions as to if stress plays a part in this as well but my opinion is it depends on the person, are you usually a person that handles stress ok or does it impact your life?

What dose of prednisone are you on? Do you know what the other medicine was that they gave you?.

Your count at the moment is really good so try not to worry too much. ITP is annoying and the treatment can have many side effects.

Please stay around and ask lot's of questions and you will probably have a lot of thoughts going around in your mind, but as time goes on you learn to live with this and it really does get easier to deal with.

Anyway Michelle good to meet you and I hope you find as much help here as I did, really nice group of people.

Thank you milly for answering my post. You made me feel better about some things. I ahve been reading most of this sit all nite. Everyone seems very nice, supportive and helpful. I've never had a seroius illness in my life so this is all new to me. I did forget to mention taht I also have had underactive thyroid since 1997 and have been on meds for. Can my thyroid be aause of this as well?

Thaknkss again. Unfortunitiely I have no ITP supportt group where i live, so I t hink this forum will be a life saver for me as I deal with this illness.

Yes I did ask myself that very question waht did I do to cause this or why is my body doing this to me, when I takee good care of it.


MIchelle

Michelle, I have no thyroid, had it removed in July last year so I am on thyroid medication as well. I don't think that thyroid problems will cause low platelets but I will try to find a answer for that one for you. Do you know the cause of your thyroid problem? Is it Hashimoto's, this is an auto immune problem as well and people that have one auto immune problem sometimes are more prone to other auto immune problems. I have RA and ITP, I have also had endometriosis.
Is there anything that is really worrying you, because if there is and you would like to tell us I am sure some one that is on here will be able to help.
I am hoping that someone comes on and can answer your question in regards the the thyroid thing, hang in there as more answers will come.
You have to get things right in your mind that you did nothing to cause this, it is not your fault and it is good that you take care of your self as this will help.

Hi Michelle. Glad your friend foud us for you.

To answer some of your questions: This may or may not be something that you have to dal with for the rest of your life. Sometimes it goes away in a few weeks or months and sometimes it does not. If it is chronic, that does not mean it will be a constant thing. Remissions are fairly common and sometimes it takes a few differnt meds to see what you respond best to. IVIG is not known to cause remissions, Prednisone may. I'm just wondering why you are scheduled for IVIG with counts of 210,000?

You may never really know the true cause. Stress can do strange things to the immune system, but sometimes it is just an accumulation of factors that trigger ITP. The one thing that we all probably had in common was a genetic predisposition to an autoimmune disorder, and all if takes is the trigger(s) to set it off. Knowing the cause does not usually solve the problem anyway.

A lot of very healthy people have been diagnosed with ITP or disorders that are even worse, so it can happen to anyone, healthy or not. The important thing to know is that it is usually something that can be managed, and you seem to be responding great to the steroids. That is something to be happy about since some people don't respond to any treatments. Keep reading as much as you can and in time, you will be calmer about it. Promise!

Sandi and all:

Thank you for your responses. As far as my thyroid issue after I was diagnosed with it, we found it ran in the family on my dad's side. As for the IVG treatments my hematologist wants to do them in order to try to keep my antibodies from killing off the transfused palates. Today I am not feeling so good and I go for my bloodwork tomorrow, I am kind of worried that my plated count will be down again and I will get a call to go back to the hospital. I feel like I should keep a bag packed for a hospital stay at all times now. I can’t tell you how much I cried while I was in the hospital, not knowing a lot about this.


I’ve cried a lot, got angry at lot that this happen to me. I wish I had someone I could talk to in person or on the phone who has dealt with this. I mean my best friend listens but it’s not the same as someone who’s is dealing with it or going thought it. It’s all new, scary and confusing to me. I guess I should be glad it isn’t cancer or something else and this can be managed.

I guess when you hear the doctor say auto-immune disease and the body is fighting itself, it’s scary and you think of your body attacking you vital organs and I think that was what scared me the most, I thought I was going to die. I have too much I want to do in life yet.. I think the other that scares me is the possible of bleedng in the brain. I worry everyting i get a headache now. Like this week, it's had a heck of ainus headache.

I thought about asking my doctor about taking medical leave of absence from work, but I don’t know if that is a good idea or if it is better to go to work.


But it also has brought me closer to God. I know they said God doesn’t’ given you anything you can’t handle but I’ve had a lot happen this year.

Thanks for listening again and thanks for this website.


Michelle K

Hi Michelle,
You might want to get another opinion from a hemotologist - if you don't have any bleeding symptoms you might not have to be hospitalized just because your counts are low. Many of us walk around with low counts. When they are under 10 it's true you have to be more careful and watch for bleeding symptoms but we still go to work and carry on mostly as usual.

There are some here who saw a relationship between the onset of ITP and some home remodeling including mold issues and carpeting. Who knows - maybe? Also thyroid issues can impact platelets - is your thyroid under control? Some get better platelet counts when they get thyroid under control.

There are lots of treatments you haven't tried yet, plus ITP might just go away and not come back. It's a bit unpredictable that way.
Erica

Michelle,
Erica is so right in what she is saying, this may be a just a hiccup for you but if it's not you will relax and learn just to go with it.
Just a few things to remember, you are having regular counts done so you will know if there is a problem and counts have to be a lot lower then yours are to be a problem. Try to keep your life a bit normal, I had months of work when I first got dx, but I had a lot of other problems as well and I found it difficult to get back to being me after so long off work (my time off wasn't because of the ITP) so maybe you are better off going to work so you don't sit around
thinking too much.
I was like you and kept a bag packed to go to hospital, I think the junior doctors scared me into thinking that the end of life was close, but I have never needed that bag. I think the thing you have to remember is what Erica said this maybe just go away and if it doesn't you may have years between needing treatment.
The prednisone you are taking maybe making you feel pretty awful as well, I think a cried buckets when I was on it and nearly drove my family crazy with my crazy thoughts.
Michelle, if I was in the USA I would give you my number so you would have someone to talk to but I am in Australia so bit expensive to call but feel free to send a personal message. I do really feel for you. ITP is a big thing to get your head around but as you learn more you will relax and life will go on, hang in there

Michelle - I agree with Milly and Erica. It is pretty scary at first, and most tend to take their cues from their doctor. I had a hematologist who did not panic at low counts and just encouraged me to continue normal life with counts under 5. I did treat with Prednisone, but was not hospitalized and continued to work. A lot depends on the symptoms, not the actual count.

Platelet transfusions are not usually used as a treatment unless there is bleeding - they don't work for ITP. A second opinion might not be a bad idea. Honestly, two days of IVIG is a lot to go through if your counts are over 200,000 already. IVIG is a good rescue treatment if counts are low, but yours are good at the moment.

In a way, ITP isn't a bad autoimmune disorder to have if you must have one. It does not affect major organs, just platelets. While those are important, you have found that it can be controlled. Once I knew that about myself, I stopped worrying because if a person can get counts up, what is there to worry about? I always considered myself one of the lucky ones for that reason. Of course no one likes the treatments and they can intrude on your life, but it's just one of those things in life that you have to do, as unpleasant as it may be.

Your going to be okay. Just let this sink in and regroup yourself. Try to keep life as normal as you can. It will help in the long run.

Sandi and all:

Thank you all for your word of encouragement, kindness and compassion. I did forget to mention this all just started for me the week of Oct 17th of this year. (of course it was my week vacation from work and my birthday week). Initial there was a lot of bleeding when my family doctor sent me to the hospital after I went to her with the unexplained bruising and my menstrual cycle would not stop.

I think the hematologist sent me back to the hospital the second time was because that wasn’t much of a difference in counts between the two weeks plus they gave me once a day some called dextra something or other(I forget) via IV, which has seem to help with my count.


I am off to get my counts done yet again this morning then off to work. I wasn’t feeling too good on Sunday so I am a little worry my counts are down again or it could have been I had just been wore out from this week with all my appointments I had this week. I also was an emotional wreck on Sunday, all I did was cry most of the day.

I’ve also been feeling a bit itchy but no rash or new brusing. Could be the dry weather her in Pennsylvania.


Milly thank you for offering you phone number if you lived in the USA.


Michelle K..

Hi Michelle,

I first had a bout with ITP about 25 years ago. At the time, they wrote off the odd fatigue & low platelets & bruising as a weird virus, because by the time my internist sent me to a hematologist my platelets were back up to 140k & I was feeling fine (after months of wondering if I had mono and all sorts of other things).

Being really healthy, I rarely had blood tests over the years and when I did, they'd write off the low platelet count to clumping in the centrifuge because my other blood count numbers were fine and I wasn't having any symptoms. And then a couple of years ago they were in the low 50k-60k range and I needed thyroid surgery. The hospital wouldn't allow the surgery with that low of a platelet count so I found a hematologist. I had done enough reading on the internet to know that I could only have ITP and I went to a hematologist at one of the med schools here. I picked him because his research focus was platelet disorders, not oncology. Because the hospital wouldn't let the surgeon do the partial thyroidectomy until my platelets were 70k, my hematologist ordered IVIg which kicked up my platelets to 69k and they did the surgery.

After that the hematologist did blood tests every 6 months and they were in the 50-60k range. This year they decided to have me only come to them once a year (and this was only because if I needed IVIg again, it would be easier if I was already in the system) and have my internist order a CBC anytime I came in. Of course, there was always the caveat that if I experienced bruising, petechaie or bleeding that I'd get in there to have it checked out. About a month ago I went to the internist and my counts were 28k. However, I'm still asymptomatic. Could be an issue with the centrifuge, we're waiting 6 weeks and having the internist test again.

As others have said, it isn't necessarily the low count you have to worry about (most people with ITP don't bleed to death). If you're also seeing other symptoms, like the bleeding you experienced, that's when the docs want to keep an eye or do things to kick those counts up. As my hematologist likes to say, sometimes the cure is worse than the disease with ITP (after having transfusion side effects the first time I had IVIg, I had to agree!)

Diet can have an impact, so check out the list of things to avoid (like tonic water and ginger) and make sure you don't take aspirin or ibuprofen (tylenol is fine). Not all folks with ITP get fatigue when their counts are low, but that's been my experience up until now. Listen to your body, find a good hematologist who understands platelet disorders (rather than a cancer doctor) if you can. It will be ok, and this forum is full of really great, supportive folks who know exactly what you're going through!

Michelle,
The way you felt on Sunday could be the steroids that you are taking, they can make you an emotional wreck so don't be too hard on yourself, you have a fair bit to deal with at the moment, it gets easier.

Thanks again to eveyone. I am happy to report as of today my cbc was 300,000. I do like the hemotologist I have she is very good, patientt , caring and understanding. Especially when I was in the hopstial the first time and this was all new and scary to me, She made me understand that I did nothng wrong to bring this on and it was not my fault. So was very caring and understanding and let me cry my eyes out. She did not push the spleen surgery, she said that wold be the very last reosrt , she'd rather try outher treatment first ot put this in hopoefully remission.

Thak you all again for all your help and willingness to explain all this to me, makes me fell much better.



Michelle

Michelle - you're doing great! You're going to be okay.

Sandi:

I seen on on of the other topic secton here you live in PA. So Do I. I live in Allentown.

Billy Joel! Love that song.

I live near Pittsburgh - about 45 minutes NE.

Hi Michelle--

PA native here, too--from Allentown in fact, but lived mostly in Emmaus! Half my family still lives thereabouts-- Macungie, Whitehall and Northampton. My daughter is the one with a history of ITP, diagnosed at 14 yrs. old. The first year was holy hell, but..that was the only year. I still hang around, though she's been in remission for 9 years (thanks to Rituxan)!

Bet you can still go throw a frisbee in the parkway! Hurry, before it snows--again! Ann, Caitlin's (now 24) Mom

P.S. Billy Joel is great--seen him twice in concert--but Sandi, I HATE his depressing take on Allentown!

Hi Michelle...
I just wanted to let you know that I, too, had the Decadron pulses (it sounds like what
you had). I also had about 5 IVIgs administered over a one-month period. This is my second time around for ITP (first time was in 2006). I've been in a remission for a year from August 2010; though, I do get my 6-month blood test tomorrow.

I think you might be feeling the affects from the Decadron and the IVIg. I know one year later, I still feel the affects of these meds--so don't be too hard on yourself. At first, I always thought my ITP was coming back because I've been tired. But, I really think it could be a side affect (at least for me) from the Decadron pulses (had at least 16 days of these pulses spread out over 2 months. And, also the IVIg did cause side affects, too. Try to be just happy that your platelets are up and take one day at a time. You should start to feel better as time goes on (but do like Sandy said--get a second opinion concerning the IVIg). My doctor kept giving me the Decadron pulses, eventhough my platelets were up; I think he could have stopped after the first 3 series (12 days instead of 16 days).
Take care and hope you are feeling better:)
Dee Dee

Ann - I've always thought the song was representative of America's small, struggling towns and the pride we feel in those who work to keep their communities going. The song gives me chills and I think of it as a tribute. I've never been there, but have seen plenty of places like it in the Pittsburgh area. My grandparents worked in the steel mills and you never lose that pride.

HI Dee Dee:

Thank you for our words of encouragement. Yes I think you are correct it was the decadron. I only had that for 5 days with my second hospital stay. That was back the week of Oct 27 to Oct 31st.

Since this is so new right now to me, I am having a hard time relaxing about anything. I worry about every headache I get (which just maybe from the prednisone). I am finding it hard to concentrate at work. I work in the public sector, I work for the welfare office and I am dealing with people face to face everyday and angry and irate people, I am the first person they see so they take they frustration out on me, since the caseworker don’t answer the phones or do there jobs properly. So my job it very stressful. I sit out in the waiting area so now with the ITP I am worried about catching something else from the public, since they are literally in my face( I have nottype of protection window at my desk, so there is nothing blocking them from breathing on me, whatever anyone is coughing and sneezing n the waiting area) and they could be coming in with undiagnosed or untreated contagious diseases.

Before this ITP came along I was planning on taking early retirement and moving about 2.5 hours away from Allentown, but I wouldn’t have medical if I left my job in April like I was planning, now this ITP has thrown a wrench into my plans for next year. I’ve work at my job for 20 years and I though the fatigue I was feeling was job burnout, plus losing my mom and having to take adjust to a “new normal”. Sometimes I don’t feel like going to work and just want to stay under the covers or turn back the clock to this never happening, but I know I can’t.


I think there is a very big part of me that is very angry that this happen to me (I know being angry doesn’t’ get you anywhere) I have a psychologist I was seeing to help me deal with losing my mom, I may think about giving her a call to help me deal with this new issue.

How do you know when this is in remission or is that something the doctor will let you know?

I am writing down a lot of questions as they come to me when I see my hematologist on Nov 28th. I didn’t have much written down the last time as I didn’t know at the point exactly what I was dealing with.

Thank you all again for listening, letting me vent. You are all a wonderful group of people.


Michelle.

Michelle,
Vent all you like, we have all done it at one time or another. Don't worry about the headaches, I think from what I have read on here you will know if a headache is something to worry about. Maybe you are just stressing yourself so much it is stress causing the headache or maybe the steroids.
Maybe it would be a good idea to get some help if you feel as though your not coping, don't let yourself get into a depressed state.
Keep writing your questions and hopefully the Doctor will be able to answer them for you and after you see the Doctor you may be able to get some peace of mind.
I am thinking of you because I have been where you are but I promise you that this will get easier and soon you will be able to park it away in the back of your mind and your life will go back to being pretty normal.
Milly

Hi Michelle,

Don't feel bad about feeling somewhat depressed. I really think the Decadron causes this depression (along with the ITP). I felt really depressed right after my last treatments last year. The Decadron changes some of your hormones (and works on the adrenal glands). I know because my hair started falling out (was thinning from the first round of treatments back in 2006); I now wear a wig when we go out--it's so much easier then dealing with this "thin, damaged hair". I also noticed immediatly upon leaving the hospital last year that my eye sight had gotton worse and my hearing wasn't quite as good as it was before. I'm 63 so you can expect some of these things to happen--but not all at once. I'm retired, so I don't have to deal with a job; but sometimes I wished I was healthy, and still working.

I do exercise a few times a week as I think this helps your platelets. I swim laps at the gym pool (like for an hour straight). I swam when I was younger so I am a good swimmer.

The doctor from USC told me this specifically; I have a 70% chance of a 5-year remission once I make to 1-year from my last treatment (which was over a year ago). But, I still worry in the back of my mind. Now, I do treat myself better than I did before I had my last relapse. I rest more and eliminated certain foods from my diet (These foods seemed to make me "bleed" more last year). I experimented to see what caused more bruises and petachie. I follow this procedure just in case my platelets do fall again--then I won't have as much bleeding. Like everyone here on the board mentioned: You can still have a life with ITP--just take care of yourself.

I hope this helps, Michelle. Try not to worry about everyone getting you sick. Just make sure when you do go home that you get enough rest. This will help you fight infections. Also, keep doing a lot of research as I feel that the doctor's don't all know a lot about us. We eventually probably know more about what's going on with our bodies then the doctor (that's if we keep seeking information). The only exception is the doctor from USC whom is also on this ITP board; he really knows a lot (plus, the doctors who attend the ITP convention). It sounds like the Decadron has helped you and you are doing a lot better. Just try to take care of yourself. Also, you can formulate a new plan before you retire. You really should be covered by insurance when you retire. We just never know what's going to happen. So, it's a good thing this happened before you retired and you still had insurance.

Dee Dee

Michelle:

Remission is something that everyone strives for, but it's not always possible. There are different definitions of remission - technical ones and acceptable ones. Most people here feel that if they can keep their count at a safe level without treatment, that is remission. You can determine that on your own. I've never had my doctor actually tell me that I was in remission; I just sort of knew when my counts stayed up without treatment.

Stress definitely plays a factor in headaches, as well as the medications that you are taking. Try not to worry about that - as Milly said, if it's a brain bleed, you will know. Those are described as thunder clap headaches, or headaches that have stroke-like symptoms.

As far as dealing with the public, sometimes that can't be helped. I didn't get sick any more often than usual when I was on Prednisone and if you do, you just deal with it like you normally would.

I know how hard it is to keep your job face on when you have a medical issue and are dealing with irrate people; I have a similar situation. I've often wanted to tell people "Who cares about your stupid little problem!" Then I remind myself that things could always be worse and try to convince myself that I am fortunate. Not always easy, but true. It's amazing just how many people there are that are struggling with some medical disorder. A woman I work with is having daily radiation for breast cancer and still laughs her way through the work days. You do what you have to do.

Any new diagnosis is scary, hopefully your therapist can help.

Dee Dee and Sandi:

Dee Dee first I am no wear near retirement age I am only 47, but was planning on moving out of the city I was living in and getting away from the stress of my job. The med they gave me in the hsosptial the second time was Dextramethasone.


Sandi: What is a thunder clap headache. I've had this headche for days and it does not want to seem to go away. I susspect it's a sinus headache and I don't want to be a hypocrondicate about it it, but I am a little worried. I've had nose bleeds only in the morning but it's light and doesn't last long and goes away and I think that is what is worrying me.

thanks again.

MIchelle

Michelle,

Sorry that I thought you were near retirement. Forty-Seven is still very young! You could be getting a headache from having the IVIg and the Dexamethasone (which is Decadron). A lot of people have side effects from these meds. I know when they administer the IVIg, you need to drink lots and lots of water (which I did); otherwise, you can get some nasty side effects. I remember having headaches last year near the time I was in the hospital, but now I am doing a lot better. If you platelets are still up, you can then eliminate that as a problem.

I went to see my hemo today and he did mention to me that the biggest problem his patients were having were dealing with stress. He seemed to think that the stress added to their low platelets. So, you probably do need to work on getting a job that is less stressful. Just thought I would pass this information along to you.

Dee Dee

Dee Dee:

I’ve been at my job long enough(20 years) that I could take early retirement and get a monthly retirement benefits, but I would be without medical, I’d have to be there 5 more years to get medical. If it would be determine by my doctor that I could no longer work do to this illness, I could retire and receive a monthly pension along with myr lump sum payment (no benefits or sick payout) or apply for a disability through the state and if approved, receive a monthly pension, medical benefits, sick payout, but not my lump sum payment.. But this is a road I will cross when/ if it comes to it.


I think I will still call my doctor today about this headache. I don’t want to keep bothering her but I am still a little worried about it. I go for my bloodwork again this morning. I’ve felt tired from the IVGG. The nurse told me that it is normal to feel tired from that.

I was thinking next time I see my hemotologist , asking her about maybe work part time for awhile. Any thoughts on this?


Thanks again for everything.


Michelle.

Michelle,
I think you have had two great idea's there. Go see your Doctor about the headaches, when in doubt check it out.
I changed my work hours to part time and this has made a big difference, things are just easier when you are not worn out from work.
Milly

Thunderclap:

www.mayoclinic.com/health/thunderclap-headaches/DS00644

Michelle,
You do have a lot of time vested in your job--so you need to figure this out; wheather to stay at your job, or try to work less hours (maybe your doctor could even give you a month off until you feel better). Milly does have the right idea--go see your doctor and get the headaches checked out. Hope you get rid of those nasty headaches.
Dee Dee

Hi all:

Well I talk with the hematologist office, my pilate counts was 240,000. So she said unless the headache is really bad (it’s more of an annoying headache on the one side of the head), she said I shouldn’t worry about it but if it get worse to call. Of course stress at my job and stressing over this annoying headache (which I really think is sinus because my office isn’t the cleanest or best place for air flow). I am do for a follow up with my hematologist on Nov 28th.


I think the part time idea or even taking me out for like the month of December would be a good idea, I will discuss that with her.


I am feeling kind of lousy today, I don’t know if that is just from all the running around with appointments, working all day yesterday or all the IVGG stuff that is circulated in me.

Michelle