scared and confused

Michelle,
It is a big relief to know that it isn't your platelets causing the headaches. I agree with you concerning the IVIg and also the working conditions of your office. Are you still on any Prednisone? It sounds like you had a similiar treatment like I had last year: Decadron and IVIg--then the platlets went up (I just had a more vigorous treatment plan than you). As I mentioned to you earlier, I still have the effects from the IVIg and the Decadron. It's hard to explain--but I just don't feel the same or have the same energy. And, my husband will definitely agree with this.

I am just very, very thankful as long as my platelets stay up. So, if you could take a little time off or cut down on your work hours for a while, this might help you until you are feeling better; this is something you will have to think about and decide for yourself--as you, yourself, know your job better than anyone else.

Good luck to you and hope you feel better soon,
Dee Dee

Michelle,
I know that this just happened to you last month (for the first time). I was just mentioning myself--that I had a relapse last year and what my treatment was. I can understand how you feel since I had a similar treatment.

Dee Dee:

Oops I missed read that the first time. When I re-read it, I seen you said it happen to you last yaer. That's whet I got for tryin gto multi task.

Sandi wrote: 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.

With a thunderclap, you would not be posting about it -- you would be wondering whether your brain has slowed down or if you are just imagining it. At least that's my experience. If you have a brain bleed, you definitely know something is different; the character of the pain is different and you most definitely are unable to function normally. Thunderclaps are usually accompanied by other symptoms, depending on the location of the bleed. Common symptoms include feeling like you are in a fog, slurring your speech (or at least not wanting to talk at all), numbing (like parts of your body going to sleep). If you ever have a headache with additional symptoms on only one side of your body, call 911.

Thunderclaps are the second worst type of headache. Cluster headaches are worse, but have very different symptoms. Clusters usually start near the eyes, around the front of your head, whereas in thunderclaps the pain is very specific to the part of your head where the bleed is. Thunderclaps are like a point of pain that radiates; clusters are like an area of pain. I have read that clusters are the worst pain known, and they put many cluster patients on suicide watch.

Migraines are very different. Migraines throb, clusters and thunderclaps do not. Migraines often come with aura (you see lights floating around), clusters and thunderclaps do not. Clusters and thunderclaps are far worse than migraines. Migraines are treatable if you catch them early enough (I can see mine coming in my eyes, and I have about 10 minutes to take something to head it off before it really hits); clusters are not treatable with anything anyone is likely to have in the medicine cabinet -- even heavy duty stuff like percocet or dilaudid won't touch a cluster. I treat mine with a Xylocaine mist into the nose + pure oxygen + nerve blocks. Doesn't always work. Clusters happen in clusters, often at exactly the same time of day, down to the second. Thunderclaps -- there is no treatment other than getting to the ER.

If I ever had a headache that lasted longer than about a day or so, or any unilateral symptoms, I'd be on my doctor's doorstep (or calling 911) pronto.

I've had stress headaches that have lasted weeks. Getting a massage or going to the chiropractor usually helps those (short term).

Gout:
Thank you for the explainations. I seen my hemotolgoist today for follow up visit, the headache I was having was combination of sinus, stress and a mild reacation from th IVIG. I had a few weeks ago. Headache has gone away for now.

My count at the moment is 230,000. But she is goign to start to ween me off the predisone, 60mg for this week, 50mg for next and 40mg for next. I am scared again that my counts will drop (I am trying to use Sandi's trick she posted on another topic on the boards of "willing my pilates to stay up). I am assuming lowering the dose of predisone may cause headaches.

With all this going on, I am not really in the mood to enjoy christmas at all, I don't even feel like putting up the decorations this year. plus with Mom passing in May , it has made this diagnose (which I am still angry about showing up in my life and my body turning on me like this, when all I ever did was right by it (sorry I need to vent).

The hemtologist said if my counts drop while we are lowering my predisone, she will have to think about taking out my spleen. I thought there are other treatments before I'd even think of that. It scares me to think about taking out my spleen. Becasue I am 47 years old and I've read on here the older you are the more complication and also the risk of dying during or after surgery is higher the older you are. Also the fact you are suspectiable to more infection ect.

Thank you all for all your help and support during this diffcult time in my life.

Michelle,
Your count is great and great that the headaches have been explained, stress does all sorts of things to your body.
It is also good that the pred is going to be tapered but you now need to prepare yourself for the taper, you might feel pretty bad for the first few days of each reduction in dose, made me feel like I had a pretty bad flu (body aches, head aches, tiredness ect) also your counts may jump about a bit when the dose is lowered but don't panic. My counts would always drop about 20 to 40k each time the dose was decreased but they always came back up again (this might not even happen with you) I have found that some people taper really fast some go a whole lot slower, I went really slow took me about seven months to get off it, I decreased dose by 10mg every fortnight until I got to 30mg, then went down by 5mg until I got to 20mg then by 1mg each fortnight. I hated the taper but I am now glad I did it, my counts have been above 100 for nearly twelve months.
I understand the anger you feel but it will pass, I have felt that way as well now I am just ok with it, just part of my life, something that I can park away in the back of my mind and life just goes on as normal (my Rheumatoid arthritis has a much bigger impact on my life then the ITP ever has)
Get those Christmas decorations out and enjoy this christmas and many many more, and you are right there are many more treatments, if you need them before you even think of removing your spleen if that is the road you choose to travel, just for now though I don't think you need to worry about that.
Good luck Michelle, stay in touch.

Hi there, I don't believe that headaches are a common symptom when reducing steroids. I had funny knees when withdrawing. They felt like jelly and not quite as though they belonged to me. But I thought it was funny and didn't get stressed by it. My counts stayed up all during the taper and for six weeks afterwards when they crashed. It's true to say that not many get a remission from steroids so don't be too surprised or worried if your counts do fall.

There are other drugs to try. I tried 6 different treatments before Nplate has brought me more stability. You don't have to have your spleen out if you don't want to so don't let them do the deciding for you.

hi.

Went to family doctor today. When I woke up this morning, the whole right side of my face was very swollen. It went down by the time I got into the doctor in the afternoon. I still had headache I couldn't shake. She said it was sinus but also said the my plate count drop from 230,000 to 160,000. My family doctor said my hematologist has been very good at communicating with her and sends her updates all the time, which my family doctor says she appreciates.

I am starting to be scared all over again with the platlets dropping again and me feeling miserable. I know 160,000 is a safe zone but that's big difference from 230,000 last week when I felt great.


I still (as I am sure many of you do) want to know why THIS ITP had to come into my life and make a big mess of things. Sorry venting again and feel like crying. :'( I just want to go back to a normal, healthy life without this ITP.

Michelle - everyone wants that. I want my life back without Lupus too. Not going to happen. All you can do is try to live life as normally as you can and go with the flow. Take one day at a time.

It takes time to accept ITP and to learn to live with it. A lot of the time, just as someone does accept it, they get an unexpected remission. It's very possible for that to happen and you just have to keep hoping. There are ways to manage ITP that are not as rough as Prednisone can be.

Your counts are still great, and it's possible that they will be up the next time. Fluctuations happen all the time.

Is your doctor treating your sinus problem? Is it an infection? I have constant sinus problems so I know how miserable that can be. Mine can only be fixed with surgery; hopefully yours can be treated easily.

Sandi:

I know in my head my life will never be the same "normal" again with this ITP. It's just that is all so new still and I am tired of going for blood work twice a week(though I know I have to do it for now) since I don't drive it takes me two bus to get to the blood center twice a week(I get up at 4:00 a.m and out the door by 5:45 to get the bus to the transfer center and then the bus to the blood work place so I am there when they open at 7:00 a.m.) and then one bus back to work. It's going to be hard in the winter time. Plus the constant appointments every 3 weeks with the hematologist and any treatments she may want to try.

When this first happen and I was admitted to the hospital and they brought the platelet count up, I thought ok, it's taken care of done, I can go home and back to normal. Nobody told me (until the second time I was in the hospital) this was going to be a continually and life long disease I am going to have to live with. I am trying not to let it rule my life, but I am constantly watching for bruising, rashes, don't know when I get certain symptoms now when I should worry more or not worry.

I think too, I am anxious and scared with all this is because I never had to deal with a major diease in my life, except my under active thyroid which was an easy thing, one pill every day, been doing that for 15 years.

Like I said in an early post, everything that could go wrong this year has. 2011 has been a very bad and stressful year for me. They say God doesn't give you more then you can handle. At some points though I feel like He's give more then I can handle right about now. Some days I just want to bury myself under the covers and just stay in bed and not do anything. I am just wondering what else is gonna go wrong or show up. I know that it has been said on this board that very rarely does anyone die from ITP. But that would be my luck, I would be the one to die from this or spleen surgery if we go that route. I know, I should think positive but I am finding it very hard to think about anything positive right now and work stress does not help matters either.

I am so glad for the people on this board that I can vent too, since there is no support group in my area for me to talk to anyone via phone or face to face.

We are using clairtion for the sinus for now, family doc is hesitant to prescribe antibiotics since I am allergic to so amny of them, and she was hesitant to prescribe the one I was not allergic too, because I was taking the dixocycline (sp? for what we thought was bronchitis, right before this whole ITP thing showed up.

Thanks for reading this far and listen.

Michelle

Michelle - yes, your life can get back to normal with ITP. I've had several remissions and during those times, I did forget about it for a while. Lifelong doesn't mean constant.

There are usually a lot of appointments in the beginning, those will slack off in time. There will also come a time when you won't have to get counts twice a week and in fact, when counts are up, you can suggest that you spread them out a bit more.

I don't like that saying either and I have said the same thing...that I have had more than I can handle at times. It HAS been a bad year! Try to schedule some things that make you happy, like Christmas shopping or something. I know you don't feel like it but once you get out and start, you'll feel better.

Sandi:

How do you learn to forget about it once you are sure it's in remission, isnt' it always in the back of your mind?

I can't forget about it right now because mine is not under control at the moment, and I have constant reminders, the blood work twice a week (and wondering if I am going to get a phone call at work or home to go to the ER cause platelets are down) and the predisone every morning is a reminder.

At least the thrush is better.

I was out shopping last weekend but that was when I felt really good with platelet counts was a good 230,000 and I felt great for the first time since this happen.

Michelle I do wonder why you are going for blood tests twice a week. Even at my most unstable times I only went once a week. And if my count was good at a visit I would get to wait two or more weeks just depending on the count. Maybe you could ask to go weekly to start with and then space it out even more. While you are going so often you can't forget about it, that's quite normal. When you get to go less often you do forget about it in between appointments.

No, I can honestly say that when my counts were up, I did forget about it. Well, maybe not forget, but I didn't worry at all. I think the difference here is the difference in our doctors. When my counts were under 5, I didn't get a call to go to the ER. I got a call at work from a nurse and she'd tell me that they were calling in a script for Prednisone. I'd feel bad for a minute, take a breath and go on with my day. I learned that even when things were bad, you just deal with it and go on. I had three young kids at the time and they needed me to be a normal Mom, so I did my best to do that for them. Don't get me wrong...it wasn't easy and I whined a lot to my husband. Then I decided to just whine here instead and no one in my family had to put up with it. After that I stopped whining altogether because I realized that other people here were having a much harder time than I was so I considered myself lucky. For example - people who had low counts and were also on blood thinners. People who could not get counts above 5 no matter what treatment they tried. I responded, I was being monitored, I was fine.

Ann is right. I didn't go twice a week either. That gets old pretty fast.

You'll get there.

Ann:

I am assuming the twice a week for blood work is because I was just given this diagnoses mid-october and because I was in the hospitable within in a weeks time both on the oct 18th (when at the point we didn't know it was ITP, just my count was lower and the family doc called and said get to the ER) and then a week later, when I went to blood work and my count was still really low. So I am assuming she is monitoring and because I am now dosing down off the prednisone. I see the hematologist on the 19th of December.

I am not married, don't have kids and since mom has passed I am kind of by myself. My bro is around but it's hard to talk to him about this. My best friend (who found this site for me) we talk almost every night, but she lives about 1.5 hrs away from me. Before this ITP showed up , I was planning on leaving my job in april 2012 and moving down to be closer to my best friend, well this ITP has messed that up, because if I would leave my job now, i wouldn't have my medical, so it looks like I am stuck at my job at least 5 more years then I can leave with full medical (though income would be less) but can I really stick it out 5 more years. But it certainly looks like I won't ever be able to move down by my best friend now, as even if we do put my ITP into remission, I need to be close to my current doctors in case it would come back and for monitoring, so I don't see my plans for moving down near her ever happening. I am mad at the ITP for ruining that for me and now it's also going to make me look like a big liar at work, since most people (word spreads fast at my work) knew I was planning on leaving April 2012.

Michelle,
I thimk Ann and Sandi are correct, twice for counts is a lot and it makes you focus too much on this.

When I was first diagnosed I was having daily counts on instructions from the hospital doctor, when I went to my doctor (who has his faults) he changed that to fortnightly and told me that he thought that I would get very tired of all that medical attention and that he thought it was not needed anyway.
I think you need to give yourself a break, you are a bit over one month in to all this. I was pretty much like you are for about the first six months and then for some reason I just seemed to accept that I had ITP and it was not the end of the world, it was just time to get on with living.
Maybe you could call your Doctors office for your test results so you are not sitting around wondering what they are.
I am a little different in that no I don't forget that I have ITP but I do tend to think more a long the line of I have ITP and it is under control and I don't need to worry about it and I hope that you can find this peace of mind also.

On Monday I am going to call my psychologist and make that appointment. I am having way to much emotion, not only with the ITP but everything that has happen this year and I think this diagnose has pushed me over the emotional edge right now.


Also, if I still have this headache on Monday the family doctor told me to call her. Do you think it would be crazy of me to ask if we could have an MRI or CAT scan done just to give me peace of mind, there isn't something else going on in there (like a brain bleed)and it's only the sinus.. I gave myself a concussion back early September they did a CAT scan at time and did't find any bleeding in the brain so that tells me the ITP wasn't even a factor in my system at the time I would assume.

Thanks again everyone for everything and the support.


Michelle.

Michelle:

A CAT scan in September would not have shown whether you had ITP or not at that time. It would only have shown bleeding in the brain, which is a rare event. I doubt that you have that now...you would most likely have stroke symptoms.

I don't think you can say that your plans are ruined. There are other ways. First, you could possibly look for another full time job near your friend that would give medical coverage. You can't have a lapse in coverage though so you'd have to go from one job to the next. It is possible. I'm sure your friend has doctors near where she lives. You don't have to keep the ones you have now. There is a woman on here who moved to Japan in the middle of her ITP diagnosis.

Most of us have kept working with ITP. I did - didn't have a choice. I rarely missed any work time because of it, mostly just the 5 days when I had Rituxan infusions. I battled it for 6 years on and off and it was the hardest when I was on Prednisone. You might want to look into Rituxan if your counts drop. That is probably your best shot at remission.

What I'm trying to say is: don't let ITP ruin your life. You can keep going with this. You really are over-stressing and I'm glad you are making that appointment. I think you need to schedule a massage as well. Relax.

Michelle

I don't know the US health system but in Oz they wouldn't do expensive test's without a good reason.
Some questions to ask yourself, Do you have slurred speech or any of the other symptoms of a brain bleed? There are other Doctors, what would you do if your Doctor retired, left for other reasons or simply you didn't like your Doctor, you would have to find another one.
I think if I was getting up at 4.00am in the morning to have bloods done then I would be tired and stressed as well.
I also think when you are having test done all the time you worry about numbers that most non ITP people probably have and don't know it. Are you having any ITP symptoms like bleeding or bruising?

Milly:

No slur speech, a little blur vison out the right eye(but it coees and goes doesn't last long and told doc about the yesterday and some presurre) She does seem to think it's sinus because it's only on one side of the head Right side of face very very swoleen yesterday morning that is why I went to the doc , that plus the headache.adn feelign a little dizzy off and on... Been since the start some slight bleeding out the right nostrail every morning but it's not heavy and stops and clears up. Told family doctor and hemo about that. Neither seemed to concern about that at this point (as it is not gushing out, it's just a little bit and can be from the sinus and the very dry winter air and my work place is not the best for moisture in the air). Here in the US, they are doing all kinds of test it's more $$$ for there pocket, so sometime they even do unnecessary ones. Do you have universal health care coverage in OZ, are all OZ citizen covered?

Sandi: Thank you for bring up that I can not have a lapse in medical coverage. LIke I said I don't drive so it would be very hard for me to get down my friends way and look for a job, before I even gotten down there. I guess I am stuck at my crappy job (if our current Governor (I work for the state) doesn't get his way and eliminated clerical staff all together in our office, it is looking more and more that way recently). Just another thing for me to stress about. Also I read on other section of the message boards about the Rituxan, people say it works but has very scary side effects but nobody has said what the side effects are. Is that like a taboo for anyone to say that, as not to scare anyone who maybe thinking about it.

Rituxan or rituximab is not a drug to be taken lightly but when it works it works well and can give at least a year's remission and often longer. It works for about 50% or slightly less people. The very scary side effect is PML. It often does get a mention here. Someone has started a thread about it just recently. It's a very rare side effect but usually fatal.

You can read about it here...

www.ninds.nih.gov/disorders/pml/pml.htm

Michelle:

Most people have few or no side effects with Rituxan. For most, it's the easiest treatment there is. We've spoken about the side effects quite often. No taboo. I had a rare serum sickness reaction which was pretty awful, but I am only one of few who had it. Even if you would get it, you can recover in a few days.

Some of the symptoms you are feeling could be from the Prednisone taper. Prednisone can make a person feel tired, weak, dizzy, etc.

Michelle,
Our health system is really different to the US, We have Medicare system and it is administered by the government if you earn above 18k per annum you pay 1.5% of your income to medicare, below 18k you pay nothing above about 170k you get extra levy. But everyone has access to medical care regardless of your employment, our health system is not tied to you employment, you can however join a fund, anyone can do this and this cost about 2k per annum and this gives you access to private hospitals and all the extras like accupucture, naturopath, dental care, fitness clubs the list just goes on and on. But everyone is covered by medicare and there is never a co pay.

Milly

Gee why can't the US do that? I would love if you don't mind to e-mail you privately about the difference between the US and Australia, not just the medical but other things. Maybe I should move to the land of OZ. Sounds a whole lot better at least given the health care system and I am sure vacation time, jobs, ect or different too. Sounds like the pace of life is better there too.

Michelle

Hi Michelle,
Our health system is good but we do have down side as well waiting list for elective surgery can be long and a few other things as well. We are a funny country, we are probably the only country that you get paid more for being on holidays then what you get for being at work. I will send you an email tonight, just now I have to go to work!

HI again:

I first want to thank everyone on this board for the advice, understand and compassion.

I haven't' gotten my month period yet, should I be worried It was due on Wednesday. The right side of my stomach hurt(not double over or anything) it feels more like it's bloated but just on the right side. Should i be concern about internal bleeding or it this just from tapring down the predisone? I have no new bruise or rash. I go again Monday for my blood work. My right hip joint also hurts and is sore and I am feeling very tired.
.

Prednisone can cause irregular periods, so I wouldn't worry about that. As for the bloating, could be Prednisone related too....hard to tell. Prednisone can also cause fatigue and joint pain when tapering. It all sounds normal, but you could check with your doctor to be sure (be aware that they sometimes do not know the entire list of side effects).

Michelle,
Try not to stress yourself out too much. I was in a really bad situation with my ITP last year and the doctor really believed that none of the meds were going to help me. He just thought I was going to be chronic at that point (and, still could happen). I mentioned earlier that he told me (my hemo) that he thought the stress brought on the recurrence of ITP in some of his patients.

One good note that you need to consider: that prednisone does help you when you need it--this is a good thing. Some people (my self, included--at times) do not respond to prednisone. This really starts to worry the doctor. Just try to make sure that your taper is really slow (this helped me some years ago). I also try not to focus on too many negative things as this just gets you down.

Even though I know it's hard--try to find some positive things in your life and find something to do that you really enjoy.

Thanks for the post. So far plates have stayed up as I am dosing down on the prednisone But I am not feeling too good today. Still worried as I haven't gotten my period yet and it was due almost 1 1/2 weeks ago.

I try not to stress too much, my job is stressful enough. I know everyone says to try to think and stay positive , I am having a really hard time with that. I , especially on the weeekends when I am home by myself, tend to feel down, cry a lot more and think more about having this ITP, especially when I am not feeling good and don't have any energy to do things. I still do feel like ITP has runied my life as I knew it and all I am doing is watching for signs of platlets dropping, going to bloodwork, appointments, treatments, waiting for the dreaded phone call after a CBC that I need to go to the hospital. Scared of internal or brain bleeds. It really makes life harder to live, when you feel as though you can’t plan anything long term. Why did I have to get this in the first place (sometimes I wonder if I didn’t take the darn antibiotic for what the doctor though was bronchitis, if this would have ever showed up, I know there is no way to say for sure).

In my head I know I could have worse disease I could have gotten with worse fatal rates then ITP. So maybe that is one thing to be grateful for out of all the auto immune disease if I had to get something it would bet ITP. I hope someday they find a cure or vaccination for this and we can wipe ITP off the planet.

Thanks again for letting me vent. I find this forum the only safe place I can really say how I am feeling as everyone understand because they have been where I am.

It’s hard to vent to my best friend as she can’t really understand my feelings or fears, like everyone else here does.

Michelle