Newly Diagnosed, extremely depressed.

I'm 17 years old and the problem started about a year ago, my platelets went down to around 70 then 40 then up a bit to 50 and now it has been going down progressively to only 7. I had a stomach virus - helicobacter Pylori which then somehow made me Constantly sick and then I started getting sick so much so the doctor prescribed antibiotics and I kept getting colds after that so then he gave me an immune system strongifier .i tried the steriods for only 5 days, doctor thought I was pretty young so I only took it for a short time. It didn't help me whatsoever and my platelets started decreasing. I had to move to another country and the doctor here tells me that I have chronic ITP and now I'm in such a depressed mood. I've never gotten the bruising and dots but now the dots are apparent, in very small amounts. The doctor here also made me go back to the steriods which are making me fatigued and tired. What am I to expect? I can't believe this is happening to me

Ww - everyone has a different experience, but the good thing is that ITP is manageable most of the time. The treatments can be hard to handle sometimes, but many people get to a point where ITP goes into remission or they are able to maintain a safe count. A count over 30 is considered safe.

It's sometimes hard to accept a diagnosis, but many people live perfectly normal lives with ITP. Read as much as you can and learn. It will help a lot. Chronic does not mean constant or forever.

Ww - You have been sick for the last year and have also had a lot going on in your life (with your move to another country--new doctors). Try to research as much as you can about ITP so that you will understand it better. Also, once you can get your health better under control, maybe you can also get your platelets to stabilize a little more.

Good luck to you, and try not to get so upset (this only makes things worse).

Understand your feelings!!! I was in your shoes when diagnosed, 8 years ago. I also went through two depression phases after diagnosed. If you feel the depression is getting worse and controling your life right now, Please talk to your Dr!!! I was embarresed and ashamed to admit I was depressed and needed help. Once I received treatment for the depression, I was amazed with how it brought me back!! I have been on a medication called Celexa. Prednisone can have some awful side affects, a lot of times worse than low platelet symptoms. We all have different experiences with the ITP disorder and responses to treatments. Treating ITP is a wait and see game. One waits to see if they respond to a treatment. Prednisone is basically a temporary treatment for ITP, to raise counts quickly. Usually counts will drop as dose is tapered. The best thing you can do right now is TRY to relax as stressing out over this is not going to help you. I know, easier said than done, but trust me you will feel better not stressing out over this. As Sandi mentioned, chronic does not mean constant and forever.
Definatly research as much as you can about ITP and treatments.
Once you can shake the other crap you are dealing with it will be easier to focus on ITP and your counts might rebound to!!!
Platelets also carry Serotonin which is a mood regulator in our bodies so I believe this is part of your "depressed mood". The Prednisone is probably part of it also.
We are here for you!!
What do you mean by, "immune system strongifier"?

Thanks for the support you guys! I am still in shock, I was living with nothing and was worrying about silly things. The doctor has given me a later dosage of predisoline and it's driving me crazy emotionally and physically. The medicine is worse than the ITP itself! I have no bruises so I'm assuming my body is doing well there but the red dots have increased which I am afraid of.

@dean - the medicine was a immune system strengthifier since I had a really bad one and I'd get the cold every 2 weeks.

I am still unclear as to a medicine that is "a immune system strengthifier". Is it like a combination of things?
The shock will wear off and you will be just fine. Getting off the Prednisone will help. Have you had counts checked lately?

I love the word strengthifier. Is it a multivitamin perhaps?

NO worries, I have been dealing with ITP for over 10 yr's now. I have had everything imaginable done and the only thing that has been keeping my plalets stable (20k-100k)for the last 2 yr's is N-plate. Prior to that i was in and out of the hospital due to the extrmely low count's and bruising/patikia. It is a pain to go every week and have the cbc done stat and wait for results to see what dose amount should be, but on the other hand i look back at how it was before in and out of the hospital on a monthly basis and then i think to myself "not so bad". Maybe check with your Dr. and ask his opinion. Trust me i have had the spleen removed, chemo, steroids (dekadron and prednizone which caused me to have cataracts from yr's of use, I have implants now and my eye sight is 20/40!)and several others before the N-plate came about. In fact i was the 1st one at the hospital to try this treatment. ITP doesnt hold you back in life, in only makes you stronger...you will come to realize this as I did in time.

Best Wishes,
Scot

Good for you Scot! I'm glad you found N-Plate and that it works for you. We all have to work through these meds to see what works for us.

Thanks, your stories are great to hear. I can't remember the medicine that boosted my immune system but I should go
And ask about it. Today my platelets decreased once again from a 41,000 to a 29,000 and I'm just rally sad. The predisoline has exhausted me for no reason. Doctor says I should continue till Wednesday and then see how that'll go, if that doesn't go then I have to resort to IV and then if that doesn't help, splenectomy (which I don't want as an option). I just wish there was a miracle for this thing to permanently disappear,

Try to remember that the prednisone also gives you some depression. And, your platelets still aren't that bad. As long as your symptoms stay in check, that is what really is important.

Have you read this? It might help a lot.

www.pdsa.org/forum/5-newly-diagnosed-a-frequently-asked-questions/8344-excellent-advice.html

Sandi wrote: Have you read this? It might help a lot.

www.pdsa.org/forum/5-newly-diagnosed-a-frequently-asked-questions/8344-excellent-advice.html

Believe this is the first time I have read this!! Very good advice.
Hang in there Ww!!! It will be OK.

Don't worry your not alone! i was diagnosed almost a year ago, and i'm 21...i definitely know how your feeling i kind of feel depressed myself at the moment, being so young and stuck with this disease...i'm exhausted every day, and im feeling miserable and alone, and it feels like i keep getting bad news. im bruising like crazy right now so maybe that has something to do with it, but, the point is your not alone! everyone here can relate to you in some way just keep your head up and always look for the positive in everything! with time we'll learn to manage it and get through the worst.

What kind of treatments have you been on? Has any of the treatments worked for you at the present? Some times it takes time for your body to adjust.

And, you are right in saying that you are not alone.

I'm not sure if you're talking to me DeeDee Marie, but if you are I'm not on any medication...just trying to see if I heal naturally...

I was--but I didn't realize you were not taking any treatment. I thought maybe the prednisone was affecting you. I don't blame you for wanting to try and heal naturally. I, myself, may try that the next time my platelets fall. Some of the meds are really harsh, and when I attended the ITP conference, one of the doctors suggested to me that I shouldn't not take N-Plate or Promacta because of my family history. It makes wonder also about Ritumab.

Just be careful if you are showing signs of active bleeding (like blood blisters in the mouth). This is when I get concerned.
Good luck to you and hope you start to mend and fell better.

Thank you all for the support, makes it much easier.

@Sandi - Thanks for the link, it was a good read that made me more comfortable with what i'm facing.

@wishfuldreamer04 - i'm extremely happy that there's someone who I can relate to who's close to my age and whatnot. I'm going through continuous bad news.

Today I went to the doctor and my platelets have once again decreased to 11,000. I have no symptoms at all, no bleeding, no bruising, nada. I've been on the prednisone for a while now but theyve just managed to lower the dosage to 20mg. My platelets did go up when the dosage was high but now it's hardly reacting and all i've got was really bad acne, and im continuously sweating as a result of the medicine. The doctor doesn't recommend the IVIg as she feels like I won't be affected by it and that i'll be wasting 4,000 dollars on it, when it will only last me a few days. I am hoping maybe dietary or faith will come in handy and somehow my body will heal itself. I've decided to eat alot of Vitamin-C foods and eat healthy to see if there is any dietary effects and just a chance that my immune system will fix itself. I feel like the only symptoms i get are that there are rough spots in my mouth but in the same time they can't be considered blisters so i'm not quite sure. So the steriods aren't working, and the doctor doesn't recommend the IVIg, I don't know what option I should take. She immediately recommended the spleenectomy, which she says has a huge success rate but I will have to take Penicillin everyday for the rest of my life (which doesn't sound so good considering i'm only 17). I told her about Rituxan, she claims that it has big side effects and could not benefit me. I really don't know what I should do, I am running out of options. I should tell her about N-Plate and research more into this.

She immediately recommended the spleenectomy, which she says has a huge success rate but I will have to take Penicillin everyday for the rest of my life (which doesn't sound so good considering i'm only 17). I told her about Rituxan, she claims that it has big side effects and could not benefit me. I really don't know what I should do, I am running out of options. I should tell her about N-Plate and research more into this.

A few points if I may....
* What does the doctor consider a "huge success rate"? 40%-60% is not huge....it's roughly 'half'. And that doesn't mean the 'half' are cured. They may get remission lasting 10 years, 10 months, 10 weeks, or 10 days. Look around here and read some of the posts by folks who have had a splenectomy.
* Why would she say you'll have to take Penicillin every day the rest of your life? Never heard that one. (note: Penicillin wasn't even discovered 98 years ago when they started using splenectomy to treat ITP). But there are things you'll have to do and be aware of post-splenectomy. Never heard of taking Penicillin every day though.
* IMO; Your doctor SHOULD BE TELLING YOU about Nplate, not the other way around. If the person treating you doesn't know about the current ITP-specific treatments....after several years of Nplate and Promacta being in general use....then you may want to find a doctor who is more up-to-date.
* You are only 17. There is still a chance your ITP will simply rectify itself in time.

It's true that penicillin is recommended after splenectomy in the UK and Canada although I know people who don't follow that advice in the UK. Some simply have some antibiotics on standby just in case.

Personally, I couldn't live without a spleen. The worry every time I felt ill would be unbearable. The keep wondering if I should go to the GP now, tomorrow or wait, would be too anxiety provoking. I'd rather have the ITP and low counts. At least I know where I am with that.

Also, I doubt this doctor will go with Nplate because it seems to me they are wanting to go with the cheap options. Azathioprine is cheap and works for some. Maybe suggest that.

I agree with Ann. I would never go for a splenetomy either. I've had a lot of serious staff (or is it strep-type) infections in the past. Also was told that I shouldn't take N-Plate or Promacta due to MDS in my familly. So, if I do relapse I will probably just learn to live with low platelets.

I meet a lady in my similar situation and she had already progressed to what they thought was the start of MDS.

WW:

I agree with the last 3 posts.

There are quite a few risks to splenectomy, so I'd want to research that before agreeing to it. I can help you out with articles if you want.

I did want to add that your doctor seemed a bit dismal about Rituxan. Most people do not have any side effects and get a pretty decent response that can last. You could start a thread asking about experiences, or do a search on the Forum.

I know ITP can seem scary and most people start out fearing low counts. But in time, most realize that it most likely will not kill them and they start to relax. You will find your comfort zone. It's not necessary to have normal counts, just safe counts (over 20). You don't seem to have symptoms which is great!