Hey everyone

Hello everyone. I'm 19, new here and I 've diagnosed with ITP since the beginning of March. I went to the hospital after noticing small petechia on my hands first and then slowly a couple small little wounds on my feet. It all started with rashes that would appear and disappear continously all over my body, mostly on my arms and back. I actually remember these rashes that would just appear every 1-2 years and would disappear again before but I hadn't had any blood test for about 5 years, so I don't really know how long and if I have been suffering from ITP all this time. I went to a dermatologist one day to check what might be wrong with me since it seemed to be something on the skin. I knew however deep inside that it wasn't a skin problem. I had a freakin massive blister on my tongue from biting it and my lips would make blisters too every time I even tried to slightly bite them with my teeth. I was bad. The dermatologist suggested I should go to a hospital and get checked out. And when the needle came out to draw blood for testing at the hospital the whole vein erupted and made a huge bruise that filled most of the inside of my right arm. I had 4 thousand platelets. I was given high doses of intravenous methylprednidosolone which made me go totally insane and made me think all sorts of things. It was like something was crawling from below my brain, as if I could almost feel it. Not a good feeling I stayed in the hospital for a week, released at 55 thousand platelets and and the next day after I was released, I was up to 132 thousand platelets. I quickly tapered off the medrol since the doctors saw I just couldn't take it. I kept a high number for about a month after I stopped the steroids (around 200 thousand) which I received for a total of 4-5 weeks.

A month later I noticed again tiny, very tiny petechia on my left arm and I saw blood on my shirt from a pimple that had popped. I knew something was wrong again. I got checked the next day and I had 50 thousand platelets. I called the hospital and they told me to come in whenever I could within the next 2 days. I decided to go the same day I called. They did blood tests again and within the same day I had dropped to 17 thousand. They gave me IVIg and 2 days later I was out again at 29 thousand with an appointment for Monday. They talked with me and I discussed the splenectomy scenario since it seemed that IVIg worked on me. They did blood tests again that day and the splenectomy scenario was quickly left behind to try and raise my platelets again, since the immunoglobulins that would have normally lasted a week at least, lasted only for 6 days and since I was down again at 4 thousand. I discussed the possibility of another type of cortisone, since I could identify with the side effects that medrol had on me on the internets and since I discovered that most people that couldn't handle medrol could handle prednisolone just fine. Everything went great eventually and despite the expected anxiety, hyperactivity and mood swings at these kinds of doses I didn't feel totally crazy like I did with medrol. I was released yesterday at 32 thousand platelets and I have an appointment again for Monday. Seeing the incredible results I had the first time with medrol, I 'd like to discuss the possibility I receive corticosteroids again, but this time lasting a proper 3-4 months as it would normally be expected. I am not ready to take the splenectomy yet. And it has only been 3 months. And I want to live at least for as much time as I can, at least for the summer, as a normal person before I relapse and if I relapse. And so here I am...

PS: Does anyone else get a taste from the cortisone injections? I assume many of you have been given such injections, and I noticed prednisolone smells and tastes like gum once it starts circulating in your body. Irrelevant fact.

Welcome to pdsa! Its a good place for information. soon you'll know more than your doctors!

wow that IV methylpred sounds really horrible! I've never heard of it- sounds like you've had a wild ride so far. I had 20mg of dexamethasone, which isn't even as high a dose as they recommend(40mg). I was crazy! hearing so much noise and voices in my head I couldn't sleep- at least I knew it was the drugs so not truly mad but miserable, then the crash I got really depressed. My counts went up and quickly back down- not worth it. Never took that stuff again.

Good news that you can maintain your counts for a short time without treatment. People can sometimes go into remission. esp since you're young and its early, I think you're wise to hold onto your spleen. At least until you've tried a few things and given it some time.

Here is an irrelevant fact for you. When I took Rituxin infusions for ITP my counts didn't go up that much just to 20K but water tasted delicious!! Esp ice water. It was so refreshing, uplifting and just tasted great. Then after about 6mos my counts went down and water began to taste dull normal again. good luck!

predniman wrote: I noticed prednisolone smells and tastes like gum once it starts circulating in your body. Irrelevant fact.

You can smell and taste a drug circulating in your body? Whoa.

Good luck with Prednisone this time. I hope a longer course works for you. If you need a treatment after that at one point, there are others besides splenectomy. We can help you out here with other option suggestions.

Welcome to pdsa. I hope that the prednisone does work for you. I had the opposite steroid regiment. I was given prednisone with no effects at all....well I did have the crazy side effects but no platelet increase. I ended up trying Rituxin and given high dose dexemethzaone with no platelet effects. I ended up getting this terrible rash and my doc put me on a 5 day round of methylprednylisone pills. It ended up getting my platelets up to 250,000. However, my doc refused to keep me on it or do a taper. Anyways it did have some side effects. I will tell you I am a shop a holic. I took the first one and we went to ikea. I started panicking and sweating and had to leave. I never leave stores lol.

As Sandi said, we do have people who have had success with other treatments besides prednisone including myself. I was in your shoes and didn't want my spleen out yet either.

Thanks again everyone for the support. I'd like to know if anyone has had any side effects from Rituxan/Rituximab and if there are any. Doctors suggested splenectomy as a second line treatment after the steroids and advised me not to go into the rest of the stuff (thrombopoietins, rituximab etc). They said I had a 66% chance to be completely cured and that at my age it would probably be the best thing to do after the steroids. What can Rituximab really do to you? I know already I don't like thrombopoietins. I'm scared of something that causes such increased production especially in the bone marrow, a place that I believe just shouldn't be touched. I don't know, I'm just asking. It's been the 2nd week on Prezolon and I'm starting again to become afraid of the steroids... Hypo-mania, way too many thoughts to handle all at once, the classic headache and I'm starting to feel again the "drop" followed by some imbalance and slight anhedonia after a few hours. Maybe I even started to like the hype. It's kinda nasty... Will I be able to handle that again?.. I don't feel totally crazy like I did on Medrol but yet again I see the mental boundaries slowly fading away every time I take the pills. I'm just dizzy and these days I've been writing like freakin mad all sorts of weird things (that's my new habit yeah..). How did you guys take it? My brain isn't normally very active to be honest. I am kind of a spaced out guy, thinking a lot, I don't take much info from the outside, many times I would get very anxious when something happened, something that I believe might have also led me to develop ITP, since the days before the rashes came, I was very, very nervous about something concerning university, and now it's just "boom". Every door in my mind opens up and I get a bit scared... So I'm still thinking about the possibilities as much as I can with this chaotic and fluctuating state of mind. What are your thoughts? Your experiences? I'm just a bit scared. So,.. what about Rituximab?

Hi= what is Prezolon? never heard of that. It sounds like a synthetic fabric from the 50s.

Are you on a high dose? Sounds like it, that can make a lot of difference. Are your platelet counts coming up on that dosage? Its good to know what is a safe platelet count for you. For example: if they released you from the hospital at 32K then thats probably a safe count- 50K may be better. For your own information, its just good to know what is a tolerable dose and what is a safe platelet count.

Prednisone takes the place of cortisol, the stress hormone. Your body makes about 5mg cortisol naturally, so if you are taking 60mg.. you see the problem. The way I understand it- as your stress levels increase the body turns down the immune system so your energy can go to your muscles for fight or flight. Its a good system if you're facing down a saber toothed tiger!

I'm not really surprised you're having anxiety, prednisone is like stress in a bottle. I went to a job interview once on 60mg pred- it was ridiculous. I was sweating, shaking, tongue tied, couldn't think. the worst! lol Anyway.. it doesn't sound like steroids are a happy solution for you. They aren't good long term anyway.

I had Rituxin, it was 4 infusions once a week for 4 weeks. I had no side effects. During the first infusion I had a bit of an allergy reaction, itchy throat. They stopped the drip and gave me some benedryl. then started again more slowly. It didn't work real well on me, only brought my counts up a bit. Some people have long remissions- years.

There are pros and cons to every treatment. The worst part is that we have all had different experiences as far as what works and how the side effects affect us. I will give you a description of them as I see them:

Prednisone - I don't know anyone here who liked it. I've been on this Forum since 1998 and everyone hates it. How did we take it? Ha, most of us took it by venting here and looking a bit crazed to the people around us. We did it because we had to, or thought we had to. It's just one option; not the only choice. It's okay to try once or twice if you respond well, but due to long term side effects, should not be used over and over if there are other options. We all hung in there by knowing it would eventually end and stopped using it when it interfered with life too much.

Rituxan - most people get through it with little to no side effects. Most of the side effects, if they do occur, happen during the first treatment and are easily controlled by slowing the drip. Some people get a fever the night of the infusion, but are usually fine for work the next day. I slept through my treatments and considered them non-eventful. There are some other more serious side effects, but they are rare. I have never seen anyone here that died as a result. Many of us have had remission from Rituxan, ranging from 1 to 5+ years. The two worst possible side effects are reactivation of Hep B and PML (fatal). They are very rare and I have not seen anyone who had either of them on the PDSA. I've been tracking it since 2002.

N-Plate and Promacta - the newest treatments available. These have been really great for those who tend to be refractory to all else and those who could not tolerate other treatments. Patients tend to think that once they use either of these, they are stuck using them for life. Not true! People have gone into remission from these drugs and were eventually able to stop. So far, the side effects have been minimal or tolerable for most. The worst side effects seem to be blood clots and bone marrow fibrosis (which reverses when the drug is stopped). I have seen a few people here who have had blood clots, but they had risk factors (high counts, splenectomy, APS). The goal with these drugs is to maintain counts around 50k, higher counts can lead to risk of blood clot.

Splenectomy - it does have the highest rate of remission but the success rate falls over time and sometimes it doesn't work at all. I've never considered this a cure; I think of it as just another treatment that may or may not cause remission. It is actually starting to become an obsolete treatment with the top ITP specialists. Recent research is showing that in addition to the risk of infection, splenectomy also raises the risk of thrombosis (blood clots). If you choose this option and it fails, you may have to use immunosuppressants (steroids, Rituxan, Imuran, Dex, etc) which raise the risk of serious infection or, you may have to use the Thrombopoietins which raises the risk of blood clots. Thinking through the order of these treatments requires careful consideration.

Many times, the goal for ITP can and should be to maintain counts around 50k. Counts do not have to be normal. That can be hard to wrap your head around and accept, especially if you have an old fashioned doctor who thinks that way.

I noticed prednisolone smells and tastes like gum once it starts circulating in your body.

Is it a fruity gum like Juicy Fruit? Steroids can induce diabetes and diabetes can cause ketoacidosis which results in the production of ketones which have a fruity odor, sometimes compared to Juicy Fruit gum. Just a thought...

I don't feel totally crazy like I did on Medrol but yet again I see the mental boundaries slowly fading away

Hypomania is not unusual, but some people actually develop steroid-induced psychosis. This happens mostly early in treatment at higher doses. Sometimes it is treated with antipsychotics, at least until one's brain can adjust to the steroid dosage. I have not heard of steroid-induced psychosis on this website, but it happened to a family member, and it is in the literature.
If your symptoms are severe enough to worry you then you should let your doctor know. Medications can help.

Rob16 wrote:

I noticed prednisolone smells and tastes like gum once it starts circulating in your body.

Is it a fruity gum like Juicy Fruit? Steroids can induce diabetes and diabetes can cause ketoacidosis which results in the production of ketones which have a fruity odor, sometimes compared to Juicy Fruit gum. Just a thought...

Juicy? Lol no, I don't know. It smells like synthetic sweetness and it only lasts 4-5 seconds after the drug is injected into the blood stream. Maybe I can smell and taste it through my nose and tongue vessels or maybe it's something that works in the brain. Nurses told me it's normal to be able to smell it sometimes and it has happened infrequently to other people too. I don't know.. Anyway..

Thank you again for your responses. I will probably try to contact with the hospital again and see how the psychiatric department might help me.. I will definitely be taking the steroids for another couple weeks or so since I have already started them. If I can handle them with other medication then that's fine. I do believe I might be suffering from undiagnosed anxiety disorder and the docs originally gave me the splenectomy option seeing in how much stress I was and since this could all go easily go away and how much I would be able to avoid in the future. Truth is.. I want this away from me as much as possible. Thanks again for your time.

Edit: Btw Prezolon is a brand for Prednisolone. Just wanted to add that in too. I don't know the brand name for other countries but that's what it's called here. Also, good news. I just came back from a blood test and I can barely even tell where the needle went in. Fingers crossed, this is the tiniest needle wound I 've ever had.

2nd edit: I woke up this morning after getting 8 hours of sleep. I usually get about 5-6 hours most and I 'm feeling very good, nothing compared to how I was yesterday. Through all this confusion and fuzziness, I seem to forget how beneficial sleep can be. Something to write down as a note.

I think being in the best state of mind going through this is the best thing you can do. I applaud you for wanting to seek out help. Also being on here and voicing you concerns and learning all you can is great!

Results came back. It was a fraud. :dry: 40 thousand. Anyway, we ll see for the future because I suspect me being very ill and high on fever on Tuesday had something to do with it. To everyone out there taking the steroids my personal advice is this. Sleep. A lot. Some times I try to stay alert, I 'm on the edge and I feel like I need to keep total and absolute control when my brain feels totally jumbled up and fuzzy. When my ears buzz like a jet engine and my eyes feel as if they are not even in the right position in their sockets. It's the brain going out of balance because it can't remember it needs sleep being on the constant edge and anxiety. Slightly paranoid, most times greatly psychotic. Forget it all and crash on the bed. The body needs rest and REM sleep will put all your disjointed thoughts back together. 8+ continuous hours of sleep per day plus naps will make you feel as if you never took them. I just need to be patient with these devils and sometimes take a step back to check myself.

Best regards,
predniman

I always felt like a wire about to snap. I used to go into the bathroom at work periodically to cry and release the tension. It worked. I'd make myself take time out to breathe. I stuttered having conversations on the phone and my co-worker used to hold up signs to help me get through them. I would go home to three loud kids and a barking dog. Gave myself time out in my bedroom and would call them in one at a time. Couldn't handle them en masse. I was over-sensitive to noise. There are things to do to help you get through it depending on your situation. I dropped many balls during my Prednisone stints both at work and at home and shook constantly.

I tried to get through it with a sense of humor. Laughing at myself helped and I have many stories where I was out of control, but it was funny. Somehow, you get through it.

It doesn't seem funny now, but several of us have been on steroids at some point and the stories are pretty funny. I had this weird OCD cleaning obsession. I organized every crevice in my house and every speck of dirt drove me nuts. My boyfriend was convinced I was going to go to neighbors houses and ask to clean their houses. I was so hyper. I could not sit still. I would crash by 9 pm but would be up at 4. I just wanted to work out to get some of my energy out but I knew my counts were low and I thought I would just spontaneously

Hey! We're at the same age, so if you have any questions let me know. I was diagnosed at 17 back in '12, and it's been quite a roller-coaster ride. All I have to say is do your research and find out what's best for you. With ITP it's best to research and then decide with your doctor what would be the best plan

Hi

I am now 20, had ITP for 10 years and was told I was offically in remission 4 years ago - Yes it can happen - one day you might just gradually improve

In terms of prednisone -my Sydney, Australian blood disorder specialist told me in my final year or so with it that they have stopped prescribing and using it a lot with ITP (even with it's very quick platelet raising abilities) because the platelets usually come down just as quick and the effects are shocking. I was surprised by this and I think that's an important realisation for doctors.

I was hyper and a pain to be around- talking like a rocket, more aggressive, the wrong 'colour' very puffy, I gained a lot of weight very quickly and I craved everything particularly wheat and yeast. I slept badly, I was SO exhausted and yes it was a dodgy rollercoaster.

But anyway you've had it now and I hope you will see improvements but I think it is wise and was with further operations to still question the doctors choices because ultimately it is your body and ultimately they still know not so much about aspects of the illness. I am very glad for example I hesitated with the splenectomy because now I am well my quality of life would have been reduced and i would have had another hindrance to my full capacity of health if i had undertaken it. In saying this of course sometimes the decisions are necessary and work for many- also a lot of the time alternatives left are few and these doctors are clearly more intelligent than us.

All i am saying is listen to your body. diet and exercise i believe helped turn me around surprisingly and same with alternative practises. Stress relief and the blood well/immune restore herbs (which are used for ITP famously).

Best of luck !!
Make sure you keep a check on yourself mentally and emotionally- after always being so strong (stronger than my family) it finally hit me this year the reality of it, the fear that i suppressed and why i'd forgotten so much of my teenagehood. I guess listen to yourself. do yoga and stress reduction. it's really important for anyone- but for our bodies to recover since it's already under a stress. I learnt this when i got anxiety and i realised i had to go and talk to someone finally about a lot of things, one of which my old ITP

Great news. Platelets at 176 and constantly rising. Feeling like a rocket and I think I'm in a great mood. Things seem to be going even better than I expected including every single other value in the biochemical lab tests I was asked to do. Feeling somewhat psychotic since I haven't left the house for a while because I've been very tired and a bit scared and crazy ideas of constantly escaping are going through my head but I believe that's nothing a relaxing walk out won't be able to fix. For now my fears are all over and I'm feeling safe. I am unstuck once again and I feel a massive weight of my shoulders. Basically I feel again like I can do whatever the f*** I want :laugh: Docs are telling me I have great chances to recover and I can only hope, wait and enjoy myself for now as much as I can, since there is basically nothing I should be afraid of. Maybe only salts and too much sugar

Sounds like things are going very well! Where would you be escaping from?

I just feel like escaping after all this constant pressure these last few weeks from what has been happening. I want to do something, just something different. I feel like I want to chill back and relax and not think about it for a while since everything is looking great. I 've been driving myself crazy to be honest with my condition ever since everything happened. Just some time off these thoughts and the steroids too play their part making me feel like I want to move on with everything. I just don't want to be stuck running round in circles like I have been. That's just enough for now and I have released some of that tension.

just want to offer some support. Glad you are sharing your feelings here- its really hard for most people to understand how intense a high dose of prednisone is.

Is your doctor going to taper your dose? has it been lowered some already? I think you were on 75mg and your platelet count is 176K- is that correct? Thats a really high dose of pred and most doctors start to taper after a week or so.

I started on 80mg first week, then 60mg for two weeks. I could barely stand it- I recall feeling much better at 40mg. then better at 20mg. I've found over the years that I am fine with lower platelets so I try to keep the counts above 10K. I will never take that high a dose of prednisone again unless I'm at death's door.

Anyway, you feel like you want to run?? Remember what I wrote about prednisone being the drug equivalent of cortisol. Cortisol is the fight or flight chemical? so 5mg is normal relaxed going about your business amount that your body naturally produces. You are on a whopping 75mg! I'm not surprised you want to run! Like you are being chased by a bear or "fight" like tear up your room?!

Also, the body is designed to put out a higher amount of cortisol in short bursts- like if a bus is coming at you you'll get a burst of cortisol to get out of the way. Its not designed to be pumping cortisol 24 hours a day! yah, I think you would feel like running around in circles.

If you feel disconnected just remember its the drug- its not really you. Part of the problem also (in my opinion) is that you are young. 19 is the age of anxiety anyway- really! All the stress over how to get out in the world. Its intense without any drugs, then add 75mg of stress hormone and you are over the top. My son had so much anxiety at 19 he dropped out of college. And he wasn't even on steroids! Just the amount of pressure was enough to make him miserable.

Something that might help is to run around a track, or take a run somewhere. Or go swimming. those things will help get you back in your body. Sounds like you are all in your head. might help to do something physical.

anyway, great news that you are responding to prednisone! at least there is some pay off for your trouble. thanks for sharing your story and you have a great (not too crazy)weekend! :lol: