Don't know where else to start!

I was diagnosed with ITP in April of 2015, but recent events have made me decide to join this community in the hopes of easing my nerves by conversing with those who are familiar with ITP.

As previously mentioned, I was diagnosed in April of 2015. I decided to go into the clinic after seeing red spots all over my feet and some large bruises appearing for no reason. The Nurse Practitioner had a CBC ordered and sent me on my way. He called later with great concern in his voice. He told me to go to the local cancer center and prescribed me some steroids. I was quite alarmed when I heard the word "cancer".

I then went to my appointment 2 days later and was immediately diagnosed with ITP. I was thankful that cancer had been ruled out. I then had another CBC and an ultrasound test. My spleen was not enlarged. I then received a call later that day requesting that I receive a platelet transfusion. I was told that this was only done in emergencies. My count was less than 2000. I was then prescribed 60 mg of Prednisone. I had weekly blood draws and the occasional IVIG. My platelets continued to go up and my dosage down. I had one relapse in September where my count was 60000 (not too bad). This is noteworthy in that had my count been above 100,000 like it had been previously, I would have been taken off steroids) I then turned 26 and moved for a job (I have my MSW and am a mental health professional providing therapy in a high school. A pretty sweet gig, but I wish I could make more. Oh well, my loans are being entirely paid for.).

Turning 26 meant that I would no longer be on my parents' insurance. My doctor at the cancer center (He actually has a Wikipedia page and has been ridiculed for using fraudulent data. Naturally, I was alarmed by this, but it was his poor research skills that had been scrutinized, not his ability as an actual doctor. I figured I'd give him a chance.) kept me on my current dose (2.5 mg every other day) and gave me an IVIG before moving. I called him on the 30th of November and he ordered me to go up to 20 mg and see a doctor the next day. I did that and my count was 23,000. I am now to take 20 mg for 7 days, have a CBC done tomorrow and the results will determine what happens next. Either way, I will be on this route for a month before my new doctor will try rituxan (sp?). Luckily, I have had no bruising or bleeding. In fact, I was cut about a week ago and it healed just fine.

I am feeling extremely down right now. Things were looking so positive. Maybe it's just another relapse? I was optimistic before, but now I feel entirely pessimistic in that I will be forced to do this for the rest of my life. I came here to talk to other people with ITP in the hopes that, well, my 'hope' will increase. If the rituxan is not successful, my doctor said that a splenectomy followed by chemotherapy would be the next 2 courses of action.

Here's to hoping my count will rise!

Thanks,

Shawn

Welcome, Shawn. I understand your frustration dealing with the ups and downs of ITP. At first it can be scary, but the chances of dying from it are quite slim, and in time it usually becomes just a nuisance.

A couple of comments on your care so far:

Platelet transfusions should only be used as a last resort to stop life-threatening bleeding. The transfused platelets are destroyed very quickly by your overactive immune system, and can actually cause your immune system to be further sensitized, so that future platelet transfusions, if really necessary, will work an even shorter time.

Your treatment with prednisone seems reasonable, and the very slow tapering is excellent practice, not usually observed. Generally it is better to treat based on symptoms rather than counts. You should (gradually) work yourself down to the lowest dose that keeps your symptoms at a tolerable level. Remember, the treatments can be riskier that the ITP itself.

Rituxan is a logical next step. There is a low-dose option that seems to work as well as the standard dose. My wife has ITP and was treated with Rituxan in August of 2014. She did not achieve sustained counts over 100, but she remains at a safe count - currently 50 - and that is all that matters.

If Rituxan does not work for you there are other options that should be used before trying splenectomy. In fact, the best doctors do not use splenectomy at all, at least if the spleen is healthy. Two drugs in a class called TPO-RAs (thrombopoieten receptor agonists) can boost your platelet production: Promacta and Nplate. They work in most people, are well tolerated, and sometimes result in a remission. After that, there is a long list of drugs to try, and there are some amazing research that could result in new and better therapies down the road. Hang on to that spleen as long as you can!

I hope you have good insurance at the school where you work. These treatments can be very expensive! If money is an issue, the low-dose Rituxan can save a bundle.

Good luck, and keep coming back!

Hi Shawn - Do you have medical insurance - be sure it will ok Rituxan before you get it.

Be sure you read and learn all you can about ITP and its treatments, pdsa.org/treatments.html - knowledge is power. You and your hematologist should work together on what is best for you.

Keep us posted.

That is a lot of great information. I am quite grateful. I will make sure I ask my doctor about some of these treatments. I would rather not have my spleen removed if I can avoid it.

My insurance is okay. I have a high deductible, but my parents have agreed to help out if needed. The prednisone really helped, even without the IVIG. I'm glad you mentioned that the symptoms are more important than the count. I haven't had any bruising since the beginning. I have never bled from the gums or nose. In fact, the only symptoms I have right now is a small amount of peteciae on my feet. I have never had them in my mouth or anywhere else. In fact, there were months without any symptoms. A small amount of petechiae went away about 2 weeks ago. It was just the last few days where they were little more noticeable. They appear mostly on my feet and slightly up the leg around the ankle and lower calf. This has helped me stay positive. This could also explain why my doctor probably wanted to try the one month.

I will say this, I am pretty damn sick of steroids though. I originally had gained about 25 lbs (158-185ish). I am now down to about 175, so I have lost some weight. My "moon face" is essentially gone as well. I still get the bloating, however. My doctor seemed pretty confident that the next month should work out and if not, she seemed even more confident about the rituxan.

Thanks for all your help. I have had some trouble sleeping lately. I know a lot about mental health and will also go that route if necessary.

Shawn

Shawn,
Welcome. I was diagnosed in January, 2015. The steriods are horrible. They made me feel depressed, tired and unable to sleep. The longer you are on them, the longer it takes to get off of them. I tried Rituxan, but it did not work for me. I'm not sure why Rituxan is the next treatment. I think (and Rob will correct me if I am wrong) it works in about 60% of the people, whereas the NPlate and Promacta work in closer to 80%. The Promacta has worked great for me. My counts went up 5 days after starting treatment. I started at 50mg a day and now take it 6 days a week at a dose of 12.5mg. Definately do your research and talk to your doctor about the options and the reasons to try one treatment first over another. Keep us posted. It is a stressful and unpleasant journey!
Emily

Shawn prednisone will do a number on your sleep - and believe me, all of us who have had high doses of prednisone know exactly how you feel about the wonder drug and were damn sick of it too

I had to get a new hematologist when mine died suddenly towards the end of 2014 - just saw her the other day. She does not want my count to increase drastically as that is not safe. We both seem to be on the same page and that is what you want - a hematologist who listens & works with you.

I've had ITP since 1989 - moved overseas a couple months after diagnosis and on 60mg of prednisone. My original hematologist told me she never had a patient go into remission with IVIg. You'll do fine and you will get this figured out.

Your parents sound wonderful!

Shawn, Find out if your deductible is based on a calendar year. If so, you may want to wait until the new year to begin expensive treatments. Otherwise you might have to meet your deductible for 2015, an d start over again for 2016. If you have a maximum out-of-pocket for each year, the same thing applies.

Emily is right that NPlate and Promacta (the TPO RAs) are more likely to be effective than Rituxan, but often insurance will not approve them until later, as they are considered less cost-effective than Rituxan. The low-dose protocol for Rituxan is substantially more cost-effective than the standard dose, as roughly 1/7th the dose of medication is typically used. The TPO-RAs are worth a try, though, if your hematologist will go to bat with the insurance company.

It is based on a calendar year. Fortunately, the plan is to only use the steroids until the next month. Therefore, I wouldn't be doing any expensive treatments until the New Year. They've been paying for everything up until now anyway, so they have no problem helping out. They are very close to retirement and have vented some frustrations, but they know that I'm just starting out and that my fiancée is still finishing up her degree. I'm very thankful for them.

I may even look around for better health care because the high deductible plan scares me. Luckily, my company does pay half of it.

Hello. Everyone is correct with what they said. it concerns me that your doctor spoke about splenectomy and chemo....no no no! There are other, better ways to go. Rituxan can be a next step, but it can cost between $40,000 and $80,000. It's quite expensive for a treatment that does not always work and if it does, it can take 4 to 12 weeks before you see a response.

The goal with ITP is to maintain safe counts (over 30k - 50k). As long as you do that, you do not have to worry. As the others said too, look at the symptoms, not the counts.

It takes time for everyone to find the right treatment. For some, it can take a good year and for others, it happens much sooner. We've all been there with the steroids and the ups and downs. It does get easier. Once you get used to it, it just becomes a pain in the butt. Many, many people go into remission and do not deal with ITP for their entire life. N-Plate and Promacta have induced remissions, so that is another plus to those meds.

Thanks for the advice! I love this site. This forum has helped a lot with the recent slip up. I was far too unrealistic before I guess.

I will discuss other possible treatment methods with my doctor. I may even call up my old doctor just to get a second opinion. Should I ask about N-Plate and Promacta before even considering rituxan?

Just so everyone knows, my count rose to 34k in two days. My current doctor has decided to put me back on 60 mg of steroids rather than continue the 20 mg regiment. She claims that my count didn't go up fast enough. I guess it could be worse.

Just don't let them stick you on Prednisone for an undetermined length of time. It's too hard on a person both physically and emotionally. I allowed that to happen to me years ago and was a mess. You have the power to say 'enough'.

You have to do what you feel is right and the best thing for you.

Hello IronRoto,

In my opinion I would not up the prednisone dose if my counts were at 34K - many of us don't treat at all with count's above 30K and no symptoms. (unless they have to be up for some other reason, medical treatment, dental treatment). I would question the reason for needing higher counts.

Again, just my opinion (I have had more than my share of steriods and don't plan on going there again unless absolutly no other choice!)

CindyAnn

I was pretty hesitant too. I did what I was told to do though. If my count is up on Monday, I'm going to see what can be done about tapering. Really, I've had no symptoms, but some petechiae.

In the last month, my platelet count has shot up to 115k. I am currently on 30 mg of prednisone after being on 60 just 2 weeks ago. I'll find out a count next week. They have not been this high since probably before my diagnosis. Therefore, I am fairly hopeful.

What I'd like some advice on is the fact that it costs about $200 just to see my doctor and have her tell me to decrease/increase my dosage. Initially, some other treatment options were being considered if the prednisone did not help again. Clearly, it's helping, but I don't want to be on them forever. Unless I show symptoms/low counts, I'm thinking about refusing these doctor conversations because of the cost. Especially, since I've been getting my blood drawn and then given directions in regards to what I should do with my dosage via nurses over the phone.

Any thoughts? I mean, I'd go in if I felt it necessary, but I just don't see the point when things are fine and they don't give me anything I don't already know.

My doctor handled most of my treatment decisions over the phone. I'd get a count every so often and either the doctor or a nurse would call me with instructions. I didn't see the need to keep missing work and going in there so I was glad he did it that way. No real reason you couldn't either at this point.

I agree with Sandi. Fortunately in the UK we don't pay for consultations. I'm having fortnightly bloods and will only be phoned if my count is below 50. Maybe try tapering the steroids very gradually and see what happens

Tell your doctor the problem with the cost of your office visits. Some doctors are willing to work with their patients (or at least they should!). $200 is a lot to pay just for them to say you can decrease your prednisone. And, Sandy, it sure seems like Rituxan has shot up in price! I would never have thought it would be that much. I was just reading about the price goauging on that one medication.

Yes, it was expensive. When I had it in 2003, it was $10,000 per infusion. I'm sure it's gone up by now and I'm sure the cost varies from place to place. The doctors office charged extra for their services too.

Hiiii!!

I'll try to make this shortish and just get to some stuff that might help!
I've had ITP for 12 years, mostly did the transfusions at the hospital thing, IVIG was the first one but it was too much for my body and ended up always throwing up because of it. I did try steroids but they ended up dropping my platelets so we got rid of those one quickly. I finally found something that worked for me, its called Anti-D, it's a blood product that I would get through a transfusion. I would needed it when my platelets got super low (usually under 10,000) other then that I didn't bother with anything else, I figured unless they are dangerously low then we weren't going to worry too much about it.

At some point i also knew that my platelets would get better, so sometimes when they did drop low because i got a fever or a cold I just told them i'll stay home for a few days and wait for them to go back up instead of getting a transfusion. I eventually just lived my life normally, checking them frequently to make sure I was okay. Now they just hit over 100,000 on their own!!!

I don't really like the idea of medication because it's only temporary, and i know that my body can heal itself. How? I believe you need to understand yourself a little better, you need to take care of your body, mind and soul.
For your body, know what feels right and wrong for it.
For your mind, find a positive attitude and stick to it and watch it change your every life.
For you soul, make sure you're doing things you love, especially your job.
I was in a job that I hated and I always would think i would rather be sick then go in there and so thats what I would manifest.

Start living a life you absolutely love, and watch it change your ITP.

Hi Platelet Princess!!

I do like your story. It seems you've got your platelet problem under control. I'm sort of like you in that I've done some medications and do go in remission. In the meantime, I try to take care of myself.

The hardest part is getting me in remission and I need to have patience during that time.

Good luck to you in the future!

Dee Dee

I think i've learned to let it take its course. I don't like to put expectations on it because if they drop then I become disappointed. I just live my life in a healthy-ish lifestyle and watch them go up, if you're happy then how you think it positive which makes your body happy which makes your platelets happy.
I think everything is connected in a way!

Check with your doctor as to having his nurse just call with a dosage change. Some doctors will have a form or something to sign that gives them permission to call and leave a message with your current level and drug changes.

If a new prescription is needed I can not see why the doctors office could not fax your pharmacy.


My advice:

Become your own advocate. Be willing to speak up be willing to disagree with your doctors. Most of all make sure all your decisions are informed ones. Research your options look into side effects long and short term. Remember you know your body trust it and trust your gut.


PS: I'm about to hit 20 years with ITP and it does get easier. I've also seen many people come and go because after months to a year they no longer have issues. Here's hoping your one of them!

I don't mean to be a downer, but hearing that platelets might go up because of exercise and a good attitude is a lovely thought but may also lead to viewers feeling that they are failing themselves because we need treatment. I am very active. I take yoga classes at least once a week, but sometimes twice a week, I run, do bootcamp and weight training. I have always been active. I ran a 15k the month before I was diagnosed. I agree that good nutrition, good sleep and good exercise is good for us, but some of us also might need medical intervention. We are not failures because we have not been able to heal ourselves. Good luck to each of us on this difficult journey wherever that path takes us.

Well said Emily

I think because she has been at it for many years, she has found her way of coping with ITP. It does take a while to learn to cope. Also, what I've learned and heard from others, exercise is good for you--but don't overdue it. The first time I had my ITP episode, I was running 3 miles 6 days a week; it was just too much for my body.

I've also talked to a young marathon runner at the last conference I attended, and his platelets sometimes fall from too many marathons (even though he loves his running).

We need exercise--but don't overdue it. These are just my thoughts. I still work out, but for now I don't run anymore as my body was aching too much. I do a fast walk, the sky machine, the bike, and very light weights at the gym.

EmilyK - I never said anyone was a failure because they can't get their platelets up. It took me 11 years to get here and it's a process but it was in the experience of it all that helped me become a better person. We all have bad days and get upset, we need those days because it helps us appreciate the good ones.
When i say you should have a good attitude i mean overall you should know that everything can work out for the best, the bigger picture shows that you can get there. You may not know when but it can happen.
No one is a failure for not figuring out how to maintain something like this because this helps shapes us to become who we are and because of that i think we are all winners.