Feeling Hopeless...

I was diagnosed with ITP after having a bleeding episode while on my period...when i went in my platelets were at 12k and they admitted me for two days and put me on high doses of prednisone. After i was sent home, i have been doing weekly platelet counts and prednisone. They then gave me 4 treatmens of rituxan which they were confident would stabilize my levels and they would be able to get me off of the prednisone which has given me seriously bad side effects. When they didn't see much progress from the rituxan and my platelets dropped down to 14k my doctor cut me off cold turkey from the 30mg prednisone and put me on another steroid that i take for 4 days one week, wait a week and then start them again for 4 days in hope that this would help jump start the rituxan. They also ordered i do a bone marrow biopsy to rule out any cancer or immaturity in my bone marrow, which all came back negative, my bone marrow was fine. Then My platelets shot up to 90k (the highest they'd been since my hospital stay) after starting this new steroid and i was overjoyed with the results and hoped that this was going to be the cure and the splenectomy we were now discussing wouldn't have to be an option any longer. Then i went in on Monday for labs and my platelets are at 4k...and the splenectomy is for sure happening and they are also going to do IVIG. I have missed so much work (i work in a spa and don't receive benefits or health insurance) and i don't currently have health insurance because even though I'm below the poverty line i do not qualify for Medical Assistance or Minnesota Care...and the insurance i do qualify is way expensive and i can not reapply for that until September...I'am back to feeling very hopeless, depressed and alone...my family & friends are there for me and try to help so much but i just feel sad...no one can relate to my situation and i've found it hard for people to understand that my sickness is very real and serious because i don't outright look or act sick. I just don't know what to do, i feel like my mental health has taken a complete turn for the worst and these steroids are not helping yet i need them to keep my platelets from crashing...i don't know what i'm even looking for with this post...

I am glad that you found this website. You will find a lot of supportive people and good information.

Three things were not clear to me from your timeline: how long has it been since your Rituxan, how long were you on the 30 mg of prednisone before it was stopped cold turkey, and how many two week cycles of the four day steroid (dexamethasone) were you able to complete.

Often it seems that doctors are too eager to give up on one treatment before going on to the next. Rituxan can take up to 12 weeks to kick in, sometimes longer.

If you were on 30 mg prednisone any significant amount of time, stopping it cold turkey instead of slowly weaning you off could have the effect of causing your platelets to drop between dexamethasone treatments. Your body becomes highly dependant on steroids, as your own adrenal glands stop working and atrophy, and it takes time for them to restart.

Many doctors do not do splenectomy at all, but at most it should only be a last resort, generally not before a full year of trying other treatments, as sometimes ITP will resolve itself, or you might respond to a less extreme treatment. There are no guarantees with splenectomy, and it does weaken your immune system. Also, there are constantly new treatments in the "pipeline". One of our contributors is currently participating in a study for a new treatment for ITP.

You have not mentioned trying the drugs that stimulate platelet production, drugs called TPOs. There are two versions: Nplate is a weekly shot, and Promacta is a daily pill. They are very expensive, but others have gotten help from the drug companies based on financial need.

You are not alone in feeling the way you do, and yes, the steroids contribute greatly to these feelings, and the withdrawal can be even worse. I don't mean withdrawal in the sense of an addictive drug, but stopping steroids can give rise to a different set of emotions than taking the steroids caused in the first place.

I hope you will keep checking in. I am sure others will have things to add.

Hello there,
Welcome to our site where you will find information, support & encouragement.

Rob, once again your response was excellent & very helpful, even for those of us who have been around a while!

Take heart - there are some ITPers who live with very low counts, have tried everything & get on with life. Don't be rushed into decisions about treatments, as there are many, & most have side effects.
Hang in there,
mj

(As a side, my husband & I visited friends in Minnesota 2 years ago & liked it very much)

fordchels88:

You mentioned a lack of insurance. There is a treatment that is often effective but mostly overlooked. Dapsone is at least partly effective around 55% of the time. It is an inexpensive antibiotic that has anti-inflammatory properties. I just posted about it on a different page:

pdsa.org/forum-sp-534/7-treatment-general/28423-dapsone.html#49299

It's unfortunate that you don't have insurance since everyone in the US is supposed to be able to afford it now. I didn't realize that people were still affected that way. It could limit your treatment choices.

First, know that you do not have to make any quick decisions. It's better to take your time and find out all options before jumping into splenectomy. It is not a cure, just another treatment that may or may not work.

There are ways around missing work time. I figured out ways to manage it and we could discuss it if you'd like.

Some of the more expensive treatments (Promacta and N-Plate) may have programs that aid uninsured patients, so don't rule those treatments out just yet.

Hi- there are more options as Sandi said--

I used to get Promacta for free from GlaxoSmithCline the drug manufacturer. The program is called Promacta Cares- you might want to check it out. They even Fed Ex'd it to my house for free, just had to call for refills. My doctor's staff had to sign up for it and help me to get qualified- a bit of paperwork, not much. The program is for people who do not have insurance. Once I got on ObamaCare insurance my copay for Promacta went up to $400.+ per month- so ironically it then became unaffordable.

How did you pay for Rituxin without insurance? That is an expensive drug so maybe you were on a program. I got it free but had to pay for the infusions, labs etc. It brought my platelets up to around 20K for 6mos. Not a great response but I was able to get off prednisone for a while. Cost was about $3000.+

I went to Promacta after Rituxin and it brought my counts right up to 50K which is a safe number for that drug. I started on 50mg then after a while my counts went higher and was able to lower the dose to 25mg.

yes steroids will mess with your mind and emotions! I hated to dexa pulses, I felt terrible, couldn't sleep, was just a mess and then depressed in the days after. My counts shot up just to crash the next week. Don't give up, keep researching! ps- I still have my spleen, had to say no to several doctors. good luck

Hi fordchels88..
I'm a UK nurse who was diagnosed a year ago. I found this link very helpful in understanding ITP as it is way off my speciality.
www.ebmt.org/Contents/Resources/Library/Resourcesfornurses/Documents/ITP%20Handbook.PDF .
I've done the high doses of steroids and immunosuppressants none of which sustained a platelet level above 25 now I am on a trial for a new drug which if I am correct is free of charge in the US. It definitely is in the UK.
www.youtube.com/watch?v=ov2JUHDpt58#t=35

Whatever the outcome of the trial I will not part with my spleen..I have learnt to live with low platelets...the body adjusts over time and it becomes much easier to cope.

Thank you everyone for your kind responses and words of encouragement. Rob to answer your questions my rituxan treatment was about 10 weeks ago and now i'am on my second treatment of the 4 day steroid which actually ends today. i was on prednisone for 3.5 months before i was cut off cold turkey for this new steroid and let me tell you the withdrawals were intense and i could not believe that he just took me off without any warning of how severe they can be (sick in bed for 2 days, couldn't care for my children or myself and was told not to come into the ER because i was not vomiting/diarrhea and there wasn't much they could do). My whole health insurance situation is so complicated the several financial counselors i have worked with still do not understand why or how i don't qualify for state care or a discounted insurance. I was able to get the rituxan through freedrug which is a company my hematologist works with. I will definitely bring up those methods to my doctor and see what he can tell me about them and how accessible it will be for me, because i honestly can not afford much more on my plate financially or emotionally. I'm due to be married in two weeks and this just couldn't have all happened at a worse time. I greatly appreciate all of your kind words and appreciate the support and look forward to continuing to post and keep in contact with you all. Thank you all very much.