Brand New!

Found out last month that I have ITP! I was at a 2 and have been taking prednisone (which is terrible: extreme mood swings, no sleep, acne, weight gain) at 60 mg for four weeks and I am only at a 7 now. This Friday I received Rituxan for the first time. If these four treatments of Rituxan don't bring it up, my doctor wants to do a bone marrow extraction and possibly remove the spleen. I am not for this at all! I have been reading up about this and it seems that these drastic measures rarely help. Am I wrong? I am thinking about ditching my doctors for a couple months and trying out my own thing (the gluten-free, macrobiotic diet possibly) What are some of your experiences?

Hi Chelsey. The board is full of experiences....read away!

I wouldn't abandon your doctor right now, you're too new to this. But you could incorporate your diet changes along with the treatments.

It's kind of soon to think about splenectomy since some patients do remit within a year. You still have plenty of time to see if Rituxan will work. It can take 4 to 12 weeks after the first infusion. I hope your doctor has at least begun to taper you off of Prednisone. It doesn't look like it's working.

Keep reading and learning. It will help you to make informed decisions along the way.

I was diagnosed one month ago. Had bone marrow and ct. All normal. Platelets were at 7. Started 100mg of solu medrol intravenous for last 7 days. Up to 200 but feel like crap. Emotional wreck, no appetite, no sleep and just lousy. Have had two shots of nplate so far. Doctor is talking about spleen removal. If the odds were better i would totally opt for removal. Remission even for a few years and having no more other treatments would be welcome. I keep thinking i will wake up and have my life back but i know thats not going to happen

Emily:

You will have your life back. Many patients go into remission and even if they don't, they go on with life. ITP turns things upside down for a while, but it won't always be that way and you can have a normal life. It takes some time and patience to get to a balance, but you will.

Steroids are the worst, but you won't be on them forever.

Sandi
Thank you for the support. The daily blood draws and injections are horrible and as you know the process makes it hard to also work. From what i am reading it looks like it takes 6 months to a year to figure out something that might work. Just devastating to go from working out every day and working full time to this. I know i need to be more optimistic about the future but I'm not there yet. Lots of tears of grief and fear right now. Fingers crossed that i am in the 88 percent positive side with nplate. Time will tell.
Emily

Emily:

I understand. I was working full time too with 3 active kids when I was diagnosed. It's only crazy at first. In time, you won't have so many blood draws. Daily counts can sometimes be overkill and not necessary. I scheduled appointments at the end of the day so I didn't miss much work and got blood draws during my lunch hour. There are ways to manage it which you will find in time. Most people are devastated at the beginning, but you learn that ITP is not the end of the world and there are illnesses that are much worse.

N-Plate works for many people, but it can take some time. There are many people who stabilize sooner than a few months, and you could be one of them since you are going for a treatment with a great success rate (better than most). People also go into remission from N-Plate, so there is a lot of hope for that.

There are people who live their lives with low counts and they do fine. ITP is rarely fatal, especially if you are being monitored and treated.

Emily, in addition to what Sandi said, let me emphasize that daily blood draws are almost certainly excessive. If your are consistently around 13k, I suggest that you ask your doctor for the least frequent blood draws he/she would be comfortable with, and ask for additional PRN (as needed) blood draws if you get any change in your symptoms. Even going to every other day would make a big difference in your life. Often if you tell your doctor you are comfortable with backing off little, you will find that they are happy to oblige.

My wife, Ellen, has a rule of thumb, now that she knows how she reacts to low platelets, and that she rescues quickly with high dose dexamethasone (HDD). Over 40k, every 4 weeks. Over 30k, every three weeks. Over 20k, every two weeks. In the teens, every week. Low teens or two consecutive counts in the teens, treat with HDD. And as needed with any unusual bruising, bleeding gums, etc. NEVER more than once per week, but then she has never been lower than 11k.

Life gets back to normal for almost everyone, even if "normal" changes a little.

Yup....I echo what both Sandi and Rob said.
It gets better. But it does take some time to find what works for you, to be patient and let it work, to adjust to having this rather annoying weird disorder, and to feel safe with it.

There are many of us who live fairly mundane lives with 'low' counts. Mine is normally 9k to 15k or so.
When I was diagnosed in 2002, I worked full-time as an engineer, had a side business, and my band played biker bars on weekends. I still do......and I'm OLD (and crotchety).

Normal is whatever your normal becomes.
Although some people (I won't mention names Rob) claim I am not normal. That's still open for discussion.

Hang in there. It really does get easier.

.

Patience may seem hard to come by - I think we'd all agree with that. And I would bet that a lot of folks on this board who have been dealing with this for a long time would say that as soon as you move from being freaked out to accepting what's happening, that's usually when the patience starts.

Once I got a better sense of what was going on with my condition (by reading and learning...a lot), I started telling myself (and those around me), "This is the new normal".

I wish there was a magic switch that you could flip at a pre-determined time for everyone to make this happen. Sadly, there are too many other factors - both external and internal - that make this impossible. Everyone's situation is different. But everyone goes through the same stages - for a lot of knowledgeable people in this forum, they're on far end looking back and, while it may be hard to believe, they know what they're talking about: things will get better, you will be come patient and you will overcome this - not without some trials and tribulations, of course - but everyone manages to get through...mostly by finding their own way.

Thanks for all the encouraging words! One thing I was wondering about is the spontaneous bleeding... since I am below ten consistently, is this something I need to worry about? Has anyone had a problem with bleeding internally and not known about it? These things and the prednisone keep me up at night?

It's always a concern, but it is very rare. If you have few symptoms at that count (bleeding nose, gums, blood blisters), you should be okay.

If someone has internal bleeding, they usually know it. They will have blood in urine or stool, or will have a horrible, quick onset headache.

When I first found out in July 2014 my levels was a 2K also. I was started on steroids at 70mg and given 4 bottles of IVIG after 4 nights in the hospital I can home with a level of 60K. Been getting my labs drawn every week/two weeks since went as high as 279. This past January I recently started to drop again once I hit 36,000 my doctor started me on Rituximab tomorrow morning is my last treatment. Treatment two I was 227K Treatment three I was 215K still great.


I am so happy to meet others that are going through the same thing. I have a great support team but they don't understand sometimes.

Update and some questions! Last week at rituxan treatment number three, my count was a 2. The doctor came over and told me that she doesn't think the rituxan is working and that I would be getting IVig the next week and finish the rituxan.(also coming off prednisone, will be off in three more days so happy about that) She also told me a spleenectonomy is the next step and she wants to do it pretty soon. I still don't want to get into that just yet. I feel like these other treatments could still kick in. What should I say to my doctor to get her to agree? P.s. even at a two, I don't have severe side effects. I don't even notice. I was surprised it was low because I only had two bruises and my gums haven't been bleeding. What would you all do in this situation? Thanks for all your help!

In the uk we have indium scans to determine if platelet destruction is actually in the spleen. I don't know if they are available in USA.

Chelsea:

It is much too soon to say that Rituxan isn't working. It can take 4 to 12 weeks after the first infusion.

IVIG is just a temporary band-aid. It usually only works for a week or two. There doesn't seem to be a sense of urgency or she would have had you do IVIG already.


I don't agree that splenectomy is the next step, especially if you do not want it. It never has to be the next step. You still have the options of N-Plate or Promacta if Rituxan doesn't work.

If you can't get your doctor to agree with what you want, you should get another opinion.

Chelsea,
You can also try Winrho which seems to work for some. That will be my next plan if the Rituxan doesn't work.

mrsb04 wrote: In the uk we have indium scans to determine if platelet destruction is actually in the spleen. I don't know if they are available in USA.

mrsb04 an indium scan doesn't necessarily "work" - if destruction is in the spleen and spleen removed there are other blood cleaning locations in the body to take over. Someone in my town went to London, had the scan done, was told destruction is in the spleen, came home, had spleen removed, counts good for a while and then back down real low. I know a lot of people put a lot of stock in this scan, I'm on the fence about it.

Melinda....an indium scan shows the site of destruction therefore enabling informed choice...I.e. if there is also hepatic destruction a splenectomy wouldn't be much use. I've had one which shows localised splenic destruction but am only going to have a splenectomy as a last resort. To remove a perfectly healthy organ for doing it's job seems very drastic to me. Not to mention the fact that there is no guarantee it will work

chelsey313 wrote: She also told me a spleenectonomy is the next step and she wants to do it pretty soon. I still don't want to get into that just yet. I feel like these other treatments could still kick in. What should I say to my doctor to get her to agree?

You don't need her to agree. She needs you to agree. Your profile says you are an adult, so if you don't want to follow her recommended treatment the choice is yours. If she objects strongly, she could "fire" you as a patient, but if you are tactful about it that is rarely a problem. If you don't like her treatment plan and she is insensitive to your wishes, then you probably need to find someone else anyway.

You are less than 4 weeks into Rituxan treatment. It is too early to expect results, and way too early to give up on it.

If a splenectomy should ever be done, it should not be done until after a year, as spontaneous remissions are not rare in the first year.

mrsb04 - what is your count? The person I know is from the UK but lives here - her count if I remember right was 3k-5k and symptoms.

Far too soon to be considering a splenectomy

I'm also on the fence about the Indium. The problem also is that many people also have problems with platelet production. If that is the case, a splenectomy would not work no matter what the Indium says.

I think it's a good tool, but I would not rely on it too much. I can understand why they don't use it here in the US. If I lived in the UK though and had easy access to it, I would consider having it done.

Great news to share! The ivig or maybe the rituxan have brought me up to 228! Highest I've ever had! Thanks for the encouraging words. I think I will tell my doctor next week that I want to hold off in the splenectomy.

Yay!!!
All the best to you and have a great weekend.

Chelsey:

Rituxan worked like that for me....third infusion - 3k, fourth infusion - 150k. It could also be the IVIG though. You'll know which one it is by what your counts do in the next week or two.