Starting Rituxan..

[LannaBarnett]

I start Rituxamab January 7th. We couldn't get me off of the steroids before my count would drop again. How did it affect you? I'm scared to death!! Any advice on how to handle it well? How did it affect your counts?

[Robert1959]

Lanna

Of course each of us can be different but from my experience Rituximab was a non event. I never felt sick or had any side effects fron it but unfortunately it had no positive effect on my count. In fact on the day of my fourth dose my count was 0.

I hope that it goes well for you.

[LannaBarnett in reply to Robert1959]

I think that is my biggest fear. It won't work. What do you take to keep your counts up?

[Robert1959 in reply to LannaBarnett]

Lanna

When I had my Rituximab treatment it was in combination with Cyclosporine and Dexamethasone. When this failed and I had previously taken Prednisone, Dapsone, IVIG and Tranexamic Acid without success I was left with only 2 options being a splenectomy or the latest drug NPlate (also called Romiplostim).

Thankfully I reacted to NPlate and after 5 months on it I went into a full remission where I have been now for 13 months and do not need take any medication at all yet maintain a count over 200. Needless to say I am a huge fan of NPlate and they are getting some very positive results with many people going into remission especially if they are placed on it within 6 months of diagnosis. It is very expensive and so it is only offered as a second line treatment however hopefully this will change in the future and be offered before IVIG and Rituximab which are also expensive and often not successful.

Robert

[LannaBarnett in reply to Robert1959]

Your remission is great to hear! I'll her there one day. I've been diagnosed since October of 2014. Just started Prednisone in August. Only treatment I've had sofar. We thought at first it was just gestation tThrombocytopenia at first. Then once I gave birth it turned chronic.

[Robert1959 in reply to LannaBarnett]

Lanna

With regards your question about the transfusions and what they were like I would not get too concerned about the procedure. The 4 transfusions are done a week apart for 4 weeks. I had the first 2 while I was in hospital and the last 2 as an outpatient. Mine took about 4-5 hours each time and I even ate my dinner while hooked up when they were done in hospital - that is how much of a non-event it was. Make sure that you take something to read or some music to listen to as you basically just sit up in bed or in a comfortable chair for that time. While you are in the treatment room which is full of chairs, you will see a lot of other people who are very sick and that can be a very sobering experience.

Robert

[tgk62]

I finished my 4th infusion on 10/22. I had a slight reaction during the first one. They stopped it, gave me more Benadryl, Tylenol, Steroids, & something for my BP (I have high BP). After waiting an hour or so, they restarted, & I had no further problems. It did take over 8 hours. The next 3 were about 6 hours. I had some numbness in my right lower leg that lasted a couple of days after each treatment. Treatments tired me out the rest of the day. I now have joint pain, especially in my hips. Also a bit of nausea a few days after treatments, but it was manageable. Only had to take the prescribed meds for nausea 1 time. Fatigue is a big thing for me also, but I had that before treatments, so who's to say if it was treatments. My counts from the beginning of treatments until now, 39, 100, 33, 42, 39, 43, 41. I've read others have no effect from treatments. As was said, it affects everyone differently. Good luck with yours!

[Anna77M in reply to tgk62]

I just did my second of the four. I also notice I have hip joint pain. Do they consider yours to have worked or no?

[LannaBarnett in reply to Anna77M]

I haven't started yet. I start January 7th. So the joint pain is all you have? Have your platelets gone up any?

[tgk62 in reply to LannaBarnett]

Joint pain, fatigue. , occasional lightheadedness. Slight numbness in one foot. I am 53 years old. Count is 41. Not as high as hematologist wants but better than. 8.

[LannaBarnett in reply to tgk62]

I'm only 20. So because of my age my hematologist said my body is still young. He thinks because of my age I should be able to handle treatments well.

[tgk62 in reply to Anna77M]

MY hema doesn't think it is working, but I'm waiting to see. I m above, 30, so I'm not doing more treatments unless iit gets in the single digits again . my hematologist wants me to do Promacta. But I'm waiting... Going the wait and see route. I not much of a bleeder so far.

[Bean195]

So far I have been in remission after the Rituxan / Dexamethasone pulse treatment I completed in early September. It was 4 weeks of the infusion with the Dexamethasone given for 4 days at the first and third infusion. I go for a count this coming Wednesday but the last check was 201 up from 19 before I started the treatment. The Dexamethasone is the worst part of it (I found). I don't know if that's the same therapy you'll be doing but the only side effect from the Rutuxan was an initial allergic reaction during the first infusion. Just take note of exactly how you're feeling before the infusion starts and if you have any strange aches let the nurse know immediately. My reaction started with pain in my upper back followed by an intense urge to sneeze, wheezing, dry throat. The treatment will be stopped, you'll just receive a saline drip for a bit and then they'll go again and typically it all goes smoothly from there. You may not even have a reaction.

So far my experience has been good. I hope the same goes for you. Best of luck and please keep us posted.

Hoping the New Year brings good health to us all!

[LannaBarnett in reply to Bean195]

I'm glad yours went well! How does it feel to be in remission, and not live in fear of bleeding?

[LannaBarnett]

So it worked for 2/3.. The odds seem scary. So they give you steroids with rituxan? I can't wait to be off of this prednisone. I'm currently down to 20mg now. So I'm guessing exhaustion is a big one with treatment huh? How often do they normally do it and how many treatments normally happen?

[Anna77M in reply to LannaBarnett]

I don't get steroids with mine. I only did when I had a reaction and it's a different kind of steroid. Rituxin is usually given once a week for 4 weeks. I also notice I have a bit of joint pain in my hips. And before all this I was in pretty good shape. Worked out 5 days a week.

[lc12345]

Rituxan put me in remission for now - nearly 2 years! Nothing to be scared of. It will be likely administered with anti-histamines. Thing to know though that effect doesn't come quickly - I think my platelets rose in 2-3 weeks.

[LannaBarnett in reply to lc12345]

From what I understood I thought your platelets would rise very quickly.

[lc12345 in reply to LannaBarnett]

No, there is a range of weeks, I think up to 6 weeks the effect may kick in

[LannaBarnett in reply to lc12345]

How many times do you go through the infusion before its considered a failure?

[lc12345 in reply to LannaBarnett]

You need to complete one full course and see what happens. I think I had 4 infusions weekly.

[Anna77M in reply to LannaBarnett]

IVIG is what will raise your platelets quick. But it is short lived. Only given when your platelets drop to an unsafe level. I usually get it about every 7-10 days.

[tgk62 in reply to LannaBarnett]

I have read it can take up to 3 months to work.

[Hidden]

Is my drug of choice. I have had it for times in 10 years with a min of 3 years remission in between my last treatment being October last year. I have my treatment through a pic line or a portacath as my veins could not handle the continual pump. I would get headaches and need panadol and antihistamine every 4 hours ( have to have a slow infusions). Felt like i had the flu for about a week after I finished each time. Long term rituxin has induced neutropenia and I have also developed anothe auto immune disease linked to t cells. I would still choose to take it again becasue no other treatment worked for me

[JasonJ]

I had no problems with the actual infusion, platelets went up very slightly then crashed after 3 weeks. It's pretty much the same as having an IVIG with regards to time and procedure. You will need to pee, that fluid has to go somewhere so don't be embarrassed to say you need the bathroom whilst still connected to the pump.

Good luck

[LannaBarnett in reply to JasonJ]

So you do IVIG regularly? Or is it just on occasion? What happened when the rituxan didn't work for you? My hematologist said a splenectomy would be next..

[JasonJ in reply to LannaBarnett]

Hi, I have had IVIG twice just to get my count up to a safer level while we try something else. Right now I am on Revolade and steroids combined, it works but I can't take the steroids forever so a splenectomy is next on the cards for me. However I won't be doing it until summer next year. I live in hope that my ITP fixes itself by then. My other choice is combine some other drug with Revolade.

[LannaBarnett in reply to JasonJ]

I hope the best for you!!

[tgk62 in reply to LannaBarnett]

There's other drugs to try before splenectomy. That is permanent.if a splenectomy don't work, thn you are without it to help fight off ooff infections and have ITP. The success rate is around 60%. It works for some tho, but personally I would try all medicine options before as a splenectomy.

[Anna77M]

I just finished my second of four rounds on Wednesday. My first I had a reaction and they stopped it and gave me medication and then after 30 min restarted it. My second I had no reaction. I'm just really tired after and the following day and retain a bit of water. I know what you mean about being scared to death because I was too! I still am when I go in. Good luck to you!!

[LannaBarnett in reply to Anna77M]

How would you explain the infusions? Tiring, uncomfortable, scary? Sorry so many question have come to my head, because I'm absolutely terrified! So they do four close together? What's after that? Wait and see..

[Anna77M in reply to LannaBarnett]

Not sure if you have had any other infusions before (like IVIG) but it's just like that. First one took awhile and they will watch you and make sure you don't have any reaction. I slept for a lot of it because of the Benadryl I think, (also the medicine makes you tired). You will get them once a week for four weeks. I get mine every Wednesday. I will get my third this Wednesday. My platelets have not gone up yet. I just had another IVIG infusion about 9 days ago which took them up from 16,000 to 70,000. But on Friday they dropped back down to 40,000. So I get my blood drawn again tomorrow (Monday) which I'm sure they have dropped some more. Ask as many questions as you like. 😊

[Hidden]

Its worth noting it can take up to 12 weeks for Rituxin to have an effect on your count. If after this point you have had no real result the likelyhood is that they wont give it to you again. A lot of heamo teams give dexamethasone with the rituxin dose to help it along.Some hospitals will not fund it until other treatments have been unsuccesful. If it doesnt work ask for an indium scan to see if in fact your spleen is destroying your platelets before you go into for a splenectomy.

[LannaBarnett in reply to Hidden]

I can just ask my hematologist to scan my spleen?

[bloggerkhushi in reply to Hidden]

Indium scan... Wow! Some new info for me. I asked my doc..if there is way to find that my spleen is destroying my platelets.. I can't remove my spleen on base of assumption ...lolz. Thanks for sharing... My second infusion is due coming sat. Last one went well without much allergic reactions. Just trying to stay positive that rituxuamb works!!

[Hidden]

Depends on where you live Lanna. I would be asking for all tests possible done before going to surgery. An Indium scan is not always available. Do speak them about it though

[SoporRose]

I had a round of Rituxan infusions back in 2013 and my platelets have been fairly steady just above and below 200k since then. My numbers rose very quickly — in fact they got pretty high — after the first infusion. They dropped to more usual numbers after a few weeks; after about six months I had a small dip that my doctor thought might indicate incipient relapse, but since then, they seem to have settled, at least for now. The first infusion did knock me off my feet for a day or so; the others made me tired (about 39% of patients experience serious fatigue with Rituxan), but didn't utterly drain me the same way. Robert1959 is right about how seeing others who are more ill being a sobering experience. I often felt like an interloper in the presence of those whose conditions were far graver than mine.

The downside for me is that I have never been able to shake the weariness that the Rituxan brought and about six months ago was diagnosed with Chronic Fatigue Syndrome. For weeks I was told that my fatigue couldn't be related to the medication. My haematologist finally checked and found out the statistic I cited above. But I tend to react strongly to medications in idiosyncratic ways.

Don't be afraid of the infusions. They are time consuming, and it's good advice to bring food and entertainment (I also found a hot-water bottle helpful). I got caught up on a lot of e-mails while getting my infusions.

Good lick, and don't stop asking questions!

Ruth

[Pandaxxpanda]

Lanna, my daughter is 20 and was diagnosed with ITP just before she gave birth last September . Steroids are now being tailed off as they have not raised her count and she too is due to start Rituxamab infusion in January. We are in the UK and she was pushed into having a Splenectomy but we refused and wanted to try other things first as this seemed a bit drastic at this stage, hence she will be starting Rituxamab. We too are wary of what to expect, but I have learned alot from this page and will show her. I hope this treatment works as she gets so tired.

[LannaBarnett]

Update guys. It went great. Come July it'll be six months. My platelets two days ago were 73. Going from 4 to 73 has been phenomenal. Thank you everyone who kept me encouraged. This can be a scary road. So I cut my foot open pretty bad the other day and ended up with stitches. Even with my plaplatelets being 73 it on occasion bleeds. Is that normal?