Is Rituxan Helping??

I had my last Rituxan infusion 3 weeks ago and my platelets are all over the place! After the first infusion they went from 20 to 165! Then around 20 again the next few weeks. Last week I thought it finally started working--225! This week--80. Anyone else have such inconsistent results?

My counts bounced around quite a bit at first after receiving Rituxin. Have had two rounds of Rituxin. This round is doing quite well. I hate to say that to much cause you know when you start talking about it to much the luck runs out.

Yes, I thinks its normal for them to bounce around... I remember when I had my first round of infusions mind did the same thing... they will eventually even out. I hope you have good results once the treatments are over. Hang in there.

My counts were up and down all during the 4 week treatment. Then it took about 6 weeks after the last treatment for the counts to stabilize. I had great counts, over 300,000 for more than 4 years. I was still on prednisone during some of the treatment time.

Mine took ten weeks after the last Rituxan treatment to get over 100,000. My highest count before I finally hit 100,000 was 63,000. My hematologist almost gave up hope. She did say next time I need treatment we might try something else.

Debbie

Three weeks ago I had a plt. ct of 11. The next wk it was at 39. The following wk 45. Iam on 40 of prednison. Well I did my first Rituxan on 8-10. I got my lab result 8/16 my new number is 125. It made it easier(last week had bad reaction during the infusion) to do the second treatment on 8/17 today. Luckily no bad reaction during infusion. On 8/23 I re-check my cbc and we are checking the renal panel. Then on 8/24 I get my third dose, it will be real interesting to see what the # will be. Maybe up maybe down. But for this week Iam going to try and enjoy this Three Digit Number, of which it has been so many yr I have to research to find out what yr I was last at a three digit. I plan on watching for 4 wks after first dose, then four weeks after final dose, then 9 wks after. If there is one thing I have learned over the years, it is a watch and wait rollercoaster. Thanks to everyone and all of the insight. Christina

H.Young,
Your numbers can move around a bit for a while after Rituxan. Here are my numbers the first time I had Rituxan. These numbers were before my treatment. (I had 6 infusions):
1st Rituxan: 2,000
2nd: 43,000
3rd: 92,000
4th: 187,000
5th: 101,000
6th: 86,000
2 weeks later: 162,000
another 2 weeks: 94,000
another 2 weeks: 192,000
followed by a 4.5 year remission.

Here are my recent numbers. I am doing Retuxan again:
1st (before treatment): 35,000
2nd: 78,000
3rd: 57,000
4th: 97,000
two weeks later: that's today we will see! Hoping for a 10 year remission this time!!
I have heard that a good number after the first week is a good indication that the Rituxan will work. Go Platelets!

Christina, Glad you did the Rituxan. Your numbers are looking good!

My counts were still in single digits until the day of the fourth treatment and I still had a good remission from Rituxan, so it can happen at any point.

my count went back up before the first dose of the treatment - 349 very good. But thankfully they continued with the treatment because it seems that on pred alone they drop back down when pred is tapered....

I am suspect that when the doc said that count yesterday was very good she was actually looking at last weeks results - as she didn't tell me the number and almost too soon for them to have come back from the lab. I know they are high enough from my own signs so all is well for now.

She has tapered my pred down from 60mg to 30mg and had my second rituximab yesterday. Does the antihistimine can cause one to feel run down next day? I just haven't got that zing I usually have. Almost feel like I do in December - those grey days. It happend last thursday after treatment and not quite as bad today but then I wasn't as drowsy last night as last week.

I lined up a dvd for me to watch last night. Little Red Flower. About a little boy in a biejing boarding school who couldn't dress himself etc and wouldn't conform as such. It was a bit confusing but then I do find that when they film movies in that darkend lighting I find them harder to watch. I like plenty of light. So if I know that am going to be that bit run down next saturday I can work to that.

Managed my bike ride though took me some persuation to go on it. I have an exercise bike at home and getting into habbit of 30minutes a day to help with my general weight loss plan and does help with pred weight gain for me

just feeling that at a loss at the moment so just hoping its the antihistime. I had a busy start to this summer in that done preparing to teach in the life long sector course. 2 weeks at nearby college and then mini essays which I have handed in last week just in case any further complications arise. This week has been quiet. Holiday in Scotland - Tattoo. Then got a few projects lined up to really begin work on. Am hoping to be able to do lots of research on Hubert Parry and become a guest speaker - well add my name to the public library list. Composer, Parry, is a relative but am having to start from beginning because all I know is the few hymn tunes that we sing in church. People are going to want to hear more than that I hope. So if you know anything about Parry or can sign post points of interest that you may feel others be interested in am open to suggestions. If you were listening to a talk what would you want to hear about?

So bit alarmed about the lung reaction after the 2nd treatment someone had written on here. I myelf have been diagnosed for 16 year and know as well as anyone what happens to one does not mean it will happen to another. And as I said on another post, the most dangerous thing we do every day is crossing the road even at designated places and yet we do it all the time because if we don't we wouldn't get anywhere. Okay we choose to cross the road to get us there. We take the treatment to get us there.

But there is one question for those who had any problems with rituximab? How do you notice if something is going wrong? It might seem daft to some, but how? When do you ignore the fact that the day is cooler so you feel cooler and when its a bit more serious?

Not always so easy to determine bearing in mind i didn't recognise something was happening for two weeks before meningitis. It was Dec but then I should have known the difference between cold and over cold.

Rhiannon,
I felt tired the next day after the Rituxan. I thought it was from both the antihistimine and the steroid that they gave me with the infusion. I felt better 2 days after. I think if something is really wrong you would notice, having a high fever 102 or severe headache, something like that. I think it is normal to feel a little off after the Rituxan if it is given with antihistimine and or steroid. Also, you are tapering off the steroid, going from 60 to 30 is pretty fast and that could be making you feel not so great.

Hi Dru

I never even thought about the steroid reduction being a part of the course. I am one of those lucky people that do not experienceside effects when on steroids and not really noticed any side effects when tapered the steroids any other times had ITP but this year been different all round

I am sorry you don't feel great either the day after rituximab but it is a relief to know it not in my head per se. It not fever etc, just generally run down. First week I put it down to the 'hype' around trying something new for me then blamed the antihistimine.

I don't mind the fast tapering as it gets me off the steroids. Last time in May he reduced them that slowly because every time I went back for a blood test the count had dropped again and it felt like some kind of delay game was being played. To me it was almost obvious that once he stopped the steroids the platelets would drop and not pick themselves up again..... The steroids worked when given with ivig. So hopefully they work when given with rituximab.

Thanks and I don't know my count numbers as they weren't back in time today and didn't ask about last weeks with reading on here that it all takes time anyway. I know when they are below 10 and that is the main number they act on it seems and whilst am being treated it - no tdon't matter but not as vital as in their care anyway.

Thank you for reassuring me because I do experience very mild S.A.D. in winter and it feels a bit like it even on the sunny day. I will know what it is tomorrow and got Comedy version of Last Night of The Proms season to watch on tv tomorrow night.

Thank you Dru

I had almost no change for a month after 4 treatments of Rituxan; it was up to 47,000 after two months. I'm happy if it stays above 40,000 for any period of time. Toni

and i got a blood blister today from 3pm as happend to look in the mirror and there it was developing. Very small but usual size.

should I be concerned per se or can I ignore it like I did through the year when tapering steroids. Am down to 5mg today and it the first blood blister of this round of steroids. Am not going to be concerned unless I get a really big one as I do for 5 or under some times. It can wait till the appointment on the 19th of this month as there be no sign of it by lunch time tomorrow if the usual pattern is at play. The rituximab kept the platelets higher through some of the tapering....
Oh well life is life and there is not a lot to be concerned about per se. And I know what may happen and what maynt happen. But I do like facts.

My count was up last friday to 217 before the last dose. All this year when got to 40mg of steroids a day blood blisters have shown. Never had that in the past. But is it a side effect of the pred or is it a genuine sign that platelets have not fully recoverd yet. Because every time I got off or very nearly off the steroids this year the platelets come slowly down. I have had about 7 weeks of steroid free in all the 9 months of this year.

At least I have minimal side effects though plays havoc in proving that I am trying to stick to slimming world diet. Though the cooler evenings got my appetite going a little last few weeks but getting over that....

My platelets have been in the low 20s and "normally average in the 60s to 70s since I was diagnosed with ITP in 2005. I have periodically been given Prednisone as a treatment option and am currently on Dexamethasone 5 pills once/week. As you all may know, the lovely side-effects of those drugs. It has been recommended, by my hematologist, who just retired, that I have Rituximab treatments and that that the risks are minimal as compared to not taking this treatment.

I have mixed feelings based on some of the discussions on this subject (from remission, toxis serum sickness, etc.)and am in a very anxious state as to what to do next?

Any suggestions and support would be greatly appreciated.

Thanks

I just finished rituximab and so far no side effects unless this minor cold is one. I seem to be lucky and experience very few side effects in anything I have taken. (Though I did get some shivers and anemia issues with IVIG)

On here there is lots of discussions about rituximab. 3 things to be aware off however are 1) Don't get pregnant in the next year. 2) Risk to infection. and 3) very low risk of an incurable brain disease PML don't know its full name. Something like 0.3% people have died and they were known to have compromised immunities eg (AIDS)

Nursing staff will monitor you through out each treatment taking your blood pressure and temp every 15 minutes. I have slightly low blood pressue and dropped low once but only so far as the nurse reported to another. Temp was 37 one week before they even started it. They watched it. Nothing else. Finale week I had tingly tongue at the end. I didn't report it because I didn't quite realise. It went away over the weekend. You will be given an antihistimine and paracetamol before the treatment. Saline, which is a salt based water to flush the veins etc before and after the treatment about 15 minutes worth.

Pretty boring in reality - or it was for me. Take an interesting book to read. The first week took 5 hours because they do it slow in case the body reacts to it. The subseqent three weeks it took around 90 minutes. If you body reacts to it they either slow the treatment down or stop it until the reaction has gone. They then reassess the situation depending on the reaction.

There are a lot of threads on this treatment. Did it work for me? Hard to say as platelets were already up before they started as been on steroids a week. I have my out patients appointment tomorrow afternoon.

I was diagnosed in 1994 and had spleen removed after six weeks in hospital of trying everything. Nothing worked and the splenectomy raised the count to normal levels. Since then I have had periodic drops and prednisolone and IVIG been the usual treatment. This year has been a bit weird for some reason.... Pred worked until May. Then every time got to the end nearly of pred my platlets would drop. IVIG started to work. I think my previous consultant would have given a longer course of IVIG than 5 days. But I had a 30 minute macro teach to do and didn't want to miss it. So they let me go only for my platelets to crash down to 5 week later. But I got my teach done without having to do it this next academic year. I am nearly at the end of pred this time but having had the rituximab at the same time as the pred am hoping. I only had that one blood blister and few bruises so they may well stay up this time for some time to come.

So I will say, yes it is helping.

AnnG:

It basically comes down to benefit vs risk. If counts are in a safe range (above 30), it may not be worth the risk of the possible side effects.

Serum sickness is awful, but you can recover from it fairly quickly. It takes a week or so. It's basically a delayed allergic reaction. It doesn't occur until 14 to 21 days after the first infusion. If you get it, you know. You pretty much get hit quickly and are unable to move due to swollen joints. Other symptoms are fever, hives, headache, malaise, etc. (not everyone gets all of those).

PML is generally fatal, but is also very rare. The risk goes up the more immunosuppressed a person is.

Most people do just fine and have decent remissions.