Rituximab Drug as second line intervention

Hi,

Brief intro as I just came across this site and this is my first post discussing my recently diagnosed ITP.

Personal history, I'm 33 years old, 6'7'' and 20 stone in weight.

It all started 3 years ago when I was admitted to hospital with a platelet count of 13k, I was diagnosed with ITP and put on a course of Prednisone. Due to my weight / height it was a massive dose (130 mg / daily)

3 weeks of that and my count had increased to around 70 to 80k. I was tapered off the Prednisone and has been well for the past 3 years, with my count staying between 70 and 90k.

Unfortunatly Dec 2nd this year I woke up to the rash and red blood pockets in the mouth. I knew I was low so went to hospital. Count was < 5k. I was admitted and started again on the Prednisone, again 130 mg / daily.

After 5 days I hadn't responded. Count remained < 5k.

As a second line they started IVIG (kiovig) a few days later this had artificially raised me to over 20k platelets and I was released from hospital advised to continue the Prednisone at 130 mg daily. A week later count was at 117k and I was feeling great.

Then just before Christmas I was feeling crap, they tested again and my count was down to 13k (some roller coaster ride.) They gave me a second round of IVIG over two days to 'get me through Christmas'

However this IVIG appears to be only a temporary fix.

They have suggested that I now start on a course of Rituximab (see www.macmillan.org.uk/Cancerinformation/Cancertreatment/Treatmenttypes/Biologicaltherapies/Monoclonalantibodies/Rituximab.aspx )

I would love to hear from anyone that has used this drug, good or bad, the only other alternative they are offering is the splenectomy so I'm kind of thinking any drug is preferable before that....

Lastly, and rather insignificantly, I am now on the taper off period down from 130mg Prednisone (reducing 20mg every 2 days) but have noticed that my torso, neck and scalp is covered in spots. Not the ITP rash type spots but proper teenage acne type white spots - anyone else experienced this whilst on Prednisone? Any idea how to get rid of them as they are rather annoying lol

thanks for the attention and sorry for the wall of text but I always find those in similar positions know a lot more than any of the doctors. You cant beat personal experience

Richard

Edit - I've just noticed that people here refer to Rituximab as Rituxan. My apologies I am not from the US and a little research may have answered my question first lol

I am now reading the forums re everyone's experiences with Rituxan

However I would still appericate any comments thou re my circumstances and especially the acne (steroid acne maybe? or a reaction to the IVIG?...)

thanks

Richard

Hi Richard,
Yes, some people get acne from prednisone.

You'll find many Rituxan stories here. I'm a success story, with many years of remission from Rituxan. Others have had no reaction to Rituxan and a few had bad reactions.

There are a few other treatments to consider as well - for example, nPlate and Promacta. Learn all you can, it won't take long until you know more than your doctors.
Erica

Richard:

Glad you found us. We've all been here for a long time (me - 15 years) and together, we have a lot of experience.

Many of us have tried Rituxan. Some have had success, some have not. Most will probably agree it was worth the shot. I had Rituxan first in 2002. My counts were under 10k the whole month but on the fourth week, counts went to 150k. I had 13 months before I had to treat again, so in 2003 I had one Rituxan infusion. Counts have been mostly above 150k since.

I did have a rare reaction - serum sickness. It is a delayed hypersensitivity reaction that occurs around the third week after the first treatment. It can be miserable, but goes away in a few days. Most reactions, if they do occur, will happen during the treatment and are controlled by medications and slowing the infusion rate.

You're right about IVIG - it is pretty temporary and if you're going to have an infusion that takes all day, it might as well be something that will last longer such as Rituxan. It has more risks, but is easier for most people than Prednisone is.

Well my husband was first diagnosed with ITP Feb 2009 out of the blue. All of a sudden we had this new adventure. We tried everything and nothing worked. Then they tried Rituxin and after 4 treatments he went from 3,500 platelets to over 200,000 and stayed in remission for 4 1/2 years. Then 11/13/2013 We noticed a few spots on his feet and within two hours he was 6,000 platlets. Again we a tried platlet transfusion and 14 Roghan shots. And his body ate thru all in a matter of hours. He was at his lowest ever 2,000 platelets. So again we had the 4 treatments of Rituxin MB and his numbers as of last Tuesday 170,000. We have found great success with the drug but like I said nothing else has worked. Our New fears will it come back and the doctor wants to remove his spleen and we just arent quite sure about that. We just want to understand why tis ITP is happening? Well I hope that helps.

Worriedwife:

It's difficult to give you an answer as to why ITP has occurred. For most, it is an autoimmune disorder that a person is genetically predisposed to, and something in life comes along to trigger it. There are many autoimmune disorders (over 100); why do any of them happen to anyone?

It sounds like your husband responds quite well to Rituxan. That is a very good thing. As long as ITP can be controlled, there is little risk of dying from it. There also may be a few options he has not tried, such as N-Plate, Promacta, CellCept, Imuran and Decadron in case future treatment is needed.

You could sometimes make a pretty educated guess about why a platelet drop happens. For example I'm in remission after Rituxan, more than 4 years, and recently I had pneumonia and had to take antibiotics. Either the illness or the medication caused my platelets to drop to 40k. Then a few days later, they were back up over 200k. Did your husband have an illness, or take a medication, that might have caused a drop?
Erica

Thanks for all the good news stories, and kudos to the site admin and members for putting together so much information in one place.

I have the first of four rituximab sessions on Jan 8th. They are keeping me in overnight for observations as it is the first lot, but after that they say I can do 3 x day visits.

Finally tapered down from the 130 mg prednisone to just 10mg for the next 3 days then I'm off it completely. Hopefully the acne will settle then and I will stop waking up with a headache every morning.

One thing that isn't clear from the information on the site, and I guess its different for everyone, but how does ITP affect peoples ability to work?

I am currently on sick leave as there was no way I could work whilst on 130 mg of prednisone. But now that I am coming off the prednisone I would be considering whether to return to work depending on the Rituximab side effects (if there's any) and my base count being above 10k.

Is there any guidance on when a count becomes too low to work? i.e for those in general office work your fine with a base above 10k etc etc

thanks again for all the information

Richard

Richard:

The ability to work is different for everyone. Some people that have physical jobs take time off if counts are low. I kept working and yes, Prednisone did affect my job performance. I worked with numbers and had a fast paced job; being ramped up on steroids didn't make that easy. I didn't have a choice though, I didn't have any paid time off and there was no one to cover my job duties. I also worked the day after the Rituxan treatments; I felt fine (except for when I had serum sickness).

I didn't miss much time at all due to ITP - still worked with low counts (under 5k). My doctor told me to keep on with normal life so I did. Many people continue to work with low counts unless the job is physically demanding. I wasn't worried about a paper cut which was probably the worst injury I ever got. I always scheduled doctor appointments at the end of the day and got CBC's during my lunch hour, so it didn't interfere with work much at all.

Rereading what you've written it seems that you've done an incredibly fast taper from 130mg to nothing in a month! That is amazing. Most do a three month taper from 60mg. No wonder you can't work. The acne will go, as will any other side effects. Good luck and hope the rituximab works out.

Yeah, that is a fast taper! It might have been good to just get it over with though instead of dragging it out, although results are sometimes better with a slower taper. Good luck with Rutuxan...I hope it works for you.

Richard,

I had over 4 years in remission after rituxan in 2007. After a relapse I had another round in 2011 and had 18 months in remission.

I was able to work almost all the time except for the days I had to take off for the rituxan treatments. I work as an occupational therapist in a school and for some reason my lowest counts have usually been school vacations or Summer. When my counts are low and I do have to work I do try to be careful.

I hope you have good success with rituxan.

The lowest count I have worked with was between 2-5. I was a personal support worker working part time. Now I am a registered practical nurse working full time.

Working part time with low platelets not a big deal. Working full time with low platelets wowzer! Exhausted covered in bruises. I am noticing I have to treat at higher numbers instead of waiting till I am under 5 sometimes I have to treat at under 15.


Had Rituxan the original 4 weekly treatments and a remission of all symptoms for about 6-7 years. Hoping to try and get it again and have a long remission!

Rituxan gave me a 5 year remission with counts between 50,000 - 80,000. I just finished another round of rituxan and my last 2 counts were 45,000 and 47,000. I'm hoping for another 5 years of being treatment free!

The only other treatments I've received were Prednisone and IVIG. I had trouble concentrating at work on the Prednisone. I carried a notebook with me and wrote everything done to try to keep my head straight.

I hope the Rituxan works for you!

I think I got away with the fast taper as I was only on the predisone for 3 weeks.

The doc dropped me every 3 days, from 130mg to 100mg, to 80mg, to 60, to 40, to 20 to 10.

Today is the first day with none so we will see how it goes.

Still woke up at 4.30am with a stinking headache and cramp in the knees and lower leg, but that's just path of the course now lol

Hopefully it will all settle down over the next few days now the drugs have stopped.

Just in time for Jan 8th and the first Rituximab dosage.

I'll keep the thread updated with my experiences, might help some others who are just starting this journey like me.

thanks for all the advice and good news stories.

Richard

Well its Day 3 of no prednisone and I've been awake all night shivering and shaking, then into high fever combined with the worse headache I have ever had (and I suffer from migraines regularly)

The wife was so concerned she was going to call for an ambulance but I put her off.

I managed to drink a small bit of water and take 2 sophadol (500mg paracetamol and 30 mg codeine) before crashing out under the duvet, 2 blankets, whilst fully clothed.

2 hours later and there is no shivering and headache is manageable. Temperature is still at 37.4 C but at least I feel a little better.

I guessing I just hit the 'withdrawal' phase, hopefully it doesn't last too long.

Has anyone any tips for getting through this phase? or how long it lasts, I really couldn't go through that shaking, fever and headache again.

thanks

Richard

Hi Richard,

Prednisone withdrawal is awful, I have been through it several times and am going through it now after 9 months on it.

But, I'm not sure that fever is related to withdrawal-it might be that you are immune compromised from being on the high dose for the past month. You could have an infection that needs to be treated, you should probably get it checked out by your dr just to be on the safe side. But if it is caused by prednisone, you might need a slower taper. My dr puts me on 1 mg prednisone for the last couple weeks of a taper, and that helps me.

I agree with Dru, my first thought was sounds like you have the flu. But everyone is different so perhaps it is the way your body expresses tapering too fast. My tip is pay attention to what your body is saying, not the doctor. If you feel bad, take a bit of prednisone and taper more slowly.

I'm on a taper too, but much slower because I was on prednisone for over a year. I've done it before after a couple years on pred and in my experience you don't have to suffer. But you do need to take it slow. how slow? just as much time as your adrenals need to take over and balance things back out. There really isn't a formula, just have to watch symptoms.

Tapering from 10mg to 0 is the critical part in my experience. I feel terrible fatigue if I taper too fast. depression, weak muscles, dragging, walking dead. I am now under 5mg and tapering about 1mg every 2 weeks. Not really paying attention to the time though, just how I feel. If I feel very weak and tired I'll take a pinch more pred then try to go down the next day. Hope you feel better soon!

I agree with the others....fever and chills is not part of the Prednisone taper. It sounds like a virus or something. If it doesn't get any better, call your GP.

Thanks for the advice everyone, as it was I was fine the next morning and since then no repeats. Been med free for a good few days now.

I am now in hospital having the first dose of rituximab (very slow, going to take 4 hours for the whole dose) They tested me when i cam in and my platelets were 164k, but I guess that is down to the IVIG I received just before Christmas.

I'll keep this updated as it progresses.

Richard

Four hours is pretty quick for the first Rituxan dose. I hope it goes well for you.

It is odd that you would still get the drug with counts that high.

Hi,

It actually took nearer 6 hours in the end, as hey pre loaded me with piriton and some other acid before giving me the rituixmab.

Luckily no ill reaction, next dose is next Wednesday.

So far all going well

They gave you what? The usual pre-meds are Tylenol, Benedryl and Solumedrol.

Six hours is about average. That's how long my first infusion took. The next three may go a bit faster.

Different country, different protocols. I doubt rcarter15 has even heard of Tylenol, maybe Paracetamol instead.

Piriton is an antihistamine.

Ha, never occurred to me that he wasn't from the US. Thanks, Ann. I was wondering what the heck that was!

Hi,

Yes I'm from outside the US, so here Tylenol is paracetamol (of which they gave me 2 x 500mg) and the piriton is the same as the benedryl.

They also gave me something else that ended in acid, it was a small syringe that pushed in just before the the piriton, apparently it was to help reduce the side affects.

I have my second dose on Wednesday and will remember to ask then what it was.

So far I feel no difference, I was really expecting to feel sick or something following the Rituximab but I feel fine. Heading back to work today for the first time since November, fingers crossed.

Richard

Good for you! Things are looking up. Most people do fine with Rituxan, I'm glad it went well for you!

2nd session of Rituximab completed yesterday, platelets were at 206k.

Never been that high in my life, still not sure whether it is the IVIG I had around December 19th artificially inflating them or whether I am on the mend.

Guess we will know in a few weeks.

Platelets to date:

23rd Nov - 5k admitted to hospital
25th Nov - 2k, Started Predisione 130 mg daily
27th Nov - 3k
30th Nov - 5k, started on IVIG over 3 days
6th Dec - 19k released from hospital
11th Dec - 43k
18th Dec - 11k 2nd round of IVIG
8th Jan - 146k Started Rituximab
15th Jan - 206k 2nd session of Rituximab

Massive jump seen over Christmas and the last week, which maybe due to the IVIG, that should be wearing off by now or even gone. From what I read it only last 3 to 4 weeks which is about now.

Next weeks results will be the biggie I think so fingers crossed.

That is great news! GO PLATELETS!!!

when I did Rituxin in 2010 I got only a small response of around 25K. But it did last for 6mos and I was able to taper off prednisone, so I was okay with that.

Rcarter - For most, IVIG only lasts days or a week or two, so if you are still having high counts from it, that's great! Whatever it is, you seem to be doing very well.