Splenectomy or Rituximab inj as 2nd line treatment

Hi,

My mother is diagnosed with ITP about 3 yrs back and was on steroids as 1st line treatment with platelets counts in the range of 30k to 60k. Due to prolonged use of steroids and their seen side-effects, docs advised to shift her on Revalode last month. She responded well on Revolade initially (for approx. 15 ~ 20 days) but her platelets counts later came down to approx 8 ~ 10k.

Now doctors are advising us to go ahead with Rituximab injections once a week for 4 weeks course. I've heard lots of side effects of this injection due to which i am afraid to go ahead with this. Another popular option is Splenectomy.

Her spleen is normal in size, shape as per recent ultrasound reports.

Please advise suitable treatment and probable side effects of both the above options.

Regards,

Mohit

Hi Mohit. I don't think her doctors gave Revolade enough time. Did they try to raise the dose for a while after her counts dropped? It can take some time to get stable on the drug. I'd see if they can continue this for a while and see what happens. Hoe are her symptoms when counts drop? How old is your Mom?

Splenectomy is not as popular as you'd think and is being used less as a treatment as time goes on because better options, like Revolade are available now. Splenectomies are not always successful and often fail days, months or years after the surgery. Some of the top ITP specialists do not even recommend them any more.

As for Rituxan, there are a lot of possible side effects but most people do well with the infusions and do not have any side effects. The average remission time with Rituxan is about 12 months if a person responds.

I have seen many people go down the treatment line only to end up on Revolade which ends up being the drug of choice. She could also try N-Plate which is similar, but it is a weekly shot instead of a daily pill.

Hi Sandi, thanks for your guidance.

At present, doctor has raised Revolade dose to 100 MG & 50 MG in alternate days (started this pattern from last 6 days) but still latest platelet count dropped to 15k from yesterday's 20k.

With count in range 5k ~ 10k, we've seen minor bleeding spots. Her age is approx. 57 yrs.

Please advise what would be the best solution as per present situation.

can we try something from below:

1) addition of 5~10 mg prednisolone with current dosage of Revolade.
2) Infusing lower dosage of Rituximab i.e. <375mg to limit risk of side-effects.
3) Increasing dosage of Revolade to 100 mg.
4) Any other option if as per your experience.

---- Mohit

I'd think about sticking with the current plan for a while longer and see what happens. If symptoms are not serious, she should be able to handle the lower counts. Vitamin C can sometimes help with bruising.

If this doesn't work to get her counts stable above 30k in the next few weeks, you could mention Rituxan to the doctor or possibly N-Plate.

Thanks Sandi... I am having a meeting with Doc tomorrow to discuss on best available option if platelets counts further reduces from current count of 15k. In my last meeting with doc (when counts were 22k), he has advised to go with Rituximab and most probabily, same shall be discussed tomorrow also.

Please let me know that probable side-effects of Rituximab for which i can discuss counter-measures with doc if we decide to go with it. otherwise i'll stress on staying on Revolade for some more weeks as advised by you and evident from various posts in this forum.

---- Mohit

I'm not a doctor. I'm just a person who has observed ITP experiences for more than 17 years. I cannot advise, I can only suggest and the decisions are yours.

Most people do well with Rituxan. Most reactions, if they do occur, will happen during the first infusion. Some people have a fast heart rate and high blood pressure and some have trouble breathing. Patients are monitored closely so if a reaction occurs, the treatment is slowed and medications can be given. Benedryl is usually given as a pre-med to help alleviate reactions. Once things are under control, the drips are resumed. Some people feel feverish the night of the infusion, but most are fine for work the following day.

A few people,including me, have had serum sickness. This is a reaction that occurs 14 to 21 days after the first infusion. If it happens, you will know it. The symptoms are severe and hit quickly. They are: extreme joint pain, fever, hives, headache, redness around the infusion site, and lethargy. It can last about a week before it clears up. If a person gets serum sickness, they should NOT have further Rituxan, ever. Many doctors misdiagnose serum sickness or insist on giving it anyway after diagnosis. In that case, patients need to advocate for themselves.

My mom was given 1st dose of Rituximab today and out of my surprise, she did not felt any (even minor) symptom during the infusion... her BP, pulse / breathing rate was consistently normal... only Sugar level found on higher side which was managed by insulin... don't know if it is good or bad!!!.

As she was already admitted in hospital therefore docs infused today's dose very slowly. If counts improve tomorrow, she may be discharged...

Fingers crossed for favorable result...

Now expecting her rising platelets counts in coming days...

---- Mohit

Mohit,
Glad to hear the first Rituxan went smoothly. Not to be a downer, but it can take several weeks from the infusions before there is any change in platelet counts. I didn't want you to have an expectation of immediate results.
Emily

You are correct Emily... we may not get immediate results as today (next day of Ritiximab 1st dose) counts lowered to 6k from 10k.

She is still with daily Revolade 75mg but counts are not increasing. Hope that things gets better in coming weeks... as per doctor, we may opt for platelets transfusion as an immediate solution.

Mohit

Platelet transfusions are not a solution and only last a few hours, if that. They should only be used if the patient is bleeding.

Hi... day before Yesterday platelets further dropped to 4k (after 2 days of Rituxm)... docs insisted for platelets transfusion to avoid any unforeseen internal bleeding... done transfusion yesterday and not today (1 day after transfusion & 3 days after Rituxan 1st dose) counts climbed to just 6k & 10k in morning & evening respectively.

Now infusing Solu-medrol solution and lets see for tomorrow's result.

She is still admitted in hospital and we are planning to get her out of hospital as admission in hospital is not working and giving us same results as was at home.

Lets see counts tomorrow morning to take a call... praying to see kick off results of Rituxam in coming days...


--- Mohit

Mohit - it can take 4 to 12 weeks after the first infusion to see results. Some people respond a bit sooner and some do not respond at all. Hopefully she will get a break soon - keep us updated!

Got her out of hospital thru "discharge on request" on 04-Sept when counts were 10k. Next day i.e. 05-Sept, counts rose up up 80k and today i.e. 06-Sept dropped to 34k.

2nd dose of Rituximab is due on 08-Sept. Hopefully counts stay above 30k mark.

next count due tomorrow and shall keep this forum updated.

That's a step in the right direction! Yes, please keep us updated!

Hi... 3rd dose of Rituximab infused on 15th Sept when counts were 25k.

Seems Riximab has still not started working and on the other hand it seems that Revolade 50 mg daily dose is also not working on its peak either.

Docs told that Revolade is not suiting well since it is being given from last 2+ months and it is sufficient time for Revolade to give results and counts should have been in range of 50 ~ 80k as min.

Docs further recommended to decrease Revolade dose to alternate days instead of daily and discontinue it if Rituximab starts giving results.

Final Rituximab dose is scheduled on 22th Sept.

During this course of Rituximab, my mother is experiencing some intermediate bone pain, mild fever, overall weakness, high glucose level, etc but hope that it is temporary symptoms and everything comes to normal...

We are also considering Ayurveda (Indian traditional medicine) treatment in parallel for her.... shall describe it in details in coming posts....

Expecting some positive results from Rituximab till then....


--- Mohit

Best wishes to your mom. I just had my 2nd rituxan treatement. My count was prompt up by IVIG and steriods until the rituxan kicks in. My hemotologist said it could be as long as December before we know if it works.

I have the same flu like symptoms, my blood pressure is high and totally bloated. If I can get off the steriods 100% all will be more then worth it.

Sending prayers to you all..she is lucky she has you

Hi,

We have completed the 4th dose of Rituximab on 22nd Sept (1st dose was given on 28th Aug) and till date no improvement in platelets counts is there. Hopes are falling with each passing week. Doctor suggested next treatment with Dapsone (when Revolade didn't worked). Scared of high side effects of Dapsone. Also what would be next step if Dapsone too fail to perform??? Please suggest whether to wait for Rituximab to work or to proceed to next treatment with Dapsone.

Last count was 10k.

It can take a few weeks to know if Rituximab has worked. Give it time

It depends what you've already tried as to what comes next. The list of things to try isn't in any suggested order, you just have to work through them all.

My hema doesn't think my Rituxan treatments are working. I'm for waiting, since I received
my last one 10/22. She is suggesting Promacta next, if the counts don't go up from Rituxan.
I'm not sure I'll do any other treatments after this unless I get super low.

Rituxan did not work for me either, but within 4 days of starting promacta things started getting better. I started at 50 mg a day and after a few months am down to 12.5 a day. I have been very fortunate and have no side effects. I like not having ITP symptoms and doing all my normal activities again..running, working out, hiking etc. Hard decisions to make about what treatment to try or avoid them all. Good luck with your decisions.

Hi All,

Just an update.... there is a medicine in India named as CARIPLLL which consists of 1100 mg papaya leaves extract is an Ayurveda medicine (100% natural) with NIL side effects. Cost is approx. INR 375 (USD 5.7) for 15 tablets.

Found it very helpful in maintaining platelets counts above 40k mark with 2 tablets per day.

You may also try as it is nothing to loose deal... hope it suits you. My mother has responded very well on this in last 3 months.. Lets see if it is a permanent or temporary option.


-- Mohit