Rituxin, steroids and risk of infection: what precautions to take?

I was diagnosed in April 2019 and am on my third round of high dose steroids and second dose of 4 rituxin treatments planned. I am seeking information about precautions to take to reduce the risk of infection when one is so immune suppressed (which for rituxin can be 6 months, or more).
Is airplane travel, swimming in a lake, going to a public gym "safe"? Are public pools out? (cryptosporidium in the news).Any good research/recommendations on this?
I know one must live ones life, but am trying to avoid more trouble/achieve some kind of balance. Suggestions/information would be so appreciated.

Hi Meyes,

I was diagnosed in February 2019. I went through the same high dose steroid rounds and just finished my 4th and final treatment of Rituxan. We're probably safe to go about our daily routine, it's never a bad idea to wash your hands a little bit for frequently or carry a travel size hand sanitizer with you. Just be mindful of germs. We'll be fine though- it's not like hardcore chemotherapy. I still work out at the gym 5 days a week, do yard work and take my son to daycare. If you don't mind me asking, what is your plan with your hematologist? My platelet counts are all over the place (between 50-120) (63 as of yesterday). The hematologist wants me to have my spleen taken out but I'm getting a second opinion with a specialist as I'm only 32 years old.

I was pretty much a hermit for the first two months. Less so the next two. I may have been overly cautious, but it was the Flu season when I took it.

Thanks for your response. I agree some caution is in order and I will try to find out more.

My understanding is that splenectomy should be considered only after 6-12 months of disease, to allow for spontaneous remission to occur. It works better in younger folks, rather than old ones like me. Your relative youth and childbearing etc likely impact this decision.
An article by Bussel notes that the combination of steroids and rituxin (though doubly immune suppressing) has the effectiveness, nearly , of splenectomy in terms of statistics. However, the long term (over 5 year) response is only 20% for rituxin/steroids. And splenectomy works in about 2/3....I see that some on this forum have gone to England for an indium test to see if splenectomy might NOT be effective for them but I dont know a lot about this.
I think I will consider splenectomy if rituxin/steroids dont work, before I get much older....but if I am not an operative candidate will start TPOs then.

Thanks Hal.
I wish there were some written guidelines somewhere about this.

I am so interested in your table of ITP types, fascinating......are there background articles I could read so I could understand this better?

There are medical options available for ITP before anything so drastic as a splenectomy. There is no guarantee it will work. Why part with a perfectly healthy organ doing its job? Read up very carefully about post splenectomy risks and vaccinations required. It is a very outmoded method of treatment nowadays. There are many medical treatments available to try. TPO's are effective for the majority who take them. My personal preference is Promacta.
I have had ITP for 5 years and refuse to hide away, wrap myself up in cotton wool or have a splenectomy.

meyes, it was my own failure with Rituxan that motivated me to research ITP as I have. If I had known then, what I know now, I would never have taken Rituxan. Simply, Rituxan is a poor/useless option if one doesn't have a good steroid response - which I don't.

The table is premised on the first link given. That there are four antibodies, or physiology paths, to ITP. If one looks at this thread on row 2 one can get a good idea of how the table came about. Extend the methodology to the other rows.
'No Response to IVIG, ACK !'
pdsa.org/discussion-group/7-treatment-general/30169-no-response-to-ivig-ack.html#64535

Row 2 folks were a fun group to hold up in-example because they always, given enough time, seem to end up in remission.

Hal, I had no response to pred but Rituxan put me in remission.

CindyL wrote: Hal, I had no response to pred but Rituxan put me in remission.

Cindy, surely you jest ?
You've talked about taking 5mg of Pred which would normally keep counts above 20. That doesn't happen with someone that doesn't respond to steroids. 40mg of Dex (equivalent to about 200mg of Pred) raised my counts from 12-18 range to 23.
pdsa.org/discussion-group/6-general-itp-discussion/2874-ivig-question.html#2931

Also, you used Pred from 2004 to 2010 (at least) to keep counts up. Same thing. If one doesn't respond to Pred, one can't use it to raise counts.
pdsa.org/discussion-group/5-newly-diagnosed-a-frequently-asked-questions/3331-new-just-wanted-to-share-my-story-and-say-hi.html#3346

Do you see what I mean? Perhaps you are confusing a 'durable response', with just a 'response'. Yes, you did not have a durable response, but you did have a response to Pred.

That's one of the problems with a 'retrospective study' - a study of the past. Everyone can have different understandings. For example. I've run across those that say: 'steroids and IVIG did nothing for me'. But what they mean is that the drugs didn't put them into remission. On further reading, both drugs had actually raised counts to normal levels. When someone posts actual drug response data/numbers, then there is no terminology confusion.

When I was given IVIG (Ocatagam), my platelet count jumped up to 211 but that was short lived. Within two weeks they dropped again below 100. Thus far, I haven't had a response to Rituxan however it's supposed to take 6 weeks to work. We have no control-there simply isn't enough research being done with our disease to figure out a course of action. I feel like a lab rat these days. I'm thankful for this ITP forum so we can share our experiences. Does anyone know if Hematologists are hesitant to treat younger patients with "promacta". I mentioned that to my doctor and she said I was too young...I find that contradicting considering its approved for patients 1 year and older.

soco87,
My Dr is pushing me towards Rituxan instead of Promacta. She claims Promacta is a long term drug. For some reason I am just not wanting to go the Rituxan route right now. Counts were at 54 as of yesterday, but have dropped from 91 10 days ago. I am also tappering Pred from 80 to 70 now 60mg over the last few weeks.

At least try to live a normal life. I do always carry hand sanitizer and try to avoid coughers on planes (I admit this isn't always easy), but I don't feel that I have had more colds or infections than those without ITP. I've been on pred for most of 18 years (though trying now desperately to get off it! I've been on Promacta since the fall.).

Incidentally, I don't regret trying Rituxan (in 2004). It didn't work for me, but I had no side-effects. The chance of even a few years remission seemed and still seems to me worth the attempt.

I've done all of the above. From 2011-2017, IVIG (Octagam) sustained me with great level, receiving treatment every 2-3 weeks. For some reason, in 2017, it lost its efficacy. Since then, the only real luck I've had has been with dexamethasone (Decadron). I don't feel that it's a permanent solution but it seems to be bailing me out when they run low.
Promacta and Rituximab are different animals all together. One is an immune-suppressant and the other forces your body to produce platelets without suppressing the immune system. I've done both and neither really helped me. I would encourage you to avoid living like a hermit, if you feel that you can do so, only because of the potential psychological effects of potential isolationism. I'm currently on both dexamethasone AND Imuran (another immune-suppressant) and pretty much refuse to let this control me. I'm also a type one diabetic of 25 years and have said the same about that since I was diagnosed as a teenager.

Carrying things like hand sanitizer never hurt anyway so it might not be a bad idea to keep some with you. At the end of the day, you know your immune system better than anybody (doctors included).