Rituximab for skin condition -- plus caretaker needs mental health check

My husband has been told he may need to start rituximab to combat the immune-related skin lesions he's had for the past two months. Prednisone (now at 60 mg/daily--skin clears up but then as soon as he gets down to 20 mg or so, lesions return), valacyclovir, and various other medications have not been able to bring them under control. He was diagnosed this summer and has been on w&w...his wbc and lymphocyte levels were actually quite low so he had not anticipated needing treatment so soon.

Three questions:

1. Has anyone else had a similar situation? Is this skin eruption related to the progression of the disease, or is it just an unfortunate side effect of a compromised immune system? My understanding was that it was best to hold off treatment as long as possible. On the other hand, the prednisone is not a long term solution.

2. How disruptive is the rituximab regime? Doc said he would need 4 to 8 treatments (depending on how he responds), weekly. He seems to think he can do these and just go back to work the same or, at latest, the next day. He's an active man in his 50s -- is this realistic?

3. For caretakers: How do you support your partner but keep things real? For instance, we'd need to round up support to get him to 8 day-long treatments 1.5 hours away -- I can't do it all. But he's convinced he either won't need that many, or he can somehow go by himself.

Thanks for your help!

11 Replies

oldest • newest

lankisterguyVolunteer

6 months ago

Hi Piratequeen,

If you use the "Search CLL Support Association" oval in the far upper right of your screen with terms like rash, CTCL or dyscrasia you will get many past postings that describe skin problems similar to your husband.

Here was my reply to a very similar posting - 4 months ago:

healthunlocked.com/cllsuppo...

+++++++++++++++++++++++++++++++++

I have had a rash on my legs, arms and torso (mostly small red dots connected in a web pattern) since just before my diagnosis in 2008. Each of the 4 times I was treated for my CLL it got worse, but Ibrutinib made it much worse- painful & itchy.

Over the years I've had many biopsies; dermatologists and pathologists postulated Psoriasis, Eczema, drug reactions, and more recently CTCL or Mycosis Fungoidies. The common result was finding many T-cells and CLL cells in a specific layer of my skin. But the puzzle is why they are there.

My most successful treatment was Photo therapy (lightbox treatment with UVB rays 3X per week- similar to a stand up tanning bed, but with medical precision on light frequency and duration).

In winter - dry cold weather, if I break out, I use Triamcinolone Acetonide for 2-3 days then switch to a good moisturizer like CeraVe until the rash is well controlled.

The most recent diagnosis by a research pathologist eliminated CTCL and it's cousins, but attributed it to T-cell Dyscrasia.

ncbi.nlm.nih.gov/pubmed/176...

++++++++++++++++++++++++++++

And like Cllcanada/chris, I've had 15 infusion sessions with Rituxan, and I could always get myself to the clinic, and was able to function OK the next day (sometimes with a headache).

But the clinics would never allow me to leave after an infusion without an escort/driver due to the pre meds - benadryl or lortadine causing drowsy / slow reaction times.

And many infusions required 5+ hours from arrival to departure so with travel time to and from the clinic, the day was completely shot anyway.

Len

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