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

I have had 20 rounds of rituxan... usually monthly but the last 8 were every two weeks...

I don't think he should be driving on it, due to the premeds, usually benadryl, certainly zones me out for a few hours after...

Could arrangements be made to have infusions closer to home? There is a new 10 minute rapid sub-cutaneous type of rituxan, but its just being approved, in most counties... worth asking about...

roche.com/media/store/relea...

~chris

When I did rituxan monotherapy ( not usual for CLL itself, but my CLL is unusual) I was able to work the next day teaching elementary without problems. I agree with Chris about driving. I often stayed at a local hotel and went to work from there. I would certainly ask about getting the infusions closer to home. Good to have a more local doctor working with the specialists anyway in case of emergencies.

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...

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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...

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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

I too have been biopsied twice to see if the non-hodgkin's was in my skin. My rashes have continued for almost two years. I'm now trying light therapy to see if it will help control it. Very uncomfortable and frustrating. It's seems that with my compromised immune system I've developed hypersensitivity to most common soaps, shampoos and other products.