Cellcept & use of sunscreen indoors recommendation

Hello,

I was diagnosed with ITP the beginning of June. I have been on Cellcept twice daily and monthly Rituxin treatments. Last week during my monthly visit with my hemotologist he asked me if I was using sunscreen. I told him I spend very little time outdoors but if I do I will use it. He told me I should be using it indoors as well. That was the first time I heard that! Does this sound familiar to anyone else; if so I would love your input.

Thanks!

Terry

Hi,

I was on CellCept for about 15 months and used sunscreen while outside but not indoors. Your haematologist sounds like he is being extra cautious as you are doubly immunosuppressed with both the CellCept and the Rituxan.

Your Rituxan regime is unorthodox. It's usually given weekly for four weeks. How many treatments are you having?

Terry, if you are using sunscreen, make sure it doesn't have retinyl palmitate in it. The FDA has determined that retinyl palmitate speeds the development of skin cancers.

Here's more info:

breakingnews.ewg.org/2011sunscreen/sunscreens-exposed/sunscreens-exposed-9-surprising-truths/

I used email a minute ago, and I realize I probably should have done this instead. I am just now becoming familiar with this site. You mentioned my rituxin regime being unorthodox. I am getting a treatment once a month until next May

Could you recommend a sunscreen? I would be grateful . . . It would give me a place to start.

Thanks!

Terry

That is a very unorthodox Rituxan treatment! You might want to ask your doctor where he came up with it. Most typically used is one infusion a week for four weeks. The maintenance Rituxan like you are getting has been used for certain blood cancers but I don't believe there is any evidence for using it in ITP.

Other ITP Rituxan regimens all involve LESS Rituxan - some have tried four weekly low dose infusions. Some have tried one or two full dose infusions (spaced a week apart.)
Erica

Terry - how are your counts? I don't know that I'd be comfortable with that Rituxan schedule either.

Hello, Ericka! Thanks for communicating with me on my illness. Do you also have ITP or are you a medical professional? You seem to know a lot about the subject. I've been uncomfortable about the medication schedule I've been on; mostly instinct on my part. I'm not normally a very trusting individual, so I thought it was just me being me. My hematologist seems to be highly respected, but sometimes I get a little nervous with all my doctors not communicating as well as they should be; not treating me as one organism but just a series of body parts. They all seem kind of clueless sometimes with the details of what the others are doing; I seem more "in the know" some times than they are, when it comes to what everybody is doing. Unfortunately, I don't have a medical degree so I can look for any problems in the fine details of my situation. I have pulmonary, liver, endocrinology, & cardiologist doctors working on me in addition to the hematologist that is heading the "team". The liver doctor assigned to me found I was carrying a gene for a liver deficiency disease called alpha 1 anti tripson which I recall has something to do with the immune system; he never did confirm or deny if I actually had symptoms of the disease. I got the impression he wasn't sure.

My all time low platelet count was 3,000 when I was in the hospital the end of May after being diagnosed. Since then I have been yo-yoing back and forth but gradually gaining ground. I hit my highest number to date of 172,000, about three weeks ago, only to fall back to 125,000 last week. Tomorrow I go back in for my weekly blood test. I had my last rituxan treatment last Tuesday, and my counts seem to fall for a couple of weeks after that.
I humbly ask anyone who reads this to wish me luck, or say a prayer for me, whatever you style. . .

Terry - it's odd that your counts would react at all to the Rituxan treatments like that. Once Rituxan knocks out the B and T cells, the result lasts between 6 and 12 months. Rituxan usually takes 4 to 12 weeks after the first infusion to work and once counts respond, they usually stay for a period of time. It's normal to fluctuate somewhat.

Terry
Here is a list of lesser toxic sunscreens:

breakingnews.ewg.org/2011sunscreen/best-sunscreens/best-beach-sport-sunscreens/

PS
and Terry most of us find your Rituxan regime strange.

I had the regular 4 weekly infusions of Rituxan in 2006. It put me in remission for 4.5 years. I recently had another 4 infusions in August and am expecting another long remission.

Sandi,

I definitely have some questions to ask at next months "rituxin day". My hematologist is known as an excellent doctor, and appears to be highly thought of. He must have his reasons for the treatments he's giving me, but I need to know what they are also!

Thanks for the help, and for this site! I plan on making regular visits in here!

Terry

I wonder if it's not rituxan you're having but either IVIG or Anti-D (WinRho). That would make far more sense.

CellCept with Rituxan doesn't make sense either as you'd be doubly immunosuppressed which would not be a particularly good thing. CellCept can take 3 months to work so using IVIG until then would be likely.

Many haematologists are experienced in malignant diseases and not the non-malignant disorders like ITP. And feeling that you know more about ITP than the doctors is a common theme. I definitely know far more about it than any GP I've seen.

I basically experienced the same as Ann. I was on CellCept for about 2 years for ITP and used sunscreen outdoors, but not inside.
Side note: CellCept eventually just stopped working for me....it simply ceased to have any effect.

Your Rituxan treatment certainly is 'different'.

.