Cellcept and skin cancer
My specialist stopped the MTX and started me on Cellcept and I have been taking 1,500mg for a while (1 tab am and 2 tabs pm). It has been a miracle treatment although I walk a fine line when the UV is up and cannot tolerate any sun at all, nor UV or fluoro lights.
I have been diagnosed with UCTD - Lupus, RA and Sjogrens - only a mild positive ANA and CRP but meet the diagnostic criteria in other forms in terms of raynauds, malar rash, joint swelling/pain, zero tear production, tiredness and hair loss. I am also on plaquenil and preds.
Now I get my skin checks twice a year and every two years I tend to need moles cutting out which look suspect but turn out OK, except for a couple of weeks ago when my skin doctor saw two moles that he wants to remove. He doesnt think they are melanoma but they need to come out to rule out other cancers.
Because I am on the cellcept, he now wants to see me every 4 months - my first reaction was to stop the cellcept as if I do have skin cancer then I certainly dont need anything to increase that risk but the skin doctor said I must not do that at all.
I am due to see the Rheumy on 22 Jan and then my moles get removed two days after and they will review the Cellcept depending on the skin results, I am so scared if I am honest and to cap it all my Dad has just been diagnosed with cancer, my sister is recovering from cancer and my Mum died of cancer so I would rather suffer symptoms than increase my risk of getting the disease.
I shall talk to my Rheumy to see what he says, I know I am quite sick from the sjogrens part of it - my lungs hurt but as far as I know my other organs are fine.
But I wouldnt mind knowing aside from tooth loss from the lack of saliva and the joint pain and tiredness, if I have to stop the cellcept for the skin cancer risk, what is the worse that can happen with UCTD?
I know this doesnt make sense, but I am scared of what the Cellcept might do, but I am just as scared as how sick I will get if I stop it.
Sorry for the long post, just looking for some advice really.
hi corella, i can offer advice, but i can offer hugs.
pm me if you want someone to chat to, i can come over, or on the phone.
I'm glad Steve.b is passing out hugs! I know I could often use a few when trying to figure out the medicine questions myself...
I have SLE Lupus and Sjogrens. Right now I'm only on Cellcept and Ibuprofen. The cellcept has helped my Sjogrens out tremendously. I'm not getting the eye infections as often and I can talk without needing my lozenges. It hasn't done anything for my joints or swelling from the lupus though. I've only been on the cellcept for 2 months now, so I can't tell you much about skin cancer possibilities regarding medications. I myself haven't had any side effects from the cellcept in my 2 months of using it. (I was at 1000mg now bumping to 1500mg to see if higher dose will help with lupus symptoms.)
I hope someone can answer your question as I'll be watching for an answer as well! Good luck & I sure hope everything works out in your favor!
Wow thanks for sharing!
I take 1500 mg twice a day and had no idea that there was skin cancer concerns with cellcept.
I do get little crusty bumps on my arms and face that easily scratch off but then return later.
Dermatologist said they were pre cancerous and removed them with liquid nitrogen.
But that was before I was diagnosed w/ lupus and I haven't been back as it didn't seem important as compared to lupus.
Might take you up on that - Ive decided to try and not think/worry till I see the Rheumy but its going to be hard.
Originally Posted by steve.b
If my risk of cancer is increased with taking these, I would rather take my chances with UCTD - after all my liver/kidneys are fine and if I can put on my 'big girl pants' and ride out dryness, tooth loss, pain, tiredness etc and just manage on 5mg steroids and plaquenil, then I will happily stop the Cellcept for peace of mind.
If I had full blown Lupus I guess it would be different.
Actually Steve, we should organise to meet up for a coffee - that would be very nice :)
Well the results of the mole removal came in, initially I was advised by the doctors wife that 'all was good' but just as I was enjoying some pizza and wine last night (as you say Steve, we just have to treat ourselves!) My doctor called me and said he was a bit concerned because normally every two years I have a dysplastic nevus removed (usually harmless moles that have changed but are not cancerous but could turn if ignored).
The diagnosis every two years is always 'Mild dysplastic changes'. Well last night when the doctor called me, he advised me that it was in fact a concern as 6 months ago (I had just started Cellcept) the mole was perfectly normal.
When it was removed last week, the results have come in as 'Moderate dysplastic changes' - he is concerned that in a very short space of time, I have gone from my usual 'mild changes' to now 'moderate changes'. Is it the Cellcept I wonder? The guidelines with this drug are clear *if you have had any kind of skin cancer, you should not take this drug*
Now I havent had skin cancer, but I do get the dysplastic nevus syndrome and now they appear to be changing much faster than prior to Cellcept. Just not sure what to do now, my skin doctor wants me to contact my Rheumy on Monday to see what he thinks but who weighs up this risk and is it worth accepting?
My goodness, we take one thing and we get another.
Thanks for listening.
Oh yes, Steve - it was so nice to finally meet you the other day and thank you for walking me back to the office - did it take you long to get home?
this is just my thoughts ....
if the cellcept is doing this to what you can see,
what is it doing to the rest of your body?
what other options are there?
will taking a stronger dose of mtx work instead?
btw ..... i am here is you want to chat :)
thanks for the coffee, love your smile
Im not very tolerant of MTX so I am going on a low dose and reducing the Cellcept to 1000mg a day. I had all these questions to ask the specialist but I forgot. I go back in March so my husband wants to come in with me as he can ask questions too which isnt a bad idea.
Originally Posted by steve.b
But MTX can cause skin cancer too, I guess there are not many options, my husband is worried if I come off the meds how I will cope and he also worries about the side effects but I will say that Cellcept has made a different to me and helped a huge amount.
Yep coffee was nice, I paid the price the next day - swollen joints, but I don't normally go out at lunch but it was nice to meet up.