The Scleroderma Society

Smear testing

Hi everyone,

Started Cellcept in October after being diagnosed. Had all the normal lung and heart scans etc. Before Christmas i had a letter from my Doctors saying i need to book in for a cervical smear test so i did. Went to the appointment on thursday only to be told i shouldn't have made the appointment and they didn't know why i even made it. When i said i was asked to by the surgery the nurse just looked at me like i had two heads! i said i thought it would be to do with starting the cellcept as i'm having all sorts of tests done and she just said no (this nurse has previously told me she didn't know what Scleroderma was and hadn't heard of my medication...) i shouldn't have even made the appointment as i am only 22 (you have to be 25 before you get regular smear tests in UK unless you have a child)

Not sure what to do really, don't really trust what the nurse says but i don't want to ignore the letters? Is getting smear tests after starting cellcept normal?


4 Replies

I don't know about smear tests but if you had showed them the letter from the surgery they couldn't have looked at you funny. They obviously made the mistake, not you. My last doctor used to be like that. I think they looked at me as if I was getting aches and pains because of my age and didn't need to do any tests. Very few doctors know about Scleroderma. I even diagnosed Scleroderma for myself from my systems and the internet. When I eventually plucked up courage to tell my rheumatologist that after a couple of years of treatment, he did not laugh but said some of the people on the forums know more than the doctors. So always ask here if you need help. You will probably find someone with the knowledge you seek to set your mind at rest.


H i I hope you are well. Having scleroderma is very rare, having it at your age is rarer still. I am on mycophenolate mote lief(cellcept) I have not been called in fro more smear tests than normal however, as with all medications there are side effects and with this it is some cancers, you must for instance be careful on the sun. For me though the benefits for my lungs far outweigh any side effects. Please speak to your rheumatologist over the phone. You do not have to wait for an appointment, phone the hospital and ask to speak to his Secretary. Good luck and stay positive. GP's are not the experts on this disease by a long way so we must be. Don't be fobbed off do the research and stand your ground. Be polite but firm and make it clear you are the patient. Best wishes.



Im 25 and have has two smear tests done int he last 2 years as im also on cellcept.. once before I had my son and one after! I woldn't ignore the letters, as there is a reason why we need regular blood tests and checks done.


Cellcept is prescribed for immunosuppressed people. It used to be that these ladies had yearly smear tests,but this has now changed. Its only ladies who are immonosuppressed because they are HIV+ that are tested yearly. He' would have to refer you to Gynae if he wants you to have the test. Im thinking that he doesnt maybe know about the change of protocol. I wouldnt worry x