Recently started on methotrexate again and was surprised to read all the warnings in tge literature pack about light sensitivity and resulting cancers.
I already have actinic keratosis and what look BCC developing on my nose and forehead.
Recently started on methotrexate again and was surprised to read all the warnings in tge literature pack about light sensitivity and resulting cancers.
I already have actinic keratosis and what look BCC developing on my nose and forehead.
Hi,
Can’t you be prescribed a LESS toxic, less carcinogenic drug?☝️🙄 Others on here have asked the same question. Surely the doctors should know this?
Sadly, none of the drugs are without some risks. I am presently on Azathioprine which also carries a risk of skin cancer and increased photosensitivity. I have a small growth on my forehead which I am going to get checked out. Otherwise, it's F50 sunscreen, hats and usual full sleeved clothing etc. All precautions I have to take now with Lupus. Sorry I can't be more reassuring but all the drugs for Lupus I have read about carry risks to some degree. I rationalise taking them because to do otherwise would mean a very poor quality of life for me. Can you talk your concerns through with the specialist nurse or GP? Perhaps they can offer you some reassurance. x
Hi R, already got the Efudix cream but have had little guidance on how often I can use it. I only know it should be used once or twice a day for a month, and can be repeated with a month in between. However no one seems to be able to answer what happens after treatment is finished. Does it fall off? Disappear? I've literally asked GP 3 times to find out and never get an answer.
YES! But some lupus drugs are better and less toxic or poisonous than others? Consultant hospital doctors are much better qualified than generalist GPs who IMAO tend to bluff their way when it comes to lupus pharmaceutical decisions IDK.
My own GP would never alter any of my consultant prescribed medications. In fact I’m under the care of 4 NHS consultants in : nephrology, dermatology, endocrinology and rheumatology. GPs usually do NOT diagnose OR prescribe for lupus. Fact!☝️
YES! But some lupus drugs are better and less toxic or poisonous than others? Consultant hospital doctors are much better qualified than generalist GPs who IMAO tend to bluff their way when it comes to lupus pharmaceutical decisions IDK.
My own GP would never alter any of my consultant prescribed medications. In fact I’m under the care of 4 NHS consultants in : nephrology, dermatology, endocrinology and rheumatology. GPs usually do NOT diagnose OR prescribe for lupus. Fact!☝️
Hi, I don't think there was any implication that the GP had either prescribed or was going to change the MTX prescription. I only mentioned speaking to a GP for reassurance on MTX side effects as it is prescribed for many conditions and in my practice at least is not an uncommon medicine. Sadly, some hospitals don't have a specialist nurses or consultants who are readily available for advice so a sympathetic GP might have been one route for Brychni if others were not possible.
An important point that I made is that many lupus sufferers, myself included are actually diagnosed by consultant NHS doctors NOT by their GP. Hence most of their medication is actually prescribed by the relevant consultant hospital medical doctor and not by their GP.
ALWAYS important to go back to the prescriber even with a phone consultation. Without sounding prejudiced GPs are generalist docs and NOT lupus or AI specialist docs. Pharmaceutical knowledge, dosages etc for lupus typically come from consultants and not GPs!👆
As you say GPs may be “sympathetic “ sounding but TBH most will not have the knowledge. Mine honestly and truthfully will admit she has not got the specialist knowledge to alter dosages or change the medication.👍☝️
According to one NHS hospital trust Methotrexate should only be initiated by a rheumatologist:
Have you read what one poster (Cas70) has said about Methotrexate?:
Hi. Tacrolimus which I am currently taking is the same. Mmf which I'm also taking comes with an increased risk of lymphoma which I have a family history of. My nephrologist decided the benefits out weighed the risk saying I would fair better with cancer treatment then i would a kidney transplant. I'm reassured somewhat that I'm on monthly bloods and hope anything would be picked early. Kind regards SML xx
Hi Brychni My wife was taking methotrexate for nearly 20 years when being treated for RA. She started to go downhill --loosing appetite etc our rheumy thought that the MTX was to weak and put her on a biologic that seemed to make her worse. Eventually, she was unable to swallow and was admitted to hospital for 6 weeks. Eventually she was discharged with no diagnosis and a recommendation to complete a DNR plus she was not to be readmitted to hospital etc. This was at the height of Covid and she was extremely ill. However, some weeks after her discharge the specialist, who had effectively written her off, rang to say that a blood test had come through indicating that her dsDNA was over 1000. It turned out that she also had SLE alongside of her RA. The outcome was that she was prescribed hydroxychloroquine because it was "a much gentler drug with less risks and side effects". After several years now she is not back to her old self but much better than she was. The hydroxy seems to be working on both the RA and the SLE.
Regarding GP help. We have a very good GP and we too expected him to answer questions about SLE and the medications, tests etc. --- he openly admitted that illnesses like SLE were "beyond his pay grade" he explained that he had 7000 patients and only 2 with SLE. The moral is -- even good GPs have an upper limit to their knowledge like everyone else in this world. They should not be criticised for this. That is why there are specialist consultants.
Hope this tail helps somewhat
Have you read what one poster (Cas70) has said about Methotrexate?:
healthunlocked.com/lupusuk/...
Hi Suvi - all drugs have side effects. At the moment it's either trying methotrexate again or not being able to walk. If I have to slather on more SPF then I'll take it! Got to work every day, have mouths to feed.
In fact, the first time I was on methotrexate I didn't have any side effects and I don't have any now either.