I am struggling with what to do. I'm on Tamoxifen to reduce risk of returning breast cancer. I just started hydroxycholorquine for my RA and Rheumatologist said she wanted to add Methotrexate in December.
As I was researching, I read that Tamoxifen with Hydroxycholorquine significantly increases risk for eye problems over and above Hydroxycholorquine alone. My mother has the aggressive kind of macular degeneration so it is also in my genes. That makes me terrified.
Methotrexate terrifies me as well since my mom also has idiopathic fibrosis of the lungs and the methotrexate is said to increase the risk of lung issues over and above the increased risk already from RA.
Again, the drug increases it, plus my genes. Not to mention the bad side effects experienced by so many of you with methotrexate.
Do I risk the hydroxycholorquine w/Tamoxifen and ask to wait on the Methotrexate? Do I ask to get off of the hydroxycholorquine and go straight to just Methotrexate? Do I stop Tamoxifen and risk breast cancer recurrence.
Also...I've only been the hydroxycholorquine for 2 weeks and my hair has suddenly, and I do mean, overnight, changed from curly with nice texture to almost straight and coarse/straw like frizz. So on top of feeling rotten I look absolutely terrible. That's before any hair loss I might experience on the Methotrexate. Have any of you experienced this sudden change?
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I would ask to speak to your rheumatologist regarding these issues because you obviously need advice. Also, the doctor who prescribed your tamoxifen. You need to know that each of your doctors have considered you as a "whole" person and not as isolated illnesses. Perhaps you could have a chat with your GP and ask him/her if he would contact the individual doctors concerned. If not, then I think I would contact their secretaries and ask to have appointments with them to discuss all your concerns. And maybe ask to see an opthalmic doctor regarding the eye issues ( if not speak to your usual optician) . Clemmie
I agree with Barrister, you need to talk this through with your doctors. If you don't have specialist appointments coming up I'd start by booking a double appointment with your GP and discussing it with them - they won't have specialist knowledge of the drug interactions but they aresupposed to hold the ring between specialisms so should be prepared to advise about how to come to a decision and maybe help coordinate advice between the doctors.
However, if it helps at all my mother had both breast cancer and the aggressive macular degeneration. She carried on with lucite injections into her eye, and tamoxifen, right up until she died - at the age of 95, with only sight left in one eye, but living independently in her own home. So I do understand your fears, and did have similar concerns as I also have a bad lung history. And am on methotrexate, hydroxychloroquine and sulphasalazine.
Anyway my researches into hydroxy came up with a lot about the risks being very, very small under a lifetime dose of 1kg (which is approx 400mg day for 6.8 years). So I decided to use it, have regular eye tests, and think again when I hit that stage. And as for the methotrexate I came to the conclusion that the increased risks were low enough to be hugely less important than the effectiveness of the drug. i was struggling hugely with the disease by the time I was diagnosed, and was practically housebound and nearly bedbound.
I put a lot of effort into living well to ensure I do what I can to make sure my metabolism can process the drugs properly - so have a good veg & fish diet, little alcohol, daily exercise and 8 hours sleep. And I don't smoke. 5 years on my RA is in remission, and I have no side effects from the drugs, and am living a pretty normal life. Maybe I won't get to 95 like my mum, but my aim is to have as good a quality of life as I can while I'm here so I've prioritised life now against possible shortening of life in the future. I think you're quite young (?) so you will need to make your own decision about what's important to you and what level of risk is acceptable to you - so talk to your doctors.
I agree with everything you say although I'm not in remission yet I think when y get this disease you've got to take a step back and look to the future I have and my top priority is to get my wee place in the sun as a wee bolt hole so I can go back and forward to recouperate when things are tough , I've been put in it off for years but now it's top priority in life( oh and to get into remission as well)
A bolt hole in the sun is no bad thing. My f-i-l who's 85 next month is out at his now, been there 3 weeks & it does him the world of good. He walks every day, meets up with friends for barbecues, meals etc & buys his food daily, whatever takes his fancy at the markets & loves his fish which is so cheap compared to here & far more variety. He still drives & takes himself off wherever he fancies. I'd say if it's an option for you go for it!
, your Idea of a place in the sun sounds lovely. If it helps, I was on mtx for about ten years and was taken off it because of high liver readings. If I could, I'd go back on it again as it helped a lot, clearly with the OA. even with gut upsets it still was worth it
Yes we have been talking about it for years and never done it but with this illness I'm going to do it now plus the weather and humidity will help my bones just nicely take care
Go for it! Our place in the sun is nearly ready for us, well its on the west coast of Scotland, but we have underfloor green heating and sensational views! Its good to go for things while you can. We're looking forward to spending time with the baby lambs and watching spring happen. Once I've got my first new knee.
It is YOUR body. You need to have enough information to be able to make a list of the "pros" and "cons" of the treatments suggested. Only you can decide what is important to you. Ask and go on asking for information and consultation. Consultation means just that - not a dictator telling you what to do, so you need to have the options and the advantages and disadvantages clearly before you.
Can you get advice from an opthalmologist? As I understand it, the drug induced macular degeneration is a different type of problem to the usual macular degeneration, so it may also be a different level of risk, but you'd need to check that out with a specialist. Also just generally check out what is likely to be inherited from your mother (some diseases may just be coincidental and you don't have any increased risk from inheritance) and what isn't.
Methotrexate can do things no other drug can, in my experience, and it helps other drugs work, but there are lots of alternatives to try besides hydroxycholorquine that may be even more effective, such as Enbrel and other biologics. Also, methotrexate by injection has fewer side effects than by pill, if that is helpful. Do ask your rheumatologist. You have a right to know!!
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