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My mum has an auto-immune disorder (wegeners disease) and started methotrexate a few months ago to keep her in remission. She has lots of health problems but does not seem to have any particular issues with the treatment.
There are documented side effects (as there are with many drugs) but her disease is very serious and the potential side effects are much less scary than her disease recurring.
you see this is my dilemna....the side effects have got to be less significant than the problem, atm DS is on stroids which are not good long term...he has been on them for about 4 years cumilative now and i know the hospital are keen to get him off them BUT he has had not side effects from them and they work perfectly. Now it seem the side efects from this methotrexate are far more harsh and upsetting to DS, so I dont know what to do
I have been on methotrexate for the past 12 years for rheumatoid arthritis. It has worked very well for me and I do not have any side effects at all. Regular blood tests are essential and I also have to stop methotrexate if I have a cold / infection but this rarely happens. Before this I was on steroids for 3 years and I did not realise how bad I felt on them until I stopped taking them. I think long term use of steroids is to be avoided if at all possible. Methotrexate seems to have less long term side effects from what I have read. Good luck with your decision and all the best to your DS.
Would love to chat if you get a chance as I don't know anyone else in my situation What age is your ds?
My dd has been on steriod drops in her eyes for 5 and a half years, unfortunately her uevitis is very hard to control She was put on Methotrexate 2 years ago because she had developed glucoma in 1 eye and needed a trabuelectomy(sp), then she needed a cataract removed last year and is going into hospital next Friday to get another cataract removed if the inflamation is decreased at this fridays appointment
She dosen't have any side effects from the methotrexate but detests getting her blood tests done every 6 weeks the methotrexate has helped with her arthritis though as she has not had a flare up since she started on it!
msmungo...thankyou for your firsthand experience....your post is comforting, I am making a list of pros n cons and when we go back to the consultant i will give him a grilling...plumbummum, so sorry your DD is having such a tough time ...I would love to talk to you about it, it is nice to speak to someone going through a similar thing. DS has had no longterm damage to his eyes up to now but has been on steroids since he was 4...he is now 10. He also doesnt have the RA which quite often goes with this condition...(consultant keeps saying "are you sure his joints dont hurt??") I tried to CAT you but couldnt. I will be happy to talk to you any time, i think it is a bit of a comfort when you discuss ths with someone who can sort of know how you are feeling iykwim
Has your ds been on oral steroids, sometimes I wonder if my dd had been on those for awhile would her eyes have got this bad? How did he get diagonosed, your very lucky if dd's joints hadn't have swollen god knows when we would have picked up on her eyes!
When we first went to the consultant he put her on maxidex , with the intention of reducing it to a weaker steriod in month or 2, unfortunately she has been on it until last year when she had her cataract surgery now she is on prednisolone drops (just as strong), I'm still waiting on the methotrexate to kick in with her eyes, it was her RA consultant that put her on the methotrexate, we have had no major problems except a mad dash to the gp last halloween to get a blood test and we had to bring it to the hospital to get the results on time as both the other dcs had chicken pox, but as dd1 had already had them when she was 1 she had enough antibodies, so apart from that she has been fine,
the consultant recommended she take them on a friday night so if she did have any side effects (like a sore tummy) she wouldn't be upset at school etc
DS was picked up because his eyes were summer really red and sore the summer he turned 4. I thought it was hay fever at first but then as it worsened i took him to the optician at first who told me to go striaght to A&E...his retina was stuck ti his pupils on bothe eyes and his eyes couldnt dilate properly.
DS has been on pred forte steroid eye drops ever since. He had a six month break till this june when he has another flare up as bad as the very first....i took him back to A&E and insisted that he had the steroids again and got it back under control within the week.
We are under a fantastic childrens opthalmic consultant and are also being monitored by a RA consultant. Both fantastic but being in Liverpool we are right by Alder Hey, they treat a number of kids with similar conditions. They cannot explain why DS has not got the artheritis too. They want to use the methotrexate because his immune system in his eyes is hypersensitive and they want to dull it down and almost "restart it" iykwim in the hope that it will be re educated
Yeap pred forte thats what dd1 is on, four times a day in each eye
It is hard you'd think after so long it easy to take, sometimes I'm great then other times I go and I feel like someone has slapped me, our consultant is very good, he told me the worse case scenario when dd first seen him, unfortunately for us it came true, she did get referred to another consultant for her glucoma, and we were told by others that she is seeing the best there is here Her RA consultant is best you can get, only hard to get as she is always on seminars about Juevenile Arthritis in Italy and goes to London a few times a month. Any of the children we have met with arthritis either have no problems with their eyes or have been easily treated
People give me funny looks when I say she has cataracts as they associate it with their granny!
at least knowing your ds has been on them so long as well I know not to blame the meds, easier to know it is just her condition, dh keeps saying we're in it for the long haul but I just get annoyed sometimes as it has been ages from her eyes have been 'quiet' and when they are quiet we still can't reduce the drops or they just flare up again