After six months of 400mg plaquneil a day and many doses of predisone, my rheumy is starting me on methotrexate sodium. I admit the fact that he told me it's "chemo" and the side effects, it scars me. Even if I was in the best health otherwise it would scar me, on top of SLE I have Chrohn's and my heart is backwards. I am waiting on approval from my cardiologist before I start it. I would like to get feed back from anyone that has took it. The good and the bad, any advice? I know to be prepared to be very tired during the therapy.
I've never been on methotrexate as i had a rheumo who would'nt perscribe it because of my organs but mainly my liver carrying a Tumour but although there's alot with the drug it's surposed to be excellent regarding SLE.
If your being left on the plaquenil and your able to start it with plaquenil...my Dermo swears by the two being a good mixture together for DLE/SLE besides my neuro and psychiatrist i was under.
Apparentley it's surposed to be an immunomodulator used to induce and maintain remission of Crohn's disease.
Here's 2 links one about methotrexate symptoms and one on monitoring.
It's alot more serious than plaquenil...i was put on Dapsone which is even stronger and they pulled me off it i was going yellow and it was affecting my organs besides sending me yellow.
There's always affects to all meds but it's really down to how the body excepts it. xxx
Right now I'm trying the exercise routine to keep my off the plaquinil. I'm lucky I still have my eyesight after taking it almost 4 years and not being closely monitored.
I am sorry you know about your eyesight and it's been pure neglect on your behalf concerning your sight...some doctor's just don't match the criteria of how they should really work.
All the best with your exercises.
Hugs Terri xxx
dawnloree said:
Right now I'm trying the exercise routine to keep my off the plaquinil. I'm lucky I still have my eyesight after taking it almost 4 years and not being closely monitored.
The p.a. that prescribed it for me worked for the same office I worked for, all she mentioned is I should see a Rhemy... not that it needed to be closely monitored. Then at the first of the year my "husband" cancelled my health insurance. So at least now I'm on the right track to taking care of myself and trying what I need to to get along. As soon as I get some money saved up after paying the Rheumy it's off to the Opthamologist!
The p.a should have known better though knowing about the drug because of the damage it's caused otherwise....i'm off to see Opthamologist on the 1st november for a field test, i've not got a clue if the doctor as refered me just giving me the plaquenil for the meantime till i see this new rheumo or my optician...as they've mentioned my field vision is bad.
I am sorry to hear though your hubby cancelled your insurance when it was most important to you not long being on it...well at least you'll know about yourself being looked after correctly doing it yourself...well i hope and fingerscrossed for you that once you've payed your rheumo the money is saved quicker than you think.
Unfortunately, the plaquneil can effect your field of vision without you knowing. I worked in ophthalmogy for 10 years and preformed many visual fields on plaq. patients. It can damage your eye health and not your vision also. I wish all doctors told their patients to go to the eye doctor as soon as possible and make sure they know what medicine they are on. My doc did tell me but I already knew.
Dawnloree, what is the excerise routine you are talking about? I stay active and my rheumy told me that being active flares lupus but to stay moving. ??
Before i was allowed to touch it, i had to have my eyes tested by the opticians and that eye test went to the Opthamologist to read first...i still had complications with my eyes but they also know how badly in pain i am.
Every appointment i attend my prescription is taken with me and before i have new meds they all have to be checked besides for counter reation as that i can't afford.
I have joined my local gym Planet Fitness. For $20. a month unlimited use to all equipment and the Infrared Light Therapy. Suppose to help muscle aches etc... That and what the Rheumy has prescribed me I'm feeling better than ever. The husband is one that believes Fibromyalgia, Lupus is all in ones head. I'm so much better out of that situation. If he cared about me at all he wouldn't have taken my off the health insurance. Or should I say soon to be X? :-)
Hi… I use Merhotrexate before for a few months but it made a lots of my hair fallout and it just didn’t work for me …my Dr try Arava and it work better than methotrexate then he put me on Rituxan infusions wich work wonderful… I think you should give it a try and see if it works for you …remember everyone it’s different and what works for you might not work for me… I wish you the best and I hope you get better …love Dunnia
Well it sounds the gyms helping mate and i really hope it helps your muscles also...my rheumo told me to go swimming for my muscle wastage, i said i do have seizures besides i've been banned from swiming baths besides...some talk right through there
so annoying.
Dawnloree i'd say X mate from now on.lol and i can read between the lines cancelling your insurance which was bad as really wound you up and he sounds like he's got no understanding what so ever...my 1st marriage did'nt last 2yrs, would'nt help me in a seizure, also a bully and to top the lot went off with another woman...i was divorced in 6mths then 5mths laster met ste and best thing i ever did. xxxx
dawnloree said:
I have joined my local gym Planet Fitness. For $20. a month unlimited use to all equipment and the Infrared Light Therapy. Suppose to help muscle aches etc... That and what the Rheumy has prescribed me I'm feeling better than ever. The husband is one that believes Fibromyalgia, Lupus is all in ones head. I'm so much better out of that situation. If he cared about me at all he wouldn't have taken my off the health insurance. Or should I say soon to be X? :-)
Good statement mate and it's what i believe in also about medication and their side affects.
"remember everyone it's different and what works for you might not work for me...."
Dunnia said:
Hi... I use Merhotrexate before for a few months but it made a lots of my hair fallout and it just didn't work for me .....my Dr try Arava and it work better than methotrexate then he put me on Rituxan infusions wich work wonderful.... I think you should give it a try and see if it works for you ....remember everyone it's different and what works for you might not work for me.... I wish you the best and I hope you get better ....love Dunnia
Hello Dragonfly, I have been on methotrexate & Plaquenil for 1 1/2 + years. I love it. I started to get healthier after several months. Yes it is chemo and has the side effects, but two years ago, I thought I would end up disabled. I also have RA & OA, fibro and other lovely little diseases thrown in for the heck of it. It did make me sick the first 2 doses, but that settled down. I am doing better every day. My Dr still tweeks my meds as necessary every two months. Good luck hon
I took the tablets so I only know about that. I was nauseated and had diarrhea hair loss and fatigue but it did stop the lupus in its tracks. After I went off of it took about six months before I caught every cold and virus going around it was a trade off the 105.8 fever from the lupus or the side effects from the drug. I think with your other complications the injections might work better so it doesnt aggravate your chrohns . I hope they find a protocol that works for you . God Bless.
Sorry to hear about your extra issues besides Lupus...as there's so many of we with those extra complications going on but regarding your mixture of meds both being chemo drugs...my dermo swears by plaquenil and methotrexate being the best ones together for DLE/SLE.
Love Terri xxx
sharlene said:
Hello Dragonfly, I have been on methotrexate & Plaquenil for 1 1/2 + years. I love it. I started to get healthier after several months. Yes it is chemo and has the side effects, but two years ago, I thought I would end up disabled. I also have RA & OA, fibro and other lovely little diseases thrown in for the heck of it. It did make me sick the first 2 doses, but that settled down. I am doing better every day. My Dr still tweeks my meds as necessary every two months. Good luck hon
Both plaquenil and methotrexate are chemo drugs but your going up a level stronger with methotrexate and both carry side affects which some members get and some don't it's all according to your system....with plaquenil it's mainly the eyes it can damage that's why an opthamologist as to be seen first but with methotrexate once on it regular bloods have to be taken and it's known to affect the organs.
I was on Dapsone it affected my organs and i started swelling out and going yellow and they pulled me off it immediately and now i'm back on plaquenil managing with that while waiting for an appointment for a new Rheumo.
Love Terri xxx
EdieLynn said:
So please explain, what is going on to make the change from plaquinin&metho
I've been on methotrexate for 3 years. It's hard for me to tell which drugs cause which side effects - Plaquenil, Imuran, prednisone, Benlysta or methotrexate? I lose a lot of hair but that's common with several drugs. I'm very discouraged that I'm still having flare ups (still recovering from the last one), despite all the drugs. I try very hard to exercise, get enough sleep and a follow healthy diet. I sincerely hope the methotrexate works for you Dragonfly!
so annoying.