i am currently on methotrexate.

[kimbo23]

i have been taking methotrexate since november 2011 but i haven't noticed any benefits. I get more headaches, hair loss and so much more tired. Does this medication take longer to work?

[Amethyst]

I know Methotrexate works for some people but I had to give it up. I had the same problems as you which only got worse. I suggest going back to your rheumy as there are other medications that may suit you better and work more effectively. Mycophenolate Mofetil is very good for me. I wish you all the very best.

[kimbo23 in reply to Amethyst]

Hi thank you for your answer. I attended my hospital appointment yesterday and they decided to take me of methotrexate and put me on the same tablets as you mentioned. So hopefully things will gradually improve. I was wondering, how long will it be before i notice a difference?

[Amethyst in reply to kimbo23]

For me the difference was quite quick, I think about a few months. But I did have bowel problems at first which meant an adjustment in the amount of MMF. I still have slight problems but the benefits of less pain and being more active (I went back to work part time) far out-weighs the disadvantages. I developed IBS but I cannot be sure that this would not have happened anyway and Mebeverine takes care of it quite well. It also helps if you can space them out throughout the day. I have been on MMF for about 8 years now and have no intention of coming off it. Hope it works as well for you as it does for me xxx

[Ca2jarman]

I was on MTX orally for a few months and then they switched me up to an injection. I had to do it myself which was not fun. After a few months u was more ill than before.y hair loss was scary and I had at least 3or 4 hospital visits a month for random things. Two of the visits were for a week at a time. The last time I had a severe kidney infection. The MTX leaves you open to so many things as it lowers your immune system. I'm no doctor but, I jut doesn't make sense to mess with an immune system that is already compromised by lupus. I felt so tired and suck on MTX. Everything you can think of I got while on it, strep, kidney and bladder infections, styes, yeast infections, .... It just leaves you open. I don't advise that you do this BUT I will let you know that I started to get sicker and depressed so I took myself OFF of EVERYTHING. Against my doctors orders. I really felt the combo of steroids and MTX was just killing me an making me fat. The more weight I gained, the more my knees and back hurt. It all just didn't make sense. It has been 2 and a half years and I haven't been on any prescription meds. I live in America and i no longer have insurance so I can't afford meds anyway! I haven't been to the hospital in over 2 years. My hair grew back, I lost those 15pounds I gained from all that crap the doctors were prescribing to me. DonL't get me wrong, I'm not cured. However, it is so manageable now. This is how u was before all those meds. I'm achy on some days, super tired, most days but I can live like this. This is how I felt when I first thought something was wrong with me 7 years ago. I went to the doctor for tiredness, aches and pains, and butterfly rash and after months of treatment it was those damn meds making me worse. I can take tired and achy any day compared to the side effects of the prescription drug side effects. Now I try and eat organic, exercise, and take ibuprophine on a regular basis. Believe it or not- laying in bed is the worst you can do. I'm so tired so I try to lay in and the body aches, neck and headaches begin. My body just siezes up. So I try to make myself exercise even at my worst. I never go to the gym I just lay on the floor and do light stretches. I hope my story helps. Sorry it's so long

[Yols]

Hi, I am on methotrexate and have been on them since end of August last year. Prior to that I was on Azathiaprine which made me really poorly.

I cant say that I am any worse on the methotrexate and dont know if it has really improved my symptoms, maybe a little. My rheumy is very slowly upping the dose. I have had a run of infections and viruses but during the winter we are prone to these illnesses anyway. It is true it does lower your immune system.

I cannot recommend stopping any meds, this can be very dangerous. I think Ca2jarman has been very lucky. I myself would not stop any meds, I am on warfarin and therefore run the risk of a blood clot or stroke.

If you feel your meds are not helping or your body is reacting to the meds, you must always seek the advice of your GP or rheumy first. I would recommend you speak to your rheumy about your concerns and they can give you an altenative treatment that may suit you better. Best wishes,

Yols x

[kimbo23]

thank you so much for your help - its really good to get different opinions.I will give them another month and see how things go.

[daisy11]

Hi my daughter who is 16 years and also I suffer from Lupus is on Methotrexate injection. 4 years on and she still finds it difficult to inject herself, but she needs to conquer this. She unfortunately went on to develop a really bad virus which she spent 5 days in hospital and on a high dose of antibiotics. She is also on hydroxy.

I am on MMF and Hydroxychloroquine.