Has anyone had withdrawal symptoms from stopping Methotrexate?

[Joanna098]

Hi,

I am new here! I was diagnosed with SLE 3 years ago (lots of joint swelling) and have gradually reduced my methotrexate dose from 25mg, stopping it 3 weeks ago. I would love to know if anyone has suffered withdrawal symptoms and if they continued to take Folic Acid to help with side effects of any remaining methotrexate in their system.

I have had a week of constant terrible nausea, fatigue, general weakness, headaches, ear/throat hurts-as if a virus without the temperature which isn't getting any better.

My GP and Lupus nurse (at Guys) are doubtful it is withdrawal symptoms (or my immune system just getting used to not being suppressed) and, as my joint pain hasn't worsened, it isn't my Lupus suddenly flaring either. I was on 2.5mg for months which I've been told is such a baby dose that coming off it shouldn't be the cause.

Gp checked me over and all is normal so perhaps it is just coincidence that I feel this but it would be very helpful to know if anyone can relate or advise me! x

[Ianrussell69]

Hi I stopped methatrexate back in September due to an infection the fatigue came back within a month and the jelly legs have come back although not as bad as befor also the aches and pains have come back and getting worse as the weeks go on looking forward to September when I can hopefully go back on it

[Joanna098 in reply to Ianrussell69]

Thanks so much and sorry to hear this. Can I ask what dose you were on when you had to come off it?

[Ianrussell69]

Hi I was on 25ml tabs for one yr but it was like taking poison made me feel terrible but when I started on the injections I had no side effects,I stopped taking it sept 22nd 2017

[loopy-lou]

Hi, May I ask you how long you were on methotrexate for and how slowly you reduced it. I wish I could be of help. I have been on methotrexate for around 5 years and am slowly reducing it. I am monitoring how I am. I seem to get symptoms whether I am taking methotrexate or not. I too wonder if some of my symptoms are from reducing. I was taking 20 mg and am now down to 10 mg. I just don't seem to be able to tolerate methotrexate any longer as I feel extremely ill for 48 hours. I have had lupus for 10 years. I too am getting extreme fatigue, stiffness and legs not working. Then, a few days later am ok until it returns. I hope you improve x

[Joanna098]

Thanks so much. I was on it for 3 years. I got to 25mg then very slowly reduced it down to 2.5mg which I stayed on for about 8 months to be careful. I didn't have any swelling or worse pain so we thought I was fine to come off. The last specialist I saw said 2.5 is so tiny it should hardly make a difference but the one who kept me on it must have thought it was protecting me in some way, and would make sense, if it is the reason I am like this having stopped.

No idea but when you take methotrexate, is there a pattern in your symptoms? As in is the stiffness etc worse in the few days before your next dose then better the first few days? If so, this would tell me that this might be your minimum dose to stick on for the moment and you could try upping to 12.5 in case you reduced it down too quickly this time.

It's hard as you say as we get all these symptoms regardless. If the level of stiffness (and especially any swelling) that I had at the beginning returned, I would be sure it is due to the lower methotrexate dose and be inclined to not lower it for a while before trying again. The more gradual the better. Are you on hydroxychloroquine or something else? As I reduced the meth down, my hydroxychloroquine was upped which I thought was a good idea.

Also the difference between us is is that you are wanting to stop because of the horrid side effects right? I am stopping because we felt I was stable and luckily I haven't had any swelling while I've been reducing it down. If you decide to stay on Methotrexate, I've read that taking injections instead can lessen the side effects. Have you tried? If I go on it again I am going to ask to do this. Also I took 5mg of folic acid 4 times a week (wed, thurs, fri,sat) before taking Methotrexate on Monday night. Increasing it helped me a bit, in case you are able to take more and for me the evening was better to sleep through it after taking it in the middle of a good carby supper or something- it knocked me out a bit less the next day! I know everyone is advised different things and perhaps you have tried all this.

Keep me updated on how you get on.

Take care x

[loopy-lou]

Thank you so much for your reply. Yes, I am reducing methotrexate because of the dreadful side effects I am getting. I used to be semi ok taking it, but as the years have gone by it is as if by body has had enough of it and the side effects have become worse. Like you, I take it in the evening (Tuesday) and ensure I have had a carby type meal, plus drink lots of water. I take 20 mg of folic acid a week but over 2 days, ie 10 mg a day on a Thursday and Saturday. I also take hydroxychloroquine twice a day and prednisolone.

I haven't tried methotrexate injections. I actually feel better usually the day before taking methotrexate. I am going to keep a diary of symptoms etc to hopefully get a clearer picture. It is the stiffness at the moment which is annoying me and minor joint swelling. It may have happened even if I was still on a higher dose. This is my first week at 10 mg instead of 12.5 mg. I will have to wait and see what happens.

Good Luck coming off it. Let me know how you get on.

Take care x

[Joanna098]

You too, let me know- Stiffness is so frustrating.

All the best x