Hi I posted last week about decision to stop Mycophenolate after 12 months and switch to Azathioprine, unfortunately blood tests found I'm not suitable so now the plan is to start Methotrexate next month.
Just wondering if anyone had any tips to manage side effects?
I've tolerated Hydroxy, Pred and Myco without any problematic side effects so I'm nervous!
Hospital have said they'll switch to injections if I can't tolerate it.
Do you find that your body has adjusted over time and side effects have lessened?
Thanks
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Beau2016
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I think we are all so very different and it is very difficult to know how you might respond to any of these drugs. You've tolerated others so your luck may continue. I was on MTX for 8 months. I injected once a week, dose varied between 10- 15mg so I had no tummy issues but it left me horrifically drained for 40% of the week. It was the only time I've had an accident in my car (bar skidding on snow) in 40 years of driving, so it was agreed that it wasn't suitable. Once stopped that horrific fatigue subsided. Other than that I had no other side effects.
Others sail through using it. I gather if you have the oral type that having it with food in the morning helps. I also tried Leflunomide (sp?) but got very bad sore throat within 48 hours - stopped and tried it again but the same happened, so it was withdrawn.
I'm about to start Azathioprine so like yourself with MTX am anxious about side effects as I haven't had the best of luck. I think we just have to try and see and be alert to any potential problem. The only lesson I learned was that there are some side effects it's just not possible to battle through. Sorry probably of little help but to know that you are not alone in being a little anxious. I think most of us our when we start new treatment. Best of luck and do let us know how you get on if you feel able.
thank you so much, I don’t start on for 3 more weeks, going to start it on Thursdays cos I work from home on Fridays and don’t work weekends so hoping if I get side effects they’ll have lessened by Monday.
I have taken methotrexate for over ten years now. It's not a pleasant drug, but it's very effective. The main problems I found are stomach upsets and cystitis. On the plus side the fact that it's a broad spectrum drug means that it might help you with other immune system problems, I found my hayfever improved after starting it.
One of the reasons it upsets your stomach is that it wipes out a lot of your gut bacteria. I wait three hours after I have taken it to let it be digested and then take probiotics. I found this tip in a book by a Canadian lady who has had RA since she was a child.
I then taken another one the following morning and again the the morning after. This hugely improved how I felt. I just get them from Holland and Barrett although I expect they are cheaper online. I recently added probio7 which has more strains and they helped even more.
I've tried probiotics before because I kept getting thrust all the time, but they gave me a really upset stomach so I'm a bit scared of them! Maybe a different brand would be different.
Yes, I have had a bloated stomach when I took too many near the beginning, I had terrible stomach problems what with methotrexate, naproxen and antibiotics. I took one day to begin with and it helped a bit and then tried two a day and things hugely improved, then after about six weeks I got bloated. Now I take them as I said above. Basically they replace what's missing, so if you have enough already they cause other problems. They didn't seem to help with my thrush unfortunately, fewer hot baths and showers was the only thing that helped. I was worried about cystitis if I didn't keep super clean down there and it turns you can get thrush from too much soap, honestly we can't do right for doing wrong.
Hi Beau2016, I've taken methotrexate in the past for around 7/8 years and now taking Azathioprine since 2022.
I don't think I've had any side effects but also I'm not sure whether I've felt any better for taking them. It's hard when you have several conditions to work out what might be causing symptoms! And there are days when you just feel ill and don't know why.
Methotrexate was stopped when I had an emergency stay in hospital due to severely reduced kidney function. This was treated with mega Prednisolone infusions and a few weeks later I started on Azathioprine.
However, my rheumatologist did not lay any blame on Mx and really didn't know what caused the emergency. However, he concluded that Mx didn't stop the problem from occurring, that is - it was not effectively working to stop that unusual flare of Lupus activity so it was time to try something else.
Your plan to take Mx on Thursdays sounds very sensible. I hope it's plain sailing for you and does the job without upsetting your body. x
Sounds similar to my Mycophenolate journey, didn't give me side effects but didn't help either! I've only recently started to get problems with kidneys - so far only blood/protein/white cells in urine and sudden high BP so I think is why the decision was made.
I feel brilliant on pred but I'm only allowed maintenance dose of 10mg a day. Drs tell me is just masking the problems.
Thanks so much for your reply, it helps to know I'm not alone x
Yes, comparing problems and solutions is always helpful and comforting I think.
I too am on Prednisolone, currently 15mg per day, for skin flares. Prescribed by Dermatologist in 2018 and still taking.
It seems to me that once new symptoms appear they don't really go away. Still I'm now 71 and had Lupus etc for around 36 years and mostly been able to do what I needed to.
I feel that things worsened after menopause. Perhaps the lack of those specific hormones left my body vulnerable.
Please post again when you're taking Mx and let us know how it's going. x
Hi Beau 🤗I've been on Methotrexate since 2019. I started on 12.5mgs in tablet form which my doctor said was a low dose. Over the years I have increased it to 17.5mgs and now take it in injection form. However just recently my doctor has reduced it to 10mgs as there are problems with my blood cells.The first time that I took it I felt a bit weird..mild headache..slight visual disturbance and mild nausea. That was the first dose only and I've had no side effects since..until now that is. I'm still on it though even though it's a reduced dose.
You're doctor will prescribe folic acid to take every day that you don't take the MTX. I take mine on a Sunday as I can have the day off so to speak. I think your plan to take on Thursday is a good one seeing as you haven't got much on following your dose.
Hi when I was on it I had folic acid except day of methotrexate to reduce side effects.I tolerate tablet ok very tired day after dose so used to take when quiet day next day.
Otherwise regular blood test important I didn't tolerate azothiprine either all best
I have been on Methotrexate for nearly 30 years. Bit of nausea for first few weeks but other than that no issues. Has been a life changer for me. Good luck
I used to get terrible headaches with methotrexate but tolerated it much better in divided doses- half on a weds, half Thurs and folic acid on the friday. I know some golk have it by injection.It did help with joint pains and the massive skin inflammation I had in the beginning.
Florence91 Lovemydogs1 soul22 Krazykat26 FandNnan RosieA JenniferW Hello all, thanks again for replying to me back in July. I've started on methotrexate injections 6 weeks ago and for the first time in 12 years I have significantly & consistently less pain! Took about 4 weeks to notice a difference. I'm now starting the slow taper of steroids which I've been trying and failing to do for past 12 months.
Its been a tough one to get my head round because despite the pain & stiffness relief there have been side effects which are making 1-2 days a week pretty rough! The tiredness and headache for first 24 -36 hrs afterwards has made work impossible.
I am so pleased that you are finding some relief with the MTX and are starting to taper the steroids (a major feat I know). Have you mentioned the side effects to anyone? They may have some solution. Thank you so much for letting us know. xx
Thanks, hosp prescribed 5mg folic acid for side effects, mainly because I've lost so much hair over the years from lupus alopecia they wanted to prevent it worsening.
Seeing my GP next week so will mention it to them. xx
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