Methotrexate

Teapot

Good morning everyone. I have not been on here for a while now but when I was first diagnosed with RA it was a great help and comfort to me. I have been on methotrexate 15 mg 1 injection a week for many years together with benepali 50mg 1 injection a week. For the last few months I have been feeling extremely tired immediately after injecting methotrexate and bad nausea all night. Basically I lose a day. The folic acid does not help. I have no bad effects after injecting benepali. I don’t think the methotrexate is working anymore considering the nodules on my hands are increasing faster and my feet are badly misshapen (this has been noticed by my podiatrist who visits every six weeks. Unfortunately I have not seen my consultant for almost a year as appointments are mostly with a nurse. I am due to see consultant in July so am making a list, Has anyone else experienced this with methotrexate after being on it for a long while ? Also I had a mini stroke a year ago and am now of blood pressure and blood thinners. Has anyone else asked or come off of methotrexate ? Sorry for the ramble but had an awful night, Thanks for reading

Naomi33

Morning @Teapot

Sorry to hear your concerns about MTX I have only just started injections on my 7th week so cannot answer question about it stopping working. However my consultant told me to contact her if I have any concerns or side effects and feel it is not suitable and I could stop taking it ????

Could you not contact your consultant and discuss sooner that July as a priority ???

Best wishes @Naomi33

mirella123

HI allI have suffered from RAfor 15 years now, tried so many messages nothing works. I have completely changed my diet, gone gluten free, stopped drinking for 3 years, now I only drink Vodka, sparking water and lemon. I drink 1.5 liters of water a day, I gave up sugar for 1 year, I lost 3 stone in 1 year, after so many steroids and pain killers. All this change the specialists insisted on did not help one bit, I still feel lethargic, tired, everything still hurts. From OOctober 23 to April 24 I was taking g 15 mg every Monday night, yes it made the allover pain go away, but the feeling constantly sick, headache and feeling like I had blurred vision, still tired, I had enough and said no more. I sseeked Advice from a lady who is a doctor in Kinesiology. Well I have been on hherbal Medication for 1 month, I cannot rave enough about how well I feel. Now I can actually work 10 hrs a day, still come home, do dinner, walk the dog,do the washing. It's nuts, I wish I found this lady 15 years ago. My specialists very kindly didn't kick me off the RA List but was very curious to see how my bloods would be like after 3 months, I will let you know. Now I'm looking for a personal trainer to strengthen my whole body, I have been looking but all I get told is their insurance will not cover RA. I'm doing basic on line strength exercise but I need some who will take me on but understand if I can't do a session if I have a bad few days, maybe a week. Thanks for reading, except for my family and a few friends no one understands what I'm talking about.

noddingtonpete

Hello @mirella123 and welcome to the community. We are a friendly and supportive group and I hope that will be your experience as well.

I understand that you have RA and that herbal remedies are really helping you which is great. Herbal remedies work well for some people but sadly not for everyone. As regards exercises you could try our Let's move series which might be of help.

https://www.versusarthritis.org/about-arthritis/exercising-with-arthritis/lets-move-with-leon/

Please keep posting, you are among new friends now who understand what you are going through.

Best wishes

Peter

BabsG

Hi, have only just registered here today. I was diagnosed with RA in Sept 2020 and put on 20mg of Methotrexate (8 tablets). Everything was going well, no pain, swelling etc until approx. 2022, when I then started to struggle to swallow the tablets. I asked the rheumatology nurses if I could crush them into food, but was told absolutely not! So, I stopped taking them. Obviously the pain and the swelling came back. I'm now having weekly injections (self administrated) and again all is good, mostly pain free, though I do suffer from sickness feelings and nausea for 2 days after the injection. However, I now seem to be experiencing some psychological affects, in that, before I inject I start to shake/shiver and gag. In fact as soon as I even think about or see any of the medication I experience these effects. (This is the same effects I was experiencing whilst taking the pills). I am a little worried that I will get the point where I cannot face injecting either. Is anyone able to offer any advice on this? I was thinking that maybe some sort of therapy (like CBT/EMDR) would be useful. Does anyone else suffer like this?

Trudy637

I have been on methotrexate tablets for just a year but now my liver has decided that it doesn’t like it so had rheumatologist appt yesterday and am changing to injections but have to wait for 6-7 weeks so back on tablets again down to 15mg from 20mg. Been off them for 5 weeks I am in agony was in such a good place but now am really down and just want to cry 😢😢

PJoanne

Hello @Trudy637 and welcome to the community. I hope that reading and chatting to other people here will be of some comfort to you. Could you contact your care team/RA nurse to discuss your pain levels? I've sent you a private message as well.

All the best

Joanne

PJoanne

Hello @BabsG ,

Welcome to the community. Thanks for posting. I hope that you will get some feed back and find reading about the experiences of other people helpful to you. I think it is definitely worth flagging this to your care team/RA nurse to see what help they can provide for you.

All the best

Joanne

Welsh1

Is there a physical reason you couldn't swallow tablets? Have the nurses suggested a physical reason for shaking have you had blood tests others? Or do you feel anxiety is a part? If the latter ask for help use apps mediation relaxation

BabsG

Hi, don't think its physical because at the time I could swallow other tablets (paracetamol etc). Am pretty sure its psychological and possibly anxiety/fear driven. I had a brief (yearly) chat with my GP last week and she pretty much agreed with me (and offered no other support/suggestions). So, I've now referred myself to my local Talking Therapies team who offer CBT like therapy, so we'll see how that goes. I have been having regular blood tests (monthly) and nothing has been flagged so far - assume if anything irregular had been found, someone would have been in touch. Will start researching relaxation apps - good idea!

Welsh1

Oh I have been there our brains impact so much on our physical health. I do pilates tai mae through this site use apps. Talking therapy sounds good I also attend any groups with people with arthritis and you find similar stories and support in that way best of luck..

Woofy

sorry you are going through this.
I am about to start the injections, having been on 9 tablets weekly, will little improvement. I try not to think about how much medication I am taking these day, and I only glance at the paper stuff that tells us about all the side effects.
then I put it away, otherwise you would frighten yourself silly. Of course we have to be made aware, but I’m more focused on finding something that’s going to get me out of this pain. I have had reactions to some of the DMARDs that most people don’t have a problem with. Do any of these drugs come in liquid form I wonde?

Teapot

Good morning. Thank you for all the info sent through. I am still experiencing nausea after all the years being on methotrexate. At first I was Ok but over the last year it is getting worse. One thing I did not mention in my first post was that I had aTIA a year ago and have been on blood pressure and blood thinners since then. I am now beginning to wonder if the mix of meds has caused nausea but my consultant or GP gave no warning of this possibility. I was just wondering in anyone else has experienced this. Yesterday was not good took methotrexate at 9am instead of evening but although OK all day by 5pm I had awful diarrhoea and nausea evening and bad night nausea. I cant get earlier appointment with consultant so still July and problem is my GP does not discuss methotrexate problems as he said I am under a consultant. One other thing is there any foods that people avoid only I have never had a problem with food. Sorry another long one but if I can I will speak with either GP of RA nurse on Tuesday but any suggestions from this group would be really appreciated. Hope you all have a good weekend and that the aether improves.