hi, I’ve posted quite a few times now and you are all so supportive..
my last post was about my struggles and side effects with MTX. I’ve recently switched to injection from tablets.
I have been on MTX now for nearly 9 months (6 weeks break) so feel I can make a fair assessment of just how shit it makes me feel. Nauseous, fatigued, v low mood.. albeit probably 2/3 days of the week - so I do get good days!
Clinically it is working - less joint pain, reduced CRP - which I guess is all the matters to my clinical team. But just had another very frustrating call with one of the Nurses..who completely invalidated me, and these side effects. Kept saying ‘well side effects reduce with time’ (been on 9 months??), your CRP is low so that’s good (I’ve never had very high CRP even when i was more swollen and in pain). And she seemed very flippant when i told her I am unable to now work full-time, which as a single mum is hard.. because of medication side effects, and my generally immense fatigue & brain fog. And that the only way I manage atm is to work hugely reduced hours, to rest a lot, to keep stress to a minimum, because obviously that’s easy! She just made me feel like a complete hypochondriac.. I am so frustrated and upset. This is the reaction from a lot of people that don’t appreciate all the facets of this illness… they don’t see that it has changed my life. Or that I have to take this drug which clearly makes me miserable albeit I know sone people get on fine with it. And the only option they have given me is to reduce the dose by 2.5mg and add in Hyrdoxy (I’ve been on both 15mg & 20mg and didn’t notice any difference, so can’t see 2.5mg being a game changer!!
Last few weeks I’ve been very stressed, and the pain goes straight to my body..knees / fingers / wrists mostly..so I know that this disease will progress again if I don’t keep myself well.
Anyway. Thank you for letting me rant! I literally can’t share with family of friends, because they really don’t understand. So fed up.
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Sapphire1701
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I can empathise as methotrexate had the same impact for me. I would suggest emailing your rheumatologist and copying in your GP. Explain to them the impact on your life and ability to function as you would like to as a mum. Worked for me. Sometimes putting things in writing can't be ignored.
I had exactly the same issues with Methotrexate, thankfully I had an understanding rheumatologist. I would go above the nurse and make contact with the rheumatology consultant. I would phone your consultants secretary (number might be on clinical letters or phone main switchboard and ask to be put through to Dr *****’s secretary) and ask for their email address. Send them an email explaining everything you’ve said here and ask the secretary to forward it to the consultant.
Darling that’s rubbish. A rheumy made me cry once insisting I should be OK with metho and that somehow I was at fault for saying I felt awful in it. Maybe phone NRAS helpline for support and guidance? Your body; your choice. Other suggestions in here good too. X
agree pen to paper needed I did emails and it worked as I knew I was in a bad place even with low crp ny body was not in a good place. RA does not just show in bloods it shows in all areas of the body and they should be more considered in their replies 🥰
thank you all..I hadn’t thought about writing.. I really appreciate you all understanding and sharing similar frustrations and the support helps so much. thank you x
Writing usually gets better results than speaking.I was ' encouraged' to stay on MTX for 11 months, feeling absolutely awful all of the time. I had to stop taking it myself and more or less demand to be seen. I was moved to biologics.
Be very firm and direct, but polite. No MTX is not suiting me, I require to be reassed, when can you see me ?
Another question I asked was ' Are you saying that I should stay on a medication that has awful side effects to the extent that I cannot function?'
you are seriously not alone, many of us have been through the same. Eventually I came off Methotrexate and changed to a biological. It has been a game changer, still suffer with major fatigue but no nausea! Please follow everyone’s advise and be your own advocate! Good luck
hi, I have been on methotrexate for 4 years I decided to change to weekly injections and it helped a lot with nausea and cramps. It takes a long time before your body gets used to it. Do you take folic acid?
I completely understand and I could have written those symptoms! I experienced exactly what you are. I had a crying episode with the consultant and she agreed to stop it. I am on a biologic with hyd-quinine and am perfectly fine and dandy! A changed woman!. The drugs we are on for our condition are so powerful and suit people and don't suit people...Good luck with getting something to suit you.
I had this myself, but at around the same time as you I told them I feel I radder jump off a block then take it on the day. I was 5-6 days out of 7 feeling horrible...I said, I need a dose adjustment as it was clear my inflammation markers were stable and had no flare ups for the whole period and they agreed. I actually started with double therapy the Methoiect and Sulfasalazine. I reduced the Sulfasalazine myself and started taking it erratically which made my Dr understand I don't really need it anymore.
They reduced my Methotrexate from 25mg to 15mg.
Been a bit imbalanced right after the change as the body recognised the reduction but made it back in about 2 weeks. Agreed with the doctor to contact them if any concerns and obviously it wasn't needed.
Anyway, in your case, try to exaggerate when describing the symptoms, what shall I say, sometimes is the only solution. But on the other hand, be aware, if you reduce and is not needed, you can easily loose what you have built so far.
However, you know your body better than everybody else!
I fully understand how you are feeling because I felt the same while I was on methotrexate. The day after the injection, I felt like I couldn't breath and I couldn't get out of bed. Likewise, I had to reduce my hours at work which added to the stress.
Is there any chance that you can speak with your consultant or their secretary. If not, write a letter to your consultant. If that is not possible contact PAL:
A rant is good for you and helps the frustration a bit. I am losing faith in my rheumatoid team and sometimes feel they don't really listen. Lots of advice here from others so I'll just add a hug 🫂 and wish you speedy resolution
it makes me so angry when I hear about people suffering on methotrexate when there are other options. I think they want us on it because this medication is cheap. Leflunimide is equally as effective and is also cheap so perhaps ask to try it. In Canada you have to try several DMards before insurance will cover biologics. I hope you can get off the methotrexate soon. For some it is wonderful. It sure wasn’t good for me though.
I am going through a similar situation at the moment. Although initially the methotrexate seemed to be working, I started having stomach pains and feeling unwell, and some of my old pains were coming back rather than getting better. I was already on the lowest injection dose.
Her solution? Normally they would increase the dose if it wasn't working, but as I was having stomach pain she thought that decreasing it would help. Then she got onto Google... searching... searching... eventually says oh, that is the lowest dose they make. Well, yes, I could have told her that. Let me see, how do I know what? Oh yeah, she told me at the last appointment! Then she said she would contact the pharmacy and get back to me.
I agree with the others about writing a letter. You might want to write a couple first then bin them and writing the letter you will send. Sometimes it makes us feel better.
There is an online book of letters that patients had wanted to write to their consultants, in the style of the letters that consultants write to GPs. It is very funny, so if you need to lift your spirits a bit, have a read of this first.
Hello. I am going through something similar at the moment with Rheumy nurse not listening to me. I had been on MTX for quite a long time - 3.5 years, and it's never really settled with me. I started off on tablets, but then switched to injections 6 months later. I have always had issues with side effects, nausea, breathlessness, heartburn & more, even with adding folic acid 6 days and omeprazole. I have never had any effects with hydroxychloroquine or sulphasalazine. I had to come off hydroyxychloroquine as it was affecting something to do with my heart rhythm. A couple of times i have asked to come off MTX but my nurse kept insisting that i try it a bit longer, not listening at all to what i have to say. Eventually i agreed to come down to 10mg to see if it would improve the side affects, but it hasn't. I'm seeing her in a couple of weeks, i'm going to have to put my foot down this time as i can't carry on like this, and what i'm on now isn't enough to keep things under control, so hopefully she will be in a listening mood when i see her next.
Good luck and hopefully things will improve soon. Is it worth trying to get your family and friends to understand. NRAS have a lot of information on their website, maybe they could look at that to try and have a better understanding of what you are going through. Take care.
I put up with the side effects of methotrexate for ages because of the dismissive attitudes of the rheumy team (well, mainly the specialist nurse). Until the dentist looked in my mouth and said that I needed to come off methotrexate as the ulcer would cover all my mouth soon!
I insisted on coming off quoting that the dentist had said that the mouth ulceration was unacceptable and that I thought the rest of my gut was also in the same state with abdominal pain, vomiting and diarrhoea.
They were reluctant as my 'blood tests were good', but agreed to swop me to azathioprine (I had already tried sulphasalazine and hydroxychloroquine - had a prolific allergic rash with both, and leflunomide was contra-indicated because of my erratic blood pressure.) I was much better with this from the point of view of side effects (just nausea and loose motions), although not really 'better' until I became eligible for biologics. Adalumimab has been marvellous for me!
I do hate it when the medical team rely on the results of the blood tests instead of actually listening to what the patient is saying about their condition!
Do go back and ask if there is more that can be done. I have been on methotrexate for 3 months now and my review was being being pushed back for months. Now is really not a good time to need NHS services as they are under such pressure. With encouragement from people here I wrote a brief email outlining my symptoms, quoting NICE guidelines, and sent it to the rheumatology nurse team. I now have an appointment next week at the hospital. Fortunately I also had an appointment with a sympathetic GP, which I think helped. I have found it really helpful to talk to friends and family and they are ready to cut up my food and pull up my trousers as I come out of a toilet. I hope you get what you need.
You can have a low CRP and high pain and you can have a high CRP and low pain. Your nurse should know that.
Oh bless sounds so familiar to my early days , once I was changed to injections I gradually improved symptom wise and side effect wise. Takes a good year to adjust to everything.
My routine now is take anti-sickness tablet. (get rheumy to prescribe ) about 20-30 minutes before doing my injection. Do injection before going to bed, I keep tonic water handy if feel nauseous, even sip in the night if wake up. I also take one co-codamol which knocks me out for the night. Idea is sleep through worse side effects, get some rest to offset some of the fatigue etc.
If you have access talk with your specialist nurse about your symptoms see if your using all you can to minimise.
I'm in remission at present, and while I don't like having to take MTX it's provided me quality of life, dealing with a serious health condition. So hang in you'll get there. 😊
I fully sympathise and identify with your position. I was on mtx for 10 months and it was hellish . I had a nurse threaten to take me off the RA clinic list if I didn’t take the meds ( I’ve now tried 3 dmards and felt overall worse on them than off) Next appointment I had with the consultant, I explained to him that the side effects of these drugs were worse for me than the pain of the RA , but that I needed to know I could contact the clinic if/when things got too bad. He agreed to keep me on the list and I’ve had occupational therapy through the clinic that I found extremely useful . They have to listen to you as everyone’s experience is unique and you must be responsible and respected for your choices …. Good luck and don’t be afraid to speak up for yourself xx
Thank you all for all your responses.. sounds like do many of us have shared experiences. Helps so much. I’ve been told first few years post diagnosis can be the hardest, so appreciate is early days..
but yes yesterday was just so upset with the very dismissive comments from the nurse. And starting to realise it’s all about bloods & scores, regardless of all the other things.
I do see my rheumy team v promptly, so on that i am lucky. Will be seeing consultant in august. But appreciate all your comments and experiences and sone really helpful advice.. and support. Thank you x
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