Methotrexate

Hi everyone just introducing myself, I was diagnosed with RA at the end of December so quite recently. I have found this site very useful and it is good knowing there are others who understand what I'm going through. I've been on Methotrexate since the first week in January and increasing by 2.5ml every fortnight. I was experiencing extreme tiredness, no energy etc plus being or feeling sick every single day. I saw my rheumatologist almost two weeks ago and I'm now being changed to injection. I have not taken the methotrexate for the two Saturday's (my day for taking it) since speaking to the rheumatologist and the difference in my energy levels has increased immensely! I also got a steroid injection at my appointment. I'm wondering if this sudden increase in energy and almost feeling normal again is down to not having the methotrexate or because I've had the steroid injection. Thanks for listening x

21 Replies

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  • Welcome.xxxx

  • Thank you x

  • Hiya WiltonT & welcome. I'm afraid it's more likely to be the steroid injection. Often the term steroid holiday is used & just like a holiday steroid injections come to an end so enjoy it while you can!

    Was there a particular reason you didn't inject for a fortnight? I only ask because whilst the steroid will was inflammation & in turn pain it won't do anything for the disease, that's the MTX's job. The longer the time between your last dose the more the chance of risking a flare. Your energy level may not be just due to the MTX but disease activity as well so missing doses isn't recommended unless your Rheumy's recommended you do so. You're nearing the time you'll notice a difference in the MTX working so I do hope things improve for you really soon.

    You don't say how often youlve been advised to take folic acid, that can make a big difference to any side effects, your nausea & sickness particularly. I take it 6 days, just not the day I inject & my side effects are far more manageable. Do ask your Rheumy if he thinks you'd benefit from an increase if you're not taking max dose.

    I hope you enjoy being here & hope to see more of you now you've introduced yourself. :)

  • Hi nomoreheels, thanks for replying. I take folic acid once per week and was prescribed cyclizine for sickness but they didn't help much. The rheumatologist said I wasn't to take methotrexate yesterday because he will be showing me how to inject on Tuesday...also said if I really wasn't feeling up to it just to miss last weeks too because I had the steroid injection. Can I ask how often these can be given? I had a steroid injection on 30th December and really felt as though I needed another after 6 weeks. X

  • Oh that's fine then. It is just we do hear some times that Rheumy's don't always take the time to fully explain how important it is to take our meds as prescribed. That is good you're starting injections, many people, including me, do better on them, side effects are often less too. See how you get on & I hope it solves the nausea but if still persists do ask if your folic acid could be increased by a few extra days. MTX is a folate antagonist, it's not specific what but chooses to modify so depletes the little folate our body stores. You could also try increasing your intake of folate rich foods, spinach, broccoli, most beans, lentils, avocado, mango, oranges &, if you like it, liver (it's one thing I just can't eat!)

    I'm not the best person to ask about steroid injections as I've no real experience. I'm on a low dose maintenance oral steroid & only had the one localised injection for trigger finger but I believe 3 to 4 annually is spoken of here. I guess much depends on your Rheumy's preference, how well (or not) you're controlled by your other meds DMARDs, NSAIDs etc & you of course! You may find this link about steroids from ARUK helpful arthritisresearchuk.org/art...

  • Hello WiltonT, I was on Mtx tablets some years ago and found they used to make me nauseous and headachy. I didn't try the injections as they weren't offered to me but it makes sense that your energy is possibly down to the steroid injection dumbing down your pain. Also the tablets making you feel sickly does zap your energy as well as pain.

    I hope you get on better with the injections than you did with the tablets. x

  • Thanks LindaLegs x

  • I swapped from MTX tablets to injections and found them much better. I've been on them for years now with no problems. So hopefully you'll find the same.

    As for steroid injections my rheumy has a rule of thumb that the maximum she'll give is three a year. When I was first diagnosed I had those three in the first 6 months! Luckily after that the meds had kicked in so I could manage just with pain killers and anti-inflammatories.

  • Hi ans welcome and a big hello to everyone on this very helpful site. I'm emailing on behalf of my mum who was diagnosed in October last year with Sero positive RA at the age of 83. She had never really been unwell before so the sudden aggressive initial flare left us both shocked. I'm a nurse but don't know much about RA and it broke my heart one day when I had to leave her in a chair to go to work. She was still in the same chair unable to move that day. We got our act together and our GP was great and referred us into an early arthritis clinic where the Consultant started mum on steroids and did some tests. Prior to this a number of other GPs had diagnosed cellulitis, virus etc and that went back to last summer where mum just woke up with swollen lower legs and ankles but we got a definitive diagnosis in the end. Mum started on methotrexate and prednisolone also and over the last few months the methotrexate has been increased ( thankfully no real side effects as yet though yes, very tired but bloods ok so far). The hospital has tried to reduce prednisolone but it seems as if we get down to 5mg and the pain and swelling starts though thankfully legs and ankles ok now and usually pain only in one wrist predominantly. We are hoping to get off the prednisolone if we can.

    Does anyone else know an older person living with RA on these medicines?

    Want to wish everyone on this site much love and luck as this is a rotten disease. It's good we can all share.

    God Bless.

    Paula,

  • Paula, it will be helpful if you start your own thread, it'll be more prominent & I'm sure you'll receive replies. Just copy your text, press the green "Write a post" to the right of the screen & it will take you to a template where you can add a title & paste your text. Select "Question" & select a topic from the drop down box a either leave it as everyone or community if you wish for only members here to read your post. Press submit & you're done. :)

  • Ah thanks so much x

  • No probs. I'll look out for it & I hope you have lots of replies.

  • Hi Paula

    Good advice from Nomoreheels.

    Have you started your own thread? I want to hear how your poor Mum is getting on.

    A big welcome to you and very best wishes for her receiving good treatment and relief soon.

    Mx

  • Thanks so much and yes, I have now. Learning my way!

  • Hi Wilton, I recognize it fully, I am on metoject pen/injections as well. Also I am on Sulfasalazine and prednisolone.

    Sometimes I doesn't take it for a week because the mtx make me sick for two days a week. As soon as I get a steriod injection I feel much better.

    Unfortunately I am on steriods for more than 12 years. I have developed , osteoporosis and have recently spontaneous broken ribs (3) and 5 collapsed vertebrae. Now I am on Prolia/denosumab injections every 6 months. This drug makes me sick too. So be carefull with steriods, by using it over a long period of time you can develop osteoporosis.

    Wish you all the best.

    Bas

    Sorry for my poor English , I am Dutch.

  • Hi Wilton

    Hello and welcome to the site.

    Unfortunately steroid injections don't work for me but it does sound as if you are experiencing a big boost from the one you received.

    I think it would be premature to put this down to ceasing your Mthx in the last couple of weeks.

    I wish you good luck with the injections.

    My rheumatologist on Friday wanted to add Mthx back into my mix of Enbrel and Hydroxychloroquine but I reminded him how my liver had gone haywire so I was glad he didn't try and put me back on it.

    It's easy to see Mthx as a difficult drug to take but so many people do really really well on it with little side effects.

    Give it a chance is my advice, you will be monitored closely with blood tests.

    Like someone said earlier the lack of energy and feeling of general unwellness can be active RA.

    Best wishes to you and looking forward to hearing how you get on.

    Mx

  • I have been off mtx since August last year as sanctioned by my Rheumy and my health, energy and mood have returned to normal (how I felt before diagnosis and drug treatment). The drugs lowered my red blood cells and haemoglobin (carries oxygen to body cells) so I ended up with anaemia. However, my GP said it was caused by RA and he called it anaemia of chronic disease, however, my red cells and blood results have now all returned to normal and I am not anaemic. I had also developed severe acid reflux which eventually caused my oesophagus to severely spasm (mimics signs + symptoms of a heart attack) and I spent 2 nights in the cardiac unit a year ago. I had similar problems with Sulphasalazine and ended up with a skin lesion on my eyelid that looked liked basal cell carcinoma, it cleared up within a month of stopping Sulphasalazine.

    The Rheumy eventually acknowledged that the drugs were doing me more harm than good and I have now tried 3 DMARDs. I am lucky in that I have mild RA despite being RF positive and it is palindrome in nature (moves about and not always symmetrical). I only have one permanent swollen finger joint and ankles swell from time to time, otherwise it is just a roving joint pain. My Highest DAS score has been 2.69 so I would never be eligible for biologics. I saw Rheumy in February and he has left it up to me whether I start leflunomide. I am worried about the meds making me so seriously ill and I feel I have adapted and can manage the roving joint pain, my friends and work colleagues have also said that I have been so well physically and mentally since being off all the drugs.

    Develop your relationship with your Rheumy team and discuss your health concerns and don't be frightened to say that you think your current health problems are drug induced/ related. I do not have the erosive type RA so my Rheumy is OK for me to not be on meds and I only have 2 more DMARDS that I can try before I run out of options. So I am going drug free and opting for quality of life.

  • Hi ..welcome Wilton t..just new methotrexate myself it makes me sick, being sick and feeling sick no energy and could sleep the clock round ..it's probably your steroids injection that's giving u the energy ...sat pasted is my 2nd course ..can find my mouth tongue breaking out ..has anyone any advice to what to take ..thanks Lisa

  • Hi Lisamcdermott...I got tablets from my GP for sickness and they only worked sometimes....that's why I'm getting the injection now! I just couldn't tolerate any more than 10mg of methotrexate and I need to be on a higher dose. Your symptoms are exactly the same as what I've been experiencing. It's horrendous...I work in childcare and have to be pretty active. I just live in hope that the exhaustion gets better when my body becomes used to the methotrexate. I don't suffer with any mouth ulcers etc so not sure about that. Thanks for replying xx

  • In my experience its the Steriod injection made me feel 25 again (Im 65). Ha ha

  • Thanks...I'm dreading the exhaustion already x

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