methotrexate problems: hi everyone i hope you are all... - NRAS

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methotrexate problems

oliviagodfreyxx
oliviagodfreyxx

hi everyone i hope you are all keeping well. i have a telephone appointment with my rheumy next week and wondered if this was something i could mention.

i have been on methotrexate injections (25mg) for about 5/6 months, i also take hydroxychloroquine and folic acid along with it. i have no issues regarding sickness etc when having the injections unlike i did with the tablet form however i’m STILL in pain and having flare ups. is this normal? will i always be in pain? or do i need to up the dosage or try a new medication?

i know there is an unlikely possibility that i’ll ever be pain free but my knees and arms are still weak, my fingers and knuckles still swell up etc. i have tried EVERYTHING, ice packs, heat pads, i even invested in a pregnancy pillow and electric blanket, i take strong painkillers like cocodamol when it comes to the point where i cant bare the pain no more. i’m starting to think that it’s maybe the methotrexate that isn’t helping me?

this is really annoying as if it is the case i’ll have to start over with a complete new medication. i’m also upset as i had just been able to start having my bloods taken by the GP rather than going all the way to the hospital (before coronavirus) and if i up my dosage on MTX my bloods will be monitored more frequently again. i’m willing to try anything at this point but i’m just confused as to what’s causing the flare ups and pain. i’ve made adjustments to my diet, i exercise daily and get plenty of sleep. any advice would be much appreciated :)

21 Replies
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I think you’ve answered your own question!

Time to discuss change of meds with your rheumy. I started on MTX, then hydroxy added, but it wasn’t until added in sulphasalazine as well that the disease was brought under control. And stayed by and large in remission for 8 years.

25mg is pretty much the top dose of MTX, so more likely to propose adding in sulpha which doesn’t need extra blood monitoring. Or swap MTX for Leflunomide. At the moment with screening checks needed biologics may not be on the table.

thankyou :) i just needed that extra reassurance!! i thought 25mg was the top dose also, hopefully they can sort something out for me next week :)

That's interesting. I'm wondering if the nurse was jumping the gun by mentioning biologics and whether the consultant will suggest adding or swapping to a different Dmard.

I went up to 25mg Metoject 3 weeks ago after a phone consultation with a rheumy nurse and she said that if things didn't improve my consultant would probably consider biologics. The following week I had a consultant appointment come through for August (about 11 weeks after the dose increase) so I presume that we'll discuss it then. I'm certainly not in as much pain as you (only taking occasional paracetamol and ibuprofen) but am eager for things to be better. I've just gone back to fortnightly blood tests but it's a small price to pay for progress. In my area the GPS never take on shared care for Metoject anyway so I'm already resigned to going to the hospital.

i hope you get something sorted also! and definitely, i suppose bloods aren’t too bad if it eases the pain in the long run :)

I was on MTX for 3 years doing ok. Things started to get at lot worse. Added hydroxychloroquine and sulfasalazine but these drugs were not for me and things were still bad. I personally had a diary and noted which joints were swollen and tender to touch and which joints were stiff and had mobility problems: I’m now on a biologic (6 months)?along with MTX and things are much improved . Still gave problems with Achilles but hoping this will be sorted and I will be happy. I know I will still have flares as I have now due to the weather.

Sorry taking along time getting to the point but I would be proactive mention everything ultimately i would aim to be pain free and living comfortably with the odd blip. You know yourself things are not right always mention everything no matter how trivial you think it is. I learnt this the hard way. Hope things improve for you

thankyou very much! i have an app called versus arthritis that lets you log your pain and sleep and mood etc it’s very helpful! i hope things improve for you also!

I am in a similar position, I am on metoject 22.5 and sulfasalazine ( I also have ulcerative colitis), and am still in pain and having regular flares. I rang my rheumatologist on Monday and have an emergency appointment next week with a view to adding a biologic as well.

i hope your appointment goes as well as it can be, hopefully you’ll find something that works better for you x

I think after 5/6 months on mxt and not feeling any benefit, you need to discuss alternative treatment with your Rheumatologist. I hope you get an appointment soon, if only on the phone. x

thankyou very much x

I know exactly what you mean and I really feel for you. I'm in the same situation - not so much flares but ankles not responding to maximum 25mg MTX and raised liver readings. So at my appointment in August i may need to change meds and I'm dreading going back to square one. I hope you can get sorted soon and feel better.

thankyou, i hope you can also. fingers crossed going back to square one will be beneficial for you in the long run x

Hi , I’m so sorry that you are in pain . I am taking the same medication as you are for 4 years now and not having so much problem. I had flare up just twice in four years. I had change my diet with very minimal sugar and lessen my carbs. But if ever I start having pain , I use my infrared light which helps in circulating blood and helps reduce pain. Hope you will feel better soon and experience pain free. Take care

thankyou very much :) x

It took a few years for flare ups and every few months feeling like I had bad flu. Also skin rashes and mouth ulcers changed tooth past and not to bad now. Been on methotrexate about 14 years I take 20 mg and get by on one naproxen in a morning I think you have to persevere it’s a horrible desease until it’s under control hope things work out for you

thankyou x

Definitely tell your rheumatologist you may need something different. Methotrexate helped my RA but the side effects were just not doable for me. I was on tablets then injections

I was on Sulphasalazine 17 years, still some flare ups and pain but in general I was able to still go to work. When this stopped working, I was put on methotrexate upto 25mg. It didn't touch the rhumatoid. I then went onto 10mg methotrexate and Humira(adalimumab). I'm still on these 9 years later and painfree. Hope you find something that works for you. X

thankyou very much i hope so too x

Hi oliviaG,

I can only advise from personal experience as we are all individuals. First of all stay on the mtx and ask your rheumatologist to be considered for biological injections alongside your mtx (25mg probably the highest), I take injections on aMonday the other on Wednesday. Hydroxychloroquine did nothing for me and remember do not take folic acid the day you administer your mtx. Regarding painkillers, ask for tramadol for breakthrough pain and perhaps a anti-inflammatory such as diclofenac or equivalent alongside. I was diagnosed 8 years ago and am doing okay although I have my moments.

In addition, you can request a kenalog injection every 3 months, it’s a steroid and works a treat for pain relief and better mobility, my advice would be straight into the joint that causes most pain rather than the backside which is not as effective in my opinion. No harm in asking. Co-codamol did not make a dent to my pain and I believe tramadol will help, either slow release capsules or 50mg x 2. You may feel a little woozy at the beginning, I only take 2 in the morning now after taking 8 per day.

I hope this helps and you can only have the conversation with your rheumatologist.

Good luck and I’ve got a feeling you’ll get sorted.

Stay safe and well.

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