Methotrexate

Buzz10

Hi All

I've been on Methotrexate (after a lot of fighting for it) Since July. 15mg weekly. I asked for it to be upped and after some back and forth the nurse has just rang today and said that they will up it to 20mg, however, it only works for inflamation and it's not a pain killer so this will pretty much be the best it can do. I also take sulfsalazine, and whilst it has improved since July, i don't want this to just be it.

Does anyone else have and experience with this?

thanks!

stickywicket

Hi @Buzz . I'm not quite sure what you're looking for when you say you don't just want this to be it.

I'm wondering why you had to fight for meth. (Many fight against it!) It's a normal first DMARD.

Why did they not want to give it to you? And why the reluctance to up the dose? What were your regular blood tests showing?

It seems to me they were in erroŕ to NOT give it if you have an inflammatory arthritis and in error TO give it if you haven't.

It's true that the function of DMARDS is to slow down the progress of the disease not to kill pain though, to some extent they do. If it's pain relief you want you can ask your GP for painkillers (though they don't😆) and/or -maybe - a tough one this - reduce your workload. We all have to.

Buzz10

https://community.versusarthritis.org/discussion/comment/715222#Comment_715222

Hi @stickywicket

So i went to a consultant in April, and he was supportive in the appt and sent me for a MRI, but actually did it on my spine, not my knee that was the biggest issue at the time (it has since spread further) and at the time there was nothing on my spine, they said there wasn't anything they could do. By this point i could barely walk so i made a complaint and got to see a different consultant. I wasn't really fighting for methotrexate, as i didn't know it existed, but it was more i was fighting for something that would help / work.

My new consultant prescribed it, and i do think there was some inflammation as it does seem to of settled down somewhat. My GP has prescribed me with codiene but it doesn't really touch any of the sides, so i haven't been taking it as much.

Blood wise (which is hard as they struggle to get it from me, and my last blood test they didn't have enough to test) one of the times my liver toxicity (?) was up, but that is back to normal now.

Maybe i just need to accept there will always be some sort of pain, and just take the fact that i've had it in remission for quite a long time, and just took it for granted.

Appreciate your reply :)

MrDJ

Hi @Buzz10

ive been on 20mg mtx for 23 years. and also anti tnf infusion for 22 years.

back before i started on the infusion i was on crutches for 13 years and my main two bloods ESR & CRP were very active as far as i can remember 96 and 122 and at the time they should be below 10-20.

after first infusion i walked out 3 hours later without crutches and my bloods showd as 7 & 10. as i work at the hospital i didnt believe it and nor did the docs. i ripped up the result and asked for another blood test and same outcome.

saying that this hasnt been a miracle cure as the damage has already been done. ankle tripple fusion, total hip repacement (now on 26 years) and blind in one eye all thank to arthur. still in pain but manageable.

before i started i was on 6 sulfasalazine for the previous 15 years but when i started the mtx they said i cant have both high doses so dropped the sulfa down to 2 a day.

which codein based drug did they give you as i believe there is a few. im on df118 dehydrocodein. they said 2 twice a day but i have stuck to one early evening only. as this causes serious blockages ive also got morphine sulfate to change too which doesnt seem to block me up as much.

also have they put you on folic acid which needs to be taken when on mtx but not on the day of taking mtx.

the only other thing im on for pain/inflamation is Froben 100mg (flurbiprofen) twice a day which is an anti inflamotary and seems to be the only one that has ever worked for me. think ive tried all the cox2 and dmards back in the mid 80's so i guess there will be plenty of new drugs out there now.

(NSAID's- Non-Selective COX 1&2 Inhibitors (propionic acid) Froben 100mg Tablet is used for the treatment of moderate to severe pain. It effectively alleviates pain and inflammation in conditions like rheumatoid arthritis, ankylosing spondylitis, osteoarthritis, and gout. It also helps in relieving muscle pain, joint pain, menstrual pain, and toothache.)

The hardest part for all of us has been finding what works for you as everyone is different and sadly for me this took a good many years before they could work out what works for me.

good luck and hope the new meds help. mtx can take around 3 months before you see or feel any effects.

jamieA

Hi @Buzz10

I don't know which type of inflammatory arthritis you have. I was diagnosed with psoriatic arthritis in late 2020 and put on 3gms Sulfasalazine and Naproxen NSAID daily. 15mgs MTX was added less than 4 months later - upped to 20mg a month later. Neither worked and after a robust meeting with my rheumatologist I was referred to a Pain Clinic consultant. A couple of months later I was prescribed the biosimilar Amgevita which was added to the sulfasalazine and MTX. Until my condition stabilised with the Sulfasalazine/MTX/Amgevita synergistic mix the pain consultant prescribed 30/500 Co-codemol, then high strength Co-dydramol, then DF118 Di-hydracodeine and finally morphine and Oramorph. I fully agree with @MrDJ on the downsides of these painkillers - I ended up on almost industrial strength laxatives.

I similarly was given an MRI scan on my lower back although that wasn't a source of my pain. I later found out that it was to check the state of my sacroiliac joints as it's known that PsA affects these joints and is an indicator of PsA. Sure enough my right SI joint is affected.

In my first year I realised that I needed to fight my corner regarding my health and that not all health staff I was dealing with were being proactive in getting the best outcome for me.

I hope you get stabilised soon.

MrDJ

good shout @jamieA

i forgot to mention the SIJ

i didnt have an mri back in the late 80's but for me they done a HLAB27 blood test which came back positive. that diagnosed ankylosing spondilitus to add to my OA & RA.

from the first plain xray which were clear withing 3 months the pain got so bad they done another xray and my SI joints had totally fused which was once again a first for all the top consultants i had seen before. and another first was it then burnt itself out and didnt continue up my whole spine so im guessing thats why they now do a mri scan on the lower spine.

Buzz10

I have rheumatoid arthritis @jamieA . @MrDJ i was originally on 4 Sulfa a day, and then as i was in 'remission' for a long period i came down to 2 a day and it settled for about a year and a half, then went up to 6, and they said the same about taking them with MTX, however, around 6 weeks ago they told me to go back up to 6 sulfa as well as MTX. MTX getting increased to 20mg and they haven't said i need to stop taking them. I have been told to not take any ibruprofen or naproxen etc. And i take the folic acid one day a week too.

Thanks for the response from you both, i think it is just frustrating as in my head it was going to be fixed, and that is very much not the case. But i really need to just get back into a fighting mode and continue to contact them. I may try and see if i can get referred to a pain clinic though. I have to travel alot with work and it doesn't help so really need to get on top of it.

thank you both and hope you're well and the weather doesn't affect it too much :)