Pred and MTX what to do next my Dilemma

[Gaz227]

Just after other’s thoughts and opinions , I stopped MTX 7 weeks ago to undergo dental surgery and then a fortnight after that prostate surgery , I was supposed to start taking the MTX 10mg meta jet the week after the prostate surgery but as I was still on oral morphine , 8 x paracetamol and my daily 4 Mg pred I decided to hold off till I was off the pain killers. I’ve been clear of the pain killers for 2 weeks now and still haven’t taken the MTX which I normally take on a Thursday evening as it is the best time for me with a busy life .

Prior to the urology op it was the first time I had ever got my Rheumy to put in writing that I have RA as well as PMR and Sapho syndrome it was in a correspondent letter to urology.

I’ve had ache joints and general fatigue , so I increased pred to 5mg which I was told a while back I am ok to do if I feel it’s needed , question is would you go back on the MTX given the potential RA diagnosis , I haven’t got an appointment in the pipeline with rheumatology, I had my bloods taken 2 weeks after the prostate op by rheumatology, and as I haven’t heard anything I’m assuming they are fine , got no other appointments in the pipeline or bloods booked . I’m just concerned I could cause a major RA or Sapho flare , it usually attacks my lower back which is already sore then ribs , sternum, ankles and knees in that order , takes weeks to calm down and get under control once it starts . Really scratching my head with this one as I’m desperate to stop taking this potentially toxic drug (MTX) . But then my mind says quality of life is more important . I know it’s down to me at the end of the day just venting my frustration, any advice or thoughts would be most welcome . 👍🙏

[DorsetLady PMRGCAuk volunteer]

Hi,

Afraid not going to be much help, but my understanding is MTX is usually the normal drug for RA [and one of the many used for Sapho having looked it up] - some start on Pred initially for RA - but then add in MTX.

As I have no experience of MTX nor RA nor Sapho, until those with knowledge come along would say this is something you need to discuss with you medical team, and weigh up the pros and cons...although I realise that may be easier said than done..🤦‍♀️

[Gaz227 in reply to DorsetLady]

Yes your right there , contacting them now is harder than ever , they have closed the telephone helpline in Sandwell where I live , I got a secretary’s e-mail address and tend to use her for any correspondents , but that usually take 7 days for her to reply just to tell me she has forwarded the e-mail . It’s a dangerous drug to be self medicating with , I have self medicated pred for over 7 years but MTX is a different ball game, thanks for the reply 👍🙏

[DorsetLady PMRGCAuk volunteer in reply to Gaz227]

Yes it is, but at least you do have a contact email....more than may have.

[Gaz227 in reply to DorsetLady]

Very true 👍🙏

[PMRpro Ambassador]

Potentially toxic it may be - but if it IS RA that can cause a lot more damage without one or other of the DMARDs (the first line drugs they use for RA), MTX is the first line DMARD.

You aren't really self-medicating with MTX as only a consultant can approve its use and a doctor must monitor you to be sure it isn't being toxic for you, that't what the blood tests are for.

[Gaz227 in reply to PMRpro]

I called the hospital switchboard this afternoon and expressed my concerns especially as my own rheumy has took early retirement so theoretically I don’t have one at the moment as I’m on no one’s list of patients , it took me over 2 hours of being passed from one extension to another and being put on hold , I finally got to speak to a Rheumy nurse who could access my records , she couldn’t emphasise enough how important it was for me to continue with the MTX after delving into my notes and blood results . She also said I was long over due a face to face with a rheumatologist and promised me she was on the case and I would hear from them next week , it felt like a real breath of fresh air speaking to someone that came across really concerned with my current position . So for now I’m going back on MTX , and waiting for the letter in the post, good result for now , thanks for the reply’s , anything unusual happens that might help others in pursuit of answers i will report back. 👍

[PMRpro Ambassador in reply to Gaz227]

It is very poor that someone on MTX hasn't been properly monitored - I suspect it links to Covid when they reduced the regularity of blood tests for monitoring - probably by someone who didn't appreciate the risks that it engendered.

Hopefully you are back on the map now.

[Gaz227 in reply to PMRpro]

Fingers crossed 👍