Methotrexate and getting regular infections

[JoWa]

Hi everyone, just wanting to see if anyone has had a similar experience on MTX to me.

For context, I started Sulfasalazine and Hydroxychloquine in April 2019 when I was diagnosed with RA, then started MTX in October last year. Since starting the MTX I have had two major infections that meant I have had to stop taking the MTX for quite a few weeks until the infections have healed or are in the process of healing.

First infection was tonsillitis then quinsy over Christmas and New Year. Had antibiotics and stopped the MTX for 3 weeks so it was around 4 week in total for the infection to go and feel human again (I have had tonsillitis more times than I can count in my lifetime, and quinsy once before - but pre-RA).

Second infection started this week, so not long after the tonsillitis; I now have an abscess on my leg which has developed into cellulitis (which I have had 3x previously over a period of 10 years, but before the RA diagnosis). Stopped the MTX. Seeing GP in a few hours, as it will likely need antibiotics and probably need to be lanced.

I have always been prone to infections when I get run down, but the fact that I've had two quite big ones over a period of 6-ish weeks might mean MTX is just not for me, as taking it means my immune system can't shake off infections as quickly as I used to.

When I saw the Consultant last month, he suggested I go over to injections and up the dose to 20mg weekly. But I am worried that although this may help the RA, if I am getting regular infections that mean I have to stop the MTX then is it worth it, as it won't be helping the RA when I have to stop it?!

Just a bit fed up. I want the MTX to work, but the infections i'm getting are flooring me, and it is a vicious circle:

- take the MTX to help the RA - get infection because the MTX suppresses immune system - temporarily stop the MTX so body can fight off infection & RA gets worse - start the MTX again to help the RA ..... and repeat!

Has anyone else experienced similar? I am seeing the RA nurses team in 2 weeks so I at least have an appointment coming up soon to discuss.

Thanks, all.

Jo x

[wishbone]

I'd worry about upping the methotrexate too!...time for another talk with your consultant I do think. Hydroxy and sulfa have less effect on the immune system than methotrexate and other meds, especially anti-tnf and biologics. Are you still taking those two with the methotrexate?

[JoWa in reply to wishbone]

Hi wishbone, yes I am still taking Sulfa and Hydroxy; the MTX was added as it was thought the other two weren't enough on their own. I guess it's all part and parcel of working out the best combination for an individual, which takes time. Will definitely be having a discussion about whether MTX is perhaps not right for me at my next appt. Thank you.

[wishbone in reply to JoWa]

I'm also prone to infections and know only too well what it's like to be in that particular vicious circle! It was a matter of finding a med most suited to me, which was not easy as I'm an akward devil with other health problems to take account of. Do you feel that sulfa and hydroxy were not doing enough for you or was it your consultant?

[JoWa in reply to wishbone]

It was both tbh; I felt my RA wasn't being controlled and the bloods showed the same. Also have other health issues, so some meds are out if they can interact with the others I am on. Did you try alternatives to MTX? I'm wondering if Biologics are the next option to try, but that will be for the Consultant to decide on I guess.

[wishbone in reply to JoWa]

I'm taking a low dose of baricitinib, which is one of a fairly new class of drug called JAK Inhibitors. Similar to, but not the same as biologics, or so I understand. The main reason I was put on baricitinib is that it leaves the body very fast, within a couple of days apparently, should I need to stop it because of an infection. I'm doing ok on it so far with just one sinus infection in the approx 18months I've been on it. Before the baricitinib I was on hydroxy and remained infection free for the 2 years I was taking it! Trouble was, because it's a relatively mild med it was not very effective and those 2 years weren't much fun to put it mildly!

In my experience it's been a bit of a balancing act and though my RA is better controlled and I'm in less pain than when I was on hydroxy, I'm in more pain than when I was taking methotrexate and even more so when on enbrel. I could take a higher dose of baricitinib possibly resulting in less pain from my RA, but I'm not going to push my luck and risk ending up in hospital with a serious infection.

That's a brief history of my problems. Hopefully your consultant can sort something out for you.

Good luck with it JoWa, and do let us know how you get on.

[Knitmare]

I've been on methotrexate for 5 years now and never had any problems with infections.

[2169]

Hi Jo, sorry you're suffering so bad, yes when I was on MTX I kept getting UTI's in the end the doctor put me on a low grade antibiotic permanently and that helped a lot, trimepothin it was and I took one a day until I came off MTX. Only problem since I am now immune to trimepothin. I hope you can get some relief soon.

All the best

Lydia

[Shalf in reply to 2169]

That's interesting Lydia. I have been getting recurrent UTI's for a long while now. Was on mtx ( pill form) four years ago but stomach couldn't tolerate it. Been on injections weekly last few months but had UTI's inbetween times without mtx. The gp did mention about possibly going onto a low grade antibiotic permanently. Having a kidney scan done first.

[TheBoys]

Hi..just as an aside on thid, my partner has had two bouts of cellulitis on the sode of the face and shingles plus recurrent boils. The doc prescribed acyclovir tablets and a daily low grade antibiotic after a course of three antibiotic injection..things are improving now.

Could you try a low daily dose antibiotic to see if that helps your system get back on track.

As an added bit, i ve been drinking Kefir daily for last two weeks and have had no issues at all whereas had been troubled with throats, coldsores on and off. In fact have had no MTX side effects at all in last couple of weeks and I feel very positive.

[alwayshome]

Sorry to hear of your frustration. I am glad you will be seeing the doctor soon. This is a conversation you need to have.

I had a hard time with methotrexate. Started with the pills then advanced to injecting once per week. Having blood work monthly to check if liver ok.

It’s was a long battle to figure out what worked for me. Unfortunately no two people are the same.

Stay positive. Stay informed on side effects. Keep active and involved socially. Definitely be open and honest with your doctor. Get your questions answered.

[JoWa]

So sorry I haven't replied to your individual reply posts yet - so 12 hours after I posted my question above I was having emergency surgery to remove the abscess. It all escalated really quickly, but once I was in the Surgical Assessment Unit, they looked at my bloods and said they had to operate immediately. They took the view that my blood results were indicative of the fact that the methotrexate was causing the infection to rage, as my immune system just couldn't fight it. So I had the operation in the early hours of Friday 7th Feb, and was discharged the next day. The district nurse has been coming every day to check the open wound.

So, I am starting to feel human again now - so will go through the replies one by one over the next few days - thank you.

I also saw my lovely RA nurse yesterday and she, having read my notes with regard to the two major infections in a 6-week period, said MTX is not the drug for me, and is now looking at Biologics and anti-TNF treatments. I feel relieved to be honest. I know the kind of drugs we have to take to battle the RA can be harsh on your immune system, but I am happy to try something which the clinicians think is a better fit for me.

Have a good day everyone, thanks for your support x