Shall I ask to come off my RA meds?

Following a serious infection in mid 2017, I’ve picked up infections every 6 weeks or so. They’re mainly skin (cellulitis), chest infections and kidney infections. Antibiotics for the kidney infections are 2 weeks long. I’m missing - on average - one humira per month and one or two methotrexate jabs.

Due at rheum soon and considering asking for a complete review as my immune system has obviously taken a battering and I’m getting very ill. My RA is uncontrolled too becuase I’m missing medication. I wonder if I’d be better off with a drug that didn’t do much like hydroxy. At least, it’ll take the edge off the RA and not hammer my immune system into the ground. I dunno, I’m lost!

[farm123]

Do your rheumy team know about your infections - if not it would be worth a call to your nurse helpline to update them and they can start to think how to go forward before your appointment.

[Hidden in reply to farm123]

I left a message. They usually get back to me quickly. I asked on the message if I could maybe see someone earlier. Rheums are very busy but maybe the nurses can see me. They’re usually amazing.

[sylvi]

That is for you to discuss with your rheumy. Tell them about all the infections you have had and what antibioctics you have been given.xxxx

[Hidden in reply to sylvi]

I left a message for the nurses. I feel bad bothering the rheum as I know they’re so busy and the nurses usually contact rheum directly if they don’t know or need more advice.

[sylvi in reply to Hidden]

Don't worry about bothering them that is why they are there to support and help you. Don't come off them without seeing a rheumy nurse or dr.xxxx

[helixhelix]

That sounds like an entirely reasonable thing to raise. They need to find ou a better balance for you.

[Hidden in reply to helixhelix]

Thanks. I was unsure. I don’t want them to think I’m asking for something specific but equally, I don’t think I’ve fully explained the impact these infections are having on my quality of life.

[Jesnaskah]

It's so frustrating!!! I know, I know. So maybe it's time you take charge. You want to try a less intense DMARD and stop biologic for a moment... Go for it! Ask your doc to give you the green light. Push for it, in fact. I am a big advocate for us sufferers making OUR decisions. We can hear out all the medical advice and recommendations our docs give us... But ultimately, it needs to be our choice as to what direction we want to take. Unfortunately, our disease doesn't give us too many variable options, and almost every rheumy does the same thing. It's a pattern. I've read so many posts where a doc won't "allow" a poor RA sufferer to try something else... That's not fair! I hope you get some relief asap no matter what you choose.

Best wishes!

[Hidden in reply to Jesnaskah]

I always feel a bit awkward asking for things. They’re the expert, after all. My rheum clinic are patient centred and I know they’ll listen to me but I need to find the courage to speak up.

[juneann]

Morning Discombo, Like jesnaskah I question everything to the point of interrogation. I suspect my consultant appreciates input from the other side, they're constantly learning. However much you feel the urge to stop drugs I would urge you to do nothing without guidance. Even if they are being mildly effective this may be lost altogether once completely stopped and the body may not accept them at a later date. I was watching one of the 70 year NHS documentaries last night and it really made me realise how a lot of us may not be here without these drugs. I think I remember the excruciating intense pain in the early days fourteen years ago and by year four I felt like giving up as I was at the point of not walking, through stiffness and pain none sufferers could never imagine. Childbirth is painful but with the right drugs it puts your mind in another place, RA drugs don't. Speak to your consultant and push push push, I'm sure you will turn a corner. Take care.

[Hidden in reply to juneann]

I’ll have a glass of wine if I need to get to my other place, hehe! Thanks x

[wishbone]

I agree with much of what Jesnaskah and juneann have to say. I also suffered with recurring infections (UTIs), one of which became very serious requiring a 10 day stay in hospital. Because of the risk of another serious infection, and with the exception of hydroxy, I stopped taking all RA meds some two years ago. The positive outcome being that I've not had a single symptomatic UTI during that time. On a less positive note my RA has got a lot worse and I've recently had to start back on meds again. Just hoping that the UTIs don't kick off again. If they do then I have to stop the new med and go straight to hospital for the appropriate IVAs as my UTI bug has become antibiotic resistant. That's the plan anyway!

Even if I wasn't antibiotic resistant I would still stop taking RA meds at the first signs of infection, at least temporarily, and inform my rheumy about doing so. Obviously I'm a very different case to you so I wouldn't for a minute suggest you doing likewise, but think it would be wise of you to discuss the idea with your rheumy as they can be a bit too focused on RA to the detriment of other conditions.

Good luck to you.

[Linda-D]

I've been on Remicade for several years as well as on Methotrexate. I've done well with the exception of a few infections. You may ask your doctor about seeing a pain mgmt specialist to help get your pain under control. Not every medication works for everyone. You may have to try a different med, but don't give up. Help with the pain will make a big difference. Blessings.

[Hidden in reply to Linda-D]

Thanks. My pain is manageable, I think, but my CRP is high, my joints are stiff and swollen and I’m so fatigued. That’s my main issue.

[Hessie5]

I can relate as this was something I was considering. But then the days when I was in excruciating pain enveloped me. I would as mentioned speak to your consultant. I negotiated with mine only today with my new medication that I shall cut the dose down but not cut off until such time (right now I am on nothing been 2 weeks). As said have that discussion with your consultant. All the best. Hessie