Treatment advice

[cpr02]

Hi

I wonder if anyone could help ? I was diagnosed in october tried 1 medication which really didn't agree with me and at my last appointment it was agreed we would just wait until the next one to start sulphafalazine .... then coronavirus happened

I've been in a bit of pain ... no where near when I was first diagnosed but enough to need naproxen I was able to go running today but felt sore this afternoon

Gave my gp a call and they confirmed if I do start this medication it will be high risk self isolation don't go outside for 12 weeks ..... I'm currently working as a nurse

What do people think? Is it feasible just to rely on naproxen and hope it passes ??

The alternative means giving up my job and seeing no one !

Thanks! X

[allanah]

Look up nras.org.uk/data/files/COVID19_scoring_guide.pdf.

It shows you the british society of rheumatology guidelines and risk of medications and co comorbidities. The other piece of information is if you flare with your RA it has been said on NRAS webseminars that can increase risk of hospitalization of you catch Corona virus.

Then you need to chat with your line manager .

Obviously we cannot advise you what to do, lots of info on NRAS website .

But thanks for either staying home and not putting yourself at risk or for all you do if you and your line manager decide your risks.

Good luck 🥰

[cpr02]

Hi thanks I wasn't looking for anyone to tell me what to do as such I've made contact with rheumatology just if there was anyone out there who was med free !

I want to be at my work to help and support my colleagues

Thanks for your help and hope your keeping well ❤ will check out that link xx

[helixhelix]

Very much depends on how you are, but if you are starting to go downhill then you may not be helping your colleagues by going to work as you could end up as another patient they don’t need! Apparently having active disease does make you more vulnerable.

Perhaps you could check out the position if you start taking sulpha with your rheumatology team? As none of the guidance says that it has an immune suppressing effect, so I{m a bit surprised by your GPs view.

[cpr02 in reply to helixhelix]

I ma bit confused too ! I have contacted rheumatology though so will do whatever they say! I'm struggling to see why I couldn't remain at work though ! X

[JFlay]

Hi, according to the letter I had yesterday from rheumatology sulfasalazine and hydroxychloroquine (taken alone or in combination) are not included in the list of immunosuppressive medications. On the risk score table they score zero, the advice for a score of one or below is strict social distancing.

I'm just on hydroxychloroquine so I'm strictly social distancing.

Maybe check with your rheumy helpline to put your mind at rest so you can decide what to do. All the best.

[cpr02 in reply to JFlay]

The only problem being I can't social distance at work if I'm providing direct care Xx

[JFlay in reply to cpr02]

Yes. It's a difficult one! Probably best to check with your HR and rheumy what to do 🙄

[charisma]

Hi cpr02

Doing what is best for your own health right now would benefit everyone.

I find that NSAID drugs, like Naproxen, absolutely do not control RA but help with the stiffness that might last till evening.

I’m sure you will speak to Rheumatology if available and take advice from them or discuss the last report from Rheumatology with your GP and take it from there.

Take care of yourself, and good luck!

[cpr02 in reply to charisma]

To be honest the narproxen isn't working very well! Its niggling pain or pain that makes me feel like im scalded but I remember how bad it got last time and don't want to go through that again ! X

[charisma in reply to cpr02]

No, once experienced, instils dread... ! 😃

[Hidden]

Ask the rheumatologist rather than the GP as GPs on the whole have quite sketchy information about RA and have to act under the direction of the rheumatologist. Everything I've read says sulphasalazine is not hugely immunosuppressive, so perhaps the GP was being over-cautious, probably under a lot of stress like everyone else.

Heartfelt thanks for your dedication to your work.

[cpr02 in reply to Hidden]

Thank you 🥰🥰 I don't work in a area that would be seen as high risk .... but I suppose everywhere could be risky just now ! Have contacted rheumatology xx

[oldtimer]

If you are working as a nurse then you cannot self-distance. If you have uncontrolled inflammation you will not be able to work, you would be a liability. If you take sulphasalazine you will reduce the over-activity of your immune system, but it is not likely to suppress your immunity below normal. If you look at the categories given on the rheumatology advice pages, you would not fit into high risk needing to self-isolate. I think the advice given by your GP is over-cautious and doesn't fit with that given by the experts.

[cpr02 in reply to oldtimer]

Hi yeah reading up on it I think it may have been have contacted advice line xx

[StormySeas]

I suppose you could see how you are after just taking Naproxen regularly for a few days.

If you push it too hard without any other drugs drugs and then have a flare it might be the case that Naproxen on its own might not be enough.

I think you'll have an idea of how things are after a few days so you can make up your mind. As others say, SSZ isn't on the list issued by rheumatologists, plus if I remember correctly, I think you start on a low dose and then move up gradually to a higher one.

If you're able, and want to go running, it sounds like the disease isn't progressing fast so I can understand your reluctance to start new meds, but keep an eye on things. I suppose you might be lucky, and not require drugs. Most people on here do need them. There's no hard or fast rule, but be sensible and keep a log of how you feel so you'll be knowledgeable about how the illness is affecting you and how best to deal with it. Good luck and let us know what you decide to do.....

[cpr02 in reply to StormySeas]

Hi thanks I have been in some pain today feeling like I've been scalded or just a dull ache x

[Swimming20]

Hi l had an appt for april 16th to try a new treatment..got a phone call to say appt has been cancelled as consultant doesn't want anyone starting new treatments they gave me appt for september x

[cpr02 in reply to Swimming20]

So if it's ok to ask are you on no medication? X

[Swimming20 in reply to cpr02]

Yes am on salazopyrin and prednisolone ..l have been of Methotrexate for 2 months now x

[Nik8210]

just wanted to say all the best working right now and I hope you come through ok. Although not a nurse I was working during swine flu and am sure it’s far worse this time round.

Also as someone who has to change their job as a result of having RA there are always interesting things around the corner. take care

[cpr02 in reply to Nik8210]

I genuinely love my job I wouldn't want to change it ! Thanks I'm not in a high risk area but its still frightening at times hope your keeping well xx

[Sezzzzz]

First of all I'd like to say thankyou xxxx I have been on naproxen for many years when they put me on methotrexate they took me off naproxen but I found I needed it for my hands so i went back on that as well and it helped. I would personally hold fire on taking anything stronger as it takes a while to work and not guarantee to stop your flare up. You'll be working hard and doing more hrs an what not which wont help my advice would be to take paracetamol as well and get as much rest as possible on your days off stay in bed so that your body can rest and recuperate. You are doing a fantastic job. Thank you sarah xxx