Swings and roundabouts: That's how things feel for me... - NRAS

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Swings and roundabouts

Eiram50 profile image
17 Replies

That's how things feel for me at the minute!

I developed a really bad cough that hurts my ribs and back and leaves me breathless, even when not coughing so I saw gp on Monday and was given a course of antibiotics and told to stop taking the methotrexate. After speaking to rhuemy, I was told to stop the enbrel too.

This is the 5/6 day of taking antibiotics and my cough seems to be getting worse, instead of better. More than this, my joints ( those that are my own!) are sore and stiff and my hands are so swollen and painful.

Is this because Ive had no biologic and methotrexate for the week? Can things deteriorate, in terms of RA/AS this quickly?

It seems horribly counter productive - to attempt to tackle one thing at the cost of another, so to speak.

Apologies, sore and been wide awake for hours and just ranting I guess .

Wishing you all a pain free Saturday.

Marie

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Eiram50
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17 Replies
Sanbanan profile image
Sanbanan

Hi Marie.

Sorry you are not doing too good.

I've had to come off my biologic medication due to forthcoming knee replacement in 3 weeks time.

I am so stiff and sore...hurt like hell 😢 so there is certainly a connection to increased pain in my opinion when you stop Meds.

I hope your cough clears soon and you can get back on track.

I can't start my new biologic until they know I am clear of infection after surgery so I guess the next few weeks are going to be more of the same for me 😕

Take care

Sandra

Eiram50 profile image
Eiram50 in reply toSanbanan

Sorry to hear that Sandra. A year ago I had both knees replaced, together. Now, the best thing that ever happened. I was able to re start biologics two weeks post surgery. Let's hope it's the same for you.

I genuinely wish you the best of luck and a speedy recovery.

Marie

sylvi profile image
sylvi

I do know you can't take mtx while on antibiotics and the same for biologics,so if your on day five of antibiotics and your feeling worse not better i suggest you contact your dr as you could need a stronger antibiotic darling as i think after five days you should be feeling brighter.xxxxxx

Eiram50 profile image
Eiram50 in reply tosylvi

Thanks Sylvi. I may do that as he prescribed erythromiacin ( prob wrong spelling!) as I'm allergic to penicillin and these are very general antibiotic. I had hoped to feel a bit better by now too.

Had x rays taken yesterday at hospital. Hopefully everything's fine and it's just a bad chest infection.

How are you feeling? You e had a rough trot of things. Hoping that you're feeling a little better.

Marie

sylvi profile image
sylvi in reply toEiram50

I have my infusion on the 19th of this month so hopefully i will start to feel brighter after that. This morning i am out with my Grace as we are getting our nails done.xxxxxx

Eiram50 profile image
Eiram50 in reply tosylvi

Oh, lovely ! Enjoy your day and the very best of luck for the 19th.

Marie

Witness2 profile image
Witness2 in reply tosylvi

I hope the 19th comes around quickly for you Sylvi - nothing as important as nice nails 😃

Witness2 profile image
Witness2

Feel for you Marie. I'm on holiday - in bed, also suffering from a painful chesty cough and headache with a sore throat thrown in for good measure. Hoping I don't need antibiotics but keeping an eye on symptoms. Despite my best efforts using sprays etc to ward off infections on the plane, I was two seats away from a lady who was coughing her lungs up! Hey presto, 3 days later...my poor husband. Just paid 84 Canadian dollars for a room service breakfast so I could take some paracetamol. At least I can watch the snow falling outside my window and there's nothing I 'should' be doing. Except having some fun of course. I feel so angry! But it's just what happens when Biologics clobber my immune system. Never doing this again! So I'll be angry with the lady who travelled while clearly too ill to do so. A moral dilemma - would I have cancelled an expensive flight? Probably yes because I had travel insurance. So Marie, I really hope you feel better soon and I do too!

Eiram50 profile image
Eiram50 in reply toWitness2

Of god, poor you!

I really hope you get better quickly so you can enjoy even a tiny part of your holiday.

Truely feel for you.

Marie

Witness2 profile image
Witness2 in reply toEiram50

Thank you Marie, and you x

8080 profile image
8080

Eiram50! So sorry you are suffering so! My Rheumy said these meds leave us open for infections,right? But I would think the antibiotics would have knocked it out. It sounds serious, tho. Did you tell Rheumy that antibiotics are not working? Just wondering, because I was warned about these symptoms. All the very best. Good luck!

Eiram50 profile image
Eiram50 in reply to8080

Thank you 8080.

I see the doctor on Monday again and I'm hoping that by then, something will have shifted. I think my results from x rays will be there too so I'll soon know if there's anything untoward going on.

Here's hoping all is fine and like you said, because we are so vulnerable to Infection, it's maybe just taking that bit longer to clear up.

Hope things are well for you.

Marie

8080 profile image
8080 in reply toEiram50

Sounds like you have the situation under control, Marie! XO

janmary profile image
janmary

maybe more that your immune system has been put on high alert to fight the infection, and is having a go at your joints as well? The bug that's been round this winter seems to cause a nasty cough that goes on for weeks, but the worst of the fluey bit is about 7-10 days. And thats everyone, not just the immune suppressed. So I hope you feel better soon .

Eiram50 profile image
Eiram50 in reply tojanmary

Oh that's good news, thank you for that . I'll have finished the course of antibiotics Monday and see the doctor then too so I'm hoping I'll be feeling fine by then.

Thanks again

Marie

L-ttie profile image
L-ttie

Hi there Ive had to have anti biotics for a tooth infection so not taking methotrexate for a couple of weeks at leas.At the same time I had one of the biggest flare ups of R A I've ever had so rang the rheumatology nurse who confirmed that many people have flares when there is an infection going on somewhere in their systems. As the infection recedes the RA symptoms improve and this is beginning to happen to me.So like janmary I think it's your immune system that's gone into over drive.

I also asked the rheumy nurse about having the steroid injection I was about to have.She advised not to have the injection while I still had an infection as this increased the risk of triggering infection at the site of the injection. This was new information to me and so glad I had phoned the nurse to check cos my doctor who had booked me in for the injection certainly didnt make that connection.

Thank goodness for the Rheumatology Nurses! If in doubt I always phone mine and feel confident that she will give me the right advice and info.

I don't have this feeling about my doctor unfortunately.

Janmary also mentioned the coughing bug that's affecting so many people and lasting ages.....I've got that too so with that ,a tooth infection and a big flare up things can only get better ! Ever the optimist I expect they will one day.

All the very best to you for better days ahead.

Eiram50 profile image
Eiram50 in reply toL-ttie

I often feel it is never ending. We, every now and then get little spells of not so dark times and lulled into a false sense of security then wham, something comes and blindsides us?!

Still, as always, this too will pass.

Hoping you also begin to feel better soon .

Marie

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