Respiratory Appointment

DebbieT

I'm not sure that this warrants a new post but I wanted to let you all know that I've received the appointment to see the respiratory team. Its 7th August so much quicker than the estimated 14wks Phew.

Regarding my chest at the moment, I saw my GP yesterday & was put on my 5th week of co amoxiclav for this drug resistant chest infection. I've had a total of around 10 days max with no antibiotics since the 1st week of April so it's been very persistent. I'm also back on steroids at 40mg per day for 5days as my asthma is bad. I've been told to continue with the methotrexate at 30mg tho. I take it on a Wednesday so maybe that's why?? I'd already had this weeks & the steroids will be finished by my next dose ... I dunno thats wot my dermatologist wants anyway :?

Many thanks for the masses of advice, info & support coz I think I must be getting off lightly with PsA n OA in the last 6/7yrs since diagnosis. I feel so much for you all ((((group)))) x

stickywicket

Good that you got an earlier appointment, DebbieT. I hope the extended course of antiobios will make a difference.

DebbieT

Thank you, I'm still hopeful it will clear it up x

dreamdaisy

I was always told by my hospital to stop my meth and humira at the first sign of a chest infection so I do. In April I had an URTI so stopped everything for three weeks whilst increasing the inhalers and taking oral steroids. It cleared because I stopped the immuno-suppressants - it's hardly rocket science and I find it incredible that those who don't live with what we live with advise us to keep taking the meds. :roll:

I am not a doc, and am by no means telling you what to do but I think this is a point worth raising with your rheumatology unit. How can you get better when you are continually reducing your in-built germ-fighting unit? I probably should recall if you find the meth of proper benefit :oops: but, even if you do, wouldn't it be worth a break so you can get properly better? DD

salamander

hi Debbie, I agree with DD. In fact, I don't even have to ask anyone now, I just stop the drugs and take the antibiotics under instruction from my chest specialist. I have a supply at home plus extra steroids for when my asthma gets out of control. I wonder if that's why your infection isn't clearing up.

DebbieT

I have had benefit from mtx, yes, tho it isn't helping at the moment :? For the first time since my rheumatology referral in 07 I've got visible swelling to my ankles n knees & as usual my hips, mostly my right, are killing me!!

On a positive note I don't seem to have any pain that is fibromyalgic in origin, odd.Lol

Im not sure if they're keeping me on it coz my liver is fine, my dermatologist hasn't rang to say take me off of it or to see if I'll eventually manage to clear it now they've had me on the correct antibiotics for 4 wks & I've got wk 5 ready to start in the morning ... I honestly couldn't tell you the thought process behind it all. I'm just starting to get more than 2hrs sleep a day/night & I'm still so tired I'm like a zombie so I was too strung out to ask anything ... :? I'll ring on Monday to say I think I need to stop it until I'm clear of infection. I've been kept on weekly bloods btw, could that be y I've been left on it maybe?!

Thanks for responding.x

salamander

It's not about the liver when you've got an infection Debbie. Perhaps they are not clear whether you have a viral or bacterial infection? My rheumy made a distinction between them but as viral infections invariably lead to secondary bacterial ones with me I would stop and my nurse supported that decision. Like you I get bad asthma when I've got a chest infection. Ended up in A&E last time, which is why chest specialist gives me drugs to keep at home.

To be honest, I refused point blank to continue the Mtx after I had a chest infection that lasted 5 weeks and my third lot of antibiotics, it not being the first infection on it. I had similar problems with Cimzia. I have to add neither of them worked very well for me.

I've been much better on Enbrel as the half life is much shorter so gets out of your system quickly.

Hopefully, you will get a clearer picture and advice once you've seen the chest specialist.

DebbieT

It's definitely bacterial coz they had my sputum tested to check if it was TB etc It wasn't but it was drug resistant. I've had amoxicillin, Doxycycline & another one a couple of times each but wen that result came in they put me on co amoxiclav. I was thinking of the liver coz they all hit the panic button wen I had glandular fever a couple of years ago, I had to stop mtx for about 6 months then!!

Would you say I'd be right to stop the mtx without discussing it any further with anyone?

I've never seen a Rheumy nurse I've only seen my consultant but she's left so my app on 9th is with a new one.x

stickywicket

DebbieT wrote:

Would you say I'd be right to stop the mtx without discussing it any further with anyone?

No, don't do that, Debbie, but I'm amazed that stopping the meth while having to take such quantities of antibios has not been advised. The meth works by damping down the immune system. To deal with a bad infection you need a strong immune system. It doesn't make much sense to use increasingly high doses of antibios while keeping the immune system weak. BUT, there may be a reason in your case so don't act without consultation. I think it's something to be discussed with your new consultant though.

DebbieT

Sorry for the delay, I finally fell asleep about 7am n our Grandson has been plastering me in stickers since 9!Lol

Ok, thank you for ure honesty coz I was just gona stop it!! It seems ridiculous to me & hubby too especially after the extreme reaction to the glandular fever by both consultants :? Actually my rheumy wouldn't overrule my dermo then either wen I wanted to restart it earlier than she did. It seems my Dermatologist is leading my care. Maybe my arthritis is ok ... I've got much to ask on the 9th!!!

Thanks again.x

barbara12

Hi Debbie
Sorry I cant offer any help on your meds, but how rotten to have this awful chest infection on top of everything, it is good news that they have got you an early appointment..I will be there for you and hope it a good one...we always say this because you never know with appointments :roll: has you will know...((((())))xx

DebbieT

Awww thank you Barbara. I know ures had a shock in store ... So unexpected :?

Ure support is much appreciated (((( )))) x

salamander

Hi Debbie, sorry, I didn't mean to encourage you to stop it without discussing with your team. I've only ever followed instructions and was told to stop drugs when on antibiotics and did discuss with my rheumy when I quit the Mtx, which he agreed with.

Why don't you ring your rheumy on Monday to get clarification and explain your situation/ When you get your chest specialist things will be clearer for you I hope, mine has the last word on what to do during infections.

DebbieT

Yeah I remember you saying that b4. You must feel so secure having that knowledge in ure pocket ... I feel a bit of wimp about it tbh but it seems to have gone on so long n it's so exhausting especially wen I already suffer from insomnia :?

Please don't worry, it was wot I wanted to do so I was hoping more than anything. Ure right of course, it needs to be discussed. I've never rang for advice from my consultant. This rheumy has never met me as the 9th is my 1st appointment with them ... Will they care wen I'm seeing them a week Tuesday do you think? I've got no confidence about this, as uve probably gathered, I don't want to be a nuisance or anything

Thanks (((( )))) I really do appreciate all of the advice.x

salamander

You've every right to be a nuisance, they are only there for you!
I would ring.
take care xx

DebbieT

Thank you.x