SALAZOPRYN: My 35 yr old son is poorly with temp and... - NRAS

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SALAZOPRYN

jell profile image
jell
15 Replies

My 35 yr old son is poorly with temp and cough.

I have now started same (but not 'persistent' cough?) my chest feels bad.

Have i done the right thing by stoppiung my slazopryn?

I am still taking the hydroxychloroquine.

It's concerning as only those needing to be hospitalised can be tested, oddly.

My husband just come out of hospital possibly spreading virus through A & E, three different wards and all the staff. Worryingly no one was concerned nor worried about husband being extremely high risk.

Obviousluy i am not mentally capable to need testing accoording to this government so i will have to listen to their non exixtant advice.

No am not going on a cruise. How odd. Does that mean I'm ok? Or do I just shrug shoulders and be one of those he says should expect to die?

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jell profile image
jell
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15 Replies
KittyJ profile image
KittyJ

NRAS recently posted to say continue to take your meds unless of course your rheumy tells you not to. Here is a link to the advice.

nras.org.uk/news/coronaviru...

jell profile image
jell in reply to KittyJ

really not helpful at all. We are told to stop taking it if we have flu as it knocks back our immune system?

They are so non-commital.

If we are tested when ill, we could recover with the knowledge we are able to safely get on with things afterwards so can help others.

Otherwise we could be self isolating for weeks on end if we don't know if just a 'normal' virus..

KittyJ profile image
KittyJ in reply to jell

Well I’m sorry if you didn’t find my reply helpful. This is reliable informed advice.

jell profile image
jell in reply to KittyJ

no! i meant NRAS advice not helful - apologies

KittyJ profile image
KittyJ in reply to jell

Ah ok 😊

helixhelix profile image
helixhelix

Have you phoned 111 if you are concerned? And has your son been staying away from you?

AgedCrone profile image
AgedCrone in reply to helixhelix

The advice now is to email Nhs/111 with your condition & for instructions what to do, as they are completely over run with calls.

Yesterday it was impossible to get through apparently.....& they are just saying to stay home & self isolate.

They will only be swabbing people who are admitted to hospital.advice:

See directions currently in place below

Use the NHS 111 online coronavirus service if:

you feel you cannot cope with your symptoms at home

your condition gets worse

your symptoms do not get better after 7 days

Only call 111 if you cannot get help on line

helixhelix profile image
helixhelix in reply to AgedCrone

I can understand why they have had to do that....and I hope people are sensible about coping as long as they can. But it means that the data on numbers infected will be a massive underestimate!

AgedCrone profile image
AgedCrone in reply to helixhelix

Not necessarily....I expect they have found an awful lot of people were phoning in when they had only got the winter sniffles.....which will disappear well before 7 days....& were not relevant for the stats.

Unfortunately until the last few years in the UK people have not had to take full responsibility for their own health ...instead of popping in to ask the pharmacist for advice..they visited the doctor & now many go to A&E quite unnecessarily.Maybe now they have been over calling 111?

In most countries this doesn’t happen because you have to actually pay at the point of treatment...even if you can recoup the money later.........this system is not understood here.

It looks like this épi/pandemic is throwing up big time that things are going to have to change - because we just don’t have enough doctors in the NHS to cope. Not only with this virus, but we are already seeing GP appointments stretching to 4 weeks, & hospital appointments to months.

So maybe nasty as it is .....this virus will kick the powers that be into really addressing the NHS once & for all?

jell profile image
jell in reply to AgedCrone

There is no particularly helpful advive on the NRAS site and I do not understand why they are so non-commital.

people were not being tested before but now even less. UK is going against all the advice from WHO and they are frustrated.

111 do not want calls unless you have difficulty breathing.

You cannot get tested unless you are admitted as an emergency with the virus.

I need to know if my son, who living with me with his 13 month old, has it.

If he has and I have it then can self isolate and know am safe and after it has gone, I can help vulnerable folk near me without fear they will catch it or i can catch it from them.

But we are only being told to isolate for one week?

Is the virus in UK a different strain or something?

HAH! Delay phase - The Tory Social Care Plan..

Get rid of the sick, elderly, vulnerable, overtly with Covid-19

Have no confienence in this government. They suggest I am not mentally competent to understand so by doing nothing it will prompt me to wash my hands and stop going on cruises.

Their reasoning - the more people that get it flattens the curve. Wow. Perhaps maentally I'm not competent enough to understand that, especially since scientists worldwide say different.

Mr Nob can test but not Joe Bloggs.

AgedCrone profile image
AgedCrone in reply to jell

NRAS are noncommittal because they don’t know ....nothing like this has happened in living memory. They are taking information from the government site ......which you can read as well.

The Govt are taking advice from scientists, doctors and epidemiologists ........if you look at Italy & now Spain .....we aren’t doing too badly......our figures are much lower.

Personally am pleased the Govt are not trying to struggle through without advice.

As you are so worried about your son and his 13 month old baby ask him to email the NHS111 help line as I said above.....describing his symptoms and asking if he can be tested ...that is what you are being advised to do rather than trying to call 111 on the telephone.

I would expect they would take particular notice as he has such a young baby.

Does he have a cough & a temperature.....is the baby distressed.?

I do think if you are so worried you should do something..... now....

unfortunately nobody on here has any more information than you do ......so please do get your son to go online and see what 111 advise.

I would think online there will be a form to fill-in......they may call you back....so leave your phone number... if they think the symptoms your son has, are cause for concern.

I do hope your son just has a cold.

jell profile image
jell in reply to AgedCrone

all i want to know if it's ok to stop a tablet that's maybe suppressing my immune sysetm. We are told to if we have flu, or after the jab so why not if we have Cobid 19?

AgedCrone profile image
AgedCrone in reply to jell

We can’t answer that....generally people are being told to keep taking their drugs.

If you can’t get hold of your rheumatology nurse go in to ask your pharmacist he will know the answer.

Have you or your son emailed 111 ....don’t you think you should be more concerned about your grandson getting infected then worrying about taking your pills?

There is help available please do use it.

in reply to helixhelix

I suspect its been underestimated globally for quite a while. Some folks have no symptoms therefore won't have been tested.

nomoreheels profile image
nomoreheels

I suspect you're not going to like what I say but anyhow... we’re no more knowledgable than you I'm afraid. We've been advised to continue taking our meds until instructed not to do so by our Rheumy. This I would think includes sulfasalazine, unless you know different as you're querying it specifically & intend continuing hydroxycloroquine. We aren't medically qualified as you know so the best option I can think of given there appear to be so many obstacles is to phone your rheum hotline, they will advise for you personally. Or, though it will be general info, use the symptom checker/advice on your Practice website or phone them on Monday morning if there's other info you think they can provide. The only other specific information for those with RD I'm aware of is from Versus, don't know if you'll find that any more helpful? versusarthritis.org/news/20...

We're all in the same boat aren't we? At the behest of the info we're supplied with. Anyway, I hope your Son's symptoms don’t, worsen, yours also.

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