Just released

[allanah]

Just released from government xx

[happytulip]

I suspect that it means those who need it most will get it. For example, people working on the front line with Cv-19+ve patients and in the health and care sector?

[medway-lady]

I read the Guardian feature they reported they did'nt work.

[AgedCrone in reply to medway-lady]

As far as I understand, no test can tell if you have ongoing immunity... ....just if you have had the Virus & have antibodies today.

I would only bother having a test that can test positively for ongoing immunity.....

Presumably health workers will be having the blood prick tests regularly?

I can,t see the point knowing I might have immunity on Monday, but maybe not on Tuesday. I don’t think a free test will be rolled out to the general public until such a test is available.

[medway-lady in reply to AgedCrone]

My sister did'nt for the reason you say, its like an MOT, today you pass tomorrow the brakes fail.

[AgedCrone in reply to medway-lady]

Eeek..don’t say that....I have just booked my delayed MOT!🚙🚕🚗

[happytulip in reply to AgedCrone]

I agree. I want immunity not just antibodies....or even better, a vaccine!

Don't want much do I??

[AgedCrone in reply to happytulip]

I think that is what we all want ...& some clarity about what we can realistically expect.

I think those that are struggling would not initially like it, but they would feel a lot better, if we were all treated like adults & not spoon fed Pie in the Sky Ambitions than can never materialise.

It’s makes it so much easier to cope if we are not constantly led to water.....then not allowed to drink.,,,because once again it’s another false premise,

[happytulip in reply to AgedCrone]

Yup, I'd rather hear any harsh truths and deal with it. But I'm remaining positive. But have found today hard, mostly due to steroids being tapered and hot weather.

[AgedCrone in reply to happytulip]

Dig deep HT...tomorrow has got to be better👩‍❤️‍💋‍👩

[happytulip in reply to AgedCrone]

Thank you.

[allanah in reply to happytulip]

Thinking of you

[happytulip in reply to allanah]

Thank you. Just a challenging day. X

[allanah in reply to happytulip]

That ..I get ...

[bubblyalex in reply to happytulip]

I’m tapering by 0.5mg every other week. I don’t like suffering and when we tried tapering by 5mg or 2.5mg ... I struggled. The hosp pharmacy gave me a ‘pill splitter’ to split the 5mg tablets in two... so now I’m trying tapering by 0.5 mg. So far so good.

I wish you luck... but don’t suffer ... ask rheumy for help?

[happytulip in reply to bubblyalex]

I've been tapering from high dose in 2015. It's a very long process and I'm the lowest I've ever been but that means that my disease is ramping up a bit 🤪

[bubblyalex in reply to happytulip]

Don’t your other meds need adjusting to compensate?

[happytulip in reply to bubblyalex]

No, I have multiple AI/Ruematic disease and a primary immune deficiency so currently can't be immune suppressed any further during a pandemic and have a chronic infection.

I just titrate my analgesia and activities appropriately. I find mobility to be one of the best things but that's difficult when shielding as I can't go for a walk .

I use alot of gel packs and just take it quietly when I am reducing. Best I can do. I find tapering so hard and it gets worse the lower I go.

Thanks for the reply.

[bubblyalex in reply to happytulip]

So sorry that it is like that.

[happytulip in reply to bubblyalex]

'Tis what it is, onwards and upwards. But thank you 😊.

[attatel in reply to happytulip]

I'm trying to get up the courage to start tapering. I've been on 10mg/day for about 6 weeks now and in the last 3 weeks I've been better than I have been for months. I am so nervous about rocking the boat and going back to not being able to do anything again. Had to come off toc in February and can't start my new biologic at the moment because of the pandemic. Keep thinking I'll go to 7.5 every other day then chickening out. Obviously, I'd like to get down to 5mg/day to decrease my risk. I'm interested to know how big a difference it's made for you?

[happytulip in reply to attatel]

It helped initially but I have alot going on.

Its taken me 5 years to go from 20mg to 9mg.

I've had IV methylpref and IM depo in-between. I've had to crank up the dose when I flare which has been frequently and I can only come down by 0.5mg a month maximum as I am systemically inflamed.

It has helped but they aren't nice drugs and reducing is hard in my opinion

[attatel in reply to happytulip]

Thank you for this. I've only ever had short courses before. Started on 15mg for a fortnight this time and got down to 7.5 but had to go back up to 10. It sounds like you've got an awful lot going on - I think it's really brave of you to cut down. I really hope it goes well. x

[donnabrain in reply to AgedCrone]

Two of my children are health workers.

Neither have been tested

[AgedCrone in reply to donnabrain]

We seem to hear this all the time.....it seems very wrong. Has it been explained to them why they have not been tested? Has their union been involved?

One thing that really needs sorting is to tell people WHERE they can get tested. I don’t want/need a test...but I did go on line to find out & I couldn’t make head nor tail of the instructions!

I think rather than announce all these HiTech plans that then fail .....centres should be set up, and everyone tested,....at least that way everyone would know where they stand.....but what those in charge would do with the information.......Lord knows....because at the moment nobody seems clear on what’s happening,

[allanah in reply to AgedCrone]

Lots of advice on nhs.uk about how to get tested. Lots of government documents out now about but and it was explained in government briefing too.

Nras just put a pinned post with lots of new advice too.

[AgedCrone in reply to allanah]

Lots of Info & advice......but when you break it down, If you have no car, & there is no reliable public transport how are the elderly supposed to cope, or a mother with young children?

Look how far apart testing locations are......& how long you have to wait.

Plus it would have have helped if the swab kit wands fitted in the containers.... many posted out tests were impossible to process.

The whole testing set up is really not fit for purpose....the only time it seemed to gain any momentum was when the military became involved, & that seems to have dropped off the radar now. Even then, front line health workers were expected to fit in getting tested between really long shifts.

Maybe it would have been better if only swab tests were done on key workers.,...but then the scientists needed to know what level of immunity exists....so even if in a very random way the antibody test Is/was needed?

But as I have said before, until there is a 100% reliable immunity test...we just have to continue to take care.

Thankfully on this site we have had very few reports of anyone on here actually contracting the virus, so we must all be doing something right?

[Eiram50 in reply to AgedCrone]

Could there be some comfort for people, knowing they’ve had it and haven’t become poorly with it, perhaps? I guess, for some, if this were the case, it may make them less anxious about being out in the community again? Dunno x

[AgedCrone in reply to Eiram50]

I think what everyone wants is a 100% antibody test showing ongoing immunity ....but with such a New virus that will take time.

On chatting with friends quite a few of us “think” we had some sort

of viral infection back around March...but who knows?

But,it does seem as if distancing is the key until a vaccine is found.

It’s very tedious.....but what else can we do.....except just look ourselves & not fret what others do.

[Eiram50 in reply to AgedCrone]

Absolutely.

[happytulip]

Was it you who did one Ajay or was it someone else, if so, how did you get on?

[happytulip]

I think I remember now. I remember thinking that it was very expensive. Thank you

[nomoreheels]

Good. I didn't hold with being able to purchase the testing kits. Far better to leave it to the professionals as or when, or even if, we need to be tested. I thought them expensive anyway.

[happytulip in reply to nomoreheels]

Very expensive!

[Pippy28]

Just for information, my two children are NHS (physio and pharmacist) and had the antibody test yesterday (full blood draw not finger prick). My D in Law is a nurse and will have hers on Monday when on shift. There’s a form for them to fill in stating whether they’ve had symptoms or not, a test or not and whether any test was positive. It will be very interesting given that my D in Law has had a positive test and was mildly poorly but my son (nor the rest of us - all living in Lockdown together) showed any symptoms. Did he get it? Did we all get it? Although knowing you have antibodies doesn’t tell you if you’re immune, it should hopefully provide some useful data to continue the research.

[allanah in reply to Pippy28]

The government blood drawn ones should provide lots of data and will be helpful to tour family I think xx

[Leics]

My friend works in pathology in our local hospital she was offered and had the antibody test yesterday. She did say that it will take two weeks to get the results so they’re starting to roll it out in hospitals. The other news I was given is 5 nurses who were randomly tested have all come back positive for having had the virus and non of them had any symptoms whatsoever. So there could be lots of people out there who have had the virus and didn’t know it but I’m sure we already knew or suspected that.