Methotrexate

[Caravan17]

I’m on methotrexate and just read on another site that we should have a letter about shielding as anyone had one as I haven’t received one

[helixhelix]

This is the score card so you can assess your own risk and decide what you need to do

rheumatology.org.uk/Portals...

[Dobcross1]

No, I haven't and not expecting one as I only take methotrexate, which I think is classed as 'moderate risk' - but this is only my interpretation of it, for myself. I'm therefore social distancing, but as HH says above you must do what you believe to be right for you.

[dembonesDAMNBONES]

I stopped taking MTX a couple of weeks ago, so that my immune systems would recover and lessen the chance of catching the virus.

I'd sooner my overactive immune systems munched on my joints than were too weak to save me. 😜😂😂

[Hidden in reply to dembonesDAMNBONES]

That is your choice but against what nras and the experts are saying.

[dembonesDAMNBONES in reply to Hidden]

I caught TB as a boy.

Never caught so much as a cold, apart from that in almost 6p years.

It took four years and the threat of legal action against my local health board and Trust, for the experts to finally accept I know my own body better than them and was, in fact, suffering from RA.

I know ahead of bloods if a drug is having success.

I also know how much my immune systems have been suppressed and my individual choice, made from a position of personal knowledge and judgement, was it wasn't worth my while taking the risk of continuing with MTX, regardless of what experts, a ridiculously few of whom are sufferers, themselves say.

I'm not advocating or encouraging anyone to take a similar stance, merely stating the choice I made, as I've always had a mind of my own, albeit crazy at times.

🤔😜😄

[Hidden in reply to dembonesDAMNBONES]

My sister also has RA and she is considering stopping her mtx too.

[dembonesDAMNBONES in reply to Hidden]

As you said, it's all about choice.

Many on Hydroxychlorine for RA are unaware the UK and US have finally gotten around to conducting clinical trials on it as a possible cure for the virus.

Nobody is actually stepping forward and keeping the public up to date, or synchronising efforts from different fronts.

There's too much reactive and not enough proactive decisions being made by those in charge.

I receive up to date emails on the virus from the govt site and I'm sick to the back teeth of pointing out how disjointed and unorganised their approach has been from when patient zero first spread the virus.

Naturally, they don't reply, even to my more constructive suggestions. 😂😂😂

Anyone who should have known did, but sat on their lazy, stupid arses and did not give us so much as a heads up, until it was too late.

It actually frightens me how much information should be made available but isn't to the point of deliberate suppression.

Smh.

[nomoreheels in reply to dembonesDAMNBONES]

Possibly limited news here re HCQ (I would like to think) due to the fact there's now a big concern that both RD & Lupus patients are struggling to have their scripts fulfilled (particularly so as there are few other suitable meds for the majority who have Lupus except in it's severe form). Due in the main because of some countries releasing info about it's possible usefulness, though there’s limited hard evidence, in treating Covid-19. Some countries have even bowed to pressure & are prescribing it even though trials are scant & inconclusive. Understandably people are just desperate for an existing med to be proven as a treatment to help ease symptoms but I do think it has been irresponsible of the Governments of the countries concerned to cave in & prescribe HCQ nevertheless.

Just my general musings.

[Hidden]

dembonesDAMNBONES it is your body and you are not saying the rest should choose this path. It is a minefield and many a time we know something is not right before others accept we are not creating drama.

Anyway just glad to see you back on here missed your odd forays on here x

[dembonesDAMNBONES in reply to Hidden]

Hi Deeb!

Yeah, wot you said. Lmao.

It's bloody infuriating at the lack of leadership from govt and the NHS bosses, which is putting everyone at risk.

[Hidden]

as helixhelix has said look at the score card but remember there are other factors. So your RA plus do you have other issues plus certain other meds you might be taking.

It will not be cut and dried for anyone on here so read the chart but also it's as the advert says stay away from others as much as you can!

Take care

[dembonesDAMNBONES in reply to Hidden]

I also have osteoarthritis, but, perhaps of more concern, I suffer from emphysema.

It just so happens I have Hydroxychlorine, which the UK and US are conducting clinical tests on right now, but appear reluctant to even discuss the trials.

Naturally, each patient on here and elsewhere is unique, so variable factors have to be taken into account, but the over-riding factor at play here is all meds we take are designed to deliberately suppress our immune systems, because our condition is caused due to our own overactive systems attacking our joints.

Immune systems are our defence against viruses, in general, pathogens, etc.

I know my own system, given free reign, is second to none, so I'd prefer it running on all cylinders in the current situation.

Stay safe, Poppet.

[Caravan17]

Thanks for your reply’s much appreciated I was self isolating anyway

[Ali_H]

To answer the original question... no I have not received a letter and nor has my OH who is insulin dependant diabetic and had TB in the 1980s. We are both working from home and keeping outside contact to a minimum - quite enjoying the ‘cocoon effect’ if I am honest! 😎 but the weather is good and we have a lovely garden so that contentedness may diminish when the weather turns.

All the best

Ali

[AwareofsameSam]

I haven’t received one either. I’m prescribed Methotrexate and Humira.

Humira is particularly potent and states clearly in the literature that comes with it that “Serious infections have happened in people taking HUMIRA”. I also have heart failure and asthmatic as well. I thought I might qualify. But I have not received anything.

In my opinion, It seems and sounds to me like a bit of a bodge-up. Because there are so many other people that should be considered ‘high risk & vulnerable to serious problems if they caught Coronavirus. It seems that they wont be receiving this letter either.

I contacted my GP who stated that they don’t decide, yet they have received a letter from NHS England, instructing GP’s to assist in the decision making process of which patients in their practice are ‘high risk’.

I don’t think GP’s have much of a clue either.