Call from rheumatology

[allanah]

They explained RA with immune lowering drugs is one if the conditions my rheumy classes as high risk and to social isolate for 12 weeks.

However I should attend for my blood test, I can wait outside and they will call me in for my test .

They are seating less people in the infusion day room plus extra infection control. If my bloods show I am over immune suppressed they will withhold the infusion, so call me after my blood results arrive. If there are any changes to that protocol we will be advised by telephone.

If I'm unwell, as usual, with anh illness do not attend.

Sounds sensible .

[3LittleBirds2]

Good advice and hopefully provides clarification for all! Everyone should check with their own teams though x

[allanah in reply to 3LittleBirds2]

Of course.

[3LittleBirds2 in reply to allanah]

I deleted my post as it was starting to get debated and causing confusion.

[allanah in reply to 3LittleBirds2]

Sorry dudnt see it. I merely saying what my clinician said , I'm sure I have conditions you all do t have x do check with your docs x

[3LittleBirds2 in reply to allanah]

Absolutely and it very helpful, mine was my email from own team for my own situation. Yours clarifies it for most people x

[RosieA]

Yep. Resonates with what my consultant advised yesterday. Am keeping at home or walks with dog (I live in the countryside - although saw more people today than before, so will have to be selective about more anti-social times). They are trying me on a slightly reduced dose of MTX as slightly lower WBC etc than perhaps ideal in light of the C19. Have just bought returnable fabric samples - new curtains me thinks. So glad you have clarification. A weight off your shoulders.

Meant to say, unbelievably saw two sets of people who announced they were self isolating because of potential infection. Must admit that, although they kept their distance, I did feel rather a nervous wreck by the end. Just goes to show the only thing we can control is ourselves.

Keep safe

[Eiram50]

Good advice and shows they’re considering individual circumstances. Best of luck

[stbernhard]

Wrap up warm if you wait outside! Good luck.

[Mmrr]

Yes, my understanding too, we cannot be immunocompromised and not be more prone to the virus, it doesn't make sense.

[medway-lady in reply to Mmrr]

I think we will all get it in same way as no-one has any defence against so immunity doesn't count for catching. What matters is its more severe in compromised patients and its the severity that matters.

[Mmrr in reply to medway-lady]

Yes, I get that, but if we are immunocompromised, we also cannot fight infection the same as non immunocompromised people, hence we stop taking meds if we have an infection to permit our bodies the best opportunity to heal. We don't keep injecting biologics whilst fighting off a chest infection for example.

I am aware that some biologics (and HDQ) have been used to try and prevent/treat a cytokine storm, which could be seen as contradictory to recovery from infection. But it is all so complicated and at the end of the day noone really knows.

Many of us are also on steroids which does put us into the high risk category. I take a JAK inhibitor, new to the market, still collecting data on side effects, and prednisilone, so I am working on the basis I'm at high risk. If I'm not, no harm done, other than exhausting all the films on Netflix 🙄

[medway-lady in reply to Mmrr]

I so agree and wonder to reduce numbers in the high risk group why they don't instruct stopping all the RA meds or will they in the future ? I think this is not easy. I can't see how they can say I'm high risk because of a medication even if it reduces pain etc. I'm off the steriods now but thats just luck really and am grounded too for the foreseeable future it seems. But Santofini might even have a vacine they announced today it'll be a long way off but it is hopefull. And hope is good and positive.

If RA puts people more at risk yet to reduce that risk meds are stopped I'd stop mine tomorrow as you have to be alive to feel pain.

[Mmrr in reply to medway-lady]

It's a frightening thought that we would be instructed to stop using biologics, I would imagine that there would be a backlash from the RA/RD community ?

Many folks would also have other health issues creep up over a period of months, those who can and still do work might not be able to do so, some would need care more PIP claims and , and, and.... but I would not put anything beyond government.

[medway-lady in reply to Mmrr]

For me its clear and easy CKD and so I await instruction. Shall not hold my breath though. Etanercept did not agree or work for me so stopped last month. Just have to make do with AZA for now. So many have multiple conditions its so difficult isn't it?

[Mmrr in reply to medway-lady]

Yes.

Morally I cant see the government asking people to stop taking meds and make themselves unwell.

Maybe not starting biologics until after the pandemic is justified. But not stopping them.

[net2012]

I rang my rheumy nurse helpline, and there was a recorded message, saying they are still open for appts and infusions, but subject to any change. They said carry on with medication but if feeling unwell and showing signs of coronavirus or infections stop medication. and follow government guidelines,

[Nocciola]

Do you know what the doctor looks for in a patient’s test results to see if they are overly immune-suppressed? Just wondering because now that I am taking both methotrexate and Enbrel, I feel nauseous, slightly feverish, and under the weather for a day and a half following the injections. So if I take the injections Wednesday night, I don’t feel lively and energetic until Friday afternoon. Then I begin feeling apprehensive about taking the medication starting Monday. Just wondering if I might be over-medicated, and if I could tell by the test results.

[allanah in reply to Nocciola]

No I would call them and ask for advice xxx

[Mall in reply to Nocciola]

I take both by injection but I do take them on different days. Methotrexate(25mgs ) on Tuesday and Etanercept on Friday. Perhaps talk to your rheumy team about separating them over the week. As both are long acting it shouldn't effect the level of drugs in your body but may lessen the immediate impact.

[Nocciola in reply to Mall]

Thank you, I will try this. They started me on Enbrel the same day that I take the methotrexate, and when I asked if it was safe to taken them on the same day, they said yes. Others on this site take them on different days with seemingly less side effects so I will try this.