Treatment for Covid available for RA sufferers

[swoodge]

Why haven’t I received the covid letter from the government regarding the treatment available if you get covid if you are immune suppressed?

[Kerensa56]

Hi swoodge , I just received a text from rheumatology with a link to the site to order a test, might be worth contacting yours ? 🙂

[swoodge in reply to Kerensa56]

I have just had Covid and it was terrible the service I received from everyone really, no-one took responsibility for the treatments available to immune suppressed people. When I got really bad I phoned the gp who said the letter I should have had (looking a the Gov.uk site) wasn't to do with them so they couldn't help me and told me to call my Rheumatologist, I called him and got his secretary who told me that the treatments where only in trial stages yet and I was just to get over it! I then phoned my Biologics team for help who were the only ones who were helpful even though they couldn't refer me for treatment at least they were nice, she told me to call 111 which I did and they got a doctor to call me. She at first told me she couldn't do anything for me unless I wanted to call an ambulance but after 5 mins she called me back and said she had spoken to a colleague and was told she should have referred me for treatment and I would be called by the hospital later that day or the next. I didn't get called! Luckily I struggled through with my husband at home looking after me. I never want to go through that again when I know I should have had the test ready to be sent off which automatically get you to the treatment straight away.Sue

[Kerensa56 in reply to swoodge]

That all sounds absolutely dreadful, can’t believe they were so lax & hope you’re recovering now x

[swoodge in reply to Kerensa56]

Thank you yes I’m doing okay now took until day 12 to be negative and also to feel a little normal again. Just very tired and I have a sore throat still from the coughing. I really don’t want it ever again, it’s really annoying, I’ve been so careful! X

[TytoAlba in reply to swoodge]

It seems to me that the NHS is in chaos with the right hand not knowing what the left one is doing. Lots of us appear to be getting conflicting advice from people who don't know what the current advice is.

On a similar but different note, I'm finally getting some minor surgery in a couple of weeks that I've been waiting for since before covid and have been contacted by 4 people and had 2 letters sent this week, all about the same thing! It's no wonder NHS resources are hard to access when you have 4 people from the same department all asking identical questions.

[Madmusiclover]

Can’t help. Haven’t had mine either!

[sunnyweek]

I recently received a letter it was from the rheumatology department not the government. It may be worth you contacting your rheumatology department. I still had to order my own test kit though through 119.

[janmary]

I contacted 119 who sent me mine

[Gladders]

Haven't had a letter but yesterday received a call from 119 Resolution Centre who I contacted at the beginning of December as my 3rd vaccination was recorded as the 'booster' to say she would amend my records (bit of a coincidence I have my booster booked for today). I asked about getting the testing package she said she didn't really know as her department doesn't deal with it........

[BoneyC in reply to Gladders]

Result!!

[Runrig01]

It depends what immunosuppressants your on. DMARDs alone don’t qualify. I’ve attached the document that explains. If you look at page 9, we come under the section immune mediated inflammatory disorder, it states who is entitled. As of 10th Feb a LFT that has been registered will qualify.

england.nhs.uk/coronavirus/...

[Hidden in reply to Runrig01]

Thanks for the link, which I hope I will never have to use 🙃.

[Denise64]

Hi I also have not been contacted so I rang my Rheumatologist nurse who said I'm only on one immune suppressed drug and have no other serious health concerns so I dont qualify. I said well I have ashma she said yes but it's under control . So it's a case by case thing. Depends on what your health is like and what drugs you are on. Which I really dont understand I think if you are immune suppressed to the point of having 4 jabs surely you must be entitled to this same as me.

Wonder if I ring 119 could they help

Denise xxx

[bpeal1]

Lots of useful information about this on the NRAS website. nras.org.uk/resource/faqs-n...

I would check here whether you are eligible and if so contact either your rheumatology department or GP.

[TytoAlba]

I received a letter from my Rheumatologist today telling me I've been identified as a patient who might be suitable for new treatments for coronavirus, which I assume are antivirals. The letter says I should call 119, select Test & Trace and request a test from them to keep at home to use if I get any symptoms. That makes it sound like it should be easy to get a test but let's see how that goes when I phone them...

[swoodge]

thank you everyone for your replies they are really helpful, I feel I get so much support on here x

[Rupert2001]

If you have been categorised as significantly immunosuppressed by your rheumatologist you should have received a letter stating this. If you think you are, then ring your rheumatologist to clarify this. Ideally, immunosuppressed people should have received a letter and a priority PCR test to keep and use if you have symptoms. Unfortunately a lot of people , like myself, received a letter but no priority PCR test. It look like we will have to make do with the ordinary PCR which you can get from 119, which is not ideal as there is only supposed to be 5 days between getting Covid symptoms and being offered antivirals or nMABs. In that time you have to do the PCR , send it off in a priority postbox, get the result back and if +ve be referred urgently to CMDU who will talk to you about the treatment and organise it. That is not a lot of time!!

Apparently from Feb 10th having a +ve lateral flow test will do if you don’t have a PCR or are awaiting the result. Report the lateral flow result and if you are on the eligible for treatment due to immunosuppression you will be referred to CMDU. I am sure if you talk to your rheumatology dept on Monday they will be able to help.

[bpeal1 in reply to Rupert2001]

I only had a normal PCR test (not a priority one) which I used this week. I received the result in just over 24 hours after I posted it. I posted it late morning Tuesday and had the result early afternoon Wednesday. Luckily it was a false alarm. But it’s reassuring to know that even standard ones are coming back relatively quickly now.

[Rupert2001 in reply to bpeal1]

That was excellent and reassuring ! My daughter waited over 72 hours for her result in November but it was over a weekend.

[bpeal1 in reply to Rupert2001]

Yes I had friends in November who waited 3 days for results too. I think that now most people don't need to confirm lateral flow tests with PCRs it has taken the pressure off the system.

[Knip in reply to bpeal1]

There is a collection point for a rapid result from your PCR but I'm not sure where it is for each area. My letter told me that I would be assessed if I had a positive PCR to see if I needed the new anti virals, either by Rheumatology or another Doctor. I think it was a standard letter sent out to all of their patients. It gave details on how to obtain a kit to keep at home in readiness.

[swoodge in reply to Knip]

Hi where did your letter come from? thanksSue

[Knip in reply to swoodge]

Rhematology Dept sent it a few weeks back, Sue.

[swoodge in reply to Rupert2001]

Thank you so much for your reply it’s really hard not having someone there that understands how you feel. I know I’m in the right category for this but having the secretary tell me to “just get over it” really didn’t help. Hopefully the rheumatologist will be better.

[Knip]

Coronavirus Home Testing

[e-mail]

I used this site as requested, Sue, and their reply is as follows, sent with the kit. Hope this will help. Take care, Knip. x

Your coronavirus home test should arrive within 2 days.

Your order confirmation number is xxxxxxx.