Hi everyone, hope you are all coping well and didn’t suffer too much from storm Eunice. Well I have had 3 jabs so far and a 4th due beginning of March. I now have COVID and have felt really unwell. I am CEV and had a very quick response from the NHS offering me an infusion which I am having this morning. Has anyone else had this treatment and how was it for you. Hopefully the COVID symptoms will gradually improve. I was due to have a reverse shoulder replacement in 3 weeks but have been told this is not going to happen now for about 6-7 weeks. I can understand the delay and as the lovely nurse I spoke to yesterday said I need to be as well as I can be.
Enjoy the rest of the weekend xx
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MaryTH
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Morning. Hope the infusion goes well. A few people on here have had that treatment. I’m sure you will hear from them soon. Once you are home agin, stay there. Stop by M&S or some-such and buy yourself some ready meals and chocolate x
So sorry to hear you have covid Mary and hope the infusion goes well for you. Just wanted to show my support and hope that you are feeling much better soon and gain the strength you need for your operation in the coming weeks. Warm wishes to you xx
Oh rotten luck, Mary. Thank goodness you are getting such good and rapid treatment. Here's hoping you recover quickly and you get your operation soon. Wishing you well
Hi Mary. I'm sorry to hear you have Covid and hope it will be a mild dose. All the best with the infusion and I hope you'll be feeling well again very soon. x
Heck. What a nuisance, but good that you're having the infusion. There are some who have had it so hopefully they'll see this & share their experiences. I hope you'll be ok & have someone who can look after you. Such a shame so close to your op, but the priority now is recovering, getting over this then you'll be as well as you can be for your op. x
Yes I had it on 11th Feb same day of diagnosis and was tired for about 24 hours then it sort of went away. Still got a bit of a runny nose but no other issues. My SATS never went below 95 so go for it. I never felt awful just mildly unwell. I'm so grateful it really works I had Xeduvy.
I should add that Quality Street helped as did Lucazade and the NHS does seem to really be on top of things now. My GP sorted out everything from the LFT and it was brilliant. My husband got it too and has really enjoyed 'suffering' as he didn't get any special treatment but still munched my sweets. lol xx
Can I ask who you rang to organise the infusion? All I have is a PCR kit that I have to send away if I get symptoms, so could wait a few days. I am so frightened of getting Covid. cEV on Ritux and asthmatic ☹️. it is heartening to hear a few of you have recovered. TIA
I rang GP and she rang back at the end of surgery. She organised everything by referral to Covid at Home Team and to Covid Consultant at local hospital. It was later on the the team rang back to provide an oximeter and consultant rang in the afternoon to offer infusion that evening. I'd had the treatment before the PCR came back but they both said LFT are now very accurate and vital to get treatment asap. as it works better. The PCR was replaced by post and all in all I'm impressed.lol x
I was advised by GP surgery to have a PCR test so I went to a drive through centre. I was then contacted the next day by NHS who organised the infusion. Unfortunately I am still testing positive although I am starting to feel a little better and like you I am CEV with RD an Asthma amongst other things. Fingers crossed 🤞🏻 you do not catch it. Take care xx
That is reassuring….it is the asthma that worries me most. I got sent a PCR test kit to do if I felt ill, which is meant to spark things into action but thankfully havent had to use yet. Take care and get well soon
Sorry to hear this and hope it’s only a mild dose. A friend of a friend in the same position recently had the antivirals following a covid diagnosis and went from feeling very poorly to do much better within only 24 hours 👍 Hope it works well for you. 🤞
I had a telephone appointment with my Rheumy team on Friday. We discussed anti viral drugs, how I can access them etc.She also said she had seen quite a few patients who had had the infusion and they did really, really well.
It’s reassuring that the referral system is at last joined up and working how it should.
She also said she felt bad for peeps like us as HM Gov seem to have forgotten us.
Hope the infusion stops you getting too poorly get well soon and good luck on the shoulder op. I’ve had the reverse shoulder op 5yrs ago and very successful x
I did have one Rituximab infusion but unfortunately the 2nd one was cancelled because of an ulcer on my leg and my health has been up & down since then. I wasn’t asked what meds I am on but I am CEV with RD and Asthma plus other things. Take care x
You need to be strong for your shoulder it takes about six months to fully recover. Sorry to hear about covid I caught it just before Christmas don’t know how! Take care drink plenty 🌺 shoulder replacement was best thing I have done!
Hope your feeling better soon. I had the covid in September but it wasn't too bad for me and I've relaxed a lot of my concerns since. I've had it in the house twice since with the kids and not got it so far.Look after yourself
Hi Mary I am clinically extremely vulnerable. I caught covid at the end of January an I had the transfusion. I felt weak an exhausted for 2 weeks . Although it did stop me Being coming seriously unwell I have continued to test positive for covid after 22 days. I contacted PCR testing people as Rheumatology team suggested after 10 days I I should take another test. An they said don’t test again as that would just mean isolating again and because I have so many antibodies I would test positive for up to 3 months. Although I feel fine without a negative test I am unable to go to the dentist or doctors for blood tests. I also had to cancel a premed for a foot operation. Hopefully your transfusion goes well I was only in hospital for about 2 hours the actual transfusion only last about 20 minutes.With the changes coming in soon to isolating I’m hoping this will also mean I can go to appointments soon
Get well soon Mary. It is a shame that your operation is delayed but hopefully not for long. I had a total knee replacement two weeks away and am recovering well. I hope you have a mild Covid dose and soon get pain relief from your operation. X
Also triple jabbed and got COVID for Christmas. (Primary school teacher- caught in Christmas show week!) Lucky you getting the infusion. The antivirals came too late for me. I am still off work with long COVID meeting forced gap in RA meds.
Good luck - keep checking oxygen levels etc. My experience is that I wish I had had the opportunity you have. I have friends with RA for whom it has been less extreme.
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