A vasculitis sufferer

[Westley]

I wondered how others are coping with pandemic and the precautions you are taking

[Grizzly-bear]

I’m still taking all precautions. I will play with my nieces and nephews but wear an FFP3 and fitted ski goggles. They aren’t judgemental like adults so just accept me as I am! Overall I see people very little though and nearly all my family recently had covid so had to stay away from everyone for weeks. I don’t socialise with anyone without wearing a mask and all the adults and older children I see wear a mask around me too. Toddlers will keep them on for a little bit but they’ve got little faces and they’re not as well fitting on them. I bought loads of FFP3s so I can give to anyone who shows up with an inadequate mask.

I was hoping that Evusheld would become widely available so summer might be more enjoyable but that’s not looking likely.

[Westley in reply to Grizzly-bear]

Hi Grizzly-bear, your way of protecting yourself mirrors mine so I think we'll done for keeping safe, easing the strain on the NHS.

[Grizzly-bear in reply to Westley]

I spent a month in hospital with vasculitis last year. Was alone in a room with no visitors. Not something I want to repeat if I can help it. When I go through periods of feeling ok health wise I value that feeling so much. I still socialise but am just ultra cautious with it. I also wouldn’t want my family to feel like they were responsible for making me sick so my cautiousness is as much about protecting them as it is about protecting myself.

On rituximab and yet to see anything that suggests the risks are any lower.

[Investigator1]

Hi Westley, trying to get on with it. I am taking calculated risks, for me it’s better for my health that way. I still wear a mask and sanitise everywhere I go but I go shopping once a week, I have been abroad twice and I am currently on holiday in the NY Moors in a refurbished chapel and have been going out for meals. We maintain social distancing as a minimum. We go to the Cinema at quiet times too. I have to live. Still feel let down by Goverment but just trying to get on with it.

[Reboundman]

I’m taking prednisone and methotrexate. I’ve had 4 jabs and haven’t changed my behaviour at all. Everyone’s situation is different and we have to make our own choices, in my case I made the decision early that I wasn’t going to let my condition change my life any more than it had already. So far so good!

[May7]

Hello Westley. Since masks and isolating were no longer mandatory, I have felt more nervous about going out in indoor public places. I bought some nice fitting ffp2 masks to go shopping in, but because of the airway obstruction caused by my vasculitis, I found breathing very difficult. So for now I send my husband out with a shopping list. I do intend to try less crowded spaces with an ordinary mask when I get the nerve, so that I can enjoy some aspects of my old life. When I asked him, my chest consultant said that I can meet people indoors for social chats if we are 2 metres apart in a ventilated room. I have been doing this. I have had 4 jabs, and found that I have antibodies after doing the test for the MELODY study. I also have the personal PCR test kit that they sent me, so I really ought to loosen up a bit and try to enjoy life a bit more. We'll see.

[Westley in reply to May7]

Thank you so much for replying to my text. Your life seems a copy of mine and yes FFP2 masks definitely seem the best we both use them. I use them the moment l get out of the car. Often I'm the only person l see for all the time I'm out who is wearing a mask! I'm having weekly injections of methotrexate and have had the four jabs. How long have you had vasculitis?

[May7 in reply to Westley]

Exactly 7 years. I had sudden breathlessness after walking a few yards, and it took several months via breathing tests, an x-ray and a multitude of blood tests to diagnose ANCA POS Vasculitis, EGPA. I am on Prednisolone and Mycophenolate. Together they control the Vasculitis, but my lungs and kidneys are irreparably damaged.

[ICE187 in reply to May7]

Look up "DanShen" for your kidneys and "Mullein leaf" for your lungs. Danshen (Salvia miltiorrhiza)

[Westley in reply to May7]

I'm told mine is under control with the injections but I still have lots of pain in my joints. Still see my consultant every six months and can phone if I feel ill bit have had a good run

[1tufcookie in reply to May7]

My EGPA sounds the same as yours. How do you cope woth doctors and social security all acting as if nothing is wrong with you???

[May7 in reply to 1tufcookie]

Poor you if you've had these sort of problems. I don't have to deal with social security in my position as retired in UK. And none of my doctors has acted as though there's nothing wrong with me. However it did take quite some time to get diagnosed, because my first symptoms of breathing problems didn't fit any known pattern. It took several months to get spirometry tests, following on from my x-ray. It wasn't until I was sent for no less than 13 blood tests, that Immunology and Blood Sciences showed the ANCA Vasculitis with excess eosinophils. My local GP had never seen a vasculitis patient, being so rare. But once diagnosed, I have received very good care by my rheumatologist, together with nephrologist and cardiologist once the kidneys and heart became involved.

[Westley in reply to May7]

Yes rheumatology are absolutely great aren't they, I have to agree my gp hadn't dealt with vasculitis so it took some time to diagnose but once my bloods went up to the hospital they knew it was ANCA vasculitis and I've been so well looked after and feel they saved my life, I'm so glad you have had the same good treatment

[May7 in reply to Westley]

And I'm glad you have too! In fact it's my rheumatolgy consultant, together with my nephrologist who have really taken over my (almost) complete care over the last few years.

[Westley in reply to 1tufcookie]

im in similar position, constantly i have pains in my joints and terrible fatigue. but the consultant reassure me Im in remission and i just dont understand if i am why i still have so much pain. my remissiom is apparently because I have weekly injections of methotrexate. i understand that vasculities is not curable, but it is manageable its been that way for some some months now, so i keep thinking have i still got vasculities or not!!

[Varp]

I dont go out without my mask. I do go into some shops but only at quiet times. Only visit inside homes with my adult children and grandchildren they lateral test before my visit to them. A couple of close friends visit me, enter via back gate and we sit distanced in the conservatory with windows open

[Westley in reply to Varp]

Hi varp I live just like you I take special care if friends or family come because its so easy to relax and forget to not get too close or hug isn't it. Whereas going I to shops in my mask l find it easy to keep a distance, strange we think friends won't catch it! Have you been offered treatment if you do catch it lknow some have which must be a comfort.

[Varp in reply to Westley]

Yes Westley, funny you should ask. I had received a red NHS priority PCR kit. I've had an email today saying if i test positive i should hear within 24 hours about treatments and if not who to contact.

[Main1234 in reply to Varp]

We contacted our GP who arranged admission for antivirals, but some contacted 119. Some I understand contacted their consultant ,it seems a bit hit and miss at the moment .