Flu

[artists]

I have HUVS do you know if it is safe for me to have a flu injection. Thank you

[AmyS1]

Being vaccinated against flu is very important for people with vasculitis. If in doubt speak to a specialist vasculitis nurse in your clinic or see vasculitis uk website.

[artists in reply to AmyS1]

Thank you l had my first one last year and was really ill , it might have been a coincidence, l might try it again if I’m well .

[amms43]

I have MPA and was recommended to have flu and pneumonia vaccinations. Both are killed vaccines so quite safe however, I agree with AmyS1, best to speak to the specialist nurse.

[GarethG]

Hi, absolutely! It’s one of the most important things you can do if you’re immunosuppressed over the winter season!

[PaulinemcC]

Hi , like everyone else it’s so important to have your flu jab but if you are really concerned you must talk to a health care professional if for nothing else for your own peace of mind .

[Paprika60]

Hi, I too have HUVS and I have very low white cell count. But I haven't had flu vaccine in a few years. I have reacted so badly in the past so I am very hesitant. Instead I am very careful with all my hygiene in contact. I never touch door knobs in public (including doors and etc) with my hands and I am very careful with people in general too. My Vasculitis doctor wouldn't say yes or no when I asked him last year. All he ever says is never to get a live vaccine but he won't commit because he knows I got very ill from it before. That's my story.

But DO please ask your vasculitis nurse or doctor. So far, I haven't caught a cold or flu in a few years ever since my stopped touching things in public. I even wear a mask in tube rides and I don't touch my face when I am out. I stay cautious as I cannot afford not to be. By the way, do you get ill if you take antibiotics too?

[artists in reply to Paprika60]

I will talk to doc tomorrow before my jab . I have not had antibiotics for many years as l developed very severe throat thrush , which took months to clear up . I am still very unsure if my many symptoms are Vasculitus related or not . Thank you for your feedback .

[Paprika60]

Could you kindly let me know what your doctor says? It would be good to have another opinion for me. I have had HUVS for about 18 years and I now realise that many symptoms I didn't know about were part of vasculitis; every individual has different reaction to its effects. I have been in remission from skin hives and joint swelling for 2 years now but instead I have new issues such as never ending fatigue, dizziness and numbness and not reacting well to cold or heat. At this point, I feel all odd symptoms I experience daily are related to vasculitis and having very low immunity in general. Hope you make the right decision. By the way, if you are an artist, do be careful with breathing in turpentine fumes or other paint materials. I am one and have to be extra.

[artists in reply to Paprika60]

Yes l went ahead and had the flu injection ,as it is not live your symptoms sound very like mine l never did put all my symptoms together for years , l feel this is why the doctors have such problems with diagnosis. It is very frustrating realising how much easier l would have coped with this illness if l had had help and not told it was a virus . My stomach gives me a lot of problems, nausea, pain in hands and feet , swollen arms and legs , sore eyes and dreadful headaches . Never mind l know l could be a lot worse and am grateful ,l am mostly ok . yes l am an artist l love it very relaxing . It is encouraging to hear you have had a long remission

[Paprika60]

Thanks for letting me know. I will consider taking it this time. Only 6 months ago I have come to consider that I may also have Sjogren syndrome - the fact that I cannot cry tears made me suspect this. Constant thirst and dry eyes are part of its symptom. Also the daily brain fog episodes; symptoms I didn't have until about 5 years ago. I have discussed this with my doctor and he says very likely...but not much to do about it I guess. Sjogren often accompanies Lupus and HUVS is very much like Lupus. I have read about it on the web and they use Hydroxycholoroquine which I already take daily for my HUVS so not much further it seems.

May I ask you a favour? Could you kindly remember to let me know how you have reacted to the flu jab for the next few days?

Great to find a fellow artist on this blog! Keep going!!! Losing myself to painting helps me escape the pain, depression and keeps me going.

[artists in reply to Paprika60]

Hi paprika60 . I had my flu jab a month ago and have had no ill effects, in fact feeling really well just now .

[Paprika60]

Thank you very much for remembering to get back to me. Glad to hear that you had no ill effects and you are feeling well. I am a bit down due to the wet weather which seems to have bad effect with stiffening my muscle and pain so had to raise my steroids a bit. I just saw my Vasculitis doctor two days ago and addressed this again and he was non committal.

I think he was being honest because he simply doesn't know how I would react due to my extreme sensitive reaction to things. So I just have to stay vigilant without the flu jab this winter and stay well away from crowds and germs which I try to do always anyways!

Take care!!