First "normal " illness since diagnosis? - Vasculitis UK

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First "normal " illness since diagnosis?

babssara profile image
6 Replies

Hi everyone. As I'm a newbie I would like your opinions please.

Not had my first rheumy appt yet (this Friday) but diagnosis confirmed by private rheumy 3 months ago. On pred 60mg.

For the past 2 weeks I have been on and off flaring constantly and feeling pretty low. Just finished 5th course of a/bs for "chest infection". Sunday was my first day of feeling able to get going. Sunday night didn't sleep and felt really, really unwell, thought I was dying. Not pain as much just general ill feeling. Breathing was horrendous (which is not helped by having cracked ribs through coughing). Monday spoke to GP who arranged for whole battery of bts. Not had results back yet.

Yesterday and today I have slept pretty constantly, but runny nose, "normal" headache, aching limbs, and running a high temp. I don't feel ill,ill like I did yesterday but more like I would expect flu to be (never having had flu before cannot make the comparison).

What I would like to know is - is this a cold that is more severe because of the illness? Do common illnesses tend to be harder and are they more difficult to get rid of? I'm not scared anymore as my breathing has really eased just tired, achey, sweaty. Do I just rest and let it take its course.

I'm sure you will be able to reassure me.

Take care. Babs x

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babssara profile image
babssara
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6 Replies
PMRpro profile image
PMRpro

Probably to almost all of your questions. It depends on the person, some people find it difficult to shake off "normal" coughs and colds, others don't. You are on a high dose of pred so some of the illness may not be obvious - inflammation in a chest infection for example will have been damped by that dose.

I'd say be watchful - if at any time you feel worse overnight or have difficulty breathing dial 999. They don't mind proper poorly people at all even if it is a false alarm.

Katie18 profile image
Katie18

I have CHurg Strauss Syndrome and find normal illnesses such as colds and infections affect me much worse than they used to do and take longer to get over. I also usually end up on antibiotics. I have learnt to be patient and for example that it will take 2 weeks to get over a cold at least. You need to watch your symptoms carefully - if you feel be getting better that's fine , but if you start to feel worse then go back to the doctors. My flares have actually been triggered by flu like illnesses but I don't want to panic you as on other occasions I have got over illness just with antibiotics or even without - just takes a bit longer. Hope you're feeling better soon

babssara profile image
babssara in reply to Katie18

Hi Katie18, thanks for the advice much appreciated. I think I already knew this to be the case just needed reassurance before I bothered GP yet again. I feel a little better today, temp seems to have stopped spiking with paracetamol, but still drained. Keep well. Babs x

AndrewT profile image
AndrewT

Dear babs1953,

I agree with all the advice, given above, and re-iterate that you are NOT being a nuisance if/when you need to call the 'Emergency Services'. Please, please don't be afraid to do so, even at 3am-on Sunday=at Christmas~when they are on strike (you get the idea).

Do you have, to hand, details of your condition? If not do get, or produce, this information. I have 'To Whom It May Concern' sheet, listing all my medication, diagnosis, consultants, and so forth. I find that if you hand this information over, to any 'new' Doctors Consultants they always find it very helpful/useful.

Anyway best wishes babs.

AndrewT

babssara profile image
babssara in reply to AndrewT

Hi Andrew. By signing up to quite a few HU forms since diagnosis, I have asked, and been offered amazing advice, tips, support which provided me with the foresight to get all this info together for when I saw Rhuemy on Friday. She was extremely impressed with the chronological information and test results, hospital letters and treatments, both current and past. She said it had made her job so much easier. After thorough physical, historical symptoms and current symptoms, and outcomes she was able to identify what is needed urgently so that I can be started on appropriate medsssss and management plan.

Keep well.

Babs x

babssara profile image
babssara in reply to AndrewT

Dear Andrew T, I really really appreciate your advice and comments, all of which I have taken on board and put in hand.

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