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Recurrent pneumonia - If you have an auto immune disease, do you get bad reactions to normal bugs?

(16 Posts)
lucretiab Wed 29-Jul-15 12:00:32

This is so difficult to describe but it's getting a bit worrying. .
I'm in the middle of investigations for auto immune problems, reasonably high ana results but more importantly steadily increasing.
I've had a very odd episode 1-2 times a year for last 5 years but this year it's 5 times in 7 months already.
So, at the first sign of any slight illness I get itching, head to foot, everywhere except soles of feet and palms of hands. This lasts 2-3 days and the only thing that brings it down is steroids. Around day 3 my chest tightens - so much so that my gp says it's like asthma. I've been tested, it's not asthma. Two different puffers haven't been enough to stop me getting pneumonia. I'm just battling my third bout in 5 months.

My question therefore is does this ring any bells? I'm back at the Rheumatologist tomorrow so at least he can see the trouble I'm in. So far has only been interested in joints, dry mouth etc and taken no notice of these symptoms.

I bet no one can help-it's so weird. .. But I'm starting to get scared. This week I've required oxygen at the gp surgery, and ended up in a&e 2 days later.


Cocolepew Wed 29-Jul-15 12:15:20

I posted on the other thread you are on too.
It coukd be pleurisy you are getting, I get it caused by inflammation.
You should get the pneumonia and flu injection.

Have they said which auto immune disease they suspect?

lucretiab Wed 29-Jul-15 12:23:20

I guess I have such a few days where I feel truly well, I'm worried about getting the shot whilst I'm brewing something. Thanks, I'll ask the Rheumatologist.

lucretiab Wed 29-Jul-15 12:27:31

Sorry, didn't finish - we're looking at Sjogren's? Lupus markers have come back neg ..
It's def a patch in the lung it's self, I had an x ray last night. . Although they said it was tiny compared to the symptoms this time.
Unbelievably helpful just to know it means something to someone!

Cocolepew Wed 29-Jul-15 12:30:17

My Lupus was diagnosed through symptoms, my bloods are always clear.
I have secondary Sjogren's but its the Lupus which causes most of my problems.
Good luck at the rheumy smile

lucretiab Thu 30-Jul-15 01:25:19

So just to update if you come back, went to the lovely lovely rheumy and he is treating symptoms because clearly there is an"autoimmune disturbance" (like his expression), so have a script for Plaquenil (sp?).. But he says it can take weeks and weeks to work. Also he agreed a flu shot is generally a good idea but we're nearly into spring here and it hasn't been particularly effective this year, so not to bother.
Thank you so much for the comments yesterday, I was raving to dh about what a difference it made having someone know what I was talking

SunbathingCat Thu 30-Jul-15 01:53:09

Message withdrawn at poster's request.

lucretiab Thu 30-Jul-15 02:06:44

Ooh, hello! I've been taking the pred for 4-5 days at a time every time I have a flare up and it is effective. . But given that I already have bone density problems, and my symptoms are still relatively minor day to day.. He's suggesting we just try this first. Also the fact the it immediately goes to a difficult-to-resolve pneumonia every time. . He says steroids can stop your body dealing with infection easily? I still have the tablets, so they're to hand. I am going back to the gp for a plan of what to do when the itching starts in the hope that I can bypass the rest of the downward spiral.
Have you had any side effects? What were your symptoms that were helped by the Hydroxy?
It's utterly amazing how different I feel just having a good doctor with a plan. . After 5 years of ignoring all of this (well apart from internally freaking out of course). Still feel crappy, but happy!

Cocolepew Thu 30-Jul-15 08:02:49

I HATE taking Pred. I can't sleep on ut, I pile weight on, I get the shakes, hate it!

Plaquenil can take months to work but mine worked pretty quickly. The main sympton it helped was the crushing fatigue. I was constantly falling into a really deep sleep for hours. A marching band could have went past me and I'd still stay asleep.

Could you get an anti histamine for the itching?
Glad your rheumy is lovely, mines an asshole grin

lucretiab Thu 30-Jul-15 08:51:49

I think it helps that he's private - private health is positively encouraged here, and I've already spent so much on healthcare this year he's actually mostly paid for by the government (serious political issues I think, but those go out the window when you're trying to get a health issue sorted...), it's amazing how jolly they are when it's all billable. grin

Something that stops me needing to have a nap every day and 3-4 hours every Saturday and Sunday... that would be good. And the achey-ness/joints.

Anyway, I take antihistamines and it's a poor second unfortunately.

Cheers m'dear!

SunbathingCat Thu 30-Jul-15 12:11:54

Message withdrawn at poster's request.

ihearttc Thu 30-Jul-15 12:54:35

Ive just been put on Hyroxychloroquine as well. I started taking it on wednesday and so far so side effects at all (touch wood).

My Rheumatologist is convinced its RA (Seronegative RA) despite all my bloods being ok but a lot of my symptoms to me point to Lupus as well. They wanted me on Methotrexate and Hydrochloroquine but Ive asked to try this first. Ive also had a Steroid Injection as Prednisolone doesn't agree with me either-apart from having a couple of days going hot and cold constantly the steroid injection has been fantastic.

lucretiab Thu 30-Jul-15 15:08:44

Mm.. Can I fish for a bit more info? Do you do exercise any of you? I joined a gym last month but have been unwell almost ever since .. wondering whether to just forget it for a while? Also do you have particular reactions to make up etc, I've just been following the"you need 8 products to clean you skin" type threads in style and beauty but am now a little nervous about my four lovely new bottles of stuff :-)

Thanks so much for the insights, I feel so much beret for your insights.

Cocolepew Thu 30-Jul-15 15:16:22

I dont exercise in a gym etc. Im not well enough for anything other than walking or swiming.
You need to be careful to pace yourself. Somedays you'll feel ok but then over do it and crash. Obviously each case is individual, its just a case of trail and error.
Ive become highly allergic in the last few years, Im 46 and have been dying my hair dark since I was 14, now I can only stand bleach, because it doesn't touch the roots or scalp. I have my hair very short because of the thinning . I stick to the same make up brands.

SunbathingCat Thu 30-Jul-15 18:11:50

Message withdrawn at poster's request.

lucretiab Fri 31-Jul-15 04:15:13

Thanks ladies hmm girls? Women? ? Lovely mnetters - ah yes that's better. .

Turned out although my infection is definitely on the decline my lungs had again completely seized up by this morning so back on pred for 5 days. Love breathing, it's awesome! Maybe by tomorrow I'll feel like washing my face grin

And happy to cancel gym. . Although maybe I should think about walking there. . Is impossible to walk outside here without getting too much sun. .

I've just realised your descriptions remind me exactly of my symptoms as a teenager - diagnosed with ME. That was a long 5 years. I wonder if there's a connection.

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