It’s not been good . . !: I’ve posted a couple of... - LUPUS UK

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It’s not been good . . !

Fennella02 profile image
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I’ve posted a couple of times about the infected bite (insect or sea-living) from my Caribbean holiday some months ago. It has refused to settle despite repeated courses of antibiotics and last week seemed to be getting worse with spreading redness.

Another trip to my GP gave rise to sone extra antibiotics being added to the mix and she mentioned possible referral to the surgeons (this seemed rather a drastic option!) and close follow up. Later that same day, my 14 year old son decided to rugby tackle the sofa and landed a huge kick on my sore leg. The pain was epic and things suddenly got so much worse - the pain, swelling and redness with sky high fever sent me to bed for 2 days. I emerged in time for my rheumy appt feeling very ill and he was absolutely lovely. I was admitted there and then thru A&E for a cocktail of IV antibiotics and was out in time for my scheduled overnight ferry crossing to France.

It’s still oozing muck and yuck despite the antibiotics but generally things are looking better. Back to the GP again on Monday and no more Mycophenolate for the foreseeable future.

I don’t always rate my rheumy but he was ace this time.

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Fennella02
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Lupiknits profile image
Lupiknits

That looks really unpleasant and I hope it heals. Always a joy to hear of a rheumy acting so well

Fennella02 profile image
Fennella02 in reply to Lupiknits

Definitely very unpleasant! You can see part of the black line they drew around the redness but this had been breached within just a couple of hours so it really was galloping along by that time. Having had septicaemia in earlier years that followed on from cellulitis, I have a healthy respect for it.

My rheumy likes plan+action=positive results. I’ve seen that side of him before when he has asked me almost reproachfully if I’m not even a little better as a result of his treatment plan. I often end up reassuring him - even if things aren’t improving!

How are you keeping these days? Thanks for replying xx

in reply to Fennella02

Only just read this - how awful. So glad that rheumy was able to be Action man superhero for you. Hope French stay was good despite all this. My gran died of septicaemia from a needle prick the year before penicillin was invented and I’ve had sepsis twice myself so know just what you mean about respect! Take care please. Xx

Fennella02 profile image
Fennella02

Hi Hidden and thank you. I've just returned from my GP review appt - she was quite shocked to hear/see how bad it has been. Yet more antibiotics, another swab, bloods and special silver dressings to try to encourage drainage. I'm feeling quite well now and I think the infection is largely under control but she isn't taking any chances! I'm to see her again when she returns from her week away and I must confess to feeling reassured that I won't be stopping the drugs in her absence. I'm not sure how long I'll be off the Mycophenolate for - I'll wait and see what the hospital letter says when it arrives in a few days.

I went to see Monet's paintings in the Orangerie museum and then his house, pond and garden in Giverny - if you haven't been there then I totally recommend it. It was teeming with tourists even out of season at 10am so I can't imagine how it would be peak season. The cathedrals at Chartres and Montmartre were spectacular too and very atmospheric.

I haven't properly read your update after Dr Price as wifi and health have been rather poor but I'm interested to hear the outcome.

Speak soon. Clare xx

in reply to Fennella02

Hi again Clare. Just had plugs inserted by ophthalmology so feeling a little exhultant as they seem to be helping already!

Just thinking about your silver dressings is making me feel queasy - had to have this done for badly infected keyhole wound a few years ago - abscess at the base of in my naval required daily dressing changes and four courses of antibiotics for over a month.

It’s strange how things happen to us often that correspond with our worse fears don’t you find? I’ve had infected bites and blood poisoning from infected eczema - but never cellulitis so quite robust about these infections on my limbs. Infections/ abscesses in mouth are a nightmare for me though as a dentally phobic person!

However when I was a young woman I became phobic about my belly and belly button after some nasty eczema caused infection. This continued through all three of my pregnancies - I couldn’t bear to look or apply the betnovate or moisturiser cream even. Had to ask husband! Then this gallbladder surgery had to be done followed by the related sepsis at base of naval wound. Despite all this I still baulk and squirm when doctors want to examine my belly, which unfortunately they seem to do a lot! Usually the scar usually keeps them right about my visible discomfort though! Xx

Fennella02 profile image
Fennella02 in reply to

So you've had the plugs put in? My father has these too although he has struggled to keep them in as the tear ducts seem to have become larger over time. I'm glad you're feeling the benefits.

Before the chemist had managed to order in the silver dressings for me, I knocked an upturned paving slab over on Tuesday and, of all the places it could hit, it just had to knock the bad leg and slice the top off the wound. The pain was astronomical and blood pumped profusely. I now have a completely raw full thickness wound which may turn out to be a blessing as there's nowhere for infection to be trapped but, oh my, it's so darned painful.

My hospital letter arrived yesterday - as inaccurate and badly written as always. I find these brief, sketchy, poor quality letters very frustrating but he mentions his concern about proximity to the bone. He hasn't yet looked at the X-ray which concerns me. It hasn't been reported on either - my GP checked. We're away ATM but I need to pursue that next week. Xxx

in reply to Fennella02

It turns out that my joy over the plugs was very short lived unfortunately. The lovely sensation was due only to all the anaesthetic eye drops and I woke next morning with one sticking half out. Ended up back at eye clinic yesterday only to learn I’d been discharged from ophthalmology back to care of my very part time optician over an hour’s drive away!

All sounds very ugh for you Clare. But I’m surprised at your rheum’s involvement really beyond rushing you directly to A&E? An infected insect bite with ghastly cellulitis is hardly their normal territory i would have thought as it has nothing to do with your Lupus? Or has he been thinking that it has or that the Myco has made you susceptible to the resulting infection perhaps? Which I’m thinking it probably would.

Please put some metal armour around that leg to stop anymore horrible mishaps occurring to the poor wound now!! X

Fennella02 profile image
Fennella02 in reply to

How disappointing about the plug - is it something you can push back in or pull out yourself? I've never quite understood the theory behind the plugs but obviously they do work or they wouldn't keep doing the procedure!

You're right about my rheumy - he is very decisive in clinic and I always hope for a good clinic letter to support whatever we have agreed but they rarely happen. Yes, he did seem to think that the Mycophenolate could be responsible for the extremely long duration of this infection and the letter does mention that the Mycophenolate 'holiday' is only temporary 🙁. He was the one who insisted on looking at my leg under the dressing etc when I saw him. I had mentioned feeling unwell and feverish which probably alerted him to a more serious problem.

I keep wearing cropped trousers as the weather warm and it hurts to have trousers over the infection but of course they don't offer any protection against injury. We're up in the midlands for the next 2 days and it's much cooler so long trouser day today! Not long now until the clocks go back sadly.

Good luck sorting out those plugs. Take good care xx

in reply to Fennella02

Really not liking plugs too much - my eyes feel sore and always have the drops congealing around my eyes so not great for a fair skinned allergic type with Mybomean Gland Dysfunction as look red eyed! Seeing wonder optician next week so may decide to remove them and go back to normal Sicca without going silicone! It works like plugging anything and knock on consequences are the same too ie spillages elsewhere!

I got such a good, comprehensive and clear letter from Dr Price but my clinical letters from nhs have all gone astray - finally found out from indifferent rheum secretary that all been going to old temporary address and the old GP I lodged a formal complaint - who hadn’t the wit to pass them back to hospital saying I was no longer registered it seems?! Talk about laxity on confidential data!!?

Txx

Ps glad your half term holidaying is now restricted to the midlands - hopefully your hubby has learned lesson about dragging you half way across the globe now?!!

in reply to Fennella02

Ps I pushed the plug back in without realising as was half asleep and it was instinctive reaction - then wondered about the hygiene/ Myco/ potential eye infection side of things afterwards!!

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