Constant infection

[Budrick]

I was diagnosed with lupus in 2009, since 2010 I'be been on a low dose antibiotic as I have infection symptoms that if left intreated cause my crp and esr levels to rocket. I've now started to see the infection creep back so think I've become resistant to current antibiotic, a swap reduces inflammation. Has anyone else had this experience as no one has put me through a series of tests to find out what is underlying cause!

[eb1193]

You probably need to be referred to infectious disease. I haven't had a chronic infection, but when my doctors thought I did due to a fever that lasted several months, they had me evaluated by infectious disease. They tested me for mono, lyme, cmv and other infections that can stick around for a while. The fevers were actually autoimmune.

[windless22]

Hi sorry hear that isnt good.im in same position.

Now 1stly are you on any immunosupressive medicines?

Cause i was taken off anything immunosuppressive until my infection had gone.

I found out i got sinus infections alot saw ear nose throat had septoplasty due to severe deviated septum in nose i was hetting blockage in sinus plus low oxygen

But it contiuned then ent reviewed me and saw small narrow channels review of septoplasty plus turbnate refuctions were needed.

As nose sinuses were still getting blocked infected despite steaming rinsing out sinuses neilmed solution.

Now recovering less infections...swelling partly allergy partly lupus cause blockage so ive gor spray reduce that swelling..

My lupus is now lowering immunity.so id ask rheumatologist for review check if infection in sinus..a cat scan reveled mine plus a ent camera up nose first.

So i get what saying my crp esr also go up but only crp when viral which i currently have mild with low grade lupus fevers.

Im starting methotrexate soon...once sinuses less congested..

Do let know how get on.

They asmitted AE kept in till found source infection. Wondering why they didnt do that for you.

[Budrick in reply to windless22]

I find it really difficult to get someone to listen, I'm going to London to see the main lupus guy. I get like you lots of sinus infections and I get a bacteria growth on one hand, always the same place and on my feet. Lots of other symptoms upset stomach etc all which point to bacterial infection. I go on course of antibiotics all clears up. The only way I have kept it at bay this long is by insisting on a low dose antibiotic which I now believe im resistant to. I'm angry and worried now and need to get someone to hear and believe what I'm saying rather than palm me off. I see the consultant 3rd Jan.

Thanks for reply

[Gmonckeberg]

Fever and elevated acute phase reactants (CRP and ESR): lupus flare vs infection ....

That is a big question.

[Barnclown]

Hello budrick

Have you been investigated by immunology yet?

I have infant onset lupus and am 63, but the NHS only began systemic daily oral immunosuppressant meds 6 years ago

My lifetime pattern of signs & symptoms includes "recurring complex persistence pattern multisystem infections" & lymphopenia. Rheumatology referred me to immunology 2 years ago due to hypogammaglobulinaemia G, A, M turning up during a battery of blood tests prior to starting osteoporosis treatment.

So Immunology has been investigating my predisposition to infection for 2 years...last spring the chief consultant told me he believes I've been living with "chronic pockets of bacteria driven sepsis" which combines with my lupus & Sjogrens to cause constantly flaring sinusitis, UTIs + pyelonephritis, and gastritis. He put me on 2 tabs per day of the powerful antibiotic coamoxiclav 625mg indefinitely...which has damped down all these chronic infections....proving his insights correct. If I have breakthrough infections, he says I'll be given intravenous Immunoglobulin G (IVIG).

As I understand it, all this means I am living in the contradictory position of having both a primary autoimmune condition (SLE) and primary Immunodeficiency (previous to immunosuppressant meds).

And I know I'm not alone in having these contradictory overlapping diagnoses: one of my best local lupus friends attends the same rheumatology & immunology clinics as I do for the same sort of combination....and there have been others with similar combos of autoimmunity & Immunodeficiency which are not due to immunosuppressant meds

By the way: none of my consultants want me off my cocktail of daily oral combined therapy immunosuppressant meds, because it is clearly very effectively damping down my SLE & SS related symptomatology & inflammatory process

So, I'm wondering: could you possibly benefit from referral to immunology for investigations?

Hope something in there is useful

Please let us know how things go on Jan 3

🍀🍀🍀🍀 coco

[Budrick in reply to Barnclown]

Thank you very much for this reply, it's so informative for me and great to know I'm not alone and not going mad with what I know is going on in my body!

I have been told my lupus is mild but only by my Ana results which are moderate. I honestly think a lot of my or actually most of my problems are related to these infections and I would not be surprised if my diagnosis was exactly the same as yours.

I am for sure going to push for tests and an answer to this ongoing madness as I have been ill again for the past 4 weeks and it's driving me mad.

Thank you again, your reply gives me hope someone might take action and investigate it properly!

[Barnclown in reply to Budrick]

Courage...I'd nearly lost heart when my 💡immunology referral began to uncover the missing pieces in my causal jigsawpuzzle...your lupus is most likely one of those pieces, and, like me, you'll gradually discover the others.

Am sure you know medics thrive on argument 😉. I've happened to informally discuss my case with several very accomplished senior consultants who declined to comment on my immunology chief's chronic pockets of bacteria driven sepsis theory about my case...how could they argue with any of his theories about me when his treatment has stopped my infections so effectively? Also, I attend immunology & Rheumatology clinics at a world class university teaching hospital....these chaps I was talking in to all seemed in awe of my medics. I figure I'm simply very lucky to have hung on through decades of illness and debilitation to get to this level of "understanding" thanks to several True Detective medics. Am wishing you the same

Take care & please do give us news of your investigations

🍀🍀🍀🍀 coco

[LKVVZ in reply to Budrick]

I suffer infections on a monthly basis. That train is always on time!

Its taking over my life and I have no idea what is happening to my body.

[Budrick in reply to Barnclown]

Hi,

I have a referral to immunology after finding out I have zero antibodies to haemophilus, that's the bacteria antibodies that prevent things like meningitis etc. I am to have a vaccine to see if this raises my antibodies but like you they believe I have an overactive immune system with some parts of it underactive!

I must say I'm scared and it worries me that I will become resistant to antibiotics an infection will end up getting the better of me! Worrying times 😞

[Barnclown in reply to Budrick]

Hello: am glad to have your update

I just read your month ago reply, below: interesting cause my ESR & CRP behave similarly. But my lupus is moderate based on the treatments specified for moderate lupus in the latest revision of the BSR guidelines...here is a link in case you don't know them already:

rheumatology.org.uk/include...

Over my 2 past years iPod immunology investigations, I have consistently had no antibodies to pneumococcus & have produced none in response to both types of pneumonia vacc (prevnar & pneumovac)

On the other hand, I had no haemophilus antibodies, but recently I have produced enough antibodies in response to vacc to be considered adequate

I'm still on daily coamoxiclav 625mg 2xdaily and have had no breakthrough infections. I've simply decided by force of will not to feel anxious about developing resistance...am choosing to enjoy life without any apparent infections for the first time in my 62-3 years. And I've decided to trust immunology's assurances that they'll be able to help me should resistance develop (e.g. With IVIG therapy)

Yes, it is unusual to have both autominuity & immunodeficiency, but I know several other patients like us who are managing these contradictory conditions, as we are

I'm at addenbrookes, a great university hospital. Kings is a great hospital too. I think, so far, we have a certain amount of luck on our side. It's not every patient who is so fortunate as to be under the card of a great immunology dept. Yes, our conditions are worrying. But we are also fortunate. I feel I am, anyway

Has immunology drawn further conclusions in your case? The conclusions drawn re my case are v interesting...my feeling is that these help explain my seronegativity. Are you seroneg? Are any of your immunoglobulins chronically below range? My IgG, A, M are (hypogammaglobulinaemia...which means I qualify for IVIG therapy). Are any of your white blood cells chronically below range? My lymphocytes are (lymphopenia)

Feel free to private message me

Take care...hang in there

🍀😘🍀😘 coco

[Budrick]

Ok everyone I have been to the lupus expert today and he totally agreed with everything I said. That the use of antibiotics and indisputable evidence that this improves my bloods means one thing that I am likely to have an immunology issue. This is obviously worrying because it means as well as an overactive immune system I have an under active one which is very rate apparently. I have to wait a month and a half for the blood results and then if they are positive see an immunology expert at Kings. He wouldn't be drawn on prognosis or treatment and my suspicion is its untreatable apart from antiobiotics to keep infections at bay. But what happens when you become resistant. So much uncertainty and worry but at least the tests are being completed.

I will keep you posted. All I will say is make sure you get a copy of your blood results always. Know what your blood parameters should be for you, not just what the normal parameters are. My Esr is normally 3-5 Crp less than 1 when I was ill Esr had risen to 10 Crp 3 docs said normal but it wasn't normal for me. So I urge you to become your own specialist.

Will keep you informed