Awaiting Results

[MaeBea21]

Hi everyone I am waiting on blood test results (9 vials full 😱) and don’t have a diagnosis yet, but I was wondering if recurrent infections are something others struggle with. I get cold sores, mouth ulcers and currently a really painful stye which has closed my eyelid. I have other autoimmune conditions but don’t think they are attributable to those. Any advice would be gratefully received 😊

[Spanielmadlady]

Hi.if you don't mind me asking what others do you have ? Many Ai illnesses overlap in symptoms and if you have 1 you are more likely to have others.mouth ulcers as well as lupus can be b12 related x

[MaeBea21 in reply to Spanielmadlady]

I had Graves Disease in my 20s and now an under active thyroid (I’m in my 40s). Diabetes is in the family and I have PCOS. I’ve had b12 injections in the past and have vit D deficiency 😳

[Spanielmadlady in reply to MaeBea21]

Under active thyroid can be auto immune and contribute .b12 deficiency anaemia is auto immune .if you've had b12 injections in the past you may need them again.b12 and thyroid are linked.hopefully they will be checking all these for you and you will then have an idea if these are contributory factors as well as possible lupus x

[MusicalFurbaby]

Hi MaeBea, yes, underlying AI disease is correlated with recurrent infections as well as things like Vit D deficiency. I get mouth ulcers too, and a bunch of rashes and other symptoms. Mine is attributable to lupus. I hope the blood results give you, and your doctors, something to work with!

[EOLHPC]

Check & become familiar with your blood test results: especially your white blood cells inc lymphocytes & neutrophils. Also, find out whether your complements & immunoglobulins (IgG,A,M) blood levels have been tested. Deficiencies in all that have been very important in understanding & treating my version of recurring multi-system persistence pattern infections. ❤️🍀 Coco

[MaeBea21 in reply to EOLHPC]

Thanks! There are lots of words there I’ve never heard of but it sounds like you’ve had to learn a good deal to get the support you need. 🙂

[EOLHPC in reply to MaeBea21]

Yes, & at first learning to understand bloods tests, these terms etc can seem WAY beyond our grasp. But if you’re curious about predisposition to infections then the advice you’ve got in the answers from everyone above gives you a really good orientation…next is understanding your blood results

Am guessing you keep a log of your various types of infection (onset, persistence, meds taken, recurrence etc), so the next step is to follow the blood results I’ve mentioned & see if their patterns correlate with your infections in some way - your doctors should be doing this anyway, but sometimes they can be grateful for a bit of help from you

Then once you start taking immunosuppression meds, the blood results & infections you’ve been getting before being affected by immunosuppression meds are valuable as ‘baselines’ compared to future blood test results & infection patterns etc

Our versions of immune dysfunction tend to be very individualised, so we do best to try becoming expert on our own versions of all this. There’s no rush, & we’re all here to support you along the way as you do your best to help your doctors help you feel better. it’s all kinda like learning any skill 😉💞💞💞💞

[Hidden in reply to EOLHPC]

Awesome knowledge!

[MrsMarigold]

Hello MaeBea21. Kind of a cool name! All the advice above is excellent. Wanted to add that styes in your eyes are related to staphylococcal/staph infections. Staph can be very difficult to get rid of. It likes to travel to other body parts. Use perhaps paper towels or Kleenex when you are tending to it and wash your hands after. I’m not sure how styes are treated now but as a child and teenager I had them alot. Best Regards, Titters

[MaeBea21]

Thank you. Heading to the GP shortly as my eye is now closed up - look like I’ve been in a fight. 😂

[MrsMarigold]

Aww. I hope you get good care. I recall the pain🙏🏻

[MaeBea21 in reply to MrsMarigold]

Ended up at a&e!!!

[MrsMarigold]

I’m in your learning lane. I’m American. What is a&e? Emergency? The candy aisle?Is it safe🤷‍♀️😂💕

[MaeBea21 in reply to MrsMarigold]

😂😂

[MrsMarigold]

Dr Google just told me you in emergency Room as we say. Hope they treat you right🙏🏻🦋

[Hidden]

Note my diagnosis is Stills Disease which manifests as RA for me and is an AI disease.I have continuous sore throats which are the classic herald of symptoms for Stills.

I also have interstitial cystitis and lichen sclerosis both associated AI conditions.

I have a red pin prick torso rash which is very sore and itchy and is likely a result of the continuous sore throats.

None of these are considered infections but just things to live with as part of Stills.

Hope this helps and I see other responses packed with great information for you .

I should add that Stills is very rare but has lots of cross over with lupus hence my use of this brilliant site.

[LottieLou96]

Everyone's above advice has been sound as pie! Great advice fellow Lupies.

Core sores reoccur, esp in colder weather when the immune system is lower, and times of stress that can worsen immunity and also with deficiencies etc. Sadly the HSV never truly goes it is either latent or active.

It's true that recurrent infections can be attributed to AI diseases or more commonly from the immunosuppression treatment they are placed on. For me personally; since a young kid my WBC, Neuts, complements have all been a drop in the ocean, which meant I've had alot of strange illnesses like legionnaire's disease, recurrent pneumonia, and sepsis three times.

So yeah in short peeps with AIs commonly have issues with recurrent infections.

Hope they figure things out for you,

Lottie