Allergy skin testing / Cutaneous lupus

[Jances13]

I have cutaneous lupus and sjogrens. Had to go to ENT doctor because of have sinus issues for 6 weeks. The ENT feels that it could be allergy related. I was asked if the allergy testing would cause my skin to have a reaction because of cutaneous lupus. I told them I had no clue because I have never been tested . Has anybody ever had to have allergy testing and if you had any problems ? Thank you .

[PMRpro]

I've had allergy testing - though I don't have lupus. They usually introduce a tiny amount of various allergens under the surface of the skin, sometimes on your forearm sometimes your back, and then wait a few days to see if the area goes red. It is very unusual for a skin test to be very big - you would probably have had a big reaction to that substance previously in day to day life and know about it already.

[Jances13 in reply to PMRpro]

Thank you for taking the time to answer my email and the info . 😊

[Lisalou19]

I’ve had a full allergy screen. They used my whole back and top of both arms and I had 111 different substances applied directly to the skin, 8 of these were things I used daily. I had to visit the hospital 2 days in a row then back again after the weekend. The reason this was ordered was because it sometimes feels like I’m having an allergic reaction. I must admit having all these stickers applied was extremely uncomfortable at night time. All test sites come back negative but my god the state of my skin after I was covered in so much bruising and awful red soreness from all the medical tape. I’m glad I had this done as it ruled out my symptoms were due to an allergy x

[Jances13 in reply to Lisalou19]

Sorry you had to go through all this. I can relate to skin issues with tape , my skin is very sensitive. I hope mine won’t be as extensive as yours. But I am glad that they did find out what allergy you have . Thanks for taking the time to email me.

[EOLHPC]

Hello jances - am with PMRpro & lisalou: i tested neg & had no probs with the actual ‘allergen prick’ aspect of this sort of NHS allergy testing (mine was re chronic rhinosinusitis)...but my testing wasn’t as extensive & intensive as lisalou’s so no stickers etc (if i had all those stickers etc, my skin would’ve reacted badly!)

In my 65 years of infant onset systemic lupus & constant immune dysfunction-related rhinosinusitis, i’ve consistently had multisystem hyper-reactions to lots of stuff, but not to standard allergy testing. My skin is highly sensitive, but no one has investigated me for cutaneous lupus. I am, though, also diagnosed with both Hypermobile Ehlers Danlos Syndrome and a type of primary immunodeficiency (hypogammaglobulinaemia) which set up to be this hyper-reactive, amongst other fun & games

I hope your tests go smoothly too...please let is know how you get on 🍀🍀🍀🍀 Coco

[Jances13 in reply to EOLHPC]

Hi Coco , Sorry it took me so long to answer but sometimes life gets into the way. Along with the cutaneous lupus I have sjogrens so my skin is real dry. I went to an ENT and they did a nasal culture which has come back negative and still waiting on the fungus culture and CT of sinuses.They didn’t want to give me more antibiotics as I had already taken 2 and still with the same issue. I am still all congested and coughing. I have tried Allegra, Flonase , sinus rinses and I just don’t know what else to try. And it’s really taking a toll . If everything comes back neg then I will go for the allergy testing. Is it better to go to an allergist or ENT ? What do you take for your rhinosinusitis ?

[EOLHPC in reply to Jances13]

No probs: we all know about life getting in the way!

You’re asking the sort of questions i remember asking myself when i was at my wit’s end due to decades of this...i hope you won’t mind if i offer up this link to the book that helped me most to get my head around this...i now have it on kindle as well as paperback, both from amazon uk...am sure Amazon.com has it:

amazon.co.uk/Harvard-Medica...

I don’t want to scare you by saying how long the medical profession has taken to understand the causes underlying my childhood onset chronic rhrunosinusitis and to figure out how best to treat & manage it...but let’s just say it’s taken a lifetime. A top ENT Immunology consultant recently said to me: you’re a complex patient of 65 with many overlapping immune dysfunction & connective tissue disorders...science has only just begun to understand your illnesses and how to manage them, so it’s not suprising your treatments have been unsuccessful for decades!

Anyway, to answer your question, my combined therapy daily ongoing sinus treatments are:

Twice daily neilmed sinus rinse

My lupus meds (hydroxy + pred + myco)

My immunodeficiency meds (daily antobiotics forever)

My sjogrens cornea inflammation immunosuppression meds (ciclosporin Ikervis eye drops which trickle from my eyes into my nose)

With extra antibiotics & OTC sinus spray (i rely on sudafed) during cold viruses & respiratory infections eg last spring pneumonia caused my sinusitis to flare

You’re on a journey now, seeking to understand the causes underlying your version of this. You & your medics are being detectives...this usually starts with ENT, then allergy testing, then ENT takes another look, meanwhile rheumatology needs to be informed re progress....etc etc...i hope they figure your version of this out faster than they did mine..and I hope something in my reply helps a bit. XOXO

[Jances13 in reply to EOLHPC]

Thank you so much for your kind words. Your words made me take a look at this situation in a different matter and I feel much better. I realized also that we both have some similar issues going on and I am 62 . I also take Plaquenil it has been a life saving drug for me . That ENT immunology consultant is absolutely correct. My daughter also has a connective tissue disorder and they still haven’t figured out on how to treat her.So she has gone organic and eating an anti inflammatory diet and it has helped her quite a bit . She says it’s the foods that we are eating . I will check into the book and hopefully I will find the answers soon. Thank you again and I will keep you posted .

[EOLHPC in reply to Jances13]

You’re totally welcome dear jances...you help me by understanding & encouraging me: just putting this stuff into words means i get a better grip on it! I agree re diet: my consultants think the antiinflammation diet i’ve been on all my life has helped me lots. Please do keep us posted XO

[Jances13]

Hi Coco, went to ENT and the results of CT weren’t good. I have polyploid thickening in left maxillary and chronic thickening and bubbles of the right maxillary. Also opacification of the ethmoids bilaterally , moderate to severe pacification of the right sphenoid and mild on the feet. Soft tissue encasing of the right middle turbinate . Thickening of the right frontal ethmoid. In other words a lot going on. They did another culture because mucous has changed but put me on clindamycin and prescribed steroids but I have to ck with cardiologist because I get a fib. For the steroids. They recommend allergy testing but because I am on a beta blocker they said I couldn’t do it. The beta blocker will interfere if I have to get allergy shots. They also said that the issue is to bring down inflammation so that the polyp will shrink or disappear if it doesn’t they recommend surgery which is not an option for me. They say that allergies cause polyps. So I think that the smart thing to do is to find the cause of all this not have surgery . .I was really mad at their suggestion of surgery when this is my first real issue with all this. I am going to run all this by my cardiologist on Tuesday and see if it is an option to change the beta blocker and I still want to go see an allergist to see what they have to offer. And who knows maybe after antibiotic and steroids this might all go away since this is the first time that I have experienced all this. Sorry this is so long

But I was really overwhelmed with all this. Do you have any suggestions since you have been dealing with issues also. Thanks again .