Allergic disorders in Systemic Lupus -this is an ... - LUPUS UK
Allergic disorders in Systemic Lupus -this is an online publication hopefully all is able to read it
It is done on a small scale research group , felt it could have done on a much larger scale. Seeing here how many of us are allergic to so many things .
Agree more research would really help us🤞
We can be more likely to be affected by drugs and contrasts etc:
healthunlocked.com/lupusuk/....
We can be more likely to react to things in the environment like chemicals, dust allergens because we get flare or ongoing inflammation:
healthunlocked.com/lupusuk/...
Thank you SC 😊,
The other research are very different to this particular one this one is seeing about families and autoimmune. Specifically families with allergies. Coming from a family with loads of allergies both my mum and I (dairy )and my brother also have allergies in drugs he had a nasty anaphylaxis shock with a anti sickness drug that was given to him. Mum , daughter and I have allergies in dairy. both of my daughters were born with dairy allergies but one grew out . She can tolerate some dairy not alot of dairy . As for drugs , we are yet to know as they have not come into contact with them as yet.
This research was based on seeing how allergies are with in families and in auto immune.If you click on each of the individual topics it will bring up the subject base . Which is why it is an online only read . Each subject as a individual topics. It is quite a long read .
Yeh , we are such a weird bunch of people. 😂..gluten was never an issue with me until I had autoimmune condition like SLE then everything changed.
All food changed dietary changed as well going out is difficult we have to think where we can eat and what I can eat it is the most difficult thing with out me getting inflammation and getting diarrhoea.
My error , just noticed it is only an abstract. Of the journal.
I'm having gluten issues for first time.
Also now first time with pollen..at least making my eyes run
I could not get to drill downs so will try again
Thanks
Yes , pollen count currently is very high. Especially when we have been fortunate with the rain we have been having to keep it down. Anti Histamine ?? Any joy?? Have you tried any of them .
Was not sure why only affecting one nostril.
GP but me on penicillin for a week..as bunged up sinuses.
So not really sure why it happened.
Eyes more moist though..some of the time..
Sounds like a cold sinus infection brewing mine was like it only one side my right side then the cough then both sides then my chest all in one day 🥴 it was that quick . I really did not know what hit me.
That is why I was wondering about synchronicity.
Seems lupies can get hit in similar ways as weeks pass..
Need to start a thread to find out how many luppies are ill with chest or getting ill. With some form of illness with this weather changes.
I found this interesting, I’ve had allergic rhinitis for over 40years accompanied by allergic reactions to skin, mostly unidentified. I’ve had asthma for 30 years plus .
For the last 6 years I’ve suffered from autoimmune problems , the classification seems to vary from appointment to appointment. I have symptoms of rheumatoid arthritis, lupus , Sjogrens which is having a field day at present. I suffer from lung fibrosis, treated with Nintendanib . It would be interesting to research this topic later.
Yes , when my hubby found this article he thought it was very interesting too considering how much allergies I have to drugs and food and my girls have to food , then thinking back my mum also have to food and drugs and my brother to drugs as well . So yes ,high allergies in the family history especially dairy.
I've had rhinitis since I was about 10 years old. They removed my adenoids when I was 12/13 in an attempt to improve symptoms, but it made no difference. I ended up taking an antihistamine everyday, which got on top of it after a while. When I've tried to come off it, I just break out in hives and sometimes feel like I can't breathe! I have skin reactions too - some ingredients I've managed to identify, but definitely have a latex allergy (and the shea butter crossover). I have mild asthma, my brother had it more severely as a child, but not so bad now.
Weirder allergies, like cranberries (makes my throat swell!) and more common ones like gluten. Lots of issues with medications, which has made treating depression a nightmare. The worst being Stevens-Johnson syndrome with Lamotrigine, which I did read had some connection to Lupus! I'm a bit in limbo at the moment, diagnostic wise, but looks like possibly Lupus and Sjögrens too.
Are you still on Lamotrigine? I hope you are not because of what it can do to your body.
Nooo, I was only on it for about two weeks and told to stop immediately when they worked out what was going on. I had several lumps on the back of my head and my Mum insisted on taking me to A&E. They counted 20-something swollen glands (no idea if that's right or not really, but that's what the triage nurse told me at the time). I came off it, then had a month of flu-like symptoms and blistering skin. I couldn't open bottles or anything for a while, as my hands were such a mess. I was lucky it didn't get any worse than that. This was around 2007/2008.
Good , glad you came off it because Lamotrigine does that to the body and skin . If you Google- Stevens -johnson Lamotrigine it does pull up loads of information on it . It is one drug that I would not a barge pole . It is one of the few that I will say no if they say you could have it.
I give you an example:
I was under IPass for my spinal assessment they said I had degenerative issue and then told me I had fibromyalgia, I said to my husband straight away I definitely don't have it because I can pin point where my pain is on my spine and where it is radiating down to my legs at that time . They then referred me to a pain consultant (Dr) who suggested massive amount of painkillers options such as opioid, CBD, gabapentine(never have that ) seen what it does to my husband even he will never take it again unless he absolutely needs it.
They were actually offering those would you believe me instead of looking at my MRI properly. CBD would you believe it .
He then said oh NHs don't do nerve issues. So , I said to him flatly I am not having any form of strong sedative drugs as I will not be able to function with my day to day work . I have strong morals with regards CBDs and strong drugs . Eventhough I have worked in the NHS and now retired. There is somethings I have strong voice about .
So I seeked private practice about my MRI this year because my back was getting worse and the pain was getting worse to and I could barely stand for long and walk far and they found a step in alignment of my spine-Spondylolisthesis from my old MRI did they actually read it at all??
Which is why just never except any diagnosis or medication always research them tell them that you will think about it. There is always alternative out there. Always seek second option if there is possibly. If you know in your gut feeling that you know yourself something is not right.
CBD is a daft thing to suggest in that situation. I get annoyed enough at people asking if I've tried mindfulness for depression, but at least that does sort of work for some people.
I was trying Lamotrigine alongside Lithium for depression, as we were running out of options for me to try. I'm very worried about what I'm going to do if the rheumatologist suggests we add in something that will make me gain weight. On the one hand, I can't carry on like this, as I'm barely leaving the house I feel so dreadful. On the other hand, I don't think I can mentally cope with any weight gain from an eating disorder perspective.
Yes, it’s a really interesting area.
I’m allergic to pollen, shellfish and most antibiotics, older son allergic to wasp stings and has an Epipen, and younger son allergic to strawberries. My mum was allergic to oats and strawberries.
I have just started being allergic to antibiotics and fluconazole for thrush. How do you deal with infection as I haven't had a uti yet but that's what sparked my allergic reactions to antibiotic a couple of years ago? It worries me but I do have an appointment pending for an allergy clinic. I haven't found anyone else yet who is now allergic to antibiotic and wasn't before and what steps are taken when you have an infection or operation etc.. My lips swell and get sores as well as my tongue, my eyes swell a bit and then I pee blood on and off and get stinging feeling and feel just awful for about a week. What are your symptoms?
Each antibiotics,I have I come up with different reactions,Amoxicillin/augmentine -i came up with hives -rash.
Cefalexine - I had severe diarrhoea just could not stop being on the loo
Tetracycline - I had vertigo and sickness
Morphine suppositories - itching and slight rash
Fentanyl - rash on my chest and itch on my whole body
Remifentanil - intense pressure to my brain as though my brain was going to explode.
Which for UTi I usually seek alternatives treatment first like cranberry dried like a handful of them and drink loads of them.
They normally help it flushes out the bacteria. I find antibiotics the only one that helps with UTi is Microbid you normally started with a higher dose then down to a lower dose .
I had bladder wash out and then had Microbid for 6 weeks it helped alot since then I went on to gluten free diet then I have not had any issues with it. Until now I have been ill with chest infections 🙄.
Fortunately I can still have other types of. Drugs. But sensitivity to most
I am ok with trimethoprim for a UTI, although it’s years since I had one. Sulfamethoxazole is a big no for lupies. I can’t take penicillins, cephalosporins, ciprofloxacin or nitrofurantoin. When I was in hospital with gallbladder issues I ended up on iv gentamicin. I’ve always been ok on erythromycin. It’s usually rashes with me or GI issues. If you’re in hospital they can test to decide which antibiotic will work against the particular bug you have but it takes a few days.
Sadly it’s a case of trial and error as to which antibiotics you’ll be ok with.
I know and sadly it's usually when it's an emergency, that's why I was hoping the allergy clinic would be soon. I used to take trimethroprim but haven't tried since allergic reactions. Every one I'm trying I'm reacting to so far. I don't know how many of us there are but I've only known one other than us.
Annoying macrobid is one I have tried and I react to. My reaction is the same every time. I get diarrhoea too I just remembered that. I'm hoping I can ask for the anti uti mouth spray treatment as it seems to have good and long lasting results so I may ask the allergy clinic when I finally get an appointment. It's operations and things which I have had a few in recent years that I worry most about without antibiotic there is some danger from infection post op. It's weird how you have different reactions but mine starts with tingling lips after an hour and then I know 'here it comes, a week of pain'. Last time though they gave me steroids but right at the end of the reaction after nearly a week. It worked like magic I think but I'd like to try steroids at the start of a reaction next time. I find antihistamine useless, do you?
I have lip swelling before as though I had a bee sting, which proceeded with hand swelling never took any notice before . I still get the occasional half lip slight swelling but it will be very brief. We still don't know what the cause of it.
Antihistamines only one that worked is ceterizine and nasal spray flixanase - fluconazole ,I think that is how it is spelt
I think this is further complicated by the medical profession using the term 'Allergies' on our medical record.
It might be better if they used the heading 'Adverse reactions' instead.
Not all the bad reactions I get are allergic.
eg Lidocaine caused heart issue.
Gadolinium affected my nerve conduction for first three months and more long term my tendons
Some eye drops cause my tear ducts to get blocked.
Some capsulated tablets cause me reflux
Worst of all some antibiotics affect blood cells. Nitrofurantoin being one of them, but strangely only if I'm having a flare.
None of these are allergies but they prevent me having these things.
They are listed under my 'Allergies' on my medical record, but they are not causing an allergy.
It is an example of the medical profession using a scientific term incorrectly. It us a bit like baby talk, but we are not babies and have had a science education.
This then forces us to use the word incorrectly too.☹️🙄😵💫
'Allergies and other adverse reactions' is what is really meant.🤧
Yup , Abit like gluten with their intolerance and allergies.
Exactly, food intolerances generally have a different mechanism..🤪🫠🤐
(IMPORTANT exception - as we all know - 'Nut allergies' are allergies though)
Wikipedia link defining an 'Allergy'
en.m.wikipedia.org/wiki/All...
We as patients can explain this to the doctors.. Like we do so much else😄🤣
One day the heading might be changed..or have two sections.
I guess it is about weighing up the adverse reaction with any good the drug or procedure may bring about.
For a real allergy,as can be life threatening, this is more clear cut.
But there are many other reasons we may want to stay clear of things.
For us as lupies there seems to be greater likihood of things not going as people expect and adverse reactions becoming evident.
Why?
..maybe our bodies just don't handle lots of things so well for all sorts of reasons.
Linking to another post as has some stats in.
Unfortunately term 'Allergy' is being uses incorrectly again, but we are getting used to that🫣🙄😬:
Hi, KnitSewPurl,
Thanks for the PubMed link.
I've just been listening to a BBC R4 series called "The Immune Mind" by (Dr) Monty Lyman. He explored the strong links between the gut, the brain and the body. I found it fascinating. The research findings tally so absolutely with my symptoms and conditions that learning about it made complete sense.
In your reply to FredaN a few days ago, you allude to "trusting your gut". That turns out to be very sound advice!
I'd recommend listening to this series to all lupies and others in the autoimmune community.
