Immunologist referral

[Nellies47]

Hi everyone.

Sorry a bit long winded.🥺

Recently I have developed reactions to medication. In January I developed rash to my HRT patch that I had been using for 6months, then an allergy to my perfume. In Feb I started on methotrexate for my arthritis but I got really bad nausea that lasted 4 weeks, then my Gynae dr recommended I removed my mirena inserted (sept 2021) as I developed recurring infections, Gynae felt I was rejecting the coil because all bx etc were fine.

Then 3 weeks ago I had ct with contrast and had steroids and antihistamines as cover pre (I had anaphylaxis to contrast when I was 14).

Anyway the day after the scan I was covered in red glow and my face was swollen. Also a slight wheeze. This took a week to fade. The next week I developed a raised itchy rash on my tummy legs and back. The week later and still general itch all over and I'm wheezing and cough.

So after all that , sorry ...my rheumatologist is sending me to immunologist as she feels this could be connected to autoimmune diseases.

My rheumatologist wants to start me on imuran for my joints but wants me to wait until chest settles.

Has anyone had anything like this.

Thank you. Nelly

[AgedCrone]

Not that it will make you feel any better..but in my teens/twenties I had similar allergic reactions after I had anaphylaxis having been given penicillin when I had encephalitis…..after I recovered….with monotonous regularity …some one would tell me my face was bright red/blotchy/swollen etc…but fortunately my breathing was never badly affected & I’m fine now,

I had no RA symptoms at all then & none for 40 odd years ….but when I was eventually diagnosed one of the first things my consultant rheumatologist asked me was did I have any allergies as a young person.

So it could well be that one of the drugs you have taken is the culprit …..I was fortunate that I was in hospital when it happened, so the doctors treating me knew exactly what I had had , and when I had had it ….but I did spend years afterwards having all sorts of sensitivity tests …and apart from the penicillin I literally just grew out of it.But now I can’t take steroids…(or obviously not penicillin) because they have seriously odd affects on my CNS.

But that was a long long time ago and I’m sure immunology has moved on a lot…but as you are finding…it’s a slow old process.

I’m hope your visit with the immunologist brings about a solution.

[Nellies47 in reply to AgedCrone]

Hi.Thanks for that, interesting I had lots of "allergies" before diagnosis of hypothyroidism when I was 14, I had facial and lip swelling and welts on pressure points all over for about 1-2 years....

[AgedCrone in reply to Nellies47]

At one point my allergies food wise were completely out of control …one day I could eat a tomato and have no problems at all …the next day I if I ate one….I would’ve have a rash from under my feet to the top of my head,But as I say…. They just disappeared over time …but I still have the odd occasional one that I find happens ……these days one is drinking out of a plastic glass…… I look as if I’ve had Botox in my lips!

[Nellies47 in reply to AgedCrone]

I know my lips tingel and swell recently. When I was diagnosed with hypothyroidism and was on treatment for about 2 mths the swelling etc stopped. Hope this isn't the start of another autoimmune disease, I have 3....

[AgedCrone in reply to Nellies47]

If it’s any consolation I only have RA….well I do have HayFever..but only for a short time each year!Do allergies run in your family?

I think on my mother’s side we could lay claim to the lot!

[Nellies47 in reply to AgedCrone]

Hi, no nobody else has allergy that I know of.

[Hidden]

Pre Ra I had no allergies. Since diagnosis I have many and suffered anaphylaxis . I too was sent to an immunologist. I get unexplained reactions now and always carry antihistamine tablets and epi pens. Told part of autoimmune diseases ( I have 3) . Have spoken to someone else with RA with the same experience.

[Nellies47 in reply to Hidden]

Thanks for that, makes sence I suppose that our immune systems are on high allert. I have 3 autoimmune dx now, 2 dx in last 18 months

[Deeb1764 in reply to Nellies47]

I have had some really severe reactions too. Including 2 trips to hospital. I had a large scale allergy testing done and the only thing they found was grass which was the same all my life. i just react badly to some of the RA drugs. SO anti histamine every day at the moment.

[Nellies47 in reply to Deeb1764]

Hi thank you. So sorry your having this too. I'm taking antihistamines every day too and they are exacerbating my restless legs, hard to win.Nelly

[medway-lady]

My mum had a reaction to a pain patch and it was found it was not the active ingredient but the glue which had been changed. Changed patch manufacturer and all was well. I have a reaction to its thought Abatercept (Orencia) and developed Discoid Eczema over past few months so giving it a break and hopefully it'll go. These things are so unpredictable ! x

[Nellies47]

OK, sorry to hear your having bother too, it's never-ending. Take care

[Elisee55 in reply to Nellies47]

As for the patch, I used one for pain relief, and yes, it was mainly the glue that bothered me. I used an asthma inhaler to spray a small film of steroid on my skin before I put the patch on (the doctor prescribed it), and voila! No reaction!

[crashdoll]

I’m under immunology and it’s been helpful for them to manage my infections alongside rheum so they can know what to safely prescribe. Good luck, hope it’s helpful for you too.

[Nellies47 in reply to crashdoll]

Hi thank you

[Mmrr]

I've experienced all sorts of rashes, red faces, jelly eyes and mild wheezes throughout my life.Perfumes and household cleaning agents being the biggest culprit. But anything 'smelly' can set me going.

Things have improved since I've been on RA treatment, but occasionally I still need to move seats (or leave) if someone around me is wearing a perfume I'm sensitive too.

[Nellies47 in reply to Mmrr]

Hi, thanks for that. I don't know where to start re allergy sources 🤧. I read your bio, you have been through the wars. I also was delt the depression card and saw a psychiatrist 2 yrs ago who also felt i was not depressed then.However I'm now struggling with my mood , off work with autoimmune symptoms since nov 21(I'm also a nurse, Public health) joints/Fatigue weakness in limbs etc and getting no where with treatment. So I've started antidepressant yesterday 😔...please God it will help me cope with the massive change in my quality of life.

I walk (well struggling to walk, i use to run) and meditate and have a gratitude journal all to try lift my self out of this. Started counselling too, all these have been a help and I'll keep them going but I'm still struggling with my mood so I've given in to the antidepressant...I hate having to take any more meds especially when I need to start my imuran soon.

I hope your doing OK.

Thanks again for the reply. Nelly

[Mmrr in reply to Nellies47]

I hope the meds help 💐

[Nellies47 in reply to Mmrr]

Thank you🌷

[Orla5 in reply to Nellies47]

I’ve had two bouts of cancer, 13 years of fatigue. Now 7 years of Seropositive RA. I’m combining a lower carb intake and experimenting with cold water therapy, starting with a hot shower then turning dial down gradually to cold - hate the cold it’s always been my greatest enemy - and following a Wim Hof breathing technique has helped lift my energy level, mood and pain level. I have also tried improving my Colon microbiome . This is what I call my alternative healing approach to my RA combining the above with my RA drug and it’s side effects. This routine is helping me to cope presently with the disease and side effects.

[Ern007]

Probably your rash after scan with contrast was caused by iodine - If another contrast was used - The same,

[Nellies47 in reply to Ern007]

Yes I think the contrast has triggered something, cause its 3.5 weeks since scan and I'm still itchy and wheezing/cough.

[RAexperiences]

My goodness that sounds awful. When diagnosed with RA i told my rhumi there was no way I could have another autoimmune disease (anaphylaxis to bees, hashimotos thyroiditis, granuloma annulare) but she said said it’s possible to keep getting more. Not t what any of us wish to hear. I really hope you can get the answers and help you need!

[Nellies47 in reply to RAexperiences]

Thank you, I know it's awful to think there could be more, but I can't let myself think about it. I just feel that since Sept 21 I have one thing after another, it's soul destroying.

[RAexperiences]

No doubt. I am so sorry this is such a struggle for you.

[Nellies47 in reply to RAexperiences]

Thank you, hopeyour doing OK.

[MissMinto]

There are many possible causes, which hopefully the immunologist will be able to sort out, but meanwhile have a look at this:healthline.com/health/mast-...

[medway-lady]

I take Azathyoprine (Imuran) its fine for me. Works well with no side effects. I've a really awful cold (not covid) so not up to posting more today.