Allergic to steroids and a large amount of medications

[Karynbrett]

Hello everyone. I have lupus and have developed an allergy to prednisone and methylprednisolone. I am also having crazy allergic reactions to most medications. Anybody else experiencing this?

[happytulip]

May I ask what sort of allergic reaction are you having?

[Karynbrett in reply to happytulip]

Thank you for responding. Body itching and swelling of my lips, itchy eyes, nasal congestion, coughing

[happytulip in reply to Karynbrett]

So sorry to hear that. It's very unusual because steroids are part of the treatment for allergic reactions.

I've heard of it happening once before but that was years ago and can't recall all of the details. But the person I am thinking of was allergic to almost everything in a big way.

I'm sorry I can't be of anymore help.

[Karynbrett in reply to happytulip]

Thank you ........

[Karynbrett in reply to happytulip]

Thank you. Steroids were my last resort. I think I just need the right doctor to figure everything out, but with COVID over here, it’s so hard to get appointments.

[Cann]

I did experience this in 2000 and I have been able to take no drugs at all since. It is on my emergency care summary that I am allergic to all chemicals and medications. I use alternative methods now and have done so for around 20 years. I even have a lot of food allergies, but by knowing them and rotating my food avoiding those that cause allergic reactions, I manage most of the time, though a difficult life. It takes a strong spirit!

[Karynbrett in reply to Cann]

Thank you and good luck to you as well. What can you take for a flare-up ???

[Cann in reply to Karynbrett]

As I can't take anything other than whole food, I tend to rest and go back to a strict vegan diet in a flare-up. I know I have bladder/kidney problems and high protein can set it off. Sometimes I feel I need it, but it often causes a flare-up and I find I can't eat anything but fruit for a while. For me it is all about balancing stress, diet, exercise, getting some vitamin D outside not easy on wet days like this. If I overdo it, I suffer.

Life is not easy!

[miccika1]

Im wondering if you are really allergic to steroids or to some other component that comes in the steroid pill. Maybe there is a form of steroids not in pill form that you could take? it looks like a very rare condition. hope someone else can chime in that also has this.

I suggest you take a detailed test for all the chemicals you might be allergic to so you know exactly what component you are reacting to. I have a friend with many allergies and after extensive testing she finally found out she reacts to a chemical that produces blue color in food and make up. And what she thought is allergy to salt was allergy to iodine...

[Jumper99]

I’ve never been on steroids but have a lot of adverse reactions to drugs, foods, colourings. For example, a lot of antibiotics, diary (actual allergy rather than lactose intolerance) and I even react badly to vitamin D supplements, all of them! I can never understand why they use colourings in our meds, or at least don’t produce some that don’t have colourings in, as this makes us more likely to react to them.

[miccika1 in reply to Jumper99]

Same w my friend she is allergic to a coloring and makes it difficult to know in what products they put it

[Karynbrett in reply to miccika1]

Thank you !!! Every little bit of advice helps!!

[Karynbrett in reply to Jumper99]

Thank you. I wonder if the allergist can test for a dairy allergy .

[Jumper99 in reply to Karynbrett]

I was tested by a doctor in a hospital about 20 years ago. Before they were called allergists, but he might have been called an allergy specialist, I can’t quite remember. It was done by pin prick test on the inside of my wrist. He was actually annoyed that out of the 8 substances he tested, I picked dairy as the one that was itching as he’d just told me it was very unlikely when I told him I thought it was a problem for me.

[1sam]

Have you been to an specialist to have an allergy test? It could be useful to know exactly what are you allergic to.

I have a friend that gets weekly or daily shots to control his many allergies, but he had the test first.

I had multiple allergies (food included) for some years, but it took me time to figure out how to cope. I was using “chemical” sunblockers , those are known to cause allergies, every cream or makeup I would add to my face used to cause a bigger reaction.

It took me some trial and error to find the right clothes soap and fabric softener .... the way I understand is that creams and clothing soap was causing me a “mild” constant allergy, and any little thing added to a bigger one. I took antihistamines daily and kept injectables at home for bad cases.

Talk to your Dr because if you were prescribed with drugs for lupus it is not wise to avoid treatment completely.

[Karynbrett in reply to 1sam]

Thank you !!! I have allergy testing tomorrow. Hopefully they will find something. Very frustrated 😡

[Cann in reply to Karynbrett]

Would be good to know the results of your tests, Karynbrett.

[Jmiller623]

I had a hell of a time when I first started steroids and Plaquenil like it made things worse. I take a boat load of allergy meds - allegra 2x day, montelukast, saline rinse, Flonase, astelin on top of steroid inhaler and albuterol. With all of that, my reactions to meds and foods has quieted quite significantly. Only thing I can’t touch now is rice.

Look at the fillers in your meds. Some have lactose which really throws some people for a loop. But to be reactive to meds is common. I hear a lot of people say they feel allergic to prednisone when it was really their lupus flaring. I feel like some people flare immediately with treatment before they get better in a few weeks.

Maybe ask your physician about trying antihistamines or try a Benadryl with the steroid the next time you take it.

Sorry you’re having such a go of it. Hope you find relief soon. ❤️

[Karynbrett in reply to Jmiller623]

Thank you. I have a bunch of appointments lined up, including allergy testing. I need resolution or some kind of treatment.

[Jmiller623 in reply to Karynbrett]

I hope you find answers and relief soon! Keep us up to date.

[Karynbrett]

In response to everyone else’s response on my post FYI, I was allergy tested and I am in deed allergic to solumedrol, but can take either dexamethasone or solucortef. So I can no longer take prednisone, methylprednisolone, or anything related to solumedrol. The allergist says it is impossible to be allergic to over 20 medications and it is my bodies autoimmune response. I am finding a new Rheumatologist and restarting Xolair injections. If that doesn’t work , they will give me something to bottom out my immune system as I am in constant pain and I need to be able to take pain meds to function.

[LeslieChara]

Hi Karynbrett, I was wondering did you have any shortness of breath or feeling like your throat was swelling closed? I have been tapering off prednisone after being on 60mg a day for a few months now. I'm now at about 20mg per day and have had horrible side effects from it. Skin infections, wounds will not heal, gained so much weight, moonface, swelling extremities, etc. But it seems like not long after taking the prednisone, not every time but most times, my face feels tingly and my throat feels like its swelling and I get short of breath.. I didn't know if that could be allergic reaction or if this is normal, what to do if I should just stop the prednisone or what at this point because I'm just so fed up honestly. Any insight is appreciated very much!