Has anyone had hives when on HUMIRA?: Hi, I have been... - NRAS

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Has anyone had hives when on HUMIRA?

ladydeerthorpe profile image
34 Replies

Hi, I have been on Humira for 6 months for the treatment of R.A. which has improved

100%. I have now developed severe hives, rash, severe itching etc. has anyone had this

happen and what was the treatment?

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ladydeerthorpe profile image
ladydeerthorpe
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34 Replies
earthwitch profile image
earthwitch

REPORT TO YOUR RHEUMATOLOGIST IMMEDIATELY

Any allergic reaction is potentially serious, and even if you aren't sure what is causing it you really do need to report it immediately, and don't take your next dose until you have advice from rheumatologist or rheumatology nurse. You could also phone NHS24 and ask about immediate treatment - they may want you to see a doctor and get antihistamines or other treatment immediately. If there is any suggestion that your mouth or throat is feeling swollen, then forget that advice and just go straight to emergency.

You could ask about taking MTX as well though - I don't know if it would be too late for that, but I do know some folk take MTX to try and avoid developing allergic reactions to anti-tnfs (though allergic reactions are more likely to the anti-tnfs that are based on mouse proteins, which isn't the case for enbrel and humira).

tthiele profile image
tthiele in reply toearthwitch

Is there a way to test for allergy to Humira? (I am 4 months in to Humira and just started developing hives.)

ladydeerthorpe profile image
ladydeerthorpe

Hi Earthwitch, Thanks for taking the time to share your knowledge.

I am going to phone Rheumy nurse Monday am. It's just general

skin problem so far (not airways). Thanks again.

cathie profile image
cathie

Keep open mind on skin allergies it might be the meds and that's the first thing to rule out, but I've discovered I'm allergic to light + perfume in skin creams. Multi causal

ladydeerthorpe profile image
ladydeerthorpe

Hi Cathie, Thanks for that, but this is so severe I can't help attributing it to the HUMIRA.

Lo-Ran profile image
Lo-Ran in reply toladydeerthorpe

I had a pretty moderate reaction 12 days after mu very first injection. Had to go to the after care clinic to get a steroid shot and a script for some. Very depressing- had high hopes.

Victoria-NRAS profile image
Victoria-NRASPartnerModeratorNRAS

Hi

I hope you managed to get hold of the nurse. It is not uncommon to get a rash when on drugs like Humira, especially if near the injection site, but yours sounds more severe than this so I definitely think you need to check with the nurse before having the next dose, and obviously if it worsens seek more urgent medical help.

While the rash/hives are up it would also probably be worth taking a photo so that if it dies down before you next see the nurse you can show her what it was like.

Hope this gets better soon.

Kind regards

Victoria

(NRAS Helpline)

ladydeerthorpe profile image
ladydeerthorpe

Hi Victoria, The nurse said I could change from 2 weekly injections to 4 weekly, so I will

try that. I wonder how many people are on Humira only for R.A.....I really expected

someone else to have had the same side effects! Thanks for your reply.

nablur profile image
nablur in reply toladydeerthorpe

I guess I sort of have.

ericc profile image
ericc

I have been suffering from Humira related hives for over 6 months now. I was on Humira for around 9 months when I had a severe allergic reaction. My scalp was swelling with hives and I had a bad headache, muscle fatigue, and lethargy. My condition was bad enough I checked into an emergency facility and the determination was made by the emergency staff as well as my rheumatologist that my condition was due to the Humira. I stopped taking the Humira immediately, but the hives have continued and currently nearly effect my entire body. I have seen other blogs on the internet where people have suffered side effect for up to three years after taking the drug. I am not getting much help from the physicians I have seen. Does anybody have any answers?

ladydeerthorpe profile image
ladydeerthorpe in reply toericc

Hi Eric, I am sorry to hear you have had severe hives for so long. I wonder what you are now taking

instead of Humira. Should you be referred to an allergy clinic for tests? Thanks for your reply, my hives

cleared spontaneously.

chv1 profile image
chv1 in reply toericc

I am glad I found this site. Not too good at computers but my husband has severe psoriasis and the Dermatologist put him on Methotrexate for 8 years and you are never supposed to be on it for more than 2. Now my husband has Hepatitis from the Methotrexate. He was put on Humira and after 3 shots of that developed angioedema from the Humira. His whole R. hand and arm up to the elbow is swollen so bad that it was tearing. The pain was excruciating for him. He went to 2 different ERs. One told him ?, another told him gout, a hand and arm specialist told him arthritis and infection and then drew out 30 cc of fluid which was plasma and any Dr. should know that. Then he injected 30cc of steroids just under the skin. So much plasma was building up that it was pushing out the steroids so the Dr. sealed the needle opening and ace bandaged it tightly in hopes it wouldn't swell anymore. What? That cut off his circulation. My husband called and begged the hand and arm specialist to see him again the next day and that is when the surgeon said that he had to do IMMEDIATE surgery. My husband came out with his hand sliced all the way from the knuckle from your middle finger all the way down to half his forearm. It didn't help. The surgeon said he had to scrape "gunk" off of my husband's tendons, nerves, bones, vessels and muscles. I questioned the Dr. and asked how plasma could "gelatinize." The surgeon would not reply which told me right away he was lying. At the very end the surgeon said he scraped my husbands bones and found a ligament tear but did not fix it and did not find anymore arthritis than what you would normally find but he thinks it has to be arthritis. Then he off handidly said it might be from the Humira. I stayed up all night reading all the Humira paperwork. The big 26 page paper booklet goes very in depth and into all the dangers of Humira and that the prescribing Dr. must go over all of this info with the patient before the 1st dose. It didn't happen. It certainly mentions angioedema and I went online and researched everything and printed off proof for the Dr.s for the next day showing that Humira caused "allergic angioedema". I even underlined it in the Humira papers and had it all laid out. Even the meds that were needed to resolve it. The hand surgeon walked out on my husband. He went to the Veteran's Admin clinic and that Dr. said it was the hand and arm surgical Dr.s responsibility. then the nurse to the hand surgeon called the house screaming on the answering machine that they called my husband's GP and he would have to take care of it. So I called my husband and he tried going there and they told him to get lost. He did get an appt. for the next day and the Dr. told him it wasn't angioedema because he didn't have hives. Instead of admitting that he doesn't know what angioedema is and looking it up in his medical manuals he stupidly called Humira and asked if they ever had someone have an allergic reaction to Humira. They said "NO"!!!!! So 4 weeks later and his arm is swelling and it has mattress sutures and interrupted sutures to keep it from tearing more when it should never have been operated on in the first place and the dummies put it in a cast going "problem solved, now it can't swell anymore". No Dr. will take responsibility anymore because they know that a perfectly healthy R. hand and arm was taken from a man in a very stupid way and that it is malpractice at its finest so now they are in cover up mode and my husband is left with sutures left in and a cast and no help. The way to resolve this is through IV steroids. The medication needs to go through the whole body and not just be given locally. Also, antihistimines need to be used. Prescription antihistimines and at therapeutic levels. The blood veins are leaking their plasma and that is what causes the swelling. Please pass this along to all the people on this site and please have them call the Food and Drug Administration themselves and tel the FDA what reactions they are having from Humira and that their Dr.s are not reporting the reactions and most are not even treating their patients or diagnosing it once the patient on Humira presents with swelling, hives, etc. 1-800-FDA-1088. Please pass this on to all the people on this site. Thank you and have a great day.

nablur profile image
nablur in reply tochv1

Omg.

crzycatlady profile image
crzycatlady in reply tochv1

Thank you for this information! I have been dealing with swelling from my elbow to my fingers for months and my doctor can't figure out why; over the weekend I ended up with cellulitis. Part may be my fault because I forgot to tell her that my dermatologist has me on Humira. I hope this is the answer we've all been looking for!

Kimberly11 profile image
Kimberly11

I've developed hives as well. They come within a day of my inj. on humera. My pharmacist says talk to Dr. My Dr. is clueless. I don't know how to get help. I'll be watching this thread:) I use Benadryl and that helps a bit.

ladydeerthorpe profile image
ladydeerthorpe in reply toKimberly11

Hi Kimberly, Just to say I am still on Humira as it works for me. The hives cleared up spontaneously, I wonder it is the body getting used to the new drug. I hope yours clears up soon.

TEEBONE1230 profile image
TEEBONE1230

Hi I have them on both of my upper arms for about three weeks now. no itching .Thats why i am on here. Been on Humira for two mouths now.need answers.

ladydeerthorpe profile image
ladydeerthorpe

Hi, My hives cleared after around 2 months. I wonder if the

body adjusts to the Humira after this time. Hope it soon clears.

LindaEster profile image
LindaEster

Hi, I have RA and have been on Humira and Methotrexate since 2008. I recently started getting a rash here and there for about a year, not knowing what the cause was. March 31, I finally I broke out in the most horrible hives all over my body; my legs, feet, butt, torso, arms, hands, mouth, scalp, ears. Horrible. After ruling out Chicken Pox, I was sent to a dermatologist and stopped taking Humira and Methotrexate on the doctor's orders. My last injection was on April 27, 2015, which made me break out a second time. I have broken out again for the third time this last Sunday, May 17, 2015. the Derm Doc took a biopsy which will take a week to get the results. It's hell. As soon as I get the results I will post.

Hellokitty12 profile image
Hellokitty12 in reply toLindaEster

I've had the Same symptoms and have been on humerus and methotrexate as well. Was there ever a final diagnosis and what alternate meds did u take?

IGAgal profile image
IGAgal

I have been on Humira for 9 years, doing great! I had hives about a month ago but didn't associate it with my shot as I had changed the soap I use in the shower and thought it was that. I took my shot on Wednesday and by Thursday morning I had hives on my back and upper arms, getting more on the front now! Has anyone who has been on Humira for years had a reaction like this? Wouldn't you know my rheumatologist is gone until Monday!

sprngsun profile image
sprngsun in reply toIGAgal

Hi, I have been on humira for ra for 8 years and started getting hives. We are talking everywhere and includes angioedema. Was on benadryl 50 4 x. Day. Now on alllegra 180 2x a day with benadryl for break through. It has been 6 months.

Hello gang,

I was given humira just over ten years ago when it was still somewhat experimental. I was was successfully controlled until just this year . I have had three episode that have landed me in the ED needing high dose steroid , and even pain intervention . My face was swollen so badly my eyes were closed . I had hives head to toe , My face peeled three times and was painfully raw for weeks . I had asked my rheum. MD for access to new meds the summer of 2015 and was told there were not any drugs available that i could benefit from . Of course this was completely wrong...... After my last round of humira usage and another serious reaction and 5 visits to the hospital clinic and er i was told about a new med. Cosentyx or Secukinumab , this is supposed to be a different type of med that is better than Humira at controlling Psoriactic Arthritis and Psorisis. I will be on this med within the next two weeks . No more Humira for me . I hope this information brings hope to someone who is suffering . the half life of Humira is usually 72 days and then it should be out of my body by then . I will post again in about three months for a (hopefully) last entry . I pray for those who have suffered . My condition is now 41 years in the making and has had a major impact on my life . In the early years i just wrapped my self in steroidal cream and plastic and went off to work .once a week losing half my body surface area skin every week . For those who think they cant make it through another day . Stop try these new meds . help is there and new meds are coming out now . dont give up . I almost did . and now I can have a life again . This disease has cost me homes ,jobs marriage . Everthing but my life . I have suffered like you .... I may suffer again .....I will keep trying ..... you do that too !

nablur profile image
nablur in reply toglk10yearhumirauser

I’m so sorry. As I read all these comments it almost sounds like they did something to the formulation as everyone from brand new users to those long term seem to recently be reacting in an allergic fashion-including myself!

J’use added it to my mtx treatment and I had some allergic reaction happen because I woke up the next day with swelling like welts and redness at my injection site. Benadryl seems to have improved the welts but not the pain.

Diagirl profile image
Diagirl

I was on Humira for about 6 months and started having severe hives. I immediately  asked to go off the medication and was advised not to. I did anyway. The hives have lessened tremendously and seem to break out only around my pulse points (wrist and behind ears). My last injection was about 2 months ago. I know this medication has worked for a lot of people but the negative outweighed the positive for me. 

The more I try OTCs the more I like my essential oils. Cure one problem with OTCs and create 5 more

MFerra profile image
MFerra

Just wanted to share my experience with Humira. I have PsA and was on Enbrel for 2 years. For some reason it was not working anymore and my Dr. put me on Humira. I loved it! Much less painful than Enbrel however, after 2 months of taking it, I developed sever hives, swelling of eyes, hands, and mouth. I ended up at the walk-in-clinic twice. My Dr. decided to give Enbrel another shot, do he prescribed it again. After some consideration and the fear of the side effects, I've decided to try another route. I began going to acupuncture. I've only done it twice. I will let you know if it works.

jewel8888 profile image
jewel8888

Hi there, I'm trying to repair. I have PSA and drs added Humira a year ago. This past spring I reacted with hives just after rating shrimp and an injection. My Dr stopped my Humira and a month look later the methotrexate. I felt so dumb when I thought I could just stop eating shrimp and my hives returned with a vengeance when shrimp was cooked in my home. This time I had to go to ER l, received a shot to my muscle, atarax, and inhaler. I'm back on methotrexate and skin is healing, I just can't stand not going in sun anymore. The rash is terrible legs, spine, arms, head its turned into psoriasis. I hope my appt goes well in a few days, I can't take much more. I also have a mysterious lesion found on my lung that was diagnosed at same time. I'm waiting six months to see if it heals, I pray. Best of luck to anyone else out here struggling with this, its quite painful!

Sinc profile image
Sinc

I never had hives before humira. I took humira for a few months and stopped after developing hives. Its been 6 months since my last inj and i still get hives every couple of days. 😔

Peaches6 profile image
Peaches6

I was taking humeria for 3 months then notice hives they later spreaded all over my body...with sever itching...i contacted my RA doctor .not much help there.. I went to quick care...still not much help was given a prescription ointment...that burned my skin...i was also taking methotrexate....i even went to a demotoligist...more ointments.shampoos conditioners and alcohol drops...for my scalp....the methotrexate case me to lose my hair...trying to get help for my R A...now it's been more than 4 months ...i still itch after steroid injection and streiod pills none has worked...my skin Is ugle and discolored the itch is unbearable and I've loss my long healthy hair...im not taking any meds for my RA at this time

dzander5 profile image
dzander5

I did after 6 months, have tried Xeljanz and leflunomide both I had allergy testing for and I am allergic to them as well. Waiting for my skin to settle and hopefully try another biologic. In the meantime, pain management is my only hope!

Best of luck to you!

Nessa28 profile image
Nessa28

I had terrible hives when I started the Humeria . It started around my 3rd injection all around my neck face head arms then spread everywhere,and the itching was horrendous . I saw the pharmacist who had just taken a course on biological drugs and he advised with the doctor anti histamine creams and changed my antihistamine to fexofenadine which I'll have to take continually as I seem to be allergic to everything. But the skin flair ups calmed down and only tends to happen if it something triggers an allergic reaction.

Groovy1 profile image
Groovy1

Hiya. I've been experiencing an outbreak of hives for the past year. At first, i assumed it was an allergy. But the antihistamines don't seem to work. So now I'm thinking it's humira. I've been on humira for 3 years. Doctors don't seem to be much help. Might have to check in with a dermatologist. Maybe you should do the same

KittyJ profile image
KittyJ in reply toGroovy1

Groovy this post is 10 years old so you may not get a reply 😊

Groovy1 profile image
Groovy1 in reply toKittyJ

Sorry I didn't realise. Thanks for the heads up x

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