Two Causes of Rheumatoid Arthritis Site Reactions
2 kinds of site reactions
It’s been a week of site reactions. There were lots of positive reactions to the new blog site. After a few days, I realized that I was receiving two distinct flavors of responses.There have been those who were encouraging: “Nice article”; Good writing”; and “Well done!” I am so grateful.
Then there were the reactions that came from those suffering with RA or another chronic illness. In some way, I think they heard my voice differently – like we are speaking the same language. They said things like: “This is so hopeful!” and “Wow, can we pray for each other?” and “Thank you, Kelly. It’s ok to say I hurt.”
Everyone was positive (Yeah!!) and everyone was sincere (I think!)
What I detected may be a symptom of the detachment which exists between the world of Rheumatoid Arthritis and the non-RA world. I have read hundreds of pages of RA blogs and forums and message boards over the last three years and at least as many times as I read, “It hurts,” I also read “No one gets it!”
I want to build a bridge. This blog is my first baby step. I’m not even sure about what causes Rheumatoid Arthritis walls yet, but I commit to working to disassemble the partition. Please join me in tearing down the wall between RA’ers and non-RA’ers. That brings me to my second “site reaction” that I observed this week.
Normally, I would never share this with anyone (except privately with other RA’ers). But, here goes. I have been really suffering with an injection site reaction (ISR) to the Enbrel. It’s like a huge 4” bee sting on my leg. It’s hot and hard and itchy – it hurts. When I lie down, it feels like there’s a rock under me. This is the third ISR in a row, and each one is worse, and appears sooner after the injection.
It is amazing how much this ISR is like a bee sting. I wanted to post a picture of my leg, but it’s pretty bad. So, I decided to look for a pretty picture of a bee…
Maybe he can also inspire us to be like carriers of understanding the way he goes about spreading around the pollen. We can touch others lives like the bee, letting something also rub off on us like the bee. I am thankful for the way that others rub off on me and I hope that I can write things that will be penetrating – hopefully without all the itching, though.
Recommended reading:
- 5 Ways We Can Spread Awareness of Rheumatoid Arthritis
- My RA Methotrexate / Enbrel Test: How Well Do Methotrexate & Enbrel Work on Symptoms of Rheumatoid Arthritis?
- How Rheumatoid Arthritis Impacts Lives
Kelly, your writing is inspiring. I’m sorry you are having ISRs to the Enbrel. It has worked pretty well for me when I can stay on it long enough to do some good (I keep getting colds/infections or having surgery).
What you are doing with your blog is great. I have a supportive family, but they get tired of me hurting and feeling so fatigued. Sometimes I try to hide it but you can’t. Thanks for letting everyone know that all of us with RA hurt and we can’t help it.
I also had reactions, it helped me to take an alegery med. shortly before the injection.
nice article, and well done.
D
J
Some suggestions from 4 year vet of Enbrel:
Almost everyone I know says there is less reaction in the stomach site (and it hurts less)
Do you ice a LOT before the injection? I do, its feels almost hard/cold before I try it. I have sureclick, btw.
I think the doctors expect up to 2 months you will have problems, over that they start to pay attention to your reactions and may decide to switch you to something else. (or if its severe reaction) Im sure you’ve heard up to half of us will suffer this way.
My injections now are uneventful. No swelling, no redness. Sometimes a bruise, but most times I cant see where I injected.
Also, some people take Benedryl half an hour before the injection, or some other similar drug.
One more thing, would like to see pic of your leg!!! Seeing a picture is extremely helpful to newbies! I wish I had done these things.
I wish I had taken a picture if it. I chickened out. It was really huge. :shout:
RT Blog Post: Two Causes of Rheumatoid Arthritis Site Reactions http://bit.ly/8mQKSB
from someone who can pass out at the sight of a needle – by BFF who has Ra has been injecting Humira for a couple of yrs – when I started – she highly recommended my stomach and ICE ICE ICE so I freeze the spot for about 10 min before then after inject ice imidiately after and giggle the site leaving on the ice pack for another 10 min- I dont feel anything – thumbs up for that. though the first time thought I would pass out from the anxiety, LOL.
I have been taking Humira for about three months and only started getting the injection site reactions the last two times. I’ve had two now, and even though they are gone by the third day, they are huge welts, itchy, swollen, red, raised, and get larger over time. One was even bruised pretty badly. I have been injecting in my leg – I’m kind of freaked out about the thought of injecting near my abdomen – not sure how deeply the needle goes!? I have some fat on my abdomen, but not a lot. I will try the Benedryl. I’ll let you know if it helps me. Thanks for the forum.
Margo,
Make sure you keep your doctor informed about the ISR’s.
Lots of people find the Benedryl helps. My ISR’s did eventually get better and almost went away. My leg was just a little sore. Good luck!
Thanks for your words of encouragement, Kelly. Yes, I have told my doctor about this and he said that about 15% of patients have these reactions. He said that I should not have to discontinue the injections as long as the reactions are “tolerable.” My next injection is slated for next week – I’ll let you know if the Benedryl helps. It is encouraging to me to read that your reactions almost went away with time. I was afraid that they might just get worse each time. I wasn’t sure what to expect. Thanks again for your input.
Margo I posted a comment below about my experience with Humira before I read yours. When you inject you should go in at 45 degs. (i used regular needle not pen) so depth should not be a issue and Humira hurts a lot less in the abdomen. I had to stop because of the welts and my doc told me that now that they started they probably wouldn’t stop. Of course I was on it 3 years (if memory serves) before I got the welts. Good luck.
I forgot to add that my welts were about 2 in by 1 in. due to the 45 deg needle insertion. More than bee stings so it may not be the same thing.
Just a quick follow up… I have used the Benedryl for my last three injections and it seems that each time, it is helping more. My last injection was just last night, and I still have not had any inflammation, itching, or soreness at the injection site. I did take it about an hour before the injection last night. This is quite remarkable to me! Thanks again.
Thanks, Margo. Good luck!
Hi Kelly, going through your archives. I started getting site reactions about the 6th week after starting the Enbrel. By the ninth week it was the size of my hand and at the same time the backs of my hands exploded with red itchiness. Dermatologist visit and call to Rheumy and the Enbrel was stopped. Doctor put me back on Methotrexate and is hoping when I try another biologic that it will help not to build antibodies to any new medication. I was feeling so much better with the Enbrel, other than trying to itch my hands off boiling them under hot water was bliss.
The site reaction is a very different thing to the rash, they may not be related (many people experience site reaction but you are the first to mention the rash that I have seen). I got the rash too, it was sun sensitive and was everywhere exposed to the sun so face, neck, hands, legs for me.
I also swelled up and had blisters with the rash so it was a full on allergic reaction. I took photos and showed my rheumy and knew it was bad when he pulled a face. He is very measured and calm and sees so many patients that any reaction means something 😉
I am now on Humira and I only get site reactions now, not the rash. It does indeed hurt like a sting.
I still have stains from my first few injections of Humira in my thighs but none in my belly, well a bruise from the last time which means I’m probably going to have to try for my thigh again.
The stains from Enbrel have finally gone.
That said aside from the rash nothing has been as bad as my reaction to iron injections: tissue loss from those. Sigh. Took a few months for it to happen too or I’d have stopped after the first two. RA patients need to be careful with those too.
I agree with Michaela that rashes are different from ISR. Also ISR are “normal” but should still be watched while “rashes” or in my case after a couple of months “hives” can be a sign of actually becoming “allergic” to the drug / some ingredient.
I was diagnosed with undifferentiated inflammatory disease (serum negative) in 2002 in NY state and was eventually put on Humira around 2005. It worked great and I was taking the shot weekly. When I moved to the Dallas area in 2007 my new rheum. diagnosed me as polyarthritic. He said I had RA but there is something else going on too. In 2008 I started getting large welts from my injections. I injected into my abdomen to reduce the burning and the welts lasted 2-3 weeks. So I would have 3-4 welts at varying stages of itchiness and redness and flaking at all times around my navel (not pretty). Finally the doc decided I was allergic to the preservative in the Humira and switched me to Orencia. Nothing is easy because my body developed a reaction to that. Now I’m on Simponi. No injection site issue but it isn’t working as well. Just moved again so as soon as I find a new rheum we will see what happens.
I AM ON HUMIRA INJECTIONS AND I GET THE SAME REACTION A HUGE ITCHY LUMP ON MY LEG !!!
I had injection site reactions week 4 through 8. Then I started icing the site before (30 minutes) and after (several hours). Now I rarely have any reaction other than a bruise from the giant sized needle they use in those clickpens. If you haven’t tried icing the site you might consider doing it next time. That is what my doc recommended and it does seem to work. Either that or my body just finally got used to the drug.
I have been getting injection site reactions of varying degrees of severity with Enbrel. I have had six injections so far. The reactions range from a mildly annoying red welt, about 1″ by 1 1/2″ to a huge red, raised itchy welt at least 3″ by 3″
I have very fair, sensitive skin, and I have found the actual site makes a huge difference, my stomach reacts the worse, whereas my thigh shows the least reaction.
Additionally, it doesn’t seem to matter Sure-Click versus pre-filled syringe as far as the reaction, but a trick my rheum told me is to NOT inject at 45 degrees with the syringe. I was having a “bubbling up” effect with the syringe (which I prefer to use), and his rationalization for a 90 degree injection is both the types of injectors use the same needle and the Sureclick injects at 90 degrees, so why not use the syringe the same way.
Last injection in the thigh went very well, so here’s hoping! I am trying to stick with Enbrel as long as I can, as it is the 2nd biological I’ve tried.
If you continue to have intense reactions, as your doctor about a possible “Toxoid Reaction”…
Keep us the great work with the Blog. It’s nice to have a community of people who I can relate to and who can relate to what I am going through.
Love this blog, i do feel we need a bridge to help our non-RAers to be more aware of what we go thru, alos, for us to realize what our love ones goes thru from having to live with someone with RA. I’ve experienced very few injection sites effects thru the years. Thanks for this post.
Had a similar reaction to Humira and got progressively worse each time. Now considered allergic to it. Had to stop.