Actemra injection skin reaction

[HappyDiamonds]

A couple of weeks ago I asked if anyone had the skin reaction to weekly Actemra injections because I was getting a large itchy red rash right across my thigh that lasted about 4 days. Its a very common reaction apparently. I was advised to take an antihistamine (Loratadine) but wasn't happy with that so I tried Anthisan cream (Boots or Amazon) and it work like a miracle. I inject before bed, apply a little cream next morning and problem totally solved. Just thought this might help someone else.

[PMRpro Ambassador]

Have you tried different times for the jab? Does it make a difference?

[HappyDiamonds in reply to PMRpro]

Yes I did and it didn't make a difference. The reaction didn't start until about 6/8 weeks after I started using the injections. Then it would appear as just a small circle but progressed to a much larger area that itched like mad especially if it was warm. It would fade away just in time for the next injection in other thigh. I injected before bed and the rash would be there when I got up. I now use the cream in the morning after injecting and it stops it in its tracks, the tablets just reduced itching. I also tried without using the wipe first but that didn't make any difference. Problem solved for me but it might help someone else to know. Hope Actemra help you.

[PMRpro Ambassador in reply to HappyDiamonds]

Wondered about other potential side effects - fatigue and so on.

[HappyDiamonds in reply to PMRpro]

I find the next day Im usually very tired and lack energy (what's new?) which is why I decided to take it at night. I also chose the right day when I have less on. Its been very very good for me and I would say its given me more energy and Im able to do more the other 6 days. Reducing to 6mg Pred very soon so I may feel a difference in fatigue then. Rheumy has kept me on the same slow taper as I would have been on without Actemra and not rushed things. Assume when I get to 5mg it will be even slower.

[PMRpro Ambassador in reply to HappyDiamonds]

After the last 3 months I can't tell if it is worse!!! I happened to start on a Wednesday - not ideal if there are effects but that was when I was there and the fait accompli was served up! Didn't have to wait for it to be delivered, just fetched it from the pharmacy together with the coolbag stuff.

[Sophiestree in reply to PMRpro]

Mine started on a Wednesday too and each week i just delayed it by a day until I got to Sunday. I felt really tired the first few weeks but that went. I do think it takes a couple of months at least to kick in but I have been pleased with my taper since, even if my consultant isn't!!

[jarn in reply to PMRpro]

Have you tried injecting into the fatty tissue of stomach? I do have a skin condition from Actemera but it is colourless and simply patches of rough skin, across top of shoulders and beind knees. Strange but not itchy. Just rough to the touch. Initially injected into thigh and that caused irritation. My muffin top works well!

[PMRpro Ambassador in reply to jarn]

That's where they tell you to do it here - had plenty of practice with heparin jabs there. I think it is probably easier with the prefilled syringes than the thigh to be honest. The epipen is probably much the same whichever.

[HappyDiamonds in reply to PMRpro]

I was recommended to use alternate thighs, the Nurse very kindly said it would be easier to see 🤣😂😀. I can't imagine what she meant!!!!!!

[PMRpro Ambassador in reply to HappyDiamonds]

Wonder if she's ever tried self-injection! The little pre-filled syringes with heparin are a doddle in comparison.

[Sharitone in reply to HappyDiamonds]

My rheumy nurse told me people usually prefer the thigh if it's an epipen, and the tummy if it's a pre-filled syringe (more soft tissue to plunge the needle through!)

[HappyDiamonds]

You can change the day, I did when I realised I was lethargic afterwards for a day. I was also told although its working from day 1 it can take 3 months to feel any benefit especially if its for RA. Im positive Im feeling better. Its 2 years this month I was diagnosed with GCA and started at 60mg. This month is also 6 months from my Zolendronic acid infusion so that's now fully working, my fractures have healed and last week the physio worked on me and I feel a huge benefit. Start weekly physio next week for muscle wastage. Started dieting yesterday instead of playing around, new eyes soon. Life is good 😀 and I sincerely wish the same for you.

[PMRpro Ambassador in reply to HappyDiamonds]

That all sounds very positive! Christian said a few weeks at least and not to try to taper until I thought I could feel it working. I have a physio screening appointment tomorrow - at last! Then I will have to wait again. My back problem feels better - but I think there is a trochanteric pain syndrome in the left hip starting up - really can't walk far and that is so frustrating. Probably walked too far the other day - plus it is early April weather instead of May!!!! Always kills me when it rains! Luckily it doesn't do it often here.

[PMR2011]

A couple months after starting injections I would get an itchy hive at injection site which disappeared over the next day. That lasted a few months. No hives now.I did the same to move my injections to Friday evening (shifted it one day a week). That gave me Saturday as a day to rest. I was working full time then so it worked out well. Doesn’t matter so much now. Am currently injecting every 10 days and hope to shift to every 2 weeks soon. It’s my second time on Actemra after 4 blissful months off all meds! Then got covid and flared.

[HappyDiamonds in reply to PMR2011]

Hope Actemra works for you again so that you can get of all meds. Covid really is a curse.

[PMR2011]

Thank you. Tho if not Covid would probably be something else! After 6 yrs PMR got large vessel GCA. After 4 years GCA treatment, thought was in remission, now in treatment again! The good news is my disease and I have become old friends and know each other well. The bad news is I fear we may now be friends for life!

[scottygirl73]

When ifirst started infusion of Actemra i had horrible itch even in mouth,they gave me injection of antihistamine before infusion worked a treat,hoping when i start infusion on 24th May again i won't need antihistamine.xx

[Dressage_Diva]

Thanks for sharing that, I’ve been experiencing the same thing even though I take antihistamine for tree pollen hayfeaver. I will get some of the cream and try it 😁I have been on the injections for 2 years now for GCA and Aortitis. Been off the steroids for about 18 months. It works very well for me, just have to manage the fatigue. Praying the funding doesn’t stop again, I had to take methotrexate for a few months last summer which made me feel very ill.

Keep smiling everyone and I hope it works as well for you x

[Hidden]

I’m so glad you posted this. I started Actemra in May and did fine with bi-weekly injections (auto-injector) until August when I started to develop a hard red oval lump (about 3”x2”) at the injection site that was SO itchy and irritating. This would last about 5-6 days. I would also get intermittent hives around the injection site as well. The weird thing is, the hives come and go for up to 2 weeks. My rheumatologist had me switch to the prefilled syringe. I tried that this week and the same thing happened. So discouraged and frustrated with this as the Actemra was helping.

[HappyDiamonds in reply to Hidden]

Im still using Actemra and I no longer get that reaction. The antihistamine cream applied on the lump helped, then I ran out of the alcohol wipes supplied with my pens so I started injecting after a shower and using Pure Wipes instead, never had a reaction since. The itchy lump used to start within minutes of injecting now no reaction at all. Worth a try if you are using the wipes. Hope it helps you as it would be a shame to have to stop something that is helping you. Good Luck.

[PMRpro Ambassador in reply to Hidden]

As Happy Diamonds says - the alcohol wipes can be the cause of the problem. Making sure the skin is completely dry before injecting is often enough, But actually the need for alcohol on clean skin has been disputed in studies. I had blood taken for years without alcohol without problems.