My Enbrel site reactions are worse than symptoms of my arthritis

General
1

Hi , here's an update,

and it's time to vent....

Ive injected 5 times now with the auto injectors, and getting very bad site reactions. With the very first one, i didnt get a site reaction, not even a little red mark. Nothing! From the 2nd one on, it's been a different story.

After 4-5 days they fade, but the discolouration is still there weeks after. And forget about the discolouration, if that was all, Id ignore them! But not the case. My site reactions turn tomato red, they are raised patches, look like welts, they are so sore, so sore that it hurts to walk.... I can walk perfectly fine with arthritis. Im not in constant pain with arthritis. I can go swimming with arthritis with the site reactions, they limit what i can do because they are so sore. I am able to do less so far on enbrel and it is really bothering me. Worse is the pain and the discomfort these site reactions are causing me. One time, the reactions was 7 inches , half my upper leg as I am a small person. I almost cried walking on it...so sore. My upper leg (thigh) on that side also was very swollen. The last one on my tummy grew only to 3.5 inches but my whole lower stomach on my right side swelled up too. not just around the injection site but the entire area. Now after 3 days since the shot, it is still swollen but the "rash" has faded in colour and it's not raised anymore. It hurts to run and bend still. I worry about the swelling. I dont mind if benedryl worked but last time I took benedryl and used hydrocortesone cream as prescribed...and they did nothing. Benedryl made me feel drugged up for 3 days. I might as well say I am on benedryl and enbrel if someone asks me what medication Im on!!!! I shouldnt have to take benedryl 4 days in a row. Yes I get great sleep but taking it day and night leaves me groggy and I have 2 small kids to look after. Plus I dont want to take benedryl day after day...it doesnt seem right or safe.

Ive tried icing before and after the injection, without luck. And because I have been on enbrel only a short time, Ive never injected in the same site. Ive been careful about this and have always used alternative sites so I know this is not the problem. I think I may have to come off enbrel and that's what my dr says too.

My doctor is well aware of this. I havent been able to see him yet as he's on holiday but next week we are going to try something else. He wants me to try the syringe and see if I get reactions as bad. Now I cant give myself the needle...needle phobia...in fact my husband has been giving me the auto injection so no way can i give myself the needle. I only did it once with the nurse in my house initially but i cant even bring myself to give myself the auto injector at home. My husband is comfortable with the autoinjector but not a needle. I am willing to try the needle if i can go to a walk in dr or a lab to get it done. Unfortunately I live over 1 hr from my Rheumy and he doesnt have a nurse in his office. Only a secretary. I dont know if he would give me the needle , if he does that.... but at the same time it would be hard to travel to his office eveyr week. I dont even drive and I would have to rely on my husband who works. My kids also go to their little schools and I am the only one who can pick them up ...so dont know how it would work if I have to travel one hour every week to get the enbrel needle.... but i guess Im willing to try it. I wonder if a walk in dr could do it or a nurse at a lab or even if they could sign me up for a home nurse to come to my home to do it. I dont know. Hopefully it works out. Id like to stay on enbrel to see how it works for me. Im yet to see full effects but Im only really a month into it. I have heard site reactions decrease the longer you are on the drug but the site reactions are worse than my arthritis symptoms, it is just not worth it for me. It's scary your whole lower stomach swelling up. I dont know how long this latest reaction will last but the other ones lasted a whole week, it was almost time to do the next injection by the time the old ones stopped bothering me, and interfering in my life, and like I said they are not even completely gone weeks later. Something is wrong. My body hates enbrel. I am not too keen on taking enbrel but I thought to myself what choice do I have... I have arthritis and despite the serious warnings attached to the drug, I thought it works really well for some people and if my dr thinks I need it, trust him and see how it helps me. I was willing to try it , maybe not in the long term, but for the short time just to see how it helps. Looks like my experience with it will be shorter than I thought it would be.

I was hoping Id have no problems with enbrel. But no such luck. This is crazy.

2

According to my rheumatologist: you can take zertec AND zantec the day before, day of and day after your injection. Both are anit-histamines and should help with the reaction.

3

It sounds like you need to discuss this with your dr.

Site reactions such as yours are reasons to discontinue and try another biologic. Everyone responds differently, and some do better on one med than another.

Best wishes!

4

If you are going to start on the prefilled syringes, make an appt to either have your doc or home health nurse show your husband how to do the injections. They are very easy and much less painful than the auto injectors, so maybe that will help your husband if he understands that. ( I’m a nurse and got squeamish trying to give my cat subcutaneous fluids. We all have our thing) I really doubt that insurance will cover you going to a clinic or lab or your docs office for weekly injections. I may be wrong, so it doesn’t hurt to ask, just be prepared for an answer you don’t like.



Talk to your doc about taking either Prilosec or Zantac along with Zyrtec instead of benadryl. Prilosec and Zantac are for acid reflux but contain a histamine blocker. Andrew makes a good point to take it the day before and the day of the injection. None of those meds should make you groggy like benadryl does.



Make sure to follow up closely with your doc about this. Those sound like really nasty reactions. Allergic reactions can get worse over time, so if you are allergic to the enbrel, changing injection methods won’t help. Maybe you are allergic to something in the auto-injector? Sorry, I strayed off for a minute. As I was saying, make sure you keep an eye on those reaction symptoms. If you notice any rash, redness, swelling, itching, welts, or ANYTHING UNUSUAL around your neck, face, or lips, Go to the ER right away. In fact, call the medic squad, since it sounds like you might live a ways away from the hospital. They will be able to give you drugs right away to counteract the reaction.



Also, if after the first injection you have a reaction like the ones you have been having, seriously consider calling it quits on the enbrel. There is no reason for you to put yourself through that every week.



Best of luck. I am so sorry that you are having to deal with this. I’m frustrated for you. :frowning:

5

I think so too, and as per my dr's msg, I'll be trying the enbrel needle/syringe next and see if I get different results. It's worth it, I want to see how much the drug helps me. I wanted to see it's full effects... but if I get these nasty site reactions again , the dr is going to stop the treatment of enbrel. It's just not worth it when the symptoms of the site reactions for me are worse than my arthritis symptoms, and it could be an allergy. It's just nutts to suffer more because of a medication when there are other medications out there. It is not like enbrel was the last resort medication for me. I'll keep you updated.

Marietta said:

It sounds like you need to discuss this with your dr.

Site reactions such as yours are reasons to discontinue and try another biologic. Everyone responds differently, and some do better on one med than another.

Best wishes!

6

Grumpycat: the hubby and I discussed it and I cant give myself the needle and nor can my husband so I'll have to go somewhere to get it done by a health care professional...lets see if this is an option.. It may be different in Canada, grumpycat.... I dont know but we do have a free public health care system, excludes prescriptions. Ive had home care before but that was after being discharged frm the hospital but my dr can always give it to me in his office or even send me to a medical blood laboratory, Id bring my own suppy and they could give it to me...Labs here are covered under the free medical care. Well it all depends on my dr.. I have my limitations when it comes to the needle so if he wants me to try the needle then he'll have to make the arrangements otherwise its a new medication for me. Im ok with that. I wont be sorry. It's simple really my husband can not give me the needle and I can not give it to myself either... im not ready to. I just cant... I havent even been able to give myself the autoinjector despite the fact that I did when the enbrel nurse came the first time... one time and after that forget it...Im too nervous about needles and I think to myself giving myself needles is the last resort, for me, but every one is different and everyone's arthritis is different too. There is no need for me to do last resort stuff lol I can understand if it was someone else and this person can not get around or do daily tasks or even the activities they enjoy, they are suffering so much because of their arthritis...they are in a lot of pain and their quality of life could be a lot better...then if I was this person Im sure Id get over my needle phobia.....Id want to.

As for Zantac etc...My dr is not too keen on me having to take something or having to rely on something like benedryl or zantac , anything....he says I shouldnt have to... if they were only little mild site reactions then he says he could understand , you take one or 2 and it gets better...mine are too large and too problematic to get better on just a couple of pills...that's what my dr thinks...I know in the past when Ive had allergic reactions to medications Ive had to go to ER for treatment and wasnt able to simply take an over the county remedy. This time too they are probably not just site reactions...my body is rejecting the medication. It sounds like more of an allergy. Last time, aprt from the large welts I got, my entire lower stomach & groin area swelled up a day after the shot and for days it was agony.....it was scary ! Just not worth being a guinea pig anymore considering I dont have many or severe challenges with my arthritis. Maybe enbrel is not for me. I guess over the last month,Ive been letting myself suffer only because I have heard that the SE like site reactions may just go away on their own but these last few weeks have been trying and I dont want to be a guinea pig anymore...hoping they'll get better or go away in time. No thanks. Im not sorry it has happened cuz enbrel is not the last resort for me but it is annoying , the thought of having to switch medications. I guess it happens.

GrumpyCat said:

If you are going to start on the prefilled syringes, make an appt to either have your doc or home health nurse show your husband how to do the injections. They are very easy and much less painful than the auto injectors, so maybe that will help your husband if he understands that. ( I'm a nurse and got squeamish trying to give my cat subcutaneous fluids. We all have our thing) I really doubt that insurance will cover you going to a clinic or lab or your docs office for weekly injections. I may be wrong, so it doesn't hurt to ask, just be prepared for an answer you don't like.

Talk to your doc about taking either Prilosec or Zantac along with Zyrtec instead of benadryl. Prilosec and Zantac are for acid reflux but contain a histamine blocker. Andrew makes a good point to take it the day before and the day of the injection. None of those meds should make you groggy like benadryl does.

Make sure to follow up closely with your doc about this. Those sound like really nasty reactions. Allergic reactions can get worse over time, so if you are allergic to the enbrel, changing injection methods won't help. Maybe you are allergic to something in the auto-injector? Sorry, I strayed off for a minute. As I was saying, make sure you keep an eye on those reaction symptoms. If you notice any rash, redness, swelling, itching, welts, or ANYTHING UNUSUAL around your neck, face, or lips, Go to the ER right away. In fact, call the medic squad, since it sounds like you might live a ways away from the hospital. They will be able to give you drugs right away to counteract the reaction.

Also, if after the first injection you have a reaction like the ones you have been having, seriously consider calling it quits on the enbrel. There is no reason for you to put yourself through that every week.

Best of luck. I am so sorry that you are having to deal with this. I'm frustrated for you. :-(
7

You may be having a reaction to the Enbrel, but just as likley (if not more so) its a latex sensitivity from the preservatives and set up of auto click.

I get the needle phobia thing, BUT prolly the only disease worse for having to use needles is Diabetes. You are going to have to find a way to deal with it......

Nothing against nurses, but i have found few that can inject me with the same otr less pain than doing it myself. These bios are a large injection, and the flow rate is as individualized as the people themselves. Too fast will hurt A LOT. Way too fast will hurt a lot FOR DAYS. Enbrel BTW hurts the least. (in terms of the pH formula) Humira the worst

8

Ok. I understand. I thought that your doc was insisting that you try another method of injection before switching meds. That is why I suggested taking non-drowsy medications to help treat the drug reaction that you will very likely have if you switch to the prefilled syringe. There is an off chance that you could be allergic to something in the auto injector itself (especially if it contains latex, and you’ve had a reaction to it before). But if you have probably been exposed to those very same materials on numerous occasions by now, with no issue? So very likely it is the enbrel and you are having a drug reaction. I guess your doc is hoping that you are allergic to the injector, and that’s why he wants you to try syringes? I sort of understand that, but at the same time it makes me a little nervous that he wants you to enbrel in any form.

Injection site reactions are mild and should resemble something like a bug bite or small rash. Not an area larger than your hand and involve several body parts. Large welts are not part of an injection site reaction either. You already know what it is (allergy) and know that you need to try a different medication. There are other medications out there, so I’m not getting why your doc is attempting to continue down this road. I would not want to risk putting myself through the pain again, or risk an even more severe reaction. But, it’s something that you have to decide with the doc because, ultimately, he’s the one who has to write the prescription for a different medication.

Being afraid of injecting yourself with a needle is something we can all understand. I think maybe yours is made much worse because it hurts so much and is causing so much swelling and discomfort. Is it fun to inject yourself? Meh, not really, but it is worth working on. It is so much more convenient to grab it out of the fridge and do a quick stick than to spend 3 hours at my docs getting an infusion. I’d love to go back on a drug that I could inject at home. Plus, I like having control. I can stick myself with very little pain, and do a better job not hurting myself than most clinical staff. I take extra care, because its me! When you do change medications, request that another nurse come and help you try again. It really is worth the effort. If you are able to learn to get past your fear, you open up options of other injected meds and methods of injecting. For instance people prefer injecting methotrexate to taking pills because taking it orally causes a lot of stomach issues. Or with Humira, the self inject syringe is less painful than the auto injecter. One doesn’t have to be really sick in order to want more simplicity in life. That’s what you will get when you can do it on your own. Start talking yourself into it :slight_smile:

9

Lamb,
You know I am a nurse and I agree with you 100%. No one can inject me as well as I do. I think most people are the same way. That’s why I prefer syringes so much more than the auto injectors. I can control the speed of the injection, and have almost no pain.



tntlamb said:

You may be having a reaction to the Enbrel, but just as likley (if not more so) its a latex sensitivity from the preservatives and set up of auto click.

I get the needle phobia thing, BUT prolly the only disease worse for having to use needles is Diabetes. You are going to have to find a way to deal with it......

Nothing against nurses, but i have found few that can inject me with the same otr less pain than doing it myself. These bios are a large injection, and the flow rate is as individualized as the people themselves. Too fast will hurt A LOT. Way too fast will hurt a lot FOR DAYS. Enbrel BTW hurts the least. (in terms of the pH formula) Humira the worst