Started enbrel on a Friday. Did initial shot in right thigh at rhumetologist office. Went well. Next Friday came and time to do second injection. Did it in left thigh. Went well. Woke up the next Monday scratching my left thigh. I looked and there was a giant red welt. I was warned I may get a site reaction so I didn’t worry too much but called enbrel support anyway to report it. They said it’s ok. The next day I woke up scratching my right leg, the original site. I looked and there was a giant, blood red splotch. Called enbrel support again. They said 7% of people have this problem but that I was ok to keep taking my shots. Called my rhumetologist and she took me off the Enbrel. Shoot, I was hoping it would work out. The left leg welt turned into a huge, hard purple mass. It took over 2 months to completely disappear. The right leg splotch took about 6 weeks to heal. There is no way I could have stayed on it because the injection sites took so long to heal. I guess I was one of the unlucky 7%
I would be interested to know if you were using the auto-injector or prefilled syringes. I used to get a small injection site reaction with the auto-injector. When I switched to the prefilleds, no more reaction.
I think there are additives in the autoinjector that aren’t in the regular self-inject shot. Plus they are like a hammer on your skin. I switched ages ago to pre-filled syringes as the bruises caused by the autoinjector would still be there when it came time to inject 14 days later. I mean it was helpful to know where I had injected last time to move things around, but, yikes!
Maybe talk to your doc about syringes?
Autoinjector is LOADED with latex. If apple, avocado, banana, carrot, celery, chestnut, kiwi, melons, papaya, raw potato and tomato cause any problems one should NEVER use an autoinjector not to mention why anyone would want unnecessary pain…
The same thing happened to me: welts disappeared, but then resurfaced with subsequent injections. It was a few months before that nonsense stopped. Mine welts never turned into hard, purple masses, though.
What’s your rheumatologist’s plan now?
After months of no treatment she put me on Arava which I had severe adverse reaction to. I am now waiting to hear the next step. My next appointment isn’t until December. I have been seeing her since October of 2016 and am still waiting for medicine that works for me. I live in a rural area and it takes 3 to 4 months to get an appointment with her. I am starting to doubt her but there aren’t any other rhumetologists around. Also, I know I could have records transferred but would hate to start over with a new doc.
I hate to make you doubt your rheumatologist more but her plan isn’t allowing you or her get a handle on things is it? You shouldn’t be going ‘months without treatment’ however far away you are from her. I know I’m not in the USA so I don’t really understand how you’re funded but I’ve heard of loads of people who do get ‘help’ from the manufacturers without it seems being means tested like you suggest. I changed doctors in the UK for far less that your present treatment or non-treatment, simply because I didn’t think he was that interested. The difference for me has been huge and I’m still not on drugs that work yet. Now I feel cared for, have got to know the whole team and I so know we’re all on the same page working through the UK drug protocol to get to the drugs that hopefully will work. I can talk on the phone to the nurse specialist team. I can email the rheumatologist directly. My appointments are three months apart and she’s 5 hours away but since my last appointment, she’s been so reactive to other stuff that has happened and has got my primary doctor arranging all sorts of scans etc that are needed. Starting over with her was the very best thing I coud I have done.
Hope this helps.
I’m sorry for your experiences with the meds!
Many of us who do have reactions, tend to have minor adverse reactions that just disappear of their own accord - sorry to hear yours appeared to escalate!
With regard to your Rheumy, I know changing can be scary. And with the exhaustion and pain of untreated PsA, can seem overwhelming. Starting over really can be a good thing though
I do so hope you get some effective treatment soon.
I beg to differ! I prefer auto injectors and I don’t understand how they’re painful? If you put it in the fatty area near your belly button it really doesn’t hurt. I’ve been lucky and haven’t had any SEs from Enbrel.
Kmwestmo, I’m wondering if you were allergic to something in the autoinjector as tntlamb mentioned. I know it would’ve been scary to continue taking Enbrel with reactions like you had, but it almost seems, since they were at the injection site and you didn’t have other SEs, the reactions were from the injector and those extra ingredients in it. Too bad your rheumy didn’t have you try a needle and in a different location.
I’m sure there’s a med for you that’ll work–I’d surely avoid auto injectors if I were you, though.
Do you have any kind of access to your rheumy or at least her department in between appointments Kmwestmo?
All I can do is leave a voice mail for the rhumetologist nurse. Their message states that all calls will be returned within 24 hours. After two weeks of awaiting a return call, my husband called them and left a message saying they need to return my calls in a somewhat demanding voice. They called back the next day.
I have called the rhumy nurse probably around 20 times over the past year. Most called takes several days to a few weeks, if at all, to be returned. Another patient in the office while I was there complained about this problem.
Sometimes, when I have a very severe drug reaction, they call back the same day. But most often, I cannot reach my doc and have wait for a nurse to call when she feels like it.
the issue of phone calls in urgent situations going unanswered is an important one to raise with your doctor in your next meeting. You might even want to email your doctor ahead of time and reference the subject as one of the issues you want to discuss. I did this and it helped.
what I ended up with was a flare tool kit and treatment protocol that my rheumy and I devised. We talked about how to recognize a flare (which can sometimes be a very short term event and sometimes a little more long term). My tool kit includes: a prednisone script always filled (and one with the pharmacy) and ready for “as needed” dosing; an agreement about appropriate prednisone dosing; a prescription of antibiotics always filled (and one at the pharmacy)–this is great for weekend onset of horrendous maladies which require antibiotics which often arise during or after travel; a battery of prescriptions (all filled) for anti-inflammatory cream, a variety of psoriasis ointments and liquids (as P flares often accompany PsA flares for me).
this doesn’t sound like much but the peace of mind of being able to (and trusted to) treat myself instead of hanging on by the phone/email is enormous. Equally, my primary care physician is copied on ALL my PSA charts/labs and has offered back-up services when the rheumy is not able to help.
Maybe there’s something in here that can help you?
PS–the benefit of having a prescription filled and another at the pharmacy is that if I’m away from home I can always go to a pharmacy to get a script filled if I neglected to travel with the medicine (I use a national chain pharmacy)
Those are really good suggestions. I will bring them up at next appointment. I don’t have an email address for her so I can’t even send pictures if something happens between visits.
Do you fellow sufferers think I have a bad Dr? Or at least bad office practices? Should I find a new doc and just start over?
Sounds like a typical practice and poor communication between your Rheumie and PCP which actually is something you need to facilitate. The US is short short 4,700 rheumies as we speak and need growing because of the lack of “procedures” and the inordinate amount of paperwork (on average 80% of a practice is medicare and medicaid) it is the poorest paying specialty (even worse than pediatrics) some of these guys can’t even fully service their school loans. This is an issue specific to the USA and doesn’t exist in most single payer systems.
Its also a specialty that is NEVER emergent. and everything takes time to develop if you are on a 3 month schedule, that is indicative of pretty severe/uncontrolled disease.
So what do you do when you have an emergent situation? You call your PCP FIRST, if she can’t handle it her office will (especially if you ask) make the necessary contact with the Rheumies office.
It would be nice to say a change would help but its not likely. If you have a rheumie who is treating or trying to treat your disease hold on tight, thats half the battle.IF your PCP is unwilling to do this, then thats the first doc you need change
This sounds huge… I think most doctors look bad next to this example… But she did say it was only after she asked for it… or demanded better… So maybe try that first…
I think you have a badly managed practice. Before slinging your hook and searching for another doc I i would ask if there’s an email you can use (many offices have a triage email address these days through a patient web portal). But you may find that a frank and honest discussion of your needs (I need to know I can contact you if I have a question or issue) rather then your doc’s office’s failures (your staff doesn’t call me back) might get you some traction.
If nothing works then I might look for someone else who can meet your needs. And at least you will be able to specify what your needs are! (and, BTW, I don’t think you’re asking for too much.
Given what TNT said (it is still hard to see Rhuemys here in Aus - but the issues are different), looking for a new doc may not address the communication (or lack thereof). it can always be an option though, if after further discussions with your Rheumy you disagree with the actual treatment plan.
Reading Janeatiu’s post, I manage it in much the same way (though it’s less formal and I’m greatly helped by a very good GP / PCP).
I couldn’t imagine not having prednisone for flares in the cupboard or while traveling. If you are still in the gap though (which is how your post reads to me), you and the Rheumy will need to put some rules around it - it’s all too easy to keep taking it when it makes you feel so much better, but its not actually good for you (or for getting you quicker treatment) to keep doing so.
I hope it improves for you soon!
I had a bad reaction to Enbrel too. From the first injection (pen), the site would itch and swell to about 10 cm!! Both Dr. and nurse told me to keep going and give it a chance, so I did for two and half months. I even feel worse as far as pain is concerned.
Now my Dr. has put me on Humria also with the injector pen. And I’m so pleased…absolutely no reaction from the first injection! I wonder why your Dr. didn’t try another biologic. Just because you reacted badly to one autoinjector pen doesn’t necessarily mean you can’t use the autoinjector pens.
I can’t afford Humira or any brand name drugs. The only reason I was able to get enbrel was because I qualified for the Amgen safety net program. I was turned down by otezla and Humira for help. I only have Medicare part d for prescription coverage. I am married and we make a decent living, but we cannot afford to add me to my husband’s insurance. That would solve a lot of our problems if we could. So I am limited by what drugs I can afford and I keep telling my rhumy that but she keeps making me go through the steps of seeing if I qualify for financial support for drugs. 2 out of 3 drugs she prescribed I did not. Really sad the Enbrel didn’t work out. From what I’ve been hearing it is good for joints and skin. I will tell her what you all have said about trying the regular syringes you instead of the pens.