I occasionally get welts with the auto injector. Not every time. Some of them have been doozies, but I’m not giving up my Enbrel.
Hi Kmwestmo,
I’m so sorry to hear of your situation! I read back through the thread and am wondering if your doctor gave any thought to whether the auto-injector was the cause of your bad reaction to Enbrel. I didn’t know you were on medicare, and this is a concern of mine because I’ll be retiring in about 2 years and I had heard medicare doesn’t cover any of the biologics and only covers Remicade because it’s administered in a hospital.
IDK anything about the Amgen safety net program…
I’m probably in the same boat as you as far as making a fairly decent living but not to where we can afford the high out-of-pocket cost of a biologic like Enbrel or Humira.
Anyway, I hope your rheumy agrees to give regular syringes a try and, crossing my fingers for you!!!
Hi Grandma_J,
My rhumy did not offer to try the regular syringes. She immediately told me to stop then enbrel then moved on the otezla which I could not afford. Then she tried for humira which I again could not afford. Medicare part d wanted me to pay $1600 a month for humira until I paid $5000 out of pocket. Then it was going to be over $200 for the rest of the year under “catastrophic coverage.” There are a lot of part d providers all of which have similar payment coverage with a donut hole after around $3000 total drug costs per year. I am not sure why I qualified for enbrel support but not humira since they cost about the same. Part d would cover the humira but with the same ridiculous out of pocket costs.
The amgen safety net allows a 2 person household to make up to $80000.00 per year to qualify. If you meet the criteria they will give you FREE medicine fedex’d directly to your home every month. Great solution if you can tolerate the medicine. Try here to begin: http://www.amgensafetynetfoundation.com/
So after not being able to afford otezla or humira, she put me on Arava. I had my concerns about this medication as I have some of the health conditions that may be exacerbated by the medicine such as diabetes and high cholesterol. I spoke with the rheumatologist nurse about my concerns and she assured me that my rhumy was familiar with my chart and I would be ok. I had an extremely bad reaction to the Arava and stopped it on the 7th day.
It’s been 2 weeks since I’ve been off the Arava and I’m still having some symptoms but getting better. Haven’t heard back from rhumy and don’t have my next appointment until December. This is typical of the quality of care I receive. It’s a trial and error/wait till next appointment while suffering with no help process. I am very frustrated and losing hope. I have very bad days and some tolerable days, but every day I am in pain with limited mobility to some degree.
I hope this helps. I am not an expert on part d but I have been dealing with it for several years, so if you have any questions, please ask and I’ll do my best to answer.
Here’s my two bits on Part D. IMO Its a scam to put more money in the Insurance and Pharmaceutical company pockets. The MOST implicit part of this scam is AARP and United Healthcare. (essentially one in the same) My wife is finally eligible for medicare so I am moving off my private healthcare plan this year (it was simply too expensive for me to go and put her on COBRA. I have managed to find a great Medicare Consultant (who is a fulltime employee of my cardiologist) who has prepped with me multiple spreadsheets passed on the last 10 years of medical records and prescription history. We are compromising hospitalization and Bart B copays simply because my expenses have really been scans and medication and are plugging into an advantage plan (which vary widely by state) that is income based in terms of copays which are combine into one (including meds.)Consequently the Donut hole is gone (which BTW is dropping every year) My pensions were converted to single premium annuties (money well spent with a good) lawyer so don’t figure into income. My out of pocket expense will be 15.00/month PERIOD How this works for others I don’t know. I started much earlier than most and found taking my SSA at 62 instead of 65 actually gave me more money/month because of reduced medicare costs, deuctibles, and copays.
Thanks for the information. I am only 40. I’ve been disabled since I was 24. I have no pension or savings. I am stuck with crappy part d unfortunately. I am going to talk to my rhumetologist about trying the Enbrel syringes since so many people had better luck with them and I qualify for free meds. Hopefully it works for me.
Hi all, it has been a while since I posted. I hope you are all staying well in this upside down world of ours.
I wanted to reactivate this thread to see if we have anymore insight into these types of reactions. I have just switched from Humira to Enbrel. Had my 2nd Enbrel injection on Friday and by Saturday I experienced a very similar reaction to what Kmwestmo described. I also experienced what I would describe as feeling unwell, hayfever type symptoms, and mild nausea. I already take antihistamine daily. @tntlamb I was using a prefilled syringe.
Interested to know if anyone knows anymore about this type of reaction? I know allergies to biologics are rare but this certainly feels like a budding sensitivity. I will take my 3rd injection but if that site also becomes inflamed, I truly will only have one spot available for week 4!
Perhaps the welts will unite and form the mighty United Welt Union (UWU Australia Branch)!
I can only relate my personal experience. Enbrel has a pH of 6.3 ± 0.2. and the preservative free version a pH of 6.3 ± 0.2. neither of which are friendly to skin especially if you have psoariasis. In the 4 years I took Enbrel, I can not remember a single time not 1 that I didn’t have a site reaction. Your skins natural pH is around 5.5 and not uncommonly below 5 depending on lotions soaps etc. Of course there will be a reaction. Often but not always no mater what Biologic I was taking I would the following day have hayfever type symptoms, and mild nausea. When it stopped, so did the efficacy… Numerous studies have shown that there are few meds that play well with aluminium- and magnesium hydroxide-containing antacids(which most OTCs are. Remember you have an immune system that has gone rogue and thinks it knows better.
When you introduce soemthing to you body that tries to put it under control The head guy in there says, “Oh chit Houston we have a problem and calls up the reserves to get that stuff outta there.” (does the same thing for me with cilantro) Sensitivity is not always a problem and is a far different thing than an allergy.
I learned to live with it because I was far more concerned with the PsA than anything else.I willingly accept this and other reactions as a small price for the greater relief from the Bio’s. The are powerful meds. It surprising if your body didn’t react.
I’d work with your Docs med nurse, maybe even inject for her and follow-up as your body does its thing many "sensitivity/site reactions are disconcerting but ultimately are Tempest in a Tea Pot compared to the real benefits. You might do well 20 minutes before injection to take a Zyrtec and a couple of Tylenol as is done with the more powerful /IV meds. Now we may not be talking the same thing and I don’t mean to marginalize YOUR experience based on MINE. That wy the med nurse consult should be next.
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Thanks. I get what you mean regarding the immune system being in overdrive. I guess I will wait to see what happens. I don’t think a meds nurse exists in Australia. Rheumy suggesting I take steroids to manage the reaction. Cheers
M
In Australia I think the equivalent of the meds nurse is often the “receptionist” at the Rheumy’s office, who is usually actually a very experienced Rheumy nurse. But there is also a patient support for Enbrel you can register for at Enbrel.com.au. Once registered, you can access a part of the site that gives you a dedicated phone line to call an experienced nurse who works for Pfizer with all your questions. Enbrel was my first biologic and I found them a great resource (particularly as I travelled a lot and needed to figure out how to carry and store in remote areas).
But they were also great to talk to about the hives, more reassuring than my Rheumy, who disliked biologics anyway and basically treated me like I got what I deserved 
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Thanks I will see how it goes