I have had 2 very serious infections since I started taking Enbrel in 1998. One occured 2 yrs ago and then another one last June. Both infections were located in my head; ears, sinuses, teeth and jaw on rt side. The symptoms occured suddenly and became severe rapidly. By the time I had any symptoms of infection; redness and heat along rt jaw line, severe pain behind eyes and along both rt cheekbone and jawline, severe earraches both ears, numbness on left side of face, sores in mouth and covering tongue, disgusting drainage from nose and down throat, the infection was very advanced. I was given IV antibiotics and then shuffeled between 2 doctors and 2 dentists. Jaw x-rays showed that the infection was under many of my teeth, one more than the others and that it could be the original source of infection. Decision was finally made to have an Oral Surgeon pull the tooth and to load my system up with massive doses of antibiotics. All of medications for arthritis had been stopped at the first sign of infection. After pulling the tooth I began responding to the antibiotics. I remained on antibiotics for 2 weeks and after 5weeks I resumed taking Enbrel, Imuran, Celebrex, prednisone. Last June it happened to me again. Much shorter time this time between seeing dr and dentist and then off to Oral Surgeon to have another tooth pulled. Problem this time was problems with antibiotics - red rash and itching, had to find something else to give me. Finally recovered and back on same medications.
Has anyone else had anything like this happen? I talked to my Internist and Rheu... about stopping Enbrel. She said no because there is nothing else out there to give me at this time that can't cause the same thing to happen. Without the meds I am in constant severe pain. My entire body goes under attack and I wonder if life is worth living. So I have no choice but to keep on taking the meds.
I just wondered if anyone else has had to deal with these kind of issues? Thanks for letting me get this off my chest.
Barb
Oh man that stinks! I have been l lucky so far and have only had an ear infection since I have been on enbrel.dyna,
What a horrendous time you've had! It's hard to imagine what you've been through. I certainly hope they were isolated incidences and you are free of those kind of infections from here on out.
Out of curiosity, may I ask you if you have any teeth that have had root canal procedures? Also, have you had any wisdom teeth pulled?
Wishing you smoother sailing, dyna.
Regards, Rana
Hi dyna,
I'm sorry to hear about what you've been going through. That infection sounds awful!
I just wanted to point a couple of things out that may be something for you to think about.
I don't know how long you've been on the Imuran, but it's a very potent drug that is known to lower the white blood cells in the body. If you've been on it awhile, you may want to consider it as more likely the culprit of the infections rather than the Enbrel. Or possibly both the Imuran and the Enbrel together may be lowering your immune response to infections. I've known quite a few people who cannot take Imuran for long periods of time due to it lowering their white count and putting them at serious risk of infection.
Plus, those of us who have been fighting any autoimmune disease for a long while probably have difficulty fighting off infections. So, a combination of two drugs that carry with them a risk of infection in combination with the RA itself puts us a risk. It may not be the Enbrel itself, but a few things combined is what I'm saying.
Also....not that I would ever recommend going off meds for RA because I know how miserable I am without the meds, BUT you have a right to make the decisions for yourself! Your doctor has no right to tell you that you can or cannot take any specific drug. Your doctor should be working with you to find the best treatment and taking your concerns into consideration. Although my doctor has at times not believed me when I've thought a specific drug caused a problem, so I know how it can be when you have concerns and your doc doesn't agree.
Can you try another drug in combination with Enbrel? Or try to go off the Imuran to see if it's what may be causing the infections or possibly the combination? I went off mtx a couple of years ago, despite my RD not wanting me to because of elevated liver enzymes...and I felt better after going off of it! I think both it and the Enbrel were just too much for my body to tolerate.
Anyway, good luck!! I wish you the best and hope you can figure this out!
Carol
Hi Rana,
Thanks for the message. I have never had root canal work done. I have had some crowns done in the past. One of the teeth they pulled was a crown, but the other was a regular molar. I had only 1 wisdom tooth come in and it was pulled over 18 years ago. Ironically it was next to one of the teeth pulled out. My internist suggested that I might want to consider having all my teeth pulled. I have good teeth and I don't really want to have to do that. The dentist isn't ready for that either. Thank you for replying.
Barb
Hi Kristin
I envy you all the hot springs that are in Arkansas. It feels wonderful to soak in a hot spring. They are so much better than using a hot tub even though some of them have pretty strong smells. I particularly like the sulfur springs
Barb Dyna, I have had infections from Enbrel but mine have been skin related. It gave me bacterial and fungal rashes. I kept going back and forth to the dermatologist for it. I had to keep going on and off the med and be put on antibiotics each time for a month. The antibiotic dose got higher each time. After 11 months of misery my rheumy and dermatologist finally accepted the fact it was the Enbrel. Something I kept telling them both all along. Dermatologist said he has been seeing more and more people on Enbrel with the same problems I had. Rheumy would not put me on another TNF biologic because he said the same thing would happen. He put me on Kineret which is not a TNF. Hi Carol, You had some very good suggestions for me. My WBC runs around 10,000 on average and that is high. When I had the infections it ran up to 20,000. My body was trying to fight the infections but it couldn't keep up. None of the meds have ever lowered my WBC. MTX sent my liver enzymes through the roof and then I developed acute shortness of breath from it. I did not have permanent lung damage but I can't ever take it again. Next time the lungs could be permanently effected. I can't take that chance. I took MTX for many, many years before that happened. It was the first drug that worked for me back in 1984. Enbrel is not enough by itself and Imuran is helping, so for now I'll stick with it and hope for the best. I had taken Imuran in the past with no problems. My doctors and I think the Enbrel is the problem. My Rheu... and I have a good relationship forged over 20 years. She was my 3rd one. She lays everything out for me and then I make the final decisions about my treatment. She knows that I want to know everything. The problem for me is that I have been on everything and I have run out of options for now. If I take the Enbrel, Remicade or whatever I'm risking the chance of another infection and if I don't, I will be bedridden and in constant pain involving my entire body. Thats the way my arthritis has been for 24 years. Not even 1 remission. So I take Enbrel and hope there will be another breakthrough before I am forced to stop by infections. I don't know how many of those the body can take. Nobody can tell you, its an unknown. Sorry to make this so long, I've had this bottled up inside except for talking to my husband. I know this sounds horrible, but I really hope that someone will answer my post that has gone through a serious infection like me while on Enbrel. Anyway, thanks for caring. Barb Barb, I have had RA for 21 yrs so I have an idea of your pain , however I did have a remission for about 2 years so the idea of being ( mostly ) pain free is still memorible. You have been through a LOT , I hope you find some relief soon ! I envey your relationship with your Rhuemmy, I lost mine last yr ( after 14 yrs ) due to retirement and now my new Rhuemmy does'nt trust me yet. Sorry about the Ra writing and misspellings Russ, Thank you for the note. I'm sure I'll be hearing that my Rheu.... will be retiring one of these days. She's an avid fisherwomen and she loves to spend time in the outdoors. She stopped taking new pts a few years back. I once told her that she could retire anytime she wanted, but she had to keep taking care of me. I'd be her only pt. She just laughed, she didn't think I was serious. Oh yes I was! It takes time to build up a good relationship where they trust you. Thank you again for writing. Barb Hi midnitestich, I've never heard of Kineret before. I'll have to look it up. I do not envy you having skin infections. Things like that are absolutely miserable and look awful too. At least my problems were resolved in a couple of weeks. I can't imagine 11 months. You must be a saint to put up with that. Let me know how kineret works for you. I 'd be very interested. Have a good day. Barb
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