Enbrel Serious Problems
Does anyone know:
1. does enbrel cause white blood cell count to decrease? if so, long term or short term?
2. does enbrel have any effect on SED rate?
3. if one comes off the Enbrel, will your immune system kick back in or does it have long term effects on your immune system?
4. does it have any effect on kidneys or any other organ functions
My father is now seriously ill with a staph infection. I am wondering how much of this has to do with the Enbrel. He has been on it for a few years with no problems...until he shattered his knee from falling from second story garage platform. He had surgery to repair the knee and was sent home feeling great.
Two months later he was sent to the hospital with a very serious Staph infection. The way I understand it, he contracted the infection while having surgery at the hospital (joint surgery puts one at greater risk for infection, I learned later from my research). He was very very and still is ill.
He was never asked to go off the Enbrel until he was seriously ill with this infection. Now, we learn that if he had gone off the Enbrel before the first operation to repair his knee, his body might have had a chance to recover and his immune system may have been able to fight off the infection.
I was told that his white blood cell count was exceptionally low...something like 5,000 and the doctor said they would expect it to be at around 25,000 since that is what a normal healthy persons blood cell count would be at if there was an infection that the body was trying to fight off. Does anyone have any experience with this?
Also, when he was really really ill, (high fever, unable to move any part of his body, severe pain, on oxygen since he had difficulty breathing) his kidneys went from fully functioning to only functioning at 30%. The doctors said he had a "reaction" to the Vancomycin...
So, Im trying to understand if the side effects of Enbrel are short term or long term. I believe my fathers white blood cell count is still low (not sure how low) and Im wondering if this will improve or if this is damage that wont be corrected. His sed rate is elevated.
Very frightened about my fathers health. He was energetic and a very healthy 69 year old and now he is fighting to save his leg (amputation has been discussed) and potentially his life. I believe this could have been prevented if he had simply come off the enbrel before the surgery.
Any experiences or feedback would be greatly appreciated. We are seeing many new doctors and trying to get him some help in getting back to normal.
Thanks for your help if you know anything.
1. They should have taken him off of Enbrel before surgery.
2. They definitely should have taken him off of it as soon as he had the mere sign of an infection.
Enbrel suppresses your immune system, making it extremely difficult to fight off common infections. A lot of us here have had to go off Enbrel while an infection was going on, even minor ones.
Who ever is treating him is not doing their job right. You need to get another doctor, a good RD involved immediately.
You probably have a case for malpractice, but that doesn't help your father's condition. Those surgical rooms for knee surgery are supposed to be completely sterile, special rooms to avoid just this problem.
I don't know the effects of kidneys, etc.
Here's what I found at this web site:
Patients with Rheumatoid Arthritis: please contact your rheumatologist to inform them of your upcoming surgery and ask about medications.
The only reason I can think of for not taking him off Enbrel because it was an accident.
This link gives a lot more info.
My mom was on methotrexate and had to go in for emergency surgery. Ended up with an extremely bad staph infection. Unfortunately she never recovered. So, now 8 years later I have RA and the Dr wonders why I am terrifed of these medicines. Yes, this disease does terrible things to you, but the infections can kill you. Who else has had serious infections and from what medications?
I will pray your Dad has a good outcome.
I know that all of us have read the literature and the reports about the DMARDS and Biologics but it just doesn't seem so serious until we read about something like this happening. This really has me frightened and mad. I'm frightened for myself and everyone else that's using these drugs and I'm seriously mad about how your father was treated and the outcome. Everything that Deanna has said is factual and you should do some serious research regarding Enbrel.
I'd get another RD involved in your father's case. Does he have a good internist taking care of him? In fact your dad should start requesting copies of medical records to date from the hospital, orthopedice surg, and rheumatology doctor. If you're dad can't request them then the person who has power of attorney should be requsting them. The reason why I suggest this is sometimes pages of medical records disappear or are lost.
I hope that your father finds the strength and immune response to recover fully. Keep us posted. We all have a vested interest. Stay strong and be his advocate.
Just one thing to add, Vancomycin is a really powerful antibiotic and I could certainly see the potential for kidney failure there. Reactions to those drugs do happen. Staph infections are common, sometimes more prevelant in some hospitals than others. He certainly was made a prime candidate because of the RA meds.
I hope he recovers, hang in there!I pray your father gets better and gets better medical care. Medication is a frightening thing especially when surgery is thrown into the mix.
I'm sorry that your dad is having this problem. I hope there is a big improvement soon.
Deanna or Crunchy, how long do you have to stop the MTX before surgery?
I did find this article
this study found that there was no need to stop MTX prior to orthopedic surgery
that is the correct address, but I cant get it to hyperlink...
Thank you everyone for your information, advice and prayers for my dad. It has been a bad week. My dad has been having trouble breathing - that started to improve - then high fever (again) - that improved - and now constant coughing and we learn he has "mild pneumonia" as the doctor puts it. Not sure there is such a thing as "mild" when you are talking about pneumonia and especially for someone who is ill.
I wanted to share some information with all of you - not to scare you - just to inform. One of the doctors that my dad saw up in Los Angeles (a new doctor who specializes in disease of bone and joint) referred to Enbrel as "liquid HIV" in response to my fathers question as to whether Enbrel had anything to do with the fact that he did not fight the infection well. Keep in mind...if he had gone off the Enbrel prior to the surgery this whole story would be different...there probably wouldn't even be a story as he would have been fine. If we had only known. So - this is good information for those of you on this drug...some doctors may not be aware of this so you can protect yourself if you ever have to have surgery and ESPECIALLY surgery of the bone or joint (as Deanna said and I wasn't aware of previously there are special rooms for this type of surgery since these operations give a much higher likelihood of staph infections etc.).
POOF - can you tell me what happened to your mom? Was it similar to what I have described? I don't understand why my dad has pneumonia if the infection is not in his blood stream any longer. Im confused.
Linda B -in response to your question about doctors..... my fathers doctors have made several mistakes and I am not comfortable at all with them. They did not bring a RA doctor in until right before my fathers 4th surgery and frankly, he did not get very involved. My feelings on this (and my sister shares this belief) are that so much had happened and he didn't want to get near this with a ten foot pole. The doctors will NEVER say anything bad about what another doctor has done and especially when they are practicing at the same hospital. We are in Orange County, California which is a big area and is supposed to have good medical care. I think it just comes down to the fact that this doctor is young, didn't do any research on my fathers meds (he is a sports orthopedic surgeon and not experienced in issues of RA, I believe) and "missed" something extraordinarily important. We have been visiting other doctors and are trying to find a new team.
I would be very interested to hear what types of problems any of you have had with infections.
Thank you again for your thoughts.
I hope your dad makes a full recovery, and soon!
Some Drs. are better than others. But, ultimately it is our responsibility to be as informed as we can be. Thank you for sharing the information with us! Because some of these drugs are so new, I don't believe all the possible side effects are known yet.
Good luck to your dad, you and the family in this time!!
I am off all of my meds, except the paxil, zantac, allegra and megace, because of upcoming surgery. It's killing me being off the anti-inflammatories!! Major ouchies, can't even open a bottle of soda now.... but if it means a better outcome, then so be it.
I think you are doing the smart thing in lining up a better team. It's is very good that you are acting as an advocate in your father's team. I know you probably feel very helpless. But it is true that patients just get better care when family members are involved. I don't really think this is from neglect or being uncaring on the part of the medical staff. But your emotions are contagious, your sense of urgency alerts them to problems. Plus, when a person is that ill, that just can't communicate as well what they need help with. You are doing a wonderful thing to be close to him through all of this.
I believe there has been a trend in the past to overlook problems in elderly patients as just being part of the aging process. But this attitude is rapidly changing. Now, the medical community is being forced to change that perspective. This may be part of the reason that the doctors were not as aggressive as they should of been. Somewhere in the back of their minds, maybe they are thinking this man is old, he doesn't have long to live any way, why put his body under more stress. But everyone has the right to the best quality of life that we can give them.
Keep fighting for you father. At least he sounds better than before. I think that has a lot to do with you being at his side. You are a good daughter.
I really debated this posting, but I guess you do need all the facts. 3 years ago, I was on mtx, plaquenil and prednisone. Then I went on Arava with the steroids when i fell and broke my right femer - r. knee was already replaced. I had surgery for the femer, developed infection from a central line, became septic (infection in the blood stream), months of IV antibiotics. Found out the Arava had destroyed my liver. Even my doctors admit it.
Then the knee became infected from the rod in my femer (hospital infection). I became septic, the rod, and knee had to come out, very nearly died, IV antibiotics for months. recovered (I was 62)! Went on disability. Then, last year, I had the left knee replaced. A month later, broke the left hip. Repair did not take so a year later he replaced the hip. It dislocated twice and guess what - it was infected with MRSA - the bad, drug-resistant bacteria you get in hospitals. When they took out the old prothesis, they broke the femer (it shattered) and the knee at the prothesis. 9 weeks in traction and IV antib., then they replaced the hip and knee, another couple months of IV antib., now I will be on oral antibiotics forever. I was also told that the risk of infection with these drugs is "slight".
Developed pain in left shoulder and fever - still in hospital - sepsis now from PICC line in left arm. Went to OR - it was dislocated and they drained a huge amount of fluid. Arrested on the OR table - notice - I'm still alive! Don't give up hope!!!
I cannot take DMARDS, NSAIDS, and biologicals now to control my RA - too great a risk of infection. I also picked up a vanco-resistant infection of the urinary tract from the hospital. I was 8 months in the hopspital with those infections, 6 months recovering a my son's, back home now 2 months.
Last week - shoulder pain, fever, went to ER, rushed me hown to the University, shoulder was dislocated, did surgery. Now I'm home - I think shoulder was dislocated for many months. I took off the brace. Fever's gone, but I'm watching it. When I was diagnosed with RA 25 years ago I asked my doc what I would die from and she said "infection".
I really hope this post doesn't make it harder for you - don't give up - I recovered, and wasn't really a healthy person beforehand. I'll pray for you all.
Oh, and I have wondered about the comment you made about Enbrel being the liquid HIV. I've wondered if underactive immune systems couldn't be helped by overactive ones. They do seem to be the opposite ends of the spectrums.
I wish I could just get mine balanced.
First of all I am so sorry about your dad and I hope he will be getting to feel better soon. My rd has always told me at the first sign of infection I am to get off my enbrel and arava. About 2 yrs ago I cut my leg at work and didn't think anything of it I continued taking my enbrel and my mtx ,at that time. I had a severe infection in my leg and was off work for almost a month!!! My rd really stressed after this episode that anything, body aches, feeling sick STOP THE ENBREL IMMEDIATELY, PERIOD!!!!! He explained that yes it works well for many of us, and the our monthly bloodwork may come back good, but when you are not feeling well, even a cold, you need to stop the med right away and get into the dr to be checked for any complications that could result in an infection. We read the papers that come with our meds we reasearch our meds etc, but alot of people still think "this won't happen to me," I don't even drink alcohol of any kind, because drinking while on enbrel can cause problems with your liver. I think it is terrible that your father's drs did not take better care of your dad, they know that the enbrel must be stopped before surgery, in fact some surgeons want you off the enbrel for 2 to 4 weeks before your surgery. I am glad you found a better dr and maybe things will go better now!! meme
I'm really glad you posted this. It's what I am afraid of as they guarantee I will need multiple surgeries. I'm awfully sorry that you have gotten the worst of it.
That's one of the problems with how people are educated on RA. Typically, it cuts 12 years off your life. But I think it is swept under the table, with "died from complications with..."
I cannot imagine how you make through each day. You must have a very strong will in order to survive so much.
It is also why I am always saying ask your doctor, go to the ER, check that infection out. I've gotten the lecture from my doctor and had to go off Enbrel twice because of infections.
I wish we had more choices. It seems the medicines are almost as deadly as the disease. I guess because we don't all get immediately confined to bed and wheelchairs any more, that there is this pretense that it isn't still a serious, and sometimes very life threatening disease. But I've seen that look on the doctor's face too many times now. I know I have danced with death as you have obviously done.
I hope this shoulder heals well this time. I just cannot fathom what you have and are going through. You're one tough customer.
Sorry it took so long for me to respond. My mom ended up in the hospital for emergency knee surgery so there was no time to stop any drugs. While there she picked up a staph infection. Not sure exactly where it attacked her but we suspect the espohogus or throat, etc. Was given all types of drugs to clear it up and all her tests came back clear. We suspect the infection just went dormiant. A few days later she went into shock from a staph infection that turned out to be sepsis. From what I understand 1/2 of people don't make it through a bout of this and if they do it takes 1-2 years before they are back to normal.
I think the infection just hit her so hard because her immune system was modified by the RA drugs. So then the body is fighting both the RA and a very bad infection. She was sleeping because she was sick and that caused her to get weak. Anyone who lays around too much especially in a hospital is open to peneumonia. .
One thing I learned is the most important DR is the primary Doc. He/she should be looking at the overall picture and pulling everythng together. I felt in my situation like these specialists were each treaing a different part of the body and often tripping over each other. One drug causes this problem, etc.
Again my prayers are with you.One more thing to add. I have a good friend who is an emergency room doctor. He told me if anyone went into a hospital for any reasosn they have a 50% chance of coming out well or even alive. Said the place is crawling with germs.
(An aside to Poof, the place/hosital is certainly crawling with germs, but most people do come out alive. I've worked in hospitals too. )
I just wanted to comment that I found the comment about Enbrel being "liquid HIV" very interesting. I was warned before taking it to call about any infectious processes that I might experience, including sore throats, sinuses infections (common with Enbrel), diarrhea, etc. If I experienced any infections, the Enbrel was always stopped for one or two weeks to allow my natural immune system to react to the infection. My Rheum wanted to know about anything that might be significant- esp. surgery. I'm hoping and assuming your dad told his RD about the surgery.
I agree that it is up to us to find out as much as we can about our treatments too. We really need to take an active role in our treatments. Along with that, our RD's need to be honest and give us proper instructions and information about these medications that can have serious ramifications.
Having worked in critical care areas, I also wonder why his blood counts weren't picked up pre-op and surgery wasn't cancelled and scheduled for another time. In addition, Vancomycin isn't prescribed for a "mild" staph infection. It sounds like a lot of things could have gone differently to me. However the most important thing is that your dad is ok.
I 've only been on this board for a few weeks, but I learned more about my 25 year-old disease that I had for many years before this. We truly are the experts. We live with it every day. I thank God every day for finding you guys - the computer is worth something after all!
Deanna, thanks for your message. You are truly a treasure to us here -such a kind heart.
Poof - you are so right - the most important doc is the primary doc - mine is an internist. He kept me alive during those critical times in the ICU with sepsis when all the others were fixing me up!
Everyone of you has something important to say. Thanks!I'm so sorry your father has been through all this and sorry that you've had to deal with it too. I've been on enbrel for about a year as well as MTX, prednisone and plaquanil. I've had several infections where I've gone off the enbrel and MTX. I don't count on my GP to tell me to go off if I'm sick. It takes too long to schedule an appointment to be seen. If I think I have an infection, I either call my rheumy and talk to his nurse practitioner, or go to Doctors on Duty armed with all my medical paperwork . I've had diverticulitis twice, sseveral upper respiratory infections, and recently shingles involving an eye which can lead to blindness. These biologic meds are frightening but I guess they beat complete disability. I think we have to be very proactive about having our meds monitored. Frankly, with the way health care is going these days, I don't trust anyone but myself.
I'm sorry your father and you have been through so much. He is very lucky to have a daughter like you to go "to bat" for him.
I have been on enbrel for about two months and luckily have had no problems. Thanks to the boards, I do know what to look for.
One thing that I do in case of emergencies. I keep a list in my wallet beside my id that lists all my meds, the dosage and when I take them. Anytime I go anywhere I tell my pals/family about the list. Any time a new med is added or one taken away, I update the list. It helps to put the date on the list as well just so that drs know it is up to date.
I'll be praying for you and your father.Hello All,
I have not been here for months. It is a long story but I have had my "hands tied" as far as being able to help my dad.
My dad is sort of "okay" , not reall, but he is alive. He is not the same well person he used to be - it frustrates all of us. Every day we ask him "dad, how do you feel today", as a result of this infection he had. He has seen lots of doctors and he says that they all say that he did not need to go off the enbrel before or after his knee surgery. Frankly, I do not believe the doctors have said this (except perhaps the ones at the hospital where the mistake was made...since they do not want to admit any wrongdoing). Can you believe that he still sees the doctor that made so many mistakes and changed his life forever? I want him to change and he is having trouble seeing the facts - because he is on so much medication just to feel okay - he is having trouble remembering.
The only way I can think of to get him to understand is to hear it from other RA sufferers who have specifically been told about how you must go off enbrel if you are having surgery.
If any of you had a discussion with your doctor would you please take a moment to give me a quick reply.
*I think I will also post a new message on this so people dont have to read the whole story.
Many many thanks,
First I want to say...I'm so sorry about your father. I hope he gets well very, very soon.
With that being said, unfortunately, anyone can get a staph infection at any time for any reason. (Ie: surgery, implants, etc.) Did the fact that your father was on those meds contribute to his infection? Probably, but maybe not. There have been plenty of people who ended up with an infection who weren't DMARDS or Biologics. It is an unfortunate risk of anyone who undergoes surgery. In fact, the consent for any surgery most definately says a risk is "infection, bleeding, death, etc".
I hope you father gets well soon.
I hope your father gets well soon.
I am not Enbrel but on Humira, mtx, and pred and will be having a knee replacement after the first of the year. My ortho, family doc, and rd have all said I must stop the meds at least 2 weeks before surgery. I can not understand why your dad wasn't told to stop.
I know how heart wrenching it is to watch your beloved father go thru this. I watched my dad suffer thru cancer and my heart goes out to you. I hope and pray that you can get him to change docs and that he can recover even more from this.I am so sorry for what is happening....Thank you for sharing....if I were in your shoes...i would be keeping notes of everything and when your dad is better and I am sure he will be; contact an attorney and ask his advice on where to go from here.....this never ever should have happened....I recently was treated for a minor sinus infection and the first thing they told me was stop the enbeal untill the antibiotic was gone and I was sympton free......Prayers and good wishes to you my dearThank you for your replies.
Grammaskittles - yes, it is heartwrenching to watch him go through this and Im very sorry about your father (I lost my mom to cancer also).
Phatgirl2- yes, its true that anyone can get an infection and they are rampid these days in hospitals. The way I understand it is -these drugs make people extremely vulnerable to any type of infection...so it is extremely mportant that doctors are on top of these meds and know to get the patients off before surgery if possible, and if the surgery is emergency, to immediately stop this drug.
This is what I hope to verify here as far as what doctors who know these meds have told others regarding surgery and infection.
I stopped MTX and humira 2 weeks before arthoscopic knee surgery....and waited 2 weeks to start on Remicade after the surgery. My RD wanted me to have the sutures out and then a few extra days after that just to be safe. Those docs can defend it all they want and the truth is that he could have gotten a nosocomial infection without being on immune-suppressive meds....but his chances would have been a hell of a lot better if he had taken a break...and those doctore all know just like we all do. Prayers are out to ya girl!Oh wow.....all I can say is *big hugs*, and I will keep you and your father in my thoughts and prayers.
I hope you have documented everything....sounds like a malpractice case if I ever heard one. Wish my friend who practiced law still lived out there, I'd call her up. She moved back to NYC about a year ago though. I wonder if she knows anyone there though....her practice was in Anahiem....Hmmmm.
*hugs* your father's story is my biggest fear!!!
I recently saw on tv where staph infections picked up in a hospital while being treated for anything--is the #1 killer of Americans. Obviously you don't this number displayed all around like heart disease--it is a fact. My brother picked up one back many years ago and never got rid of it. Two years later he died from the staph infection. He did not have RA--he was diabetic. I also find many MDs are not that familiar with the RA meds--and kinda of back off. Your dad's surgeon should have been in contact with his RA doctor. I hope he makes out ok.