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Managing Infections on Enbrel...And Going Nuts

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Posted 2/5/2007 3:39 AM (GMT 0)
Hi, everybody,

I started Enbrel sometime around August of last year. However, I seem to spend most of my time not being able to take it...yet.  A couple of months ago, my doctor called me to her office and said I had a serious UTI. I had to go off Enbrel for a few weeks because of the infection and some surgery I was having. Then, she told me I could go back on Enbrel even with an infection if I was taking the antibiotics. The weird part of geting the infection was that I didn't have a clue that I had it!  No symptoms, no fever. And, it was apparently a bad one. I had more symptoms and, afraid of having an infection, since I take Enbrel, I went ahead and took an antibiotic and went to see my GP the next day. Whereupon, my GP couldn't give me a urine test because it would have been invalid since I took an antibiotic. So, she put me on a 10 day course of antibiotics, followed by another round of antibiotics for additional surgery . Now, I don't know what to do. I am hurting and aching and need an Enbrel shot. The old rheumatologist that I since quit seeing said it was okay to take the Enbrel with an infection as long as I took the antibiotics. My bladder is really bothering me, and I don't know if it is just inflamed or still infected.

After I finish all this minor surgery, my GP is going to place me on antibiotic suppressive therapy - small daily dose of antibiotics to minimize the risk of sinus and urinary tract infections. In the meantime, my new rheumatologist doesn't want anything to do with my infections; he says that is the responsibility of my GP.  She is great, but I don't really think she knows much about Enbrel.  What I am supposed to do? I feel like taking Enbrel is risky and there is very little medical support for patients.

Finally, off topic, I feel that I am going to lose my mind. I am 52 and this reactive arthritis came on when I was about 49. I have a clinical profile of someone with AS, but I don't actually have that disease. I can't see the light at the end of the tunnel.  I may also have lyme disease, but I am not yet convinced that I do. It is a hard disease to diagnose. After reading the posts on neurological problems after taking Enbrel and other biologics, I am even more discouraged. I have been in bed for three years. I run my business from my bed, but I rarely get out to exercise because I just can't manage it. I can't live a normal life or any semblance of one at the moment. The new rheumatologist was aghast that the old one did not send me for an MRI of the spine because I have had severe back pain for three years. He thinks it is from the ReA, but he can't send me for physical therapy until I have the MRI.  The insurance company has it under medical review but has not yet approved the MRI. My family is at the end of their collective rope. I have several family members living with me but my despair over the arthritis is more than they can take. I am just wondering how the rest of you manage to cope. I am finding it very hard to deal with all of this.

Eve

Posted 2/6/2007 8:14 PM (GMT 0)
eve,
what are your white blood cell counts? this sounds similar to being very immunosuppressed. and with that...infections are fast to occur if exposed to bacteria & viruses.
have they done any blood cultures to rule out sepsis?
Posted 2/6/2007 8:22 PM (GMT 0)
I haven't seen my white counts recently. My white counts were very high a year ago, so I had a long way to fall. Doctors are carefully monitoring them. That's all I know. I recently had a blood test to look at all of that. I am sure someone would have called me. My problem is not having a medical team that can answer my constant questions, and feeling very isolated with this disease.
Posted 2/7/2007 5:18 AM (GMT 0)
have you told anyone (i mean your doc's or RNs) that "you feel isolated"?
you just wrote a very VITAL statement above...seriously.
what you're feeling and what you're NOT GETTING from your team of docs could be just why you're not making the improvements you desire!

i had to literally break down in front of my rheummy before he really turned around and started to treat me.
that took over 2 years! i had to flat out spill my emotions and tell him exactly where i needed help, what my goals were, what i want done, and had to tell him just how difficult it was to live.

you should really express what you're feeling & confide in your doc...it could make a world of difference. in this way...they can't ignore things.
you hit the nail on the head...look back on what you just wrote. you gave a very specific need that needs to be met by your doc! that's very important Eve.

if anything...better communication can really lead to better treatment.
take god care Eve.
{{{{{{{{{{{ hugs }}}}}}}}}}}}}
Posted 2/7/2007 5:41 AM (GMT 0)
Hi, Erin,

You are so very kind. I ran into an incredibly difficult situation with a previous doctor, and I just changed rheumatolgists. Wish I could tell the story here - it was a weird and maybe outrageous situation - but I don't want to risk being sued. I am actually a professional writer and need to settle down and write a book about all of the stuff I have been through since I first got seriously ill at the end of 2003. It includes two tick bites, an ensuring illness, job loss, bankruptcy, diagnosis of lyme and reactive arthritis, and a bedridden lifestyle, not to mention the trauma shared by many of us of injecting a major medication by needle into our abdomen. Almost incidentally, I have my own business which I run from my bed. Through the haze of a stream of drugs and doctors, I have managed to keep working. I have lulls where I don't feel good, but I have worked through flares, infections, and the influence of Vicodan to get work to my clients.

I have only seen my new rheumatologist one time, so he's not to blame. He doesn't want to manage any part of my problems with infections and has placed the mantle of that work on my GP. She is a lovely human being but she is only one person. She does what she can do, but she is not an expert on Enbrel. My shrink doesn't quite get all of this. When I saw him yesterday, he said i had become "phobic." He has no clue of the real risks involved in taking Enbrel. I am going to educate him by providing him with a copy of the product monograph. A few weeks ago, to deal with my serious pain and nausea, he prescribed Marinol. That is a THC derivative taken by AIDS and cancer patients. He thinks I need to go off into the wild blue yonder and feel good. I am not sure that is what I need. Marinol is 200 times more powerful than marijuana, but it is legal. Apparently, it makes patients euphoric but most people don't like the feeling because it is like being Alice in Wonderland. Yesterday, this same shrink did place me on a small dose of sinequan, a tricylic antidepressant, to deal with the pain and help me sleep.

So, I am not sure I can easily address my feeling of isolation. I know that I am not alone - that many of you probably have stories that are similar - or worse. Some problems can't be solved quickly. I miss being able to rush out the door and take a walk without having to deal with my pain and difficulty moving.

Eve
Posted 2/7/2007 7:03 AM (GMT 0)
wow are we similar.  Lyme bacteria triggered the AI disorders i have now.

Eve i so hope something changes for the better regarding your care by the physicians.

"phobic"?  eyes that was a bit out of line ya think? eyes geesh.

were you really bothered a lot by the self injections?  i know the Enbrel 50mg prefilled syringes were the  devil WORST! devil talk about pain!

 

that's fantastic you can do some work at home.  i wish i could practice my craft at home.  the closest thing i get to it is HERE! but it comes no where close to actual nursing...but the few instances where i can research and help someone makes me happy & feel usefull. :-)

 

being bedridden is a strange thing isn't it?  i have been having much more difficulty lately in dealing with it.  i would give just about anything to just go for a walk or go to the store by myself or to the malbox.  it's like...there was no plan for this.  i never expected this in my life.

 

here's to making the best of things. you take care Eve.

peace/love

erin

 

BTW...what's another name for marinol? never heard of it.  is it similar to Megace? {it's an appetitie stimulant typically used in AIDS and CA pt's.} it's not in my med book & was curius as to what it is.

Posted 2/7/2007 7:26 AM (GMT 0)
Erin, I found this:

MARINOL is a type of medicine called a cannabinoid. MARINOL attaches to special receptors in the brain—much like a key fits in a lock.

The US Food and Drug Administration (FDA) approved MARINOL to treat nausea and vomiting associated with cancer chemotherapy in patients who have failed to respond adequately to conventional treatments.

The FDA also approved MARINOL to treat appetite loss associated with weight loss in people with acquired immunodeficiency syndrome (AIDS). If you have HIV/AIDS, your health care professional may prescribe MARINOL to help stimulate your appetite.

http://www.marinol.com/aboutmarinol/index.html
Posted 2/7/2007 7:26 AM (GMT 0)
Hi, Erin,

I think you are very much younger than I am. I am young looking and at heart, but actually turned 52 this year. I can't believe it. I never expected this to happen. No indeed. It didn't hit me that my father had the same disease. I just never made the connection.

I am still not certain that I have lyme. I had some reactive bands but it is unclear to me that I really have it. I was drowned in antibiotics a few months after the tickbite, and the abx that I took was powerful enough to push back the lyme for a long time since it is slow growing. Right now, I am focused on the reactive arthritis and will get back to the lyme later on if I have symptoms. I have been on abx for a year, mostly at a maintenance dose, and I do feel better than I did a year ago. On the other hand, I had an undetected tooth abcess that had gone untreated for years and years. My dentist neglected to tell me about it, although he admitted knowing that the tooth had gone bad. After i had the tooth pulled two months ago, my mysterious fever of unknown origin went away. Go figure.

Yes, I am fortunate to be able to work in bed. I can make it to client meetings and most of the time can manage to sit in one place for a few hours. My clients know what happened and they stuck by me. Amazing.

I thought of writing a play about being bedridden, but my brother said one had already been written. Maybe it doesn't matter. My play would be different. I am not a good sick person. I whine all the time. And then I whine some more. I put whine into my soup, my cereal, my coffee, my ice cream. I eat and sleep and whine and work.

I think I did appear phobic to my family and my shrink. I wasn't sleeping because I toss and turn from pain and anxiety. One of my doctors thinks I am headed down the path to fibromyalgia. I think that FM can be made worse by stress and sleeping problems. I was trying to head it off at the pass by seeing the shrink and getting a prescription for sinequan. At 20 milligrams, a very small dose, I passed out last night. Today, with some sleep, I did not appear to be phobic. Sleep can do weird things to a person and can distort reality. If I am not actually phobic, I do a good imitation of someone ridden by all kinds of anxieties and fears when I am tired and in pain. So, I appear phobic sometimes under certain circumstances. I love my shrink. He is very unusual. He hates depressed and unhappy people. I wore a new green sweater yesterday just to make sure that I didn't look too blue. He had a student in the room observing. I sat down in the chair and said, "I wore this green sweater just for you. I wanted to look cheerful. I know you hate depressed people." Hahaha. I bet that student was wondering what the heck was going on: a shrink being accused by his patient of hating depressed people. He protested, "Oh, no, that's not true." "Yes it is," I said. He gave up because he knows it's true.

Marionol, not sure it is the same as Megace. It gets rid of nausea and may stimulate the appetite. I will look around to see if it is sold under other names. I still don't want to take it. My shrink believes in doling out medications that will improve a patient's quality of life. But, this one, ugggghhhh. Not so sure.

Sweet Dreams to All.

Eve
Posted 2/8/2007 4:32 PM (GMT 0)

Eve,

I just got back in town from a business trip, and I haven't had time to read all of the replies.  One thing that caught my eye about your post, though, was that your old rheumy told you it was ok to continue enbrel as long as you were taking antibiotics?  I don't think that's the case, especially if you have a severe infection (in your case a UTI).  I know that my rheumy does not support that--even if you are taking the antibiotics, you're not giving your body enough of a chance to respond to the antibiotics if you're still taking the enbrel.  with a minor infection, I could see continuing the enbrel.  But with a serious infection--no!

I hope you feel better soon--and you should talk to your new rheumy about this.

El

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