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Not Pain Free...but Better...What to Do Now?

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Rheumatoid Arthritis
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Posted 2/13/2007 2:10 AM (GMT 0)
I have been taking a fairly low dose of Sinequan (40 to 60 mg) since this past Monday. While I am not pain free, the awful pain that has plagued me in my neck, my lower back, and my hips has abated about 80 percent. That means it is moderate pain, not severe. I am going to see my new rheumatologist on Friday. I have been nearly immobilized from pain and stiffness for three years so he is going to send me to physical therapy. He got approval for an MRI of the lumbar spine, and the technician hinted that it was normal.

My dilemma is that I don't want to take this Enbrel any longer unless I desperately need it. With a modest dose of an NSAID plus Sinequan, I think I will recover and be active again (I also take lithium at 600 mg/bedtime, xanax at 50 mg/2x day, and methylphenidate at 20 mg/3x day. I still don't know why I have the pain - if it is from lyme or fibromyalgia or both or something else.

Has anybody else here abandoned the biologics after finding another medication that works? If you were me, would you keep trying to find the origin of the pain? It seems to be a central nervous system issue, but that is all I know. My opinion is that these drugs should be saved for those people who need them most. What do you guys think? Maybe I should take one dose a week of Enbrel until I get completely on my feet. I am confused...(by the way, thanks for comments some of you made in response to other posts)

Eve

Posted 2/13/2007 2:59 AM (GMT 0)
sad  awe Eve...you are in a dilema!

hmmm?  speaking as someone who's taken the Florence Nightengale Oath...i can totally understand what you are trying to figure out.

sure you want to eliminate meds...it's only a normal thing to want.  and i am very pleased that you found an agent that relieves much of the pains.

 

on the other hand...keep in mind that Enbrel is actually inhibiting things from getting worse, and unlike the past...these meds are used as a FIRST line of treatemt...so YOU ARE a person who "really" needs them.

no other drugs help to slow the joint destruction and help prevent joint contractures.

 

for a chronic progressive inflammatory arthritis...the Enbrel like meds are really key.

 

if i were in your situation...i wouldn't make a decision right now.  i would wait at least a another few months to see if i would change my mind.  i would also tell your ideas to your new rheummy & pick the docs brain about it. get some opinions.

 

it might work out as to where you can do a "wait & see" experiment.  eliminate the drug for a while and see if theres a spike in flares/worsening, etc....but that's a risk you really REALLY have to want to take.  perhaps instead of Enbrel the doc might want to introduce a few more DMARDS in pill form to control things.

 

i still will always support and advocate a persons choice.  it's a very personal thing you're going through.  do weigh the risks and benefits. do take a lot of time deciding. in the end...you will do what is right for you to do at this time. the decision will come easily.  if having doubts & confused now?...might make the wrong choice.

 

sincerely,

erin

 

Posted 2/13/2007 3:07 AM (GMT 0)
I know what you are saying. I am not totally convinced that I have a progressive form of arthritis. My pain and discomfort may come from a central nervous system disorder. That is at the crux of all of this dilemma. I don't know who can really tell me if I am going down hill from degenerative arthritis! I truly hate injecting Enbrel. I just can't get the risks out of my mind. I can't take steroids because they drive me crazy, and I may have lyme disease. Not sure why, but the other rheumatologist said no sulfa drugs. Many uncertainties, no answers.

Thanks for your thoughtful response, Erin. I will keep pondering. I may wait awhile before springing my doubts on the new doctor. Poor guy.
Posted 2/13/2007 3:26 AM (GMT 0)
ever do a spinal tap for Lymes?
i put it off for years...but it's really the ONLY sure fire way of diagnosing Lymes. bloodwork for Lyme can be sooooo vague & a lot of false positives.
you know...you're gut is telling you something, it might be right.
you don't happen to live in NY or NJ do you? i can give you the name of the neurologist that treated my Lyme.
take care Eve
Posted 2/13/2007 3:33 AM (GMT 0)
No, I haven't done a spinal tap. I think that thinking has changed about spinal taps and lyme. It seems to me that they are rarely done, because it s possible to have lyme without showing up on the spinal tap. I am going to assume that my lyme disease is in remission, if I have it at all, and let it rest. I think the doctor that diagnosed lyme was going on very slim evidence. I have some other opinions, too, but I don't want to get in legal trouble by venting on this site. I live in the Washington metro area. I would like to know the name and contact information for the doctor who treated your lyme anyway. When my financial situation picks up, I just might pay him a visit. Do you guys post names and contact information on the site? If not, you can send the information to <[email protected]>

Thanks, Erin.

Eve
Posted 2/13/2007 4:52 PM (GMT 0)
no prob...i'll email it to you
Posted 2/13/2007 5:13 PM (GMT 0)

Hi Eve,

While I understand why you would want to back down to "lesser" drugs, you might want to keep in mind that enbrel may even be a safer drug than the one you listed?    Plus, Erin already pointed out that enbrel can actually stop the arthritic progression; not sure about the other drug you were taking.

El

Posted 2/13/2007 5:28 PM (GMT 0)
Erin and elcamino, thank you for your comments. You both make valid and helpful points.

Sinequan is a tricyclic antidepressant that has been around for 50 years. It is extremely safe, especially at the low dose that I am taking. Aside from its antidepressant efforts, it also works as an antihistamine and pain reliever. It seems to keep me from being obsessive. I think that is because it keeps my brain from swelling up. I took it one evening and the next day my phobic behavior disappeared. My mom also took Sinequan without incident for many years. Definitely hear what you are saying about Enbrel stopping the arthritic progression. I am still not totally convinced that I have a progressive form of arthritis. From what I can tell, the MRIs show nothing at all. I have bone spurs and mild degenerative disease of the spine typical of someone my age. My father had the same spinal condition that I have, and it is my understanding that I meet the clinical criteria for anklyosing spondylitis, although I don't actually have it.

However, I will keep an open mind and will keep seeing the rheumatologist unless I am convinced that I need to re-evaluate. I really do dislike taking the Enbrel. I believe I have a disorder of the central nervous sytem, and that is one reason why I don't want to take Enbrel. Next step is to get a full evaluation by a neurologist. I don't think the MRIs showed any lesions on my spine...but I don't know about the rest of me. My shrink said that this kind of pain is characteristic of a CNS disease.

I wish I could run away to an island and spend a couple of months lolling on a beach. I have been in doctors offices non-stop since last March. I need a break. Don't you think it is a good idea sometimes to just let it all go for a while?
Posted 2/13/2007 5:40 PM (GMT 0)

Yes, I wish i could run away to an island!  I hear you about spending too much time in doctor's offices.  If you have a CNS problem, you are right--perhaps enbrel is not the right drug for you, as it has been related to MS (with other tnf-inhibitors).

El

Posted 2/13/2007 5:53 PM (GMT 0)
Don't get me wrong. Enbrel is an amazing drug. I will probably continue to take it, perhaps once a week while I get some additional medical counsel. I just hate taking it and am afraid of it. I shouldn't be spreading fear on this board. To balance out this discussion, I know that recently it was announced (I don't know where) that Enbrel is safer than originally believed. Aside from apprehensions about a CNS disorder, my main problem right now is that I get constant infections and I don't have a doctor 24/7 to answer my questions.
Posted 2/13/2007 6:34 PM (GMT 0)
Hey Eve.. don't ever be scared to voice your opinions/feelings on this board.. that's what we are here for.. I think at one time we have all been apprehensive about the meds we've been on.. hang in there and keep us posted..

Duck
Posted 2/13/2007 6:40 PM (GMT 0)
Thanks, Ducky. All of you are very, very kind. It's great to have a place where it is possible to be honest. In the real world, nobody wants to hear about this kind of soul searching. On the other hand, I recognize that I may have an irrational level of fear. It is just so hard to know what to do and how to go about getting adequate information to make an informed decision. My clients say that I am like a dog with a bone when it comes to solving their problems. I bring the same approach to my own personal life. It can be hard to be around me because of that mindset. I just don't let things go. Along those lines, I feel that the pharmaceutical companies often hide the truth from consumers.

Eve
Posted 2/13/2007 7:31 PM (GMT 0)
wassup Eve,

 

back to the Lyme-thang...you mentioned a few posts above that it's in a "remission"?  without antibiotic treatment Lymes cannot go away. it can only get worse & end up in CNS neuro-Lyme!  that's what happened to me...so the doc i saw, she specialized in Neuro-Lymes.  Dr. Nancy L. Mueller in Englewood Cliffs NJ on Palisades Avenue. {i figure to post it here...might be useful to others}  she really is the most aweson physician EVER!  really does the "whole person" sort of treatment.  there's even a psychiatrist that is available in her office too!

 

CNS Lymes WILL BE DETECTED in a spinal absolutely.

 

personally...i did take a "vacation" from medicine & docs, but that was when i was still up & able...i had this half-jacked idea i could "sweat out" everything by working out! hah.  oh well.

 

the mind and well being are just as important...if you do feel like you're about to "break" from being overloaded...maybe it's a good idea to take a mini-break.  doctors DO allow "drug holidays"!  so it's actually something you shouldn't fear telling your doc!  because really...how much can one person take?

Posted 2/13/2007 7:56 PM (GMT 0)
Hi, erin K, thank you for the information about the doctor. I have been treated with antibiotics for nearly a year. In addition, I had a long course of high doses of antibiotics that are appropriate for lyme soon after the tickbite - which was in 2003. My old doc believed I had neuro lyme, but I couldn't be treated for it because I have too much pain and swelling from the higher dose antibiotics. I had unbearable pain in my neck, lower back, and hips on 1000 mg of biaxin, had a fungal infection on my face, and developed a very serious urinary tract infection. With the Enbrel thrown into the mix, I was living in hell. Since the old doc couldn't or didn't want to treat, partly because she was afraid of throwing me into RA or lupus, it wasn't worth the time and energy to travel to her office.

The new rheumatologist doesn't think I have lyme based on the Western blot test results. He doesn't believe in chronic lyme. Unfortunately, most of the lyme literate MDs don't take insurance, so I can't move forward without big bucks because I made the decision to change doctors. And, I was told by the old doc that I would be completely incapacitated for two to four years if I started high dose antibiotics beginning with an IV catheter in my chest. Since I am already 52 years old (feel and look much younger), I would be lying in bed through my 50s with no mobility and no life, since the old doc didn't want to send me for physical therapy and didn't even recommend an MRI of the lumbar spine. So, there you go. I am absolutely unwilling to live as an invalid, so I have to find a doctor who will work out a more humane treatment protocol. As far as things go, I feel good and have no lyme symptoms. The docs don't treat unless you are having clinical symptoms, and I don't have any now.

I know what you mean about the mind and body. The immune system can handle a great deal before it breaks down, so it is always worth an effort to manage a disease without major drugs or intervention. Then, there comes a point when things get too tough to handle, and then we decide to rely on the medical establishment.
Posted 2/14/2007 1:28 AM (GMT 0)
Oh I do agree.. I think that people tend to leave certain key things out sometimes when you ask for more info.. that's why sites like this are so great.. you've got so many different people on the same meds, so you have a good cross section of the differnt side effects.. since everyone is different you can poll the people and make informed decisions on your own.. Hang in there.. we'll get you through this!

Duck
Posted 2/14/2007 3:24 AM (GMT 0)
Burrascano is the top clinician in the field of lyme treatment. He has treated approximately 4000 lyme patients. Recently, he stopped medical care to focus on research. His guidelines are featured on the International Lyme and Associated Diseases Association at http://www.ilads.org/burrascano_1102.htm

My lyme doctor did not recommend a spinal tap as she follows the ILADS guidelines. Here is what Burrascano says about spinal taps.

Spinal taps are not routinely recommended, as a negative tap does not rule out Lyme. Antibodies to Bb most commonly are found in Lyme meningitis, but are rarely seen in non-meningitic CNS infection, including even advanced encephalopathy. Even in meningitis, antibodies are detected in the CSF in less than 20% of patients with late disease. Therefore, spinal taps are only performed on patients with pronounced neurological manifestations in whom the diagnosis is uncertain, if they are seronegative, or are still significantly symptomatic after completion of treatment. When done, the goal is to rule out other conditions, and to determine if Bb antigens or nucleic acids are present. It is especially important to look for elevated protein and mononuclear cells, which would dictate the need for more aggressive therapy, as well as the opening pressure, which can be elevated and add to headaches, especially in children.
Posted 5/29/2012 2:26 PM (GMT 0)
Hi Eve

Can you please let us know how you feeling? How is your back pain and are you still on Enbrel?

take care
Posted 5/29/2012 2:28 PM (GMT 0)
Hi Eve

Can you please let us know how you feeling? How is your back pain and are you still on Enbrel?

take care
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