Don't know what I should do...

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starrnr
Veteran Member


Date Joined Dec 2005
Total Posts : 1782
   Posted 9/8/2006 9:26 AM (GMT -7)   
I was at the foot surgeon's office yesterday. I have a bad bunion and bone spurs on my left foot that needs to be removed and we were discussing surgery. Ok, that's fine. Here's the problem -- because I'm on Remicade & MTX, which as we know lowers our immune system, the surgeon feels that I need to be off of work (and my foot) for 4 weeks. Uh, hello? I had this same surgery done 20 years ago (right foot) and I was back to work (funky wooden shoe included) within a week. I told him that. His response was, you weren't on these medicines then. When did my medicines start defining me and my health? I haven't been sick, my blood tests come back just fine, etc.

My rheumy told me that I would have to stop the MTX 3 weeks before surgery -- fine, I can do that. I just had my infusion last week, so I'm covered there. I don't get it -- I've never had a problem healing or with infections and what makes them think that would change, even with these med's? I slammed my finger in the car door a few weeks back -- went to the doctor (gal's I worked with made me, thought I needed stitches), it healed within 2 weeks, no stitches, no infections, it's fine.

Purely rhetorical question here -- if I was to totally stop all med's...period, would my immune system ever recover?

We also noted that my AS has attacked the joint at my big toe (since my right foot is not affected the same way, its not my RA), biologics and MTX notwithstanding. So what's the point of me taking this stuff anyway?

I did get the surgeon down to 2 weeks minimum off my feet, but still...I think he's way overboard in concern. Am I being too naive here? I'm so upset about all of this, totally knocked me sideways. I'm supposed to call him back today with a yes/no on the surgery date. I'm so conflicted about all of this.

Geez, I hope some of this rambling and ranting made sense. My apologies if it didn't.

Thanks for listening...
"My "Trifecta" - CD, AS & RA...

Co-Moderator Crohn's Forum

Post Edited (starrnr) : 9/8/2006 10:29:17 AM (GMT-6)


SnowyLynne
Veteran Member


Date Joined Apr 2004
Total Posts : 1539
   Posted 9/8/2006 10:45 AM (GMT -7)   
Listen to the Dr.
SnowyLynne


Marius123
Regular Member


Date Joined Aug 2006
Total Posts : 142
   Posted 9/9/2006 6:00 AM (GMT -7)   
starrnr said...
I was at the foot surgeon's office yesterday. I have a bad bunion and bone spurs on my left foot that needs to be removed and we were discussing surgery. Ok, that's fine. Here's the problem -- because I'm on Remicade & MTX, which as we know lowers our immune system, the surgeon feels that I need to be off of work (and my foot) for 4 weeks. Uh, hello? I had this same surgery done 20 years ago (right foot) and I was back to work (funky wooden shoe included) within a week. I told him that. His response was, you weren't on these medicines then. When did my medicines start defining me and my health? I haven't been sick, my blood tests come back just fine, etc.

My rheumy told me that I would have to stop the MTX 3 weeks before surgery -- fine, I can do that. I just had my infusion last week, so I'm covered there. I don't get it -- I've never had a problem healing or with infections and what makes them think that would change, even with these med's? I slammed my finger in the car door a few weeks back -- went to the doctor (gal's I worked with made me, thought I needed stitches), it healed within 2 weeks, no stitches, no infections, it's fine.

Purely rhetorical question here -- if I was to totally stop all med's...period, would my immune system ever recover?

We also noted that my AS has attacked the joint at my big toe (since my right foot is not affected the same way, its not my RA), biologics and MTX notwithstanding. So what's the point of me taking this stuff anyway?

I did get the surgeon down to 2 weeks minimum off my feet, but still...I think he's way overboard in concern. Am I being too naive here? I'm so upset about all of this, totally knocked me sideways. I'm supposed to call him back today with a yes/no on the surgery date. I'm so conflicted about all of this.

Geez, I hope some of this rambling and ranting made sense. My apologies if it didn't.

Thanks for listening...

Listen to the doc, it's harmless.
Docs have shown many times that they do not know what they do, but I think this issue is harmless. I beleive nothing worst can happen if you just listen him/her.
Official dx, but I have doubts: chronic reiter's syndrome (1yr and 6 mnths).
suffer form chronic uveitis, conjuctivitis, mild arthritis, subfebrile fever and fatigue, also showing some strange kidney pain


Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 9/9/2006 10:40 AM (GMT -7)   
Hey there Sherree... did the doc say why he reccommended the 4 weeks? Other than 'cause of your meds? Would he be open to taking it a week at a time? Say re-evaluate you 1 week post op and see your progress that way if you OK, you can go back to work, and if you still need a bit more time, see you in another week? Is he saying that maybe since you're older now and with the meds you need longer to heal? Hhhmmm.... I am curious about this.... hang in there, and keep us posted.... When are you to have the surgery?
Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs
Current Meds -  Enbrel/Prevacid/Synthroid/Nitrofurantoin
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots
Additional Supplements - Multi-Vitamin/Bromelian/Acidophilus/Green Tea

CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 9/9/2006 9:29 PM (GMT -7)   
With all the medical lawsuits these days, the doctors have to cover their behinds. Even though you say you heal well, he does not know that but is looking out for your best interest and health (and his medical practice as well.)

I think Ducky has a great suggestion in asking to take it week by week. You just never know. Your system is different taking these DMARDS and biologicals - even if just a little, like it or not.
 
Yes, your immune system should change back to stronger after being off the Remicade eventually, but it does/can take some time. I was on Remicade for almost 2 years - I have always had a weak immune system, I had to stop taking it because it broke mine down so bad I was constantly sick (seriously sick, not minor colds, etc.)  After being off it for 16 months, I can finally say (knock on wood) my immune system seems to have leveled off and improved (but I was extremely sick for an additional 9 months after stopping the infusions.)
 
Good luck. Let us know what happens. ***
 


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13481
   Posted 9/11/2006 8:35 PM (GMT -7)   
Just to let you know what happened to me. I have been on Remicade & Imuran for 4 yrs. My infusions are every 4 weeks for CD. Two years ago I had both of my knees scoped three weeks apart. This was my 4th surgery on the left knee and 1st on my right knee. I always bounced right back after surgery. Not this time, it took my knees one year to heal, why because of the Remicade. My ortho had me ask my gi prior to surgery would the Remicade make any difference, he said no-boy was he wrong. Listen to your dr.

Susie


elcamino
Veteran Member


Date Joined Sep 2005
Total Posts : 1744
   Posted 9/12/2006 7:16 AM (GMT -7)   

I guess I can understand the doctor's concern, but I understand your side as well.  Is it possible for you to telecommute for a couple of weeks?  That way, you wouldn't be on your feet at the job, but sitting in your nice and comfy home behind a computer. I don't know what you do for a living, but if it's a profession amenable to teleworking, that might be another solution.

Best of luck with whatever you decide to do.

Elcamino


Current dx: Rheumatoid Arthritis
Suspected dx: UCTD/Early Lupus
Current Meds: Enbrel, Plaquenil, Aciphex, Ultracet, Zyrtec, Allavert-D, Zantac, Tylenol PM
Past Meds: Relafen, Vioxx, Mobic, Voltaren, Sulfasalazine, Entocort, Prednisone, Humira, Reglan


Momf3boyz62
Regular Member


Date Joined Aug 2006
Total Posts : 21
   Posted 9/12/2006 9:18 AM (GMT -7)   

I agree, the Docs have to cover their behinds and are not sure how your body will react to the surgery. I bet if you ask for week to week, they will agree. Glad your blood results are staying good tho. Mine went haywire after Metho. for two years, and I have Feltys which is low counts anyway. For the first time in 7 years my whites are normal and Im only on  Pred. Hoping for a new drug to try once to Iowa City.

Take care and dont stress.(Not good for you) nono Cheryl


Diag. with RA/Felty's Syndrome January 99.
Previous meds-Methotrexate,(killed my immune system for 2 years) Enbrel,(didnt work) Humira, Ibuprofen, Arava,(allergic to?) Prednisone, Folic Acid.
Now only on Prednisone because of an allergic reaction they can't figure out, so Im heading to U.of I hospitals and clinics in Sept. for testing, new meds!? Who knows, who cares! Just want off steroids so I can lose weight.


starrnr
Veteran Member


Date Joined Dec 2005
Total Posts : 1782
   Posted 9/16/2006 7:53 AM (GMT -7)   
Hi all, sorry for the late reply. I appreciate the comments. Let me clarify about the time thing with regards to the recovery. Normally, he would have me off for 2 weeks. However, because of the med's I'm on and "his" fear of my susceptibility to infection, he wanted me to be off for 4 weeks. I'm sorry, but that's just unacceptable to me. If I had a known pattern of getting infections over the past 3 years from the Enbrel, MTX and now Remicade, I could understand this and would certainly think twice about having any type of invasive procedure. I'm 'healthy' so to speak and just didn't like it that he was basing this on his limited knowledge of my medicines. I've had several procedures done by him in the past - 'pre-meds' so this isn't a first time visit.

Unfortunately, I can't work from home -- although I do work in an office, it's just too complicated to try and telecommute - besides, I have dialup here in the sticks and it would take all day to send stuff back/forth to the office. The other thing that's a problem, is we're gearing up for quite a few projects to start and it's just a mess to crash teach a temp.

In any case, I've put off the surgery until the winter time (my husband suggested this). Then, I can sit home with my foot up for 2 weeks while its pouring rain or snowing. Hopefully that will help me be less antsy about staying home. I will get one of those walking boots prior to going back to work and will still have to stay off of it as much as possible - but that's ok. Even the procedure has changed since I had it done on my other foot. He uses pins that dissolve rather than those that stick out and need to be removed later (like I had years ago)- that also removes chances for infection.

To answer the question about taking it week by week, yes, we would be doing that as well. If I'm not ready to return after 2 weeks (for whatever reason), then I stay home. My boss and I talked about that exact scenario.

I do listen to my doctors -- however, when they make assumptions about things that they shouldn't, that's when I question them. I think it's my only defense since everything else seems to be out of my control!

Thanks for your comments and suggestions - I really appreciate them.
"My "Trifecta" - CD, AS & RA...

Co-Moderator Crohn's Forum

Post Edited (starrnr) : 9/16/2006 8:56:06 AM (GMT-6)


Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 9/16/2006 9:01 AM (GMT -7)   
Hey there! Do you think your doctor is trying to err on the side of caution? Since he's not familiar with your meds and how your body will react to them? I know one of my doctors hadn't even HEARD of Enbrel and refused to "listen" to my testimonies when it came to my treatments... then when everything was ok, he said, "Well, I guess you were right..." :) At least he is open to re-evaluting you week by week, that way you'll only be away from work as less as possible... good luck to you, when in the winter is your surgery scheduled for?
Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs
Current Meds -  Enbrel/Prevacid/Synthroid/Nitrofurantoin
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots
Additional Supplements - Multi-Vitamin/Bromelian/Acidophilus/Green Tea

starrnr
Veteran Member


Date Joined Dec 2005
Total Posts : 1782
   Posted 9/16/2006 5:57 PM (GMT -7)   
Hey Ducky -- I'm guessing he is trying to be safe and cautious. I should probably cut the man some slack, ya think?! At least I did get him down to the 'normal' amount of time off and a 'we'll play it by ear' attitude for the rest. I'm hoping to have it done right after Thanksgiving or right after Christmas. I need to be able to be up and on my feet (completely) by February -- I have a lot competitions that start in February that require me to be on my feet!

Ah the joys of it all!!!
"My "Trifecta" - CD, AS & RA...

Co-Moderator Crohn's Forum


Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 9/16/2006 6:12 PM (GMT -7)   
What competitions do you have (if you don't mind me asking)? keep us posted once you schedule your surgery, so we can check up on ya! :)
Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs
Current Meds -  Enbrel/Prevacid/Synthroid/Nitrofurantoin
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots
Additional Supplements - Multi-Vitamin/Bromelian/Acidophilus/Green Tea

starrnr
Veteran Member


Date Joined Dec 2005
Total Posts : 1782
   Posted 9/16/2006 6:17 PM (GMT -7)   
At the risk of offending who know's how many people, I'm a trapshooter. I only shoot at targets in a safe manner with a bunch of educated, safety conscious men and women! LoL The shooting season typically ends just around Thanksgiving and picks up again in February. Weather conditions just make it miserable to shoot. In any case, that's why I need to be up and at 'um by Feb. I'll definitely keep ya posted. Thanks so much!
"My "Trifecta" - CD, AS & RA...

Co-Moderator Crohn's Forum


Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 9/16/2006 6:46 PM (GMT -7)   
That's right, I remember we've had this discussion before... sorry! I can't remember anything anymore... good luck to ya!
Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs
Current Meds -  Enbrel/Prevacid/Synthroid/Nitrofurantoin
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots
Additional Supplements - Multi-Vitamin/Bromelian/Acidophilus/Green Tea
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