One major flare...

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starrnr
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Date Joined Dec 2005
Total Posts : 1782
   Posted 2/13/2007 9:57 PM (GMT -7)   
I give up...just when I think things are finally settling down BAM... please excuse the venting, but I'm at my wits end.

My AS & RA have been wonderfully controlled (except for my heels lately) and I've been feeling really well...almost my old self for the first time in a very long time. about a week or so ago, I had a Crohn's flare -- it started with a partial obstruction that knocked my socks off. Well, that flare in turn, sent me into a rip-roaring AS & RA flare and now I'm walking like an old lady again. I could just cry. I finally broke down and took pain meds (which I normally don't do because they bind me horribly and cause more CD related problems) - but they didn't really help.

My next infusion is Tuesday and for the first time in a long time, I'm worried it won't help. The MTX doesn't seem to be as effective either. I'm a mess and I'm having one heck of a pity party.

Any suggestions to help me get through until Tuesday? I'm hurting from head to toe.

Boy, it's been along time since I've done this (or felt this way).

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

Co-Moderator Crohn's Forum

Remicade every 6 weeks, Methotrexate weekly, Folic Acid daily


Ducky
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Date Joined Mar 2005
Total Posts : 3199
   Posted 2/13/2007 9:59 PM (GMT -7)   
Hey there.. uh-oh.. not good... Do you think you can get in to see your doc early and start getting your Remicade infusions more often? Or maybe they can increase your dosage of MTX? What pain meds have you taken? Have they helped at all? Hang in there..

Duck
Moderator of Arthritis/Epilepsy Forums
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
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Date Joined Dec 2005
Total Posts : 1782
   Posted 2/13/2007 10:11 PM (GMT -7)   
Hey Ducky, thanks.

I'm on the 6 week infusion plan - has worked wonderfully until now. I'm at .7 ml injectible (17.5 mgs?) on the MTX. Don't you just love how inflammation just travels all over? My crohn's hasn't really been "controlled", but my AS/RA have been. I can deal with the CD stuff, but this all over hurting is for the birds. I took Darvocet. My vicodin was expired (and I don't like it anyway). It sorta kinda works...makes me more stupid than anything! I just feel so deflated and like I said, I'm having a pity party... I just hate this feeling. I'm going to try a hot shower - maybe that will help - who knows. Thanks again...
"My "Trifecta" - CD, AS & RA...

Co-Moderator Crohn's Forum

Remicade every 6 weeks, Methotrexate weekly, Folic Acid daily


Harley Diva
Regular Member


Date Joined Oct 2006
Total Posts : 160
   Posted 2/13/2007 11:03 PM (GMT -7)   
Hope this passes soon for you. Maybe they can get you in sooner for an infusion. I'm sending you healing thoughts and prayers......
Harley Diva
 
....RA, HPT,  drugs: Sulfasalazine, MTX, prednisone, bp meds


Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 2/14/2007 5:36 AM (GMT -7)   
Is the weather bad in your area? I know I am in a flare right now too.. and I think the weather is making it 10 times worse (at least that's what I keep telling myself) so I am hoping that my flare will pass when the weather dose.. Was thinking maybe that could be some of yours too? Sorry you have had to take pain meds.. I try to not take those too.. I feel as if i am on too many meds as is.. Can you soak in the tub? Hot showers actually hurt me, but a nice long soak gives me temporary relief.. a little bit is better than none..

By the way, how is the ringing? Any better? Did you get a new pillow?
Moderator of Arthritis/Epilepsy Forums
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 2/14/2007 10:41 AM (GMT -7)   
Our weather was bad last week, clearing up now -- maybe that had something to do with it. I do feel better today though. We don't have a tub - I made hubby take it out and put in a 2 shower head fancy shower instead! The hot shower did help though - made it easier for me to sleep, which I think was part of the problem. When I hurt that bad, I can't get comfortable and I can't sleep. Geez, what a cycle, eh?

As for the ringing...well, I saw the ENT (what a waste of time). He never asked why I was on the medicine I was, but good golly, as soon as I said I was a trapshooter -- there was the problem. While I might agree noise accumulation may have contributed to it, it seems strange that it all started right after I started the Remicade. I didn't compete hardly at all last year, so I really don't think that's the "entire" problem. Oh -- he also told me to cut down on caffeine for a couple of weeks (decaf, me? HA!!!) Phooey on him. nono

I did get a new pillow this weekend -- do you have any idea how many different types of pillows are out there? tongue Good heavens! I did end up with a rather expensive "pillow within a pillow" that I love. You should have seen me lying on the floor in the stores where I was testing the pillows at - other's were doing it as well. Too funny. It's taking me a bit of time to get used to it, but I can use it for sleeping on my back and side, so that's good.

Thanks for letting me vent - I haven't felt the need to do that in a very long time...hopefully after my infusion, things will be better. Enjoy your day today all.
"My "Trifecta" - CD, AS & RA...

Co-Moderator Crohn's Forum

Remicade every 6 weeks, Methotrexate weekly, Folic Acid daily


Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 2/14/2007 11:29 AM (GMT -7)   
HA! That's funny.. my cousin is an avid hunter, so that's what a lot of people thought his ringing was due to also... Did the ringing go away? Or is it still there? No caffeine? NO WAY.. I don't think I could even begin to function without caffeine... :)
Moderator of Arthritis/Epilepsy Forums
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 2/14/2007 11:45 AM (GMT -7)   
The ringing comes and goes. Today nothing but it was bad yesterday. I can't imagine having this in both ears all the time - seems it's in my right ear. The ENT told me to add another layer of hearing protection to what I already have (besides the caffeine remark)...uh gee, thanks.

I did have a hearing test and felt relieved to know I was not going deaf! I do have some slight hearing loss (which I already knew from many years ago). Told me to come back in a year for another hearing test. Oh goody!!!

I couldn't function without my caffeine either and I also wouldn't be a very nice person while trying to wean myself off of it! Cutting the caffeine in my opinion is worse than quitting smoking and I drink coffee & smoke (no lectures please). LoL
"My "Trifecta" - CD, AS & RA...

Co-Moderator Crohn's Forum

Remicade every 6 weeks, Methotrexate weekly, Folic Acid daily


Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 2/14/2007 12:30 PM (GMT -7)   
Oh, I can SOO identify with you.. I did quit smoking.. HOWEVER... I still CRAVE them something awful... Oh, what I would do for just one... just one! :)
Moderator of Arthritis/Epilepsy Forums
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
 


EveSasser
Veteran Member


Date Joined Mar 2006
Total Posts : 808
   Posted 2/14/2007 2:31 PM (GMT -7)   
Hey, does everybody on this board drink COFFEE? Maybe coffee causes arthritis. Just kidding. Some studies of managers show that coffee increases the ability to concentrate.

Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 2/14/2007 5:45 PM (GMT -7)   
starrnr - I so understand your frustration with the joint flare-ups. My Remicade used to hold me pretty well for the 6 week interval. Then it seemed to only hold me for about 4 weeks. I finally got fed up with the very predictable flares when the Remicade appeared to wear off. My rheumy was not convinced that my tendons and bursa were flaring to the extent I said. He felt I was likely overdoing during the periods I felt better. He listened enough to schedule an ultrasound 7 days prior to my next Remicade infusion. Sure enough when I got to the appointment my shoulders, elbows, and knees were screaming. He did the ultrasound on my worse shoulder and it showed that my bursae and tendons were very inflamed. So we are going for the max dose of Remicade next infusion and if that doesn't work they are going to schedule my infusions for evry 4.5-5 weeks.

Frankly getting tired of the entire matter.....and to top it off my Remicade might be delayed since I developed the lovely cecal diverticulitis. They won't infuse me until they are convinced the infection is cleared.
Hang in there.....
Co-Moderator Crohn's Disease Forum
 
CD, Ankylosing Spondylitis, peripheral neuropathy, Sjogren's Syndrome
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chilkootpass
Regular Member


Date Joined May 2006
Total Posts : 65
   Posted 2/14/2007 7:14 PM (GMT -7)   
my doctor finally said this past week that I have RA but the meds are not something I can take because of other health problems and to be quite frank no insurance causes its problems too, lol

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 2/14/2007 9:22 PM (GMT -7)   
hey there Star
what about going on Prednisone or a Solumedrol pack for a few days to help with the inflammation & flare? If anything it will help out while waiting.
i go for Remicade every 3 weeks...4 days before the next round, i can feel things get worse.
every 6 or 8 weeks isn't for everybody...so maybe you could benefit from more frequent ones.
 
i do hope things turn around fast for you.
Arthritis Forum Moderator
Active Severe Rheumatory Arthritis. Crohns Disease. A.Chiari Malformation & right brain venous anomoly. Partial Complex Seizures (under control!). MVP & Tricuspid Valve Prolapse. Rheumatic heart & lung. Previous Lymes Disease for 10 years.
Meds: Remicade infusions 300mg Q3weeks; Intra-articular knee injections when needed; Mercaptopurine 50mgQD plus 75mg weekly; Mesalamine 4GramsQD; Prednisone 20mgQD mantainance; Entocort 9mgQD; Meclizine; Augmentin; Reglan; LidoDerm Patches; Diazepam 5mg for AS back spasms; Restaril; Dilaudid 4mg tabs for pain. 

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