hey,
i'm home. 
hoorah. think i found the key to having my knees done. EARLY ICE!
hoorah. think i found the key to having my knees done. EARLY ICE!pretty darn painful; 
the initial injections were tough this time around. but i'm chok full o' steroids in my knees now. so at least i know that they'll behave for the next 2 months. oh, and I DID NOT PASS OUT THIS TIME!!!! hee hee hee. although i did get very pale and sweaty and really cold.
the initial injections were tough this time around. but i'm chok full o' steroids in my knees now. so at least i know that they'll behave for the next 2 months. oh, and I DID NOT PASS OUT THIS TIME!!!! hee hee hee. although i did get very pale and sweaty and really cold.it's a brutal process. 
i hate it...so glad it's done and over with.
i hate it...so glad it's done and over with.
stinks that it's the only thing that helps.the AS is flared up too. 
don't know how he felt that by prodding my back...but he knew. and my right hand fingers are all swayed to the right; got a bit of derormity.
don't know how he felt that by prodding my back...but he knew. and my right hand fingers are all swayed to the right; got a bit of derormity. so yeah, in all..in a severe RA flare. this too shall pass. lots of rest, can't really take any more prednisone, making me too queezy with nausea. wish there were some other NSAIDs. {dang Crohns...Advil would be my nest friend right now}
this too shall pass. lots of rest, can't really take any more prednisone, making me too queezy with nausea. wish there were some other NSAIDs. {dang Crohns...Advil would be my nest friend right now}funny...when he was assessing my legs and knees he asks, "who shaves your legs?" hah 
...must have done a good job. 
lol.
...must have done a good job. lol. all i have to do now is chill. 
ice packs on...lots of Tylenol. praying for a good movie to be on tonite.
ice packs on...lots of Tylenol. praying for a good movie to be on tonite.take care. erin
Active, Severe Rheumatory Arthritis. Crohns. AS. Chiari Malformation & Right Brain venous anomoly. Partial complex seizures. Emphysema. Rheumatic Lung & Heart. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Active, Severe Rheumatory Arthritis. Crohns. AS. Chiari Malformation & Right Brain venous anomoly. Partial complex seizures. Emphysema. Rheumatic Lung & Heart. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg Q 4 days; Pred 20mg prn; Pentasa 4G daily; Imuran 50mg; Dilaudid 4mg; Diazepam 5mg; Avinza 30mg; Reglan; Meclizine; LidoDerm; MiraLax & too many others.
Hey Erin,
Glad it's over with. Hopefully it's all downhill from here! Downhill in the going down a hill is easier than going up a hill sense I mean. Hmmm upon re-evaluation that's kind of a bad expression. Hope it's clear sailing from here! Better. Take care.
-SLE, Psoriatic Arthritis & Rheumatoid Arthritis
-Current meds: Plaquenil (200mg, twice per day), Sulfasalazine (500mg 3 times daily) NSAID du jour (twice daily)
Glad it's over with. Hopefully it's all downhill from here! Downhill in the going down a hill is easier than going up a hill sense I mean. Hmmm upon re-evaluation that's kind of a bad expression. Hope it's clear sailing from here! Better. Take care.
-SLE, Psoriatic Arthritis & Rheumatoid Arthritis
-Current meds: Plaquenil (200mg, twice per day), Sulfasalazine (500mg 3 times daily) NSAID du jour (twice daily)
Thanks Dave.
Now i'm just faced with pain & boredom! well, i like to use "distraction" as a pain management tool. cinematherapy i prefer best.
Wow, so you have RA on top of it all too huh? have you ever had your knees drained and pumped with roids? These darn AI diseases all like to hang out together.
Were you ever on Enbrel or Humira or anything like that?
Yes...downhill! Gravity does all the work. I like it.
Ciao!Active, Severe Rheumatory Arthritis. Crohns. AS. Chiari Malformation & Right Brain venous anomoly. Partial complex seizures. Emphysema. Rheumatic Lung & Heart. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg Q 4 days; Pred 20mg prn; Pentasa 4G daily; Imuran 50mg; Dilaudid 4mg; Diazepam 5mg; Avinza 30mg; Reglan; Meclizine; LidoDerm; MiraLax & too many others.
Cinematherapy is an excellent treatment. I've never had my knees drained or shot full of roids, so I can't even imagine what that's like. Mostly for me its my neck, hands and hips. Well my feet and knees have sort of a low level constant ache thing going on, but no damage visible on XRays yet, just a lot of accumulation of whatchamacallits on bone scans. I guess from the damage they can see on my hips they can tell psoriatic and my hands rheumatoid. I really haven't tried any of the "hardcore" meds yet, though I suppose that's around the corner for me. I originally started having joint pain when I was around 22, went to the doctor when I was 24 and was diagnosed with Psoriatic Arthritis. It's kind of funny, because those two years where I was in pain and didn't bother with a doctor, any type of arthritis just didn't occur to me at all. I figured I would have some kind of virus or something that I would get a prescription for and I would be better. I try to remember how I thought back then when I see that people don't get it when I try to explain my situation to them. After all the blood work and Xrays they added RA then SLE about a year after that. My rheumatologist has sort of been taking an approach that was supposed to let me get through my twenties as normally as possible, and then become more agressive as I got older. Not sure if it was wise in retrospect (I'm 32 now), but I appreciate that she takes a long term view of my situation. She's far from perfect, but at least she cares.
I haven't tried enbrel or humira or remicade or anything, I've discussed it with my doctor, but she says I should try methotextrate first, and I have a hard time wrapping my mind around that drug. I was invited to be part of a study of remicade for PA, at the time it wasn't approved here for PA, but it involved travelling to another town about an hour away twice a week and I just wasn't up to it. Right now my joints aren't perfect, but the sulfasalazine has been sort of a small miracle for me. So, I'm in no rush to try more meds for my arthritic problems. Really, I don't have too many complaints right now except some SLE related inflammation of my chest wall, some digestive problems, and some "brain fog". Probably we'll try upping the dose of sulfasalazine before we go to prednisone for that. My liver has been handling the sulfasalazine well thus far, so I feel pretty safe taking it.
The hardest aspect of anything for me, and I think most people, is the mental aspect of just coming to a place where I can accept that I'm a different person now. It doesn't mean better or worse, just different.
Hmm I wrote more than I intended when I began to reply. darn it, I better not mention the time in grade three when I wore mismatched socks to school, or I'll have revealed all! Enjoy your movie.
-SLE, Psoriatic Arthritis & Rheumatoid Arthritis
-Current meds: Plaquenil (200mg, twice per day), Sulfasalazine (500mg 3 times daily) NSAID du jour (twice daily)
I haven't tried enbrel or humira or remicade or anything, I've discussed it with my doctor, but she says I should try methotextrate first, and I have a hard time wrapping my mind around that drug. I was invited to be part of a study of remicade for PA, at the time it wasn't approved here for PA, but it involved travelling to another town about an hour away twice a week and I just wasn't up to it. Right now my joints aren't perfect, but the sulfasalazine has been sort of a small miracle for me. So, I'm in no rush to try more meds for my arthritic problems. Really, I don't have too many complaints right now except some SLE related inflammation of my chest wall, some digestive problems, and some "brain fog". Probably we'll try upping the dose of sulfasalazine before we go to prednisone for that. My liver has been handling the sulfasalazine well thus far, so I feel pretty safe taking it.
The hardest aspect of anything for me, and I think most people, is the mental aspect of just coming to a place where I can accept that I'm a different person now. It doesn't mean better or worse, just different.
Hmm I wrote more than I intended when I began to reply. darn it, I better not mention the time in grade three when I wore mismatched socks to school, or I'll have revealed all! Enjoy your movie.
-SLE, Psoriatic Arthritis & Rheumatoid Arthritis
-Current meds: Plaquenil (200mg, twice per day), Sulfasalazine (500mg 3 times daily) NSAID du jour (twice daily)
Glad to hear it's over for you Erin! And, I hope, successful. I must tell you, the entire process sounds incredibly mind numbing--I'm not sure I could handle it. We all do what we have to, though. Hope you recover quickly and the injections start doing their thing. You have AS? On top of RA? On top of CD? I'm sure you told me that, but that's an awful lot going on. Go have a few drinks.
Elcamino
Current dx: Rheumatoid Arthritis
Suspected dx: Early Lupus/MCTD
Current Meds: Enbrel, Plaquenil, Aciphex, Ultracet, Zyrtec, Allavert-D, Zantac, Tylenol PM
Past Meds: Relafen, Vioxx, Mobic, Voltaren, Sulfasalazine, Entocort, Prednisone, Humira, Reglan
I don't know how you do it, but I'm glad it's over Erin! May they last longer than 2 months too!
Do the steroid shots make you jittery and awake like the pills and iv do? I hope not!
Here's to a good night of movies and a great night's sleep of healing!
Hah, Dave you're great. Loved your post. Same with me, these things never occured to me until "bam" you're hit with one and then they find another and another and another. You're a trooper for living with Lupus; one of my MDs is still convinced that Lupus will spring up on me. They thought this initially in 2001.
Loved your post. Same with me, these things never occured to me until "bam" you're hit with one and then they find another and another and another. You're a trooper for living with Lupus; one of my MDs is still convinced that Lupus will spring up on me. They thought this initially in 2001. I still to this day wear mismatched socks...don't worry.
Thanks Elcamino: Yeah, the ankylosing spondylitis was like a complimentary gift I suppose. That's like the 1 thing that's been quiet for about 6 months; but I guess I awoke the AS monster last week. It is awful. Some spasms are like the equivalent to labor pains. In fact, it is not uncommon for a person to have RA along w/ AS and Crohns or UC. They all hang in pack.
That's like the 1 thing that's been quiet for about 6 months; but I guess I awoke the AS monster last week. It is awful. Some spasms are like the equivalent to labor pains. In fact, it is not uncommon for a person to have RA along w/ AS and Crohns or UC. They all hang in pack.Hey mama The steroids fortunateley stay put in the joint. The procedure I had done is directly in the knee joint; so the steroids stay localized in that one place. They don't go systemic. So no "roid rage" or jitters. But alas...I was up till 3:30am still icing the knees.
The steroids fortunateley stay put in the joint. The procedure I had done is directly in the knee joint; so the steroids stay localized in that one place. They don't go systemic. So no "roid rage" or jitters. But alas...I was up till 3:30am still icing the knees.No good films on last nite. Bummer. Was subjected to watching 4 hours of "Ultimate Coyote Ugly Search". I must say....not that bad.
Knees today are pretty darn good compared to the last 2 times had this done. Early ice I think was the trick to keeping the bruising & edema down.
Nice to have a Rx of "R&R"... Ciao!
Active, Severe Rheumatory Arthritis. Crohns. AS. Chiari Malformation & Right Brain venous anomoly. Partial complex seizures. Emphysema. Rheumatic Lung & Heart. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Ciao!Active, Severe Rheumatory Arthritis. Crohns. AS. Chiari Malformation & Right Brain venous anomoly. Partial complex seizures. Emphysema. Rheumatic Lung & Heart. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg Q 4 days; Pred 20mg prn; Pentasa 4G daily; Imuran 50mg; Dilaudid 4mg; Diazepam 5mg; Avinza 30mg; Reglan; Meclizine; LidoDerm; MiraLax & too many others.
Dang, you're right. I do have a lot going on. I just read my signature! LOL. Thank God for makeup! At least I have my teeth!
Active, Severe Rheumatory Arthritis. Crohns. AS. Chiari Malformation & Right Brain venous anomoly. Partial complex seizures. Emphysema. Rheumatic Lung & Heart. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Active, Severe Rheumatory Arthritis. Crohns. AS. Chiari Malformation & Right Brain venous anomoly. Partial complex seizures. Emphysema. Rheumatic Lung & Heart. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg Q 4 days; Pred 20mg prn; Pentasa 4G daily; Imuran 50mg; Dilaudid 4mg; Diazepam 5mg; Avinza 30mg; Reglan; Meclizine; LidoDerm; MiraLax & too many others.
erin you are a trooper you are!!!!
i hope you get some relief from all this. i wish i could be as brave as you are and then maybe i could get something done for myself. i am in severe denial in my condition
9-02 crash w/ C-5-6-7 anterior/posterior fusion in neck w/11 screws and 4 metal plates. multilevel HNP at T & L section. FMS, PA in dec 05. on SSDI after 2.5 yr wait. sezuires, CTS, IBS ( C & D). norco, xanax, predisone shots. i dont know what else is wrong with me and neither does anyone else!!!
9-02 crash w/ C-5-6-7 anterior/posterior fusion in neck w/11 screws and 4 metal plates. multilevel HNP at T & L section. FMS, PA in dec 05. on SSDI after 2.5 yr wait. sezuires, CTS, IBS ( C & D). norco, xanax, predisone shots. i dont know what else is wrong with me and neither does anyone else!!!
Hey Erin - how are you feeling today?
Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs
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
Ducky!!! missed you!!! i'm hanging in there. getting a bit more painful tonite; but it's expected. 2nd day is always the worst.
Missie thanx for asking. when it gets so bad where i can bare any weight on my knee or one of them gives in...i know it's time to bite the bullet & get em' done.
sure...it's hellish; near hit the floor afterwards each time. but it does stop the throbbing crushing pain in the knee joints for a while.
but i tell ya...i think i'll be walking by tomorrow. a more graceful shuffle i have tonite. can bend them. but still need to keep off of them for a few more days.
...Ice Ice Baby... Active, Severe Rheumatory Arthritis. Crohns. AS. Chiari Malformation & Right Brain venous anomoly. Partial complex seizures. Emphysema. Rheumatic Lung & Heart. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg Q 4 days; Pred 20mg prn; Pentasa 4G daily; Imuran 50mg; Dilaudid 4mg; Diazepam 5mg; Avinza 30mg; Reglan; Meclizine; LidoDerm; MiraLax & too many others.
Hi,I'm glade that you got your knee's done and here is a toast that you have pain free knee's for awhile.
Thanks
Thanks
Curley......
a.k.a.Mela...........
Argh! Why more painful on the 3rd day????Oh well. Thought it would pass quicker this time around. But guess not. Typically for me it takes about 7 days to walk right & not have knee pain from the injections. I really thought I'de be out & about today. BUMMER!
Bright side...my honey's horse is racing in a Stakes Race this afternoon (any racing fans out there?) "JustaWalkinthePark" Wish I was there to see em' take 1st (keeping fingers crossed). Go Baby Go!
Yeah so I look pretty ridiculous. Ice packs on my knees; heat pads on my back. Big time back spasms this morning. Oh yeah...just for good measure this partial obstruction hasn't passed yet! 12 days NO GO! ugh. Perhaps if everything gets done and over all at the same time...I'll have a nice summer. hah!
Oh yeah...just for good measure this partial obstruction hasn't passed yet! 12 days NO GO! ugh. Perhaps if everything gets done and over all at the same time...I'll have a nice summer. hah!be well.
Active, Severe Rheumatory Arthritis. Crohns. AS. Chiari Malformation & Right Brain venous anomoly. Partial complex seizures. Emphysema. Rheumatic Lung & Heart. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Active, Severe Rheumatory Arthritis. Crohns. AS. Chiari Malformation & Right Brain venous anomoly. Partial complex seizures. Emphysema. Rheumatic Lung & Heart. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg Q 4 days; Pred 20mg prn; Pentasa 4G daily; Imuran 50mg; Dilaudid 4mg; Diazepam 5mg; Avinza 30mg; Reglan; Meclizine; LidoDerm; MiraLax & too many others.
My hubby,Larry has RA & will hasve his seconds total knee replcaement on the 20th of this month.He's bone on bone now,& in bad pain.After the surgery & rehab time he will be alot better,then after healing 100% again.............
SnowyLynne
SnowyLynne
Good luck & best wishes to your hubby! yikes, bone on bone...ouch. It's a rough process. Hoping for 100%!!! the best to you!
Active, Severe Rheumatory Arthritis. Crohns. AS. Chiari Malformation & Right Brain venous anomoly. Partial complex seizures. Emphysema. Rheumatic Lung & Heart. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Active, Severe Rheumatory Arthritis. Crohns. AS. Chiari Malformation & Right Brain venous anomoly. Partial complex seizures. Emphysema. Rheumatic Lung & Heart. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg Q 4 days; Pred 20mg prn; Pentasa 4G daily; Imuran 50mg; Dilaudid 4mg; Diazepam 5mg; Avinza 30mg; Reglan; Meclizine; LidoDerm; MiraLax & too many others.
Just out of curiosity, have you ever considered knee replacement? Just wondering what your thoughts are on it.
-SLE, Psoriatic Arthritis & Rheumatoid Arthritis
-Current meds: Plaquenil (200mg, twice per day), Sulfasalazine (500mg 3 times daily) NSAID du jour (twice daily)
-SLE, Psoriatic Arthritis & Rheumatoid Arthritis
-Current meds: Plaquenil (200mg, twice per day), Sulfasalazine (500mg 3 times daily) NSAID du jour (twice daily)
Erin, I'm glad it's over for you and I hope you feel some relief soon.
I also have to say, with all that you have going on, you still always remain so positive. I love it...you are a great inspiration :)
Whoa, my thoughts on knee replacement? Last week, if someone had given me the equipment to do the surgery...I'de have done it myself! When my knee pain gets to the point where I don't sleep and really cannot do much of anything...yeah, I would absolutely at this point in my life have it done in a heart beat.
Problem is, I don't hink ANY doctor would agree to it. I'm 25...and people in their 40's get rejected and are told to wait till they're 50. And I do have cartiladge still in my joints. So I think I do not fit as a candidate for it...but no, I've never discussed it with any MD.
A woman who's a friend of my boyfriend's family basically has the exact situation I live. She's in her 40's now...but she had RA for many years, untreated, same story as mine...and she ended up having TKR surgery in her 20's. And she's done great thereafter.
I'm petrified. I really am.
I never planned for this to happen. And all that has happenned has interfered and pretty much ruined much of school, college, work, my career. And the future? Never even had a chance to get a running start.
So staying positive? Perhaps it's wishful thinking or a defense mechanism keeping me from becomming too depressed.
All I know is that I don't want to be disabled and I really do not like how I am right now. Had a totally different picture of what my life would be like at this time 10 years ago.
I suppose everyone feels the same at one point or another.
Call it a strong spirit or strong willed...or stubborn.
Everyday I just keep reminding myself that it has to get better than this.
Nice reality check eh?
BTW: knees are still the same. keeping them on ice still; easier to walk a bit; can't stand on them longer than a few minutes. Hoping for a better tomorrow.
Active, Severe Rheumatory Arthritis. Crohns. AS. Chiari Malformation & Right Brain venous anomoly. Partial complex seizures. Emphysema. Rheumatic Lung & Heart. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Active, Severe Rheumatory Arthritis. Crohns. AS. Chiari Malformation & Right Brain venous anomoly. Partial complex seizures. Emphysema. Rheumatic Lung & Heart. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg Q 4 days; Pred 20mg prn; Pentasa 4G daily; Imuran 50mg; Dilaudid 4mg; Diazepam 5mg; Avinza 30mg; Reglan; Meclizine; LidoDerm; MiraLax & too many others.
Erin ... dude ... sorry about the knees. I recall how bad my knees felt in past flares, it really gnaws on you.
I hope things get under control real soon ... Craig
I hope things get under control real soon ... Craig
thanks Craig....as do i.
Active, Severe Rheumatory Arthritis. Crohns. AS. Chiari Malformation & Right Brain venous anomoly. Partial complex seizures. Emphysema. Rheumatic Lung & Heart. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Active, Severe Rheumatory Arthritis. Crohns. AS. Chiari Malformation & Right Brain venous anomoly. Partial complex seizures. Emphysema. Rheumatic Lung & Heart. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg Q 4 days; Pred 20mg prn; Pentasa 4G daily; Imuran 50mg; Dilaudid 4mg; Diazepam 5mg; Avinza 30mg; Reglan; Meclizine; LidoDerm; MiraLax & too many others.