What Took Place @ Appointment Yesterday

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erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 7/21/2006 10:21 AM (GMT -7)   
the 2 best assets i have are my PCP & GI docs.  rheummy is unfortunately like talkin' to a block of wood. tongue
explained to PCP about the flare that occured in mid-june. RA progressed to feet & ankles. increased chest pain, difficulty breathing, skin lesions on face & hairline, etc...
PCP thinks that this is surpasing the realms of RA due to the Lupus-like symptoms, progression, intestinal, heart, lung, skin & joint involvement. he's thinking that this now fits into the category of mixed connective tissue disease.
i picked his brain about adding another anti-rheumatic or dmard or SOMETHING.
if he were me, he'd wait till i get that Promethius test from GI doc and perhaps it'll be as simple as upping the Imuran dose to 100mg. (which they're cautious to do being that i weigh 90 to 100 pounds given how much potty time i put in during the week) and also, PCP isn't confident RX me anything because my immune system is not too swell so he'd rather leave it in the hands of rheummy or GI dude.
 
called rheummy so waiting for his call back. oy! eyes not a conversation i look forward to. the $$ issue needs to be adressed as well. $75 for the rheummy visit is impossible right now. so he needs to know that.
i'll be asking him about Arava, Plaquenil, or antibiotic therapy as an added adjunct.
 
i made clear that i'm not handling this as well as i used to.  the not being able to earn money & work  is bothering me tremendously.
so we shall see how this turns out.
thanks for listening. :-)
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.


elcamino
Veteran Member


Date Joined Sep 2005
Total Posts : 1744
   Posted 7/21/2006 12:21 PM (GMT -7)   
It sounds like your PCP is really looking out for your welfare.  Great!  Sorry rheumy isn't helpful.  I'm sure your rheumy is monitoring your condition for MCTD, and the like, but it can't hurt to bring it to his attention again when you see him.  A lot of times my rheumy is monitoring me for stuff but he fails to mention it.  When I directly ask him, though, he always fills me in.  It can be frustrating, but overall I really like and respect him. 
 
With respect to your heart, lungs, etc... being affected--I thought RA could do all of that, can't it?  Given that RA is a connective tissue disease, though, I would strongly monitor your symptoms for other CTDs 'cause it is common to have more than one.  On the positive side, taking plaquenil will be a breeze compared to some of the other drugs you are on.  I think it's the safest of all of the DMARDs.  With your GI issues, it may cause you some concern.  I discovered early on that if I don't take it after a full meal (not a cracker, but a sandwich) it causes severe cramping and some D.  With your cd, I'm sure you want nothing to do with that.  I started taking it after I've eaten a fair lunch, though, and I've had few problems since then.  I've been on it now for about 4 months, and have yet to feel any positive effects, but it can take up to a full year before working.  Also, lupians tell me that they don't feel the effects until the stop taking it (so don't do that).  In other words, stopping it caused a flare.  I don't know much about Arava except my rheumy doesn't like it.  Says it has worse effects than mtx.  Plaquenil and antibiotics, though, can be safe if properly monitored.  Have you given up on mtx? 
 
I'm sorry if it was a scary appointment for you.  I'm sure it's disheartening to learn you may have more than you already have.  At least your PCP addresses your concerns, and risks an opinion either way.  I have yet to find a PCP who will risk an opinion at all.  They are much more comfortable leaving it to the specialists.  It would be greatly appreciated if any doctor would simply give me an opinion on anything!  Please let us know how your rheumy appointment goes when you discuss MCTD.  It has been my experience that unless you test positive for the antibodies, a rheumy will not take it seriously.  We all know, though, that symptoms of these diseases start years prior to specific antibody reproduction.
 
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


Aldo
Regular Member


Date Joined Jan 2006
Total Posts : 289
   Posted 7/21/2006 4:51 PM (GMT -7)   
Erin, I am so sorry to hear of your problems/situation. I feel your psychological pain, and many other painful areas that you have described, i.e. chest and lungs, feet and ankles. Your signature tells me that you are obviously disabled and I hope you are receiving SSDI! I am retired but do not draw SSDI. I receive disability pay from my former employer and I get some from the disability insurance I had while working.

It may sound ignorant, but I hope that you don't let money stop you from taking the very best care of yourself as you can. Dam* the money. Your life and especially your quality of life is much more important than the almighty dollar. Easy for me to say, right? I know that you are probably aware that you can get your medicines basically free, if you qualify.

You can put medical bill payments off till later, but you cannot put your health off for any time. If I were a rich man, you would have no problems.

I am going through a really frustrating period of my life. I though heart disease was all I had a coming. Now, I am having these strange constellation of vague, but painful symptoms. These support boards on the net have really helped me out. Like you guys did when I first posted here. We have knowledge that even the doctors don't and that is experience with disease. Well, I guess some doctors also have disease.

Enough of my rambling already. I am just trying to say that I feel for you and would love just to bring a smile to you. So GAIN SOME WEIGHT!!!!! and please get better real soon. Y'all come now....

Rj
 
P.S. Skin lesions....I have one on my left forearm. It has been there for about 4 months. It first just looked like a scab from a scratch or wound. I removed it and it is back. It is not a wart at all. It looks like leprosy, lol, but is about the sixe of a dime. I have also found some tiny red dots on my chest. I looked up the word for these, but the person shown to give and example (photo) had sooo many, and the picture was not a closeup. Just wondering if you have any info on this.
 
Oh yeah, my son in law's Mother passed away today. She was 51 and a nurse. She took the phen-phen (sp?) diet pill a few years back. This medicine damaged the valves in her heart. My son in law is in Afganistan. He will get to come home for the funeral.

Post Edited (Aldo) : 7/21/2006 6:01:36 PM (GMT-6)


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 7/21/2006 6:21 PM (GMT -7)   

wow Rj i'm so sorry about the loss in the family.  i send well wishes & safe prayers that your son-in-law has a safe & secure flight back home.

ah geez, you read me too well too!  just like Camama & Flopsie do!  guilty, i do let money interfere. and i'm terrified.

last week i was denied SSDI...AGAIN...for the 3rd time.  so next step is a formal appeal.  Rj, they're not going to award me anything till i'm @ the point where i'm officially hospitalized or get renal failure.  too young, too skilled, too intelligent...that's what they keep throwing in my face.

you are right, i did get Medicaid & it's been a lifesaver. all medicines are no cost & PCP is covered. rheummy & GI i have to pay out of pocket, they don't accept medicaid.

my father (who spends 20 Grand on cruises to Panama & Tahiti) dropped me from his Horizon HMO 2 years ago @ a very tough time. he could care less...really...no calls, no questions, nothing.  i think i spoke with him for 2 minutes 4 months ago...about B.S. and nothing significant. if i were him, i would be more concerned about supporting my child when ill.

it's really difficult Rj.  i never planned for this, never even had a running start.  i worked from age 11 to 24 and full time for 4 years all on the books for 13 years...so i really don't know why SS is giving me such difficulty when I REALLY NEED HELP.

i saw a top notch rheummy @ Cornell Weil in Manhattan 3 years ago. $700 1st visit and $400 thereafter.  only went 3 times...he's the one that started me on the TNF & stronger drugs.

so i am doing all i can do myself...it's getting harder to deal with due to finances & pretty much being alone during the week.  can't afford a car, so even making Dr appts  is a task in itself.

i feel if i had some more support things would be at least...easier.

i was the breadwinner. mom gets $250 alimony/week so for her to carry me is near impossible.  my boyfriend is always there should i end up in an emergency...but i'm a blockhead & pride gets in my way.  he will however be picking up the Promethius test and GI visit in 2 weeks for me.  he just wants me to be well.

you're a sweetie! thanks so much for everything.

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.
Meds: Humira 40mg Q 4 days; Pred 20mg prn; Pentasa 4G daily; Imuran 50mg; Dilaudid 4mg; Diazepam 5mg; Avinza 60mg; Reglan; Meclizine; LidoDerm; MiraLax & too many others.


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 7/21/2006 6:40 PM (GMT -7)   
hey El, thanks for your care & concern.
yeppo...RA can affect the heart & lungs, which i already have been dealing with for the past 3 years.  but this last year the chest, pleurisy, funny urine findings, that rash across the face, have been leading them to suspect like you mentioned more advance CTD's.
eyes  don't think i'm starting MTX yet. when i doubt something...i'm normally right.
sooo, my rheumatologist called me back...AT A REASONALBLE HOUR! yeah shocker, you bet!
i changed the way i converse with him. straight forward statements...no questions.
AND HE RESPONDED MUCH BETTER.  this was @ 6pm.
he agreed w/ all i said.  agreed with PCP about waiting for the Promethius Test FIRST.  and also to see him the week of the 6th to pick an antiinflammatory & discuss Minocycline, Penicillamine, or Plaquenil & Arava as an additive.
so at least 2 of the 3 DREAMTEAM members are on the same page.  eyes whew! eyes
he also happily called in a strong anti-emetic for the N&V i get from the prednisone.
 
so i feel i made some breakthroughs.  funny...i followed the advice of my horoscope today! LOL. tongue said to: plan in the a.m., take charge in the afternoon, and execute in the evening.
still jacked up on roids!  heart rate has slowed a bit, but no sleep.
oh and El, in regards to all the antibodies...they are there.  especially a very weird & outrageously elevated IgM.
but ya know?...i don't really worry about the bloodwork anymore in regards to the AI diseases because in the end...the treatments for all of them are basically the same, so what's the sense of boggling my mind with it at this point.
YOU ROCK!
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.
Meds: Humira 40mg Q 4 days; Pred 20mg prn; Pentasa 4G daily; Imuran 50mg; Dilaudid 4mg; Diazepam 5mg; Avinza 60mg; Reglan; Meclizine; LidoDerm; MiraLax & too many others.


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 7/21/2006 6:41 PM (GMT -7)   
oh, Aldo...could the spotty red thingies perhaps be blood pressure related? perhaps some broken blood vessels? have you done any straining, lifting, yardwork? out in the sun?
take care.
:)
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 60mg; Reglan; Meclizine; LidoDerm; MiraLax & too many others.


Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 7/21/2006 6:47 PM (GMT -7)   
Woo-hoo! Very cool of your rheummy.. I was worried about that one.. When do you get to see your GI doc? I'm doing the happy dance for you... well kind of... I'm sitting... so I'm doing the happy sitting dance for you.. Love you - Duck
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

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 7/21/2006 6:55 PM (GMT -7)   

    yeah   yeah yeah yeah yeah HAPPY LAYING DOWN DANCE BY ERIN yeah yeah yeah yeah yeah yeah yeah

 VIEW IMAGE 

Thanks Ducky,

I too was surprised by his receptiveness as was Joe.  I think that's what the docs have and NEED to do...collaborate together.

Calling my GI dude on Wednesday. Only day he's in his office in my city.  But he's so cool that I could go the same day to pick up the Promethius Test & to see him.  I sure hope that this is the beginning of something really good.  

Ciao!


Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 7/21/2006 7:01 PM (GMT -7)   
I've got everything crossed for you girl.. will even braid my hair! :) WOO-HOO!
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

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 7/21/2006 7:09 PM (GMT -7)   
YOU ARE...
THE BEST
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 60mg; Reglan; Meclizine; LidoDerm; MiraLax & too many others.


Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 7/21/2006 7:12 PM (GMT -7)   
Awe shucks... love you girl
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

elcamino
Veteran Member


Date Joined Sep 2005
Total Posts : 1744
   Posted 7/21/2006 7:21 PM (GMT -7)   

You already have the antibodies for MCTD?  Anti-rnp, or something like that?  How do you deal with the entire ambiguity of it all?  Well, you are right, I think the tx are all so similar for all AI diseases that it is not productive to get bogged down with the bloodwork.  Unfortunately, for me, it drives me crazy not knowing exactly what I have.  Perhaps because of my mother's death due to this junk.  I just want MCTD and/or Lupus to be ruled out.  Then I'll be happy. 

Glad you got good news, or at least validation, from your rheumy. 

Do you live in NYC?  I was just up there on business (first time) yesterday.  It was a flying trip--literally.  Flew in @ 8am, flew out @ 3:30pm.  Got taken to the cleaner right outside LaGuardia.  Guy asked me if I needed a taxi to downtown Manhattan.  I said heck yes, that's where I'm going.  He pulled up in a very nice SUV.  And naive me got in!  He did take me to my destination, but then charged me $70 plus tolls to go less than 20 miles!!!!  Don't think my job's going to reimburse me for that one.  Now I know to never get in anything in NYC except the little yellow cabs :)

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


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 7/21/2006 7:39 PM (GMT -7)   
little yellow cabbies are the chepeast! NYC taxies are less expensive than NJ. i live in Bayonne, right near Hoboken...so technically Bayonne is considered a suburb of Manhattan...due to it's 5 minutes by PATH (subway).
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 60mg; Reglan; Meclizine; LidoDerm; MiraLax & too many others.


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 7/22/2006 5:04 PM (GMT -7)   

mad  Oh barf! mad

Well, I had my RX of a stronger anti-emetic picked up for me...but too late.

Darn.  Took the steroids after I ate a little @ 1am in the morning...figuring I would sleep.

No sleep. Nauseous n' pukey.

Goodnight. redface


yalinda
Veteran Member


Date Joined May 2006
Total Posts : 1179
   Posted 7/22/2006 9:08 PM (GMT -7)   
hey erin i think my hubby's cousin lives in Hoboken! small world.... sry you are still not feeling great.... i keep praying for everyone on this site.... reading tons of posts to catch up with all the new info. cant wait to tell ur mom what a great job she did raising you! you a special and smart young lady.
increased my mtx today to 15 mg with no noted side effects. took a nap mid day but that is what i like to do on saturdays.... cat nap just like ur kitties i am certain, actually like my dog ... talk about a lazy brown dog i have one of them!

well just waiting for my kido to come home from the gogo dolls concert then off to sleep! lata ~*yalinda

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 7/22/2006 9:21 PM (GMT -7)   
ciao yalinda!
oh yeah...do drop me momma-dog a line @ Migraine!  she'll be opening up her mail for the very 1st time tomorrow! oooooh. LOL. she'd be thrilled to here from ya & of course good things about her offspring tongue . now i know i'll be callin' her Lindie-Lou. i'll send ya a picture of us.
skull  i cracked....took 15mg of pred an hour ago. took the meclizine 25mgs & am praying for the best.  darn ankles and feet & knees started to throb. sad
have NO IDEA what i'm doing still up! confused so overtired that i can't get to sleep. eyes argh.
 
so what type of dog do you have?
my Pea, 1 of 4 cats, is wired!  she only sleeps @ nite. well, they all do. all in the same room. :-)
a-hah....my sister and brother in law live on Monroe street (2nd and Monroe?) and just brought a huge brownstone on Park Ave on (7th i think?).  wonder if they know each other.  they're in their 30's.
best of luck to you my friend w/ the MTX!  but...if you get bad nausea & vomiting, ask rheummy for Meclizine or AntiVert.  can take it up to 3 times a day @ 25mg.  works well. no heaving for me yet. scool
bueno serra,
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.
Meds: Humira 40mg Q 4 days; Pred 20mg prn; Pentasa 4G daily; Imuran 50mg; Dilaudid 4mg; Diazepam 5mg; Avinza 60mg; Reglan; Meclizine; LidoDerm; MiraLax & too many others.


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 7/22/2006 9:53 PM (GMT -7)   
i sent some pics over 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.
Meds: Humira 40mg Q 4 days; Pred 20mg prn; Pentasa 4G daily; Imuran 50mg; Dilaudid 4mg; Diazepam 5mg; Avinza 60mg; Reglan; Meclizine; LidoDerm; MiraLax & too many others.


yalinda
Veteran Member


Date Joined May 2006
Total Posts : 1179
   Posted 7/22/2006 10:34 PM (GMT -7)   
hey i am still up too! dont know if i am going to make church in the am at this rate? i have a doxy .... or daushund with attitude! unfortunately if he knows u he loves u and if he doesnt ouch! we had a calico cat for like 17 years but no more cats as my hubby is allergic which we found out a few years ago so i tease him that when he leaves this world i will replace him with a cat! i always had cats so i understand your love for them.... i have to find out steves address i just know it is hoboken... he works for a pharmsutical co and has a daughter with JRA.... very nice family, wish they lived closer to us..... ~*yalinda

yalinda
Veteran Member


Date Joined May 2006
Total Posts : 1179
   Posted 7/22/2006 10:44 PM (GMT -7)   
ps u got mail!

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 7/23/2006 11:21 AM (GMT -7)   
thanks bunches!
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; Prednisone 20mg; Pentasa 4G daily; Imuran 50mg; Dilaudid 4mg; Diazepam 5mg; Avinza 60mg; Reglan; Antivert 25mg tid; LidoDerm; MiraLax & too many others.


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 7/24/2006 7:17 PM (GMT -7)   

sad  ooh blah! sick day.

finally slept last nite thank heavens.

on the porcelein throne from 8am till well...now still. but feeling BAD.  very painful joints, a fever! eyes plus the above yuck.

fever thing threw me off.  99.2  then this afternoon 99.8  then last one was 100.2 confused

i wonder what the real # is.  with a compromised immune system and diminished wbc's...those numbers aren't accurate, 100 could really be 102.

feeling a bit better than before.  @ least no ER. weehooo. feeling cooler.

scool  


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; Prednisone 20mg; Pentasa 4G daily; Imuran 50mg; Dilaudid 4mg; Diazepam 5mg; Avinza 60mg; Reglan; Antivert 25mg tid; LidoDerm; MiraLax & too many others.


Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 7/25/2006 5:58 AM (GMT -7)   
How are you feeling today Erin?
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

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 7/25/2006 9:57 AM (GMT -7)   

sad  BOGUS! that's how i feel. sad

really thought (again) that i'de get to sleep last nite. NOPE! was 6am and still up.  i hate this.  joint pain is bad so can't get comfortable...try to distract myself from pain; get over-tired; whole things starts over again.

redface  awful, awful feeling going days with no sleep.  i can survive on say 2 hours...but ZERO hurts!

so i took another 20mg dose of prednisone a few minutes ago. skull blah. didn't take any yesterday so that's probably why joint pain was so bad.  "please bring me a better nite!"

i just can't wait to have this Promethius Test done.  i seriously hope that the Imuran can be increased to 100mg; maybe it's that simple.  maybe that will help me out better than the 50mg i'm on.

speaking to the GI tomorrow. i hope he's having an extra-smart day tomorrow! tongue

thanks Duck for the care & concern {{{{{{{{ big hug 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.
Meds: Humira 40mg Q 4 days; Prednisone 20mg; Pentasa 4G daily; Imuran 50mg; Dilaudid 4mg; Diazepam 5mg; Avinza 60mg; Reglan; Antivert 25mg tid; LidoDerm; MiraLax & too many others.


Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 7/25/2006 11:50 AM (GMT -7)   
What time is your appt?
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

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 7/25/2006 4:24 PM (GMT -7)   
hey Duck,
your guess is as good as mine.  i know he gets in @ 4pm.  but i'll call in the a.m. & find out the scoop. maybe it would be best to kill 2 birds w/ 1 stone next wednesday and do the test & have an appt.  or do the test & wait for the results & then have the appt? eyes aaarrrghh!!!!!!!
i've got 40mg prednisone total for the day...figure that i'm so zombie like and tired that i'll just zonk out tonite despite the amount of steroids makin' me heart pidder-padder.
off to unwind. wish me luck.
redface  
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; Prednisone 20mg; Pentasa 4G daily; Imuran 50mg; Dilaudid 4mg; Diazepam 5mg; Avinza 60mg; Reglan; Antivert 25mg tid; LidoDerm; MiraLax & too many others.

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