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Kibbles
Regular Member


Date Joined Mar 2007
Total Posts : 79
   Posted 3/27/2007 6:19 PM (GMT -7)   
I Just got a positive RAF test from the Dr. 2 days ago. The Sed Rate was only 10,the ANA was normal, but the RAF Titer was 160. My Dr said he wants me to see a Rheumatologist. Could it be something other than Rheum. Arth.? This has me pretty worried ,as I watched my mom suffer with it, and my brother has it really bad and had to quit working. Erin , you wrote me a note saying something about questions being answered at rheuatiod arthritis Foundation. What exactly is the web address?
I know it will be at least 3 weeks before i can get in to the rheumy guys and i have experienced one very extremely painful night and day,and am so scared about it happening again. My right hand and arm went into like this major cramp or something, i couldn't move my fingers, and the pain was from finger tips to shoulder. That was 6 days ago and my hand is still tender inside the palm, and my ring and middle finger tips are numb. Is that a flare like you all are talking about?? Help.!! Joy
Count your Blessings, Joy


yalinda
Veteran Member


Date Joined May 2006
Total Posts : 1179
   Posted 3/27/2007 7:00 PM (GMT -7)   
hi joy and welcome to hw! sry to hear ur in a possible flare :(

if u go to arthritis.org that will take u to the foundation and u can find ur local chapter too!

i am not certain about the blood work numbers but erin will be around sometime to check in take care yalinda

Kibbles
Regular Member


Date Joined Mar 2007
Total Posts : 79
   Posted 3/27/2007 7:02 PM (GMT -7)   
Thank you so much Yalinda! I so appreciate having someone to talk to about all of this. Joy

Count your Blessings, Joy


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 3/28/2007 12:52 PM (GMT -7)   
Hi Joy,
You hang in there! If you do experience a particularly painful night that's more than you can handle...it's OK to go to the ER. I've had to do that many MANY times as probably a lot of peeps here have too. When RA becomes too painful, emergency medicine is sometimes needed (IV steroids and IV pain meds) just to get a grip on it.

I really never heard of RA causing terrfic spasms like you stated...but I believe nothing is impossible. However, this week for example...both arms were soooo bad & inflammed that my hands lost feeling in them. So I'm thinking inflammation got too crazy thus causing some nerves to go whacky. But it slowly is returning to "normal" as I can type again! yea!

Yalin gave you the right website (THANKS toots!) Ya gotta weed through articles and stuff, but there's a thing called Let's Talk RA and it gives you a slew of "basic" questions you should ask your rheummy when you get there. It also has a survey to help you asses what you can & cannot do well, and how much RA interferes with life. You could request this pamphlet my mail too. But...I'm sure there are a lot of things that are similar to that...ya know, guidelines to stear you into getting the most from your appt.

YOU WILL GET THROUGH THIS

You'll get some medicines going soon to help control pain & swelling & stuff. Hang tight.

((((((((((hugs)))))))))) erin
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 10mgQD mantainance; Entocort 9mgQD; Meclizine; Augmentin; Tigan 300mg; Reglan; LidoDerm Patches; Diazepam 5mg for AS back spasms; Rozerem 8mg; Dilaudid 4mg tabs for pain. 


Kibbles
Regular Member


Date Joined Mar 2007
Total Posts : 79
   Posted 3/28/2007 3:54 PM (GMT -7)   
Thanks Erin. It's weird that in asking the Dr.s at the clinic where i work, they say a positive RAF doesn't necessarily mean you have rheum. Is this so? And if it is. what else could a pos. Raf. with a titer of 160 be?
thanks again,ya'll are so sweet
Count your Blessings, Joy


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 3/29/2007 7:53 AM (GMT -7)   
i'll bump up a write up of RF i wrote a few weeks back.
it's a question that's asked frequently.
:)
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 10mgQD mantainance; Entocort 9mgQD; Meclizine; Augmentin; Tigan 300mg; Reglan; LidoDerm Patches; Diazepam 5mg for AS back spasms; Rozerem 8mg; Dilaudid 4mg tabs for pain. 


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 3/29/2007 7:56 AM (GMT -7)   
Joy,
"RA level"is the thread that has the RF write up in it.  i'll try to keep it at the top of the forum. :-)
erin

Kibbles
Regular Member


Date Joined Mar 2007
Total Posts : 79
   Posted 3/31/2007 5:52 AM (GMT -7)   
Good Morning. Another totally sleepless night! I don't know how long i can do this. So much pain wakes me up, then wont let me go back to sleep. I sure hope that when i get my rheumy appt. they can give me sometthing that works.I also wish that when i am awake at ,1,2,3 am that there was someone to talk to,I looked at the chat room here, but it was empty.. Get my mind off the pain. My husband is coming home just for the night tonight, i hope the pain is gone or at least eased for the night. My DX and this pain started after he went to sea. He knows about it,but hasn't seen me in pain like this. He's already worried about me. Is there anything other than ibuprophen that helps with the pain? I think it will be at least 3 weeks before i can get the appt. with rheumy. Help!
Count your Blessings, Joy


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 3/31/2007 8:51 AM (GMT -7)   
yeah right!?!?! it's been one long wednesday!!!!! LOL...i haven't been to sleep neither yet; up & not a wink of sleep since wednesday. the steroids keep me up...if my hands didn't hurt i would have been online.

anything OTC for pain is really for mild pain. i use Tylenol and also a med called Percogesic which is a little stronger than tylenol.
is there anyone who can RX you a painmed?
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 10mgQD mantainance; Entocort 9mgQD; Meclizine; Augmentin; Tigan 300mg; Reglan; LidoDerm Patches; Diazepam 5mg for AS back spasms; Rozerem 8mg; Dilaudid 4mg tabs for pain. 


Kibbles
Regular Member


Date Joined Mar 2007
Total Posts : 79
   Posted 3/31/2007 11:28 AM (GMT -7)   
Hey erin,yep,i think i'll have to call my gp. i took 2 oxycodene but it didnt even take the edge off the pain. the first flare last week i took oxy and a breakthrougfh pain med, a muscle relaxer, then ibuprophen. nothing touched it,then i threw up,lol eyes   i knew better, but i thought passing out had to be  better than the severe pain,ya know? i'll email my dr, today,and hopefully will have pain meds by monday afternoon..going to one of my grandbababies 3rd b-day now. talk at you later.joy thanx 4 getting back to me,your very sweet
Count your Blessings, Joy


Kibbles
Regular Member


Date Joined Mar 2007
Total Posts : 79
   Posted 4/1/2007 4:14 AM (GMT -7)   
Morning erin.sorry i dont capitialize,but thats a hard move for my figers to make now. had to leave my grandsons b-day party because the swelling and pain started to get intense.i went to urgent care AGAIN, this time they gave me prednisone for 5 days and more oxys. she is going to bump up the referal to the rheumy,as it normally takes a couple of weeks.the top of my wrist and hand is very swollen now and i cant move my wrist down at all.and shoulder pain too,is this pretty clasic of rheum? i just sobbed my entire appt.,pain and scared. gonna stop typing and just read now. take care,joy

Count your Blessings, Joy


KodakPuppy
Regular Member


Date Joined Mar 2007
Total Posts : 101
   Posted 4/1/2007 4:16 PM (GMT -7)   
Hi Joy,
Welcome to the forum. I hear you and what you are going through. I hope you can get into see a rhumy sooner than three weeks. Night are no fun when you can't sleep because of pain. You have some good advice here. Take care and keep writing.
Blessing,
KodakPuppy

Kibbles
Regular Member


Date Joined Mar 2007
Total Posts : 79
   Posted 4/1/2007 5:15 PM (GMT -7)   
thanks kodakpuppy! i think that maybe the prednisone is helping some today.and your right,the advice and sweet people are in abundance here. btw my son is very concerned about my use of prednisone,are the side effects that bad?
joy
Count your Blessings, Joy


Harley Diva
Regular Member


Date Joined Oct 2006
Total Posts : 160
   Posted 4/4/2007 9:54 PM (GMT -7)   
Hi Joy I can remember having long painful nights and it is not fun. If it is to bad go to the emergency room. They are there to help you and severe pain is an emergency. Prednisone is a miracle drug but it can have side effects over the long term like all of the drugs that we take. Right now you need to feel better. I was on prednisone for most of the last two years. Sometimes a high dose, sometimes low. I did not have any bad side effects. No wieght gain etc. None of the other listed ones either. It was the only thing that got my flares under control. I am off it now but it got me through some bad times. I would use it again if I needed. I am sending you good thoughts.
Harley Diva
 
....RA, HPT,  drugs: MTX Enbrel, bp meds,folic acid


Kibbles
Regular Member


Date Joined Mar 2007
Total Posts : 79
   Posted 4/5/2007 5:58 AM (GMT -7)   
Thanks harley Diva,my 1st rheumy appt. got moved up to the 11th,maybe someone else will cancel and it will be sooner. Things are at least under control right now,no flare since sunday,but then i haven't been working since last thursday.I've been saying for years that work is evil,and now i have proof! ha ha Oh, i may get my cast off this week too,so then i will at least have two hands to do things with. I figure,2 sore hands should equal close to 1 good hand. Right?Take care, Joy
Count your Blessings, Joy


Harley Diva
Regular Member


Date Joined Oct 2006
Total Posts : 160
   Posted 4/6/2007 1:23 PM (GMT -7)   
Well it would be better than one sore hand? Good your getting to the doctor sooner. The sonner you start on a treatment plan the sooner you will feel better!
Harley Diva
 
....RA, HPT,  drugs: MTX Enbrel, bp meds,folic acid

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