A bit settled now

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babybloo
Regular Member


Date Joined Aug 2005
Total Posts : 289
   Posted 6/3/2006 10:07 PM (GMT -7)   
After the recent upset about not being treated right now I feel I have settled down some.  The NP had decided not to treat because I wasnt doing as poorly as the first time I had seen them.  Also because my values in bloodwork (crp sed rate,etc) had returned to normal.  I still think that is because I had been on antiinflammatories for a couple months too and I definitely wasn't at my worst when I went in for it.  My bone scan was abnormal and it did show inflammatory.  So, she said lets wait till you are in another flare.  She did mention side effects of the meds that they will put me on if I flare up and said if it can wait this would be better.  Then mentioned Lupus and the possibility of RA even though the RF was negative.  She told me we won't wait long and when I flare she will put me right on steroids.  I am just scared of flaring again.  I was so bad the last time that I nearly lost my job, still might, and couldnt walk without assistance.  I think I am going to call and set up an appt with the doctor and discuss things again when I get money.  i do feel like I have been suffering long enough and I do have enough symptoms to be treated even without the positive bloodwork at this time.  I don't want things to get worse but if it is another flare they want then they will get it.  I could trigger one by stopping my meds I am currently on, though I don't feel I should have to do that either.  I would like for them to investigate further into what is going on, but she did say that we won't wait long.  So at least I do know that I am not being blown off.  I understand their reasoning, but when I flared the last time they didn't ask me to come in they just called in a script.  I just felt so much better when I was on the steroids even to the point of the fatigue disappearing, and fogginess clearing that I know it is a whole systemic thing going on.  I sure hope I can get total relief soon.  Do you think just calling and talking to them again is wise or should I wait till I flare?  Should I just initiate the flare by stopping the meds I am on?  Though last thing I want is to hurt anymore.
 
thanks,
 
bloo
dx: Systemic Juvenile Rheumatoid Arthritis: otherwise known as Adult onset Still's Disease. Asthma, hypertension, hypothyroid
 
Meds: Indomethacin TID, Neurontin 600mg, Maxair, Advair 250/50, Diovan HCT 160mg/25mg QD, Synthroid .1mg QD, Women's One a Day,  Ultram PRN.
 
 


elcamino
Veteran Member


Date Joined Sep 2005
Total Posts : 1744
   Posted 6/4/2006 12:39 PM (GMT -7)   

Hi Bloo,  Glad to hear that you're not as upset as you were.  I think it's a bit weird that your rheumatologist wants to wait until you're flairing to treat you?  The bloodwork is so inaccurate, that a lot doctors treat anyway based on patient perception of pain (and probably a whole host of other things that they can identify in an exam).  You might want to consider getting a second opinion, unless you are located remotely and will have trouble identifying another rheumatolgist.  I know that my rheumatologist does not withold treatment because my blood values happen to fall into the normal range?

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


babybloo
Regular Member


Date Joined Aug 2005
Total Posts : 289
   Posted 6/4/2006 1:57 PM (GMT -7)   
Well, I dont think i will wait long. For some reason today my muscles in my thighs are starting to hurt and I cant seem to get comfortable. My feet continue to act up and this morning I was quite upset that I couldnt open a juice bottle for my son. I am not sure if this is anything or goes with what is going on but it hurts to breathe.. i thought i just did something wrong but it isn't going away either. Thanks for your response elcamino I think I am going to have to push for treatment.

bloo
dx: Systemic Juvenile Rheumatoid Arthritis: otherwise known as Adult onset Still's Disease. Asthma, hypertension, hypothyroid
 
Meds: Indomethacin TID, Neurontin 600mg, Maxair, Advair 250/50, Diovan HCT 160mg/25mg QD, Synthroid .1mg QD, Women's One a Day,  Ultram PRN.
 
 


elcamino
Veteran Member


Date Joined Sep 2005
Total Posts : 1744
   Posted 6/4/2006 6:49 PM (GMT -7)   

You know what?  Seeing as how you had juvenile RA, I would strongly recommend that you find a doctor that will treat you.  You shouldn't have to be in pain.

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


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 6/5/2006 9:09 AM (GMT -7)   

gosh this is awful.  the whole point of this whole thing is TO AVOID GETTING INTO FLARES!  yikes, i cannot believe a healthcare professional WANTING a person to go into a flare.

what i would do?  the day where i feel absolutely horrid, get someone to take me to that doc office and be seen and or go to the ER where the doc attends and be seen there. if they want to "see" how bad you get...that should show them.

i hate hearing people get the run around & not being treated.  i had the run around for 10 years and at 25 y/o am disabled due to untreated RA? no excuse for that.  i wish i was older when this happenned for i would be wiser and put my foot down.

bloo, have you someone at home to help you?  i know one time, a doc was giving me trouble and MY MOM CALLED!!!! ah, God hath no furey like a mother's scorn! LOL.  but it worked...was seen that day.

bloo, in our prayers you are always.

i would call. and i would say, "I need you to hear me."  sometimes if you mention how badly it is interfering with your career or work, they pay more attention (they don't want to start the whole SSI schmeal).

this is not an easy life.

with love,

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 30mg; Reglan; Meclizine; LidoDerm; MiraLax & too many others.


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 6/5/2006 9:12 AM (GMT -7)   
regarding stopping meds?:
i really wouldn't. some flares can last up to over a month. not a nice situation. even on meds, you can flare. so my honest opinion would to be not to stop taking your medications.
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.


Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 6/5/2006 7:11 PM (GMT -7)   
Hey bloo... how you doin'? Erin is right... hang in there and let us know how you are... rest easy... 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

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