update: hopeless situation- meds

Diseases & Conditions Rheumatoid Arthritis
1
Yeah, the nurse called me back, I just started sobbing when she told me my doc. want to put me on better meds right away, like Humira or embrel, whatever the insurance allows. He wanted me to come in right away tomorrow to discuss some lab results (makes me nervous, although the Lyme came out negative-great!) Please keep me in your thoughts tomorrow, I am nervous about the visit tomorrow, I've had some neurological problems and doc. worried about my heart too. I don't know what labs he did, but I'll keep you updated.
 
Thanks for being there, guys,
 
Noodlearms
 
2
Yeah for you Noodlearms! Woo-hoo! You will be in my thoughts and prayers today and tomorrow, please post after your appointment and let us know how it goes... best of luck to you! - Duck

Diagnosed January 2005 - Psoriatic Arthritis/Spondylitis
-Currently taking 50mg shot weekly of Enbrel
Diagnosed May 1998 - Graves Disease
-Complete Thyroidectomy September 1998 - While 11 weeks pregnant
Other Complications - GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes
Current Meds -  Enbrel/Prevacid/Synthroid
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots

3

HI Noodles,

   (((HUGS))) Just wanted to let you know you'll be in my thoughts and prayers, let us know what the doc says tomorrow.

Kimber

Learn from yesterday, Live for today, Hope for tomorrow 

4
Hey Noodle, what time is your appointment today? How you doing?

Diagnosed January 2005 - Psoriatic Arthritis/Spondylitis
-Currently taking 50mg shot weekly of Enbrel
Diagnosed May 1998 - Graves Disease
-Complete Thyroidectomy September 1998 - While 11 weeks pregnant
Other Complications - GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes
Current Meds -  Enbrel/Prevacid/Synthroid
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots

5
Noodle,
  That is fantastic!  Thank God. This is absolutely the right thing to be happenning to you right now...at last.  You needed a "let's not mess around anymore" medication and I hope you get it.
Now, speaking as someone who was cut from her insurance when she needed it most....Humira has an assistance program.  I get my injections at no cost, nothing, not one penny.  For Enbrel, I do believe there is a similar program.  But your doctor and yourself must fill out paperwork.  If it goes by income, they may assist and cover whatever your insurance does not pick up.
Let us know asap what happens.
Thoughts are with you!
Erin

Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg every 4 days; pred; Pentasa; Imuran; dilaudid; diazepam & too many others.

6

Oh Noodle I forgot!

You had mentioned neurological problems.  I've been dealing with seizures for a LOOOOONG while.  Had Neuro-Lymes and I also have a chiari malformation of the brain.  It is written that "if you have nervous system disorders....blah blah blah...."  I wouldn't read much into it or have it worry you too much.  That is unless of course you have a bad case of MS or something that you should indeed worry about.

Does Humira worsen nervous system disorders?  hmmmmm....personally, I say a tiny bit.  Only because since I started taking the shots every week, I've been experiencing more seizure activity.  But it is not worth stopping the Humira.  The seizures are a nosebleed in comparison to the severe joint pain.

I'm curious, if you feel OK with it, as to what neuro problem you deal with?

In regards to the heart problems.  I've noticed that also being on the TNF injection meds, that I get short winded and out of breath & some difficulty breathing as due to valve problems and rheumatic heart disease.  But again, not enough for me to give up on getting my life back...or at least some of my life back.

Good luck.  I again, am so happy that you have their attention now!

The best to you!

Erin

Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg every 4 days; pred; Pentasa; Imuran; dilaudid; diazepam & too many others.

7
Oh, the strangest thing happened. I went and found out that I must have done the most embarrassing misunderstanding in the universe. There never was any nodules on the lungs (?). I don't know why I misheard that at the time of diagnosis 6 months ago. Anywho, that means (besides good news!) that I have to stick to my Plaquenil since I am not considered to have severe RA. Hmm, ok. When it comes to my neurological stuff, if it's not too much problems, go ahead and look at my post on the MS thingie on diseases and conditions.
Hey, I felt so stupid, the doc. looked at me like if I was a hypochondriac when he told me about the x-rays. I felt so stupid. But why would I pull something like that that could be easily discovered when comparing previous x-rays? I hate to feel this way! It will take time to recover- mentally- . My daughter is fussy, I gotta go! I will keep posting! Many hugs!
8

Hey don't sweat it.  It happens to the best of us.  With RA and a few other rheumatic diseases, you can get nodules (pannus) on your body.  With everything a person goes through with multiple diseases...ya can't expect to keep up with everything! LOL

Oh, here's one to make ya feel better.  My colonoscopy in August, the anesthesiologist was reviewing my chart before he put me under & was talking to me about it and says..."Oh, so you've had two previous CVA's?"  I said WHAT!!!!!!!!!!!!!!!!

How stupid did I feel.  Someone telling me I had a stroke! Never asked about it after that.  Afterwards? I didn't even want to know.  Ignorance is bliss!

Take care,

Erin

Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg every 4 days; pred; Pentasa; Imuran; dilaudid; diazepam & too many others.