New Flu Treatment Approved, RA Doctors how many have you seen?

FDA approves new drug to treat influenza

https://www.fda.gov/news-events/press-announcements/fda-approves-new-drug-treat-influenza

On the "average" how many Rheumatologists have you seen before you found one that was "okay" as far as treatment, diagnosis and so forth?

I FINALLY did get to the RA's Office on Friday. Of course I rarely see him & have to see his NP or PA (actually I am not sure which one she is). I believe she is in school to finish up the PA License. Anyway, I had to go over the entire story starting from about the end of May or so, till the pacemaker finally. Actually I had filled all of that out & more earlier that week before going to the office SOnI would NOT have to spend 45 minutes telling it again. Alas, if it had been my DOCTOR, he would have read it all, and knew exactly what had been happening with me. He always is on top of everything when I can see him. I told herI already had labs done (including everything there is I think) about 8 weeks ago for the pacemaker. I also told her from now on send my "lab request with me, I will have them done here at my PCP Office. At SW in Dallas, they CHARGE separately for labs & last time they did not tell me they changed that so it cost me the co-pay and then another 70.00 for "my part of the labs).. when I asked why it changed the lady on the phone said the doctors "lease" the offices, so that is separate now from the clinic! BULL! My RA Physician TEACHES, DOES CLINICAL ROTATION, DOES RESEARCH, & SEES VERY FEW PATIENTS..So, I have to believe whomever doing the billing for the labs is not billing correctly.. She put me back on the exact same meds I had been on that honestly I don't think work. She was shocked how much worse the RA was, especially when my left hand, wrists ,fingers, thumb was so bad. I am not sure if they are right on their diagnosis. Those fingers on the left hand are continuing to "turn"n& the middle finger is laying on top of my ring finger. Frankly after the last time I took 8 or 9 weeks of antibiotics, & they never did know if I had "reactive infectious arthritis" or the RA was getting worse or what. I came home Friday in rush hour traffic from Dallas & was just disgusted with it all. I FEAR the Enbrel now since it's an injection weekly & I seem to not stay free from infections then add the Enbrel & that can cause them to be worse. Plus here is the flu season. Sounds like we are in for a huge problem with people being extremely ill even in the hospital with the flu this season. So, be sure to GET YOUR FLU SHOT, get the kids to understand to wash hands, not drink or eat from others & if anyone has the slightest sign of flu, go immediately & get the new shot. It won't _cure_ it but it will keep you far less ill, & get you well within a few days rather than like some and take a month or get pneumonia. (Xofluza, which can be taken via a single oral dose to help patients recover more quickly from the flu.)

FFA approves Medication for our Pediatric Patients which is terrific news for them!

Great News from the FDA for our Younger Lupus Patients (first ever pediatric patients!)!

http://www.worldpharmanews.com/fda/4803-fda-approves-first-treatment-for-pediatric-patients-with-lupus

Often we may let it slip our minds we havee many "very young patients" with Lupus. Up until now it was extremely difficult to help treat them! 

WEGO Sharing HUB - Xeljanz ... sponsored by Pfizer.

Information for Rheumatoid Arthritis Patients & Caregivers

(Great Results with Less Side Effects)

If you’re looking for information on Rheumatoid Arthritis, head over to the RA Patient Resources Sharing Hub, sponsored by Pfizer.

There you'll find information about the role inflammation plays in your body, as well as educational videos about RA. You'll also find digital resources that can help you manage your RA. These tips and tools from Pfizer can help support you on your RA journey. Additionally, you will find information about a savings card for a prescription treatment option for RA.



Check out this link to WEGOHEALTH and the latest from Pfizer on Xeljanz:


http://sharinghub.wegohealth.com/ra-patient-resources?utm_campaign=xelj14&utm_source=whcom&utm_medium=web&utm_content=header-link

Trying to Absorb Everything that seems to be "bouncing" my way...or getting run over?

http://funds.gofundme.com/index.php?route=fundmanager

Now I am sure you are wondering what the hell I have put this up for. Unless you've been to my FB page, or have seen the latest "venture" that the IFAA (International Foundation For Autoimmune Arthritis), about now you are scratching your head figuring what else I could possibly have my fingers involved in now.

Well, the story began when I "found" Tiffany the Founder and CEO of what came from a bracelet, made with a bit of leather, a belt buckle, and was a "movement" until now they stand proud and tall as one the instrumental foundations of Patient Centered Research in Autoimmune Arthritic Illnesses. So, what does that mean to me, and then of course what does that mean to yourself? That is a very long answer that shall become clarified in the days to come, and in my book to come also. A portion of my book, will be about my relatively "short time" I've been with a Foundation, that I have watched make almost impossible changes in the way others, including doctors, researchers, patients, and people from around the globe sit up, take notice, and SEE the REAL issues that "we" the patients deal with daily.

None of our lives are "daily".... or the events in them are not for sure. We may get up in the morning, much more slowly than anyone else, "walk" some of the stiffness out. Next may come a cup of coffee, that it takes all of your energy in both hands to pour it in a cup. I've not truly been able to get a "grip" on the entire next few months coming up and all that is involved, until last night. 

After I have spent the last 6 days at least arguing over insurance, my biologic medication, the infusion center, driving my doctors office crazy, along with myself, it hit me square in the face, that in 6 WEEKS I will be going to Washington DC! Here I have been wanting to do this all my life. It has been a dream, for me to stand in front of the White House, hopefully not speaking to just myself, but someone even if people just coming to be those to take a look at the White House and happen to "hear" my story. So long, I've thought about what I would say, how I would say it, and what I would want to get across to the officials in those buildings. It is almost like trying to reach the "Pope" or a movie star, or anyone that is in any type of place of "authority". Your chances of really getting to even shake their hand might be slim to none. Much less get their attention long enough to gripe about your illness, what the government is NOT doing to help it, and what they are DOING WRONG to make it worse! My thought has been unless you have lots of money to "slide" under the door of any one of our local, state or federal officials, you might as well, jump in the back of a truck, while it goes 30 miles an hour, down a dirt road and spit... And when the spit lands back on you mixed with dirt... that is just about how much you would get while the officials in Congress scrape you off of them like they scrape mud off their shoes. 

This from here down was written this morning... I am have a very difficult time between what I feel are flares of RA/Lupus, and way overly stressed... I am a total mess, mentally, physically and emotionally... I am wondering why I even try anymore... it always turns out to be a mess for me, rather than a help.... thus the reasoning behind this post.. (I also began posting the bottom portion of this on FB and changed my mind. I decided to post it here, and just put a link in to FB...


LOL!!!! I have been seeing the new "T-Shirt" on their Foundation's Website and wondered about it. When I was filling out the registration yesterday at the end it asked for your "T-Shirt" size! That is when I got the hint we would be receiving one! Honestly, over the past week I've been really struggling with all of this. I have actually began a blog post that I am still working on about my own internal, some physical, but more "mental" revelations about how quickly all of the things that are happening in my life right now are coming on me so very fast! Much of it "good" things, but entangled in the "good" are some challenges that I am definitely struggling with. I have just taken an immense "slide down through the rocky side" of my "mountain" of autoimmune illnesses right at this moment. Since I've not gotten the Rituxan infusions as I should have weeks ago, all of my RA symptoms have hit me like I just ran into a brick wall. I know I am in not only a RA flare of sorts due to the part where the bottoms of my feet hurt, especially when I first wake up and try to put my feet on the floor, to the stiffness and pain in my toes, thumbs, ankles and fingers, which is making trying to type a nightmare. it is not that it is so much "pain", I do have that, but it affects my "ability" to type. I hit wrong keys, I am constantly correcting myself, or having to back up because I've spelled something incorrectly as I typed it, and so on. Then it the "mental" true "brain fog" that this time has me terribly aware that these illnesses are takng their toll on my body in several ways. My ability to type issues are also because of the fog. I tend to try and spell words, or type normal, everyday words, and cannot remember them, and have to stop and think about what I am trying to say, or again due to the stiffness it seems my fingers are constantly on the wrong keys. And I am at the moment "brain and physically "fatigued". I feel as if I have mentally been in a prize fight. It is just almost painful to think. I want to just scream I can't take anymore!!!!!! I AM SO UPSET about NOT GETTING MY RITUXAN, that I could scream! It is one of the most frustrating situations for me. That is the ONE biologic, that has "worked" more for me than any of the others. There is just so much going on right now I feel like I am on a spinning top, and each day it goes faster and faster. I am battling the insurance even over just getting the Enbrel. I found out it is the ONE biologic of TWO that Humana will pay for. Yet, I still have to Jump through every hoop you can name to even be on that. I even got the prior authorization myself and faxed it to my doctors office myself to make sure they had it. And now I've called the "specialty pharmacy" two days in a row, they see the script and yesterday the woman on the phone says, "well, it appears maybe they got the "prior authorization form" but they are requesting "more" information from your doctor??? What the hell more information do they need? I've been going in this circle with them now for at least 4 years and each year it gets worse, rather than better. When I first began all of this autoimmune illnesses whirlwind, Humana, rarely questioned anything. For the most part, even all the surgeries I went through even 8 in ONE YEAR, there was no hassle. Many of them were performed and the insurance never even need a "prior" request on those. Then it began about two years ago. I began to notice my doctors would try to send me to a specialist, and the specialist would not be a "preferred provider"... and I had not had that before. Then they would "piss and moan" over certain medications with these "prior authorization" forms... not many but a few ... year before last, it was SO BAD that the first part of the year January and February, they made me get a "PA"(Prior authorization" on JUST ABOUT every medication I had been on for 5 years!!!! Heart med, Muscle spasm meds, you name it, they wanted this "PA" form for it. I argued with them and the answer I ALWAYS RECEIVED FROM THE INSURANCE WAS "it it MEDICARE(the government) MADE ALL THESE CHANGES" thus "they" the insurance company HAD TO request these even on medications for my heart, blood pressure, stomach and so on. That was the most asinine thing I had ever heard of. I spent hours and hours and untold hours getting that nonsense stopped! My doctors of course were all annoyed, and I don't blame them! They "put a patient" with high blood pressure, or stomach issues on medications, they are on them for years, then all of a sudden here comes the very insurance that paid for them asking for the doctor to fill out forms? In the first place the doctors do NOT have time for this. In the 2nd place it as ridiculous! Well, all of that finally went away I think. Come last year I noticed ONLY if it was a medication that was new to the patient and for the most part a "specialty" med they would then request a "PA" form. Yet, even then, the doctor filled it out, faxed it in, and I had my medicine quickly, there was no wait, there was no 72 hour "review"... and I certainly did not HAVE to wait 10 DAYS or more for my "prescription" to be processed once all of the other stupid paperwork was done!!! To add insult to injury, then, me not really realizing that Humana WILL NOT PAY for any "specialty" biologic medication (even though on their website they will "price" it to you at your local pharmacies", and I had checked prior to all of this and knew my local Wal-Greens did carry it and they had a specialty department that did the paperwork and then would let the pharmacist know when it was all done and when he could fill the script. Well, guess what? Then I come to find out that Humana will NOT pay for the local pharmacies to fill these medications, it MUST GO through Humana's own "Right Sour Specialty Pharmacy"... so guess what that means, more delay, and it was delayed even further because the "local pharmacist" could NOT understand I HAD to have the prescription faxed over to Right Source!! I asked 5 different times to "fax" it to Right Source and kept continued to try and "run it through" to the insurance! And of course the insurance kept "denying" it!!! It he done it a hundred times, Humana is NOT going to pay for it, unless it comes from "their own" Specialty pharmacy! Wonder where the kickbacks etc go on that one?????? Of course FINALLY I honestly think my doctors nurse faxed the script herself to the correct place Monday morning. Then she gave me the fax number their and reminded me that she knew a "prior authorization" form would need to be sent to her and filled out, then sent back to Right Source! SO, I was lied to because Wal-Greens told me they had gotten the "PA" form. If they had then there would not be a call for another one I was told at Right Source, because it would have been in Humana's website, thus they would not NEED one, the one would suffice!!! So, let's start the phone calls and the whirlwind again! Now I had to "dig" through Humana's website (which I already knew the drill on this one) find that form, get online and fax that form to her (the nurse) at the doctors office. Because if I had WAITED for then "pharmacy" to request it, that might delay it for weeks because that mean the doctors office would have to dig it out, fill it out, and send it to Humana for approval. So rather than jump through another 25 steps, I tried to save a few and sent it to her myself. Which I am not sure even made a difference. For two days I continue to get the same response. Well, it looks like we are "waiting" for something... in fact yesterday's phone call to "Right Source" is what led me down the track to even when we receive all of the information it will take "72 hours" for review? What more is there to "review" when you have everything but it signed in blood and stamped by the President stating I need this medication!? And it just continues to float around and around within the spinning, ever spinning, world of what we should NOT have to go through! Now, with all of this, plus I KNOW without a doubt, it is not long, until the Sjögren's has taken everyone of my teeth and crumbled them to nothing. I have at least 4 right now, that are just "pieces" of teeth. I barely have any jaw or chewing teeth at all. And the ones up front are so fragile I fear biting into anything... I have my 4 bottom front ones that "so far" have not shown or I've "felt" them having issues. But that is just the problem. They can "seem" fine one day, and the next you are eating, and suddenly there is a "space" where part of a tooth was! No Kidding! It is insane. That is usually how it happens for me. And it does not have to be something difficult to chew and so on... just normal eating, and then my tongue will suddenly "know" something is missing... sure enough an entire side, or back of a tooth will be totally gone! I have two of my very back jaw teeth, one of which he could not even "fill it" permanently because the cavity was so deep, he said I would not be able to withstand the pain because of it being so near the root. So, he put some of the "temporary" type of filling in their but it has already itself became partially gone... and the one just like it began hurting and feeling "odd" yesterday, thus I am almost sure it will have to go soon also. Right now I would bet I have 6 that either need to be pulled or slightly a possibility a filling may help them. But since it feels as if an entire side of it is gone, I am betting all of them but possibly one have to be extracted. That would have me literally with maybe 3 jaw teeth in the top, and my 6 or 7 top and bottom front teeth... and those in the top are just "patched" together... they are trying everything to keep those in as long as possible.... So, I ONLY "saving" grace in the matter of my teeth is that there is a possibility due to all of this damage being from "Sjögren's. the insurance MAY pay for a specialist. In fact one of the "nicer" women at Humana even gave me the name of a doctor who is more of an oral surgeon that might be able to "screw" the teeth into my jaw bone (seeing that my jaw is not totally messed up with the osteoporosis) because "dentures" are NOT the answer for anyone with Sjögrens'. Due to no saliva or very little those will not "hold" properly in the mouth. I just am not able to fathom the amount of pain, expense, and what I will have to go through to have these teeth "fixed" or something done with them. Hell a "root canal" and crown is over $3,000.00, much less that kind of thing to be done! So, within the spinning web of ALL that is so amazing, and yes my birthday is Saturday... all of the horrid nightmare of bad stuff keep putting a damper on the good things coming my way. I am ready to throw in the towel... and just sit on the sofa, and forget it all. I've fought this battle way too long, and way too hard... and I am reaching the place that that mountain top is way too high for me anymore... I don't know where to turn... and I certainly really do not want to go anywhere over the weekend... I know it is planned to go, but between money, and the operation, and me not feeling well, I am just not in the state of mind to go anywhere right now. Hell i need to go grocery shopping and I'm having a huge struggle in trying to convince myself to go and do that. I am just tired of it all.....

Another Brand New Medication on the Horizon for Approval against Lupus

UCB and Immunomedics Inc. announced today that a new lupus drug candidate, epratuzumab, provided a significant reduction in disease activity in patients with moderate to severe active systemic lupus erythematosus (SLE).

See the URL:
http://www.lupus.org/webmodules/webarticlesnet/templates/new_empty.aspx?articleid=3273&zoneid=99


This has been a wondrous week when it comes to living in the world of those with Lupus, and other autoimmune diseases. The many years of research has paid off, and now we have at least 3 innovative, one of their kinds new medication to take away many of the horrible symptoms of Lupus, along with possibly slowing down or stopping the damage to organs, such as kidneys, heart, liver and the brain. I am so incredibly psyched about the possibility of being "more well" and less worried about how much damage the Lupus is causing to my vital organs. I have already had more than my fair share of complications due to the Lupus, when it comes to other issues I have health wise. No matter how "not serious" or how serious other entities in your life as far as illness may be, Lupus can definitely reek havoc with your body, and cause even a minor health problem to turn into a major detrimental situation very quickly. Did I ever learn that just a couple of months ago when I thought I was having a severe gall bladder attack that was requiring laproscopic surgery to remove it. Little did I know the Lupus, along with a nick in my liver during the gall bladder removal would put me on a very thin line of almost losing my life to complications.


I pray that no one ever have to go through what not just myself, but my husband and family went through for 8 weeks plus. Even after I was "out of the woods" so to speak and at home, all of us were extremely concerned I could suffer harmful set backs that would send me back to the hospital at any time. I am still have pain issues in my right side, with tenderness, and symptoms that could be related to continued issues with my liver and pancreas. I certainly hope not, but we are keeping a close eye on any developing problems.


Please continue to follow the great news though about these new medications. I will continue to keep you posted on information I receive about the continued breaking good news..   Rhia