UPDATED PATIENT GUIDE FOR ICER REVIEW OF MIGRAINE PREVENTION MEDICINES

GUIDANCE ON PATIENT SUBMISSIONS DURING PUBLIC COMMENT PERIOD

DUE BY MAY 8, 2018

Now is the time for all of us to tell our journey through the maze of Migraine Hell! Please see the URL for further information or if you would like to participate. 

Here is the full URL to see the information:

https://www.headachemigraineforum.org/icer/

Fed Up With Pharmacists, Doctor's, Lupus, Medications and Fed up with too many side effects! Loving Fishing, and Better Weather

Was out at the lake yesterday, but the wind picked up the wrong direction and I had to come home. I can't stand in the sun due to the Lupus and meds etc... and I HOPE I finally have some sunblock for my FACE that DOES not cause breakouts. I FINALLY ALSO GOT HUMANA AFTER 4 WEEKS OVERDUE OF MY RA MEDICATION BACK ON TRACK! THEY ARE SUPPOSED TO DELIVER IT TUESDAY! I hope so, my fingers, THUMBS ARE THE WORST, WRISTS, ANKLES, EVERYTHING IS SO STIFF, HURTS, I COULD NOT EVEN BUTTON OR UNBUTTON MY JEANS OR ANYTHING THESE PAST FEW DAYS... 

I can't cut up fruit, and even trying to be out yesterday cutting a few tree branches down for the trash, I accidentally hit one of the branches on my leg, and it was just a little nick, and it bled everywhere. I had to come in and I already have spots on that foot and ankle where mosquito's bit me and it itched so badly, I've got a rash where I scratched it in the night... So I've had to bandage up my foot so much it looks like I cut off half my foot!!! And it's just a few scratches mainly, but if I don't the pups want to lick it, and then I was outside this morning, weed eating and spraying the weeds in the back, raking up and so forth. So, I fear infection so badly. Ever since the incident on both thighs where I had the cellulitis, that turned into "holes" in my legs, and I still have terrible scars, that although I went to the wound care people for 6 weeks in Dallas, they still never really healed where they covered over and look nice. I am almost embarrassed. Between those, the cuts on my knees from the replacements, and now for some reason, I have "spider" veins so badly in my ankles they look horrible!!! And it is so odd, I never had any problems, then about a year ago or more, 

I began getting them all over both ankles. I don't know if me spraining them so badly, that Sunday of Mom's funeral, and I had already sprained the right one twice before, if they "broke" those vessels that badly or what, but they are so ugly. I've asked the doctors and they told me that insurance probably would not pay for it. But, they also tend to "seep" under the skin, so at times those ankles where the spider veins are so bad will "weep" and cause my ankles to swell. I know they have new treatments now. They used to put saline through them, and they said it hurts like hell. But, now I think they can "laser" them... I am thinking about going back to the foot specialist I saw with my ankles being so badly sprained they would not quit hurting. Plus the right one would swell so much, I could not walk on it. He put an injection of corticosteroids in it, and that really helped to stop the swelling and pain. But, the spider veins make my ankles look like I am an old, old lady! I guess though after all of the surgeries and scars from them, I get to where I don't care if people think they look bad or not! I refuse to COVER UP and burn up and not wear shorts, when it's hot! 

Anyway, been a busy week, and I've been busy every day doing something. I still have not done  that stupid lab work, but it has to be fasting, and I get up so early, I can't go for hours without my coffee or tea... last time I ate breakfast early, then went for 8 hours without food and then went in that afternoon for the blood work, rather then trying to go in at 8AM. And I got kind of peeved at my Cardiologist last week. ^ months ago when I was there, we talked about putting in a pacemaker, due to my heart rate being so slow especially at night. It will be at 43 beats or less at times, and she suggested since I take the medication for the "extra beat" I have she could do the pacemaker. But, of course once it's there it is forever. So, this time she talked about sending me to a "heart rythym" specialist. She said he could possibly try a "different medication" or decide whether to do the pacemaker.. Well I said, 1st of all, I am taking too many meds as it is and I am just about ready to throw them all out the window and use "natural" supplements, because each time we try a new medication, I have problems from it. Then she admitted she DID NOT do the "medications" this specialist does "because there are so many side effects"... so I said well then, "if" I decide I am "bothered" too much by the arrythymia THEN she could DO THE PACEMAKER AS WE ALREADY TALKED ABOUT! She was the one who just told me 6 months ago,, the pacemaker was the simplest way to "correct" the slow heart rate!!!!! So, WHY WOULD I GO TO YET ANOTHER SPECIALIST, THAT FIRST OF ALL UNLESS IT'S LIFE OR DEATH, I AM NOT TAKING ANY NEW MEDICATIONS!!! I am FED UP WITH THEM, AND ALL OF THE SIDE EFFECTS THEY CAUSE!!! 2ND OF ALL, she can do the pacemaker right here in my hometown, as a day surgery, and I can go home in a few hours. I DO NOT NEED OR WANT YET ANOTHER "SPECIALIST" THAT I HAVE TO GO TO DALLAS AND TRAVEL TO SEE! It's bad enough with the Rheumy, Pain doctor, and the Orthopedic surgeon, without adding to the list!!!!!

FED UP WITH PHarmacies, and them "not doing what the doctors tell them to do!" This means YOU HUMANA!!!

FED UP WITH HUMANA SPECIALTY PHARMACY! They have SCREWED UP 3 WEEKS IN A ROW, & I STILL DO NOT HAVE MY RA MEDICATION!!!!!

I'VE BEEN ON THE PHONE WITH THEM AT LEAST 5 OR 6 TIMES! EACH time they have "a different" reason, and I told them I am fed up and this is why I DESPISE USING A MAIL ORDER PHARMACY! You "never get a straight" story" as you do when you can see the pharmacist face to face!

I got so mad this morning after weeks of them "making every excuse" when basically THEY WANT TO TELL MY DOCTOR WHAT I CAN AND CAN'T TAKE! WHICH IS BULL! But, I "chewed her out" and hung up... the woman on the phone, was already being a bit "rude" and that just make me more upset, so I told her off, (but I did not say any curse words() LOL although I wanted to! And just hung up on her, THEY ALWAYS TRY TO BLAME IT ON THE DOCTORS! When it is THEM THAT HAVE SCREWED UP!!!!!

They always want to "say the doctors office is messed up" when it is usually THEM THAT ARE MAKING THE MISTAKES! Plus now they as I said on Facebook, want to "tell our doctors" what they "can and can't do"....

It is none OF THEIR BUSINESS OTHER THAN TO FILL THE MEDICATIONS AND GET THEM TO THE PATIENTS!!!
They are causing me needless pain, needless wasting of my time on the phone again and again. They are WASTING THE DOCTORS TIME, with Paperwork"

Diabetic Nerve Pain and New Clinical Trial by Cure Click

85% of people with DPN say #diabeticnervepain affects them daily. Research studies enrolling now. Payment varies by study up to $300. #sponsored #cureclick pic.twitter.com/HKjwOJpDw6 See if you qualify! 

http://curec.lk/2Ib9i7t

Sponsored by Cure click

Crohn's Disease New Clnical Trial by Cure Click

Housebound with #Crohns flares? Local studies are enrolling now. Payment varies by study up to $750. Learn more! #IBD #colitis #sponsored #cureclick http://curec.lk/2j2LqIY

#AnkylosingSpondylitis - Clinical Trials by Cure Click

#AnkylosingSpondylitis? Research studies enrolling. Earn up to $500, varies by study. #AxialSpondyloarthritis #axSpA #AS #sponsored #cureclick Learn more! https://curec.lk/2Eu7ZxF

#Parkinsons patients, and Clinical Trials

For #Parkinsons patients, in addition to the more well known motor symptoms, up to 50% of patients also suffer from excessive daytime sleepiness. This can have a significant effect on the quality of life of both the patient and their caregiver, and in some cases be even more profound than the motor symptoms.

A new clinical research study is looking at the safety and efficacy of an investigational medication for excessive daytime sleepiness in patients with Parkinson’s disease (PD). For patients who meet the study criteria, the trial will last about 9 weeks and involve 7 visits to the study center. Qualified participants will be provided compensation for time and travel.

Please consider helping medical research in this important area by participating in this trial. You can learn more and begin the qualification process at https://curec.lk/pdblogger.

NEW RA Medication "JAK and JAK-1 Inhibitor for "Oral Use" in Rheumatoid Arthritis

New Clinical Trials and Information from the FDA in regard to a brand new Oral Medication, first of it's kind for RA... on the horizon possibly...

http://www.rheumatologynetwork.com/rheumatoid-arthritis/clinical-update-baricitinib-rheumatoid-arthritis

There is a "supposed" New Rheumatoid Arthritis Drug, (Oral) another JAK and JAK-1 Inhibitor on the horizon BUT there seems to be questions in regard to causing "blood clots" and it is in Clinical Trials at the time. This would be the "1st) of a kind RA medication that would be a ONCE daily oral med. We NOW have another JAK Inhibitor, Xeljanz on the market. You take it twice daily and it is an oral medication. What my Rheumatologist told me it is usually good for those with >mild> RA as a "stand alone" medication BUT for those like myself with "severe" RA,other medications such as my Actemra that I take by injection which is a biologic, along with other medications are needed when the RA is in severe form. I've really been through the mill on these two. I've been on Actemra now for about 9 months or so. But, my hand joints,wrists, fingers and especially my thumbs are really bad! So, he put me on the Xeljanz orally I take twice daily. Well at first I was thrilled then I got to reading and worried about the biologic and the JAK inhibitor together. I spoke with my PCP and see my Rheumatologist next week. What my PCP told me, is that "each person" is individual, and they have to put out the information for "overall" folks, BUT that my Rheumatologist has done is own "testing" as far as how his patients and those in the clinic do overall with the medications. So, he decided for me it was a "good fit"... which of course we all know that because you "read" something online does NOT mean it is so for you also... but this is exciting news for another alternative, or addition to our other RA medications. As well as many possible other autoimmune illnesses.

Here is more information and this is by Lilly....

https://investor.lilly.com/news-releases/news-release-details/lilly-file-baricitinib-resubmission-us-fda-end-january-2018

https://www.incyte.com/what-we-do/develop.aspx

"The Texas Blues" written and sung by me

I don't have the guitar or me playing the song but he is one I wrote back a while ago, and added to it lately... I am a bit off key LOL... plus I've had such a sore throat lately, I have a difficult time trying to sing.. after the last neck surgery, he really did a number on my vocal chords going in through the front of my neck, so I've not yet gotten my voice back as it was and may never get it back all the way....

"The Texas Blues"copyright 2010 Rhia Steele

APRIL is National Sjogren's Awareness MONTH!!!!

http://info.sjogrens.org/conquering-sjogrens/topic/april-awareness-month


This was a "strange term" the 1st time my Rheumatologist said it to me. I had heard of it a couple of times from women I knew that had it, but I had no clue just how "damaging" this illness (autoimmune at that) can be. Did it ever takes its toll on me, when within 2 weeks I had 3 TEETH BREAK OFF AT THE GUM LINE! From that point, ONE OF THE MOST HORRIBLE THINGS I EVER DREADED HAPPENED TO ME... I HAD TO LOSE ALL OF MY TEETH AND HAVE DENTURES! I always "feared" losing my teeth, or losing my hair! One of those came true.... and to this day, (this was in 2014 that it began) I STILL FEEL SELF CONSCIOUS, AND IT HAS HINDERED ME IN MORE WAYS THAT YOU CAN IMAGINE, EATING, SLEEPING, BEING IN FRONT OF PEOPLE, TALKING, SINGING, YOU NAME IT, IT IS HORRID! I spent well over 6 MONTHS, having the REST OF MY TEETH THAT WERE ROTTEN AT THE GUM BEING EXTRACTED, then at the last he pulled ELEVEN more and put the dentures in... and again I will never be the same.... so SJOGREN'S is nothing to TAKE LIGHTLY! It effects ALL MUCUS MEMBRANES OF THE BODY, FROM THE MOUTH, NOSE, EARS, SKIN, YOUR INTESTINES, YOUR HEART, EYES, ANYTHING THAT HAS A MUCUS MEMBRANE CAN BE DAMAGED OR SEVERELY RUINED JUST OVER NIGHT... AND RIGHT NOW HONESTLY THERE IS NO CURE, AND EVEN THE TWO MEDICATIONS AND I'VE TRIED BOTH.. DO NOT REALLY WORK ALL THAT WELL....