Friday, April 20, 2018

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...




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....






"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





Tuesday, April 3, 2018

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....


Saturday, March 31, 2018

May The Easter Blessings, Fill your heart with joy, and give you the strength and courage to face tomorrow and the next.... Happy Easter




Because He Lives, We can hold on and face all that this Old World throws in front of us. As we walk through illness, stress, jobs, and all of the "bad" things here on Earth, we CELEBRATE THE GOOD ONES, AND KNOW THAT HE LIVES FOR US!
May you know in your heart on the 3rd Day the stone was rolled away, and Jesus Lives for Us....





Friday, March 16, 2018

New Flu Vaccines in Clinical Trial by the NIH!


Thursday, March 15, 2018

H7N9 influenza vaccine clinical trials begin

NIH HAS NEW CLINICAL TRIALS UNDER WAY FOR NEW FLU VACCINES!!!



https://www.nih.gov/news-events/news-releases/h7n9-influenza-vaccine-clinical-trials-begin





AUTOIMMUNE ILLNESSES, & CAN YOU have "Botox", "Restalyne" Or some of the other injections for lines around the "Mouth and Lips?"

QUESTION? ANY OF YOU WITH AUTOIMMUNE ILLNESSES, HAVE YOU EVER WENT AND HAD ANY TYPE OF FACE/LINE PROBLEMS DONE? LIKE GETTING A BOTOX INJECTION, OR SOME OF THE NEWER ITEMS THAT ARE DONE BY INJECTIONS? I KNEW ONCE I GOT MY DENTURES (DAMNED SJOGREN'S TAKING ALL OF MY TEETH) THAT I WOULD HAVE MORE OF A LINE ON EACH SIDE OF MY FACE AND ON THE TOP OF MY LIP... 


BUT OF COURSE WITH AGE THEY ARE GOING TO BE THERE AND GET WORSE. SO, I HAVE READ BOTH "OKAY" AND "NOT OKAY" TO HAVE THESE TYPES OF PROCEDURES DONE IF YOU HAVE LUPUS ETC??? ANYONE HAD ANY EXPERIENCE, AND IF YOU DON'T WANT TO SAY ON MY MAIN PAGE JUST SEND ME A MESSAGE ON THE MESSENGER. I AM REALLY, REALLY BUMMED ABOUT HOW THEY ARE WITH THE DENTURE SITUATION, WHICH I HATE THEM ANYWAY, THAT IS ANOTHER ENTIRE STORY! BUT, I WOULD LOVE TO KNOW MORE FROM SOMEONE WHO HAS EITHER TRIED TO HAVE IT DONE, OR HAD IT DONE ETC!!!!! THANKS! RHIA


ONE ARTICLE:   https://www.skintour.com/q-and-a/autoimmune-diseases-and-fillers-are-they-safe-can-food-help/

Friday, March 9, 2018

Young Women from 24 to 32 or so that really NEED HELP TO GET THEIR LIVES ON TRACT... AND wanting a 2nd chance & the difficult time they have. Me, lupus, RA, Sinus infections infections and Life!

Lupus Flares, Pain Pump refill, Young Women & getting another chance to change their lives, LIFE, and Chronic Illnesses with PAIN!



Everyone, it has been MORE THAN AN INSANE WEEK OR MORE FOR ME! Between my own doctors visits, and a friend had a new baby and there were issues, but all is well now, I had to go over to the next town in our county to renew my driver's license, since it's been 12 YEARS LOL since I had gone in and took a new photo etc, I had to physically go in this time to renew it. That took forever; although I must say the system now is better than it used to be. Then I had another friend with problems, and was trying to find some help for her, along with my own other stuff, cutting tree limbs, and I've got to get to the market today, but I have not had time to clean my house like it needs, and then I have to take a shower, and it's so pretty outside, I need about "5 of me cloned" so I can do 20 things at once!!!! I have not felt that great yet either. In fact, I have not started my RA meds yet, since being ill with the sinus infection. For some reason, I was running a fever, low grade, but still a fever Monday. 

I went in for my pain pump to be refilled, and when they checked it, sure enough I had a low grade temp. I came home and checked it myself, and I was still running a bit of one. I didn't run any fever at all with the sinus infection. Plus, I have kind of "stopped" running a low grade temp with the Lupus. Used to I seemed to almost have a low grade one daily with the Lupus. It went back down and as far as I know has been back to normal the past couple of days. But, I was concerned so I still kept off the Actemra and the new Xeljanz, until I could see what the temp was all about. But, I've had a damned headache, and a bad one at times, for the entire week! IT could be "stress" or maybe I have a Lupus flare, that will give me a Lupus Migraine from hell at times. 

So, yesterday I "almost" went BACK for a 4th time since the 1st part of January and had them give me a prednisone injection for the headache. But, I toughed it out yesterday, and it is not so bad so far this morning. So, it could be anything causing it. With everything going on, as I said I could be more "stressed" out than I think and it's causing the headache. Usually I don't have one that bad. 

When they are bad enough I want to scream and cry, usually it's due to a Lupus flare, or I am sick with something. So, I am going to take the Actemra later this evening and then take my 1st Xeljanz tomorrow and see how things go. Please keep me and those couple of people in your prayers, with problems and the young woman with a new little baby girl. She needs lots of prayers, so she can get her life together, and get back on her feet. The very "odd" thing is, lately, I know of about 4 people, that have someone in their lives in the same situation. The nurse that comes to see me weekly from my insurance, is helping a young woman with kids, and her trying to get her "stuff" together, and the young woman I know. Then my daughter also knows a young woman going through about the same situation, and I have another friend that has a daughter who is really trying to get her life on tract, get a job, her own place to live, and put herself back on the right roads.0 

These young women ALL need our prayers. It seems that many of them at about 25 years old, either get involved with the "wrong crowd", have a child or children, either the Dad is not there or does not help out, and they are desperately trying to dig their way into a 2nd chance. But, that is hard to do... it's hard to get any assistance these days, it takes so much time, paperwork, and red tape. Then of course we have some that have "abused" it, so that makes the ones that really WOULD benefit and try to do right unable to get the help they need. So, something about that age group, some between about 24 to even 32 or so, really lots of young women out there with the same problems... and NO PARENTS, that either will help, or are even around to help.... it sucks, and i AM SO PROUD THAT BOTH OF MY ADULT KIDS ARE IN A PRETTY GOOD SPOT, AND HAVE THEIR HEAD ON THEIR SHOULDERS RIGHT!  For that I am BLESSED AND GRATEFUL FOR SURE!!!! Have a good weekend everyone!