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Moving Right Along Trying to Put Medications in Place for Lupus

http://lupusresearchinstitute.org/lupus-news/13/10/15/positive-results-clinical-trial-testing-lupuzor


This is incredible news! Once again great things are happening in the world of Lupus, why it occurs, how to possibly "kick" it with new medications, and research in such a huge dimension! It thrills me to see this, not just for myself, but for the thousands of others suffering needlessly from all of the symptoms and other "co-ailments" that go along with it.

More Incredible News in the Realms of RA and New Treatments

Many of you have already heard of Simponi. It is one of the latest "biologics" on the scene as far a Rheumatoid Arthritis, infusions, injections, and the like. We have several that you can now give your own self an injection at home weekly on the majority of them. That has made all of these much more appealing so you don't have to make trips back and forth frequently for infusions.

I recently went on Rituxan. My Rheumatologist and I had discussed it for over a year, before we took the plunge. But, I had already tried Humira for over a year, had tried Orencia for several months, and I still had severe pain, and what felt like my feet, ankles, heels, fingers and thumbs were just degrading daily. The pain had gotten so intense, I feared we would not be able to get it under control. Lord knows I take enough medication for various types of pain, plus I have my pain pump that is internal. That sucker still has to be refilled about every three months. Due to my insurance just jumping off the roof in pricing it almost would be cheaper for me to take pills. But more than likely I would never be able to get enough meds in my system to do enough good on my body to stop the pain. The pump alleviate's most of that. Since the medication in liquid form goes directly through a small catheter to my spinal fluid, the medication goes straight to the part of the brain that needs it to get relief. Thus it takes a very minute amount daily to get that relief, verses me having to try and keep up with, and take on a daily basis several pain pills at different intervals. So, for know i will say due to my situation, the pump was and is still the answer. Now don't get me wrong, it absolutely does NOT take away ALL the pain, nothing does. But, it sure resolves the fact that I am not "out of it" or groggy and so forth. I have no side effects as you would with it being orally taken.


Now as I said I got a notice this morning via email that Janssen Biotech, Inc has just came out with a "new" type of the medication called "Simponi Aria". If the Rituxan for some reason decided to not work, I would definitely look into this medication. The link is below:

http://www.simponiaria.com/?utm_source=3504&utm_medium=email&utm_content=simponiaria.com&utm_campaign=august_2013

More News on the Lupus Front

It is very exciting to see all of the ideas, research, advocacy, and funding for even more research that is coming out when it comes to Lupus! I have gotten at least 4 emails just this week alone about things that are just incredible when it comes to the realms of Lupus!

Here are a few URL's for you to read:

http://www.lupusresearchinstitute.org/our-research/advancing-lupus-care-through-research-and-advocacy-progress-and-promise-lupus-patients

this one above is about the Advancement of Care when it comes to Lupus through Research and Advocacy. Novel research through genetics that will come to target of drug development to help in the fight of two very serious complications that happen often with Lupus, which is kidney damage and damage to the heart. As of now there are 30 different clinical trials that are going on for these two particular complications in themselves. The more clinical research going on though means the need for more patients who meet the criteria and are willing to go through these clinical trials. Several other issues were addressed, along with these, and you can read about those also in the URL above...

As with all of our clinical trials for possible Lupus medications, as well as other Autoimmune Arthritic illnesses, we must have change in the factors of getting insurance companies to pay for the drugs once they are on the market and out there for patients.

I realized through my own illnesses, the medications are extremely expensive. If my insurance decides not to pay for any of them, I would not be able to afford them myself. So, we must continue to advocate in order to make sure that we have insurance companies who are willing to pay for these medications as they are approved by the FDA and out there for patients to use.


This next one is difficult for me to believe, simply because just about any time I "flare" with my Lupus, I begin with a headache, that I often refer to as a "Lupus Migraine". It will not stop with just "pain medications", no matter how much you throw to try and stop it. The ONLY thing I've found to halt the horrid pain of one of the headaches is corticosteroids. I can get an injection of Solu-Medrol, along with a 14 day step down packet of prednisone, and about 18 hours later the headaches begins to subside. So, to say the Headaches are "not" related to the Lupus Disease and its Activity seems wrong to me. But, that is myself, and not everyone as a whole out there. That would be a great poll to take, on the average how many of us have some form of a migraine, or headache when we have a flare coming on ? It would be interesting to see what statics we came up with as far as us and headaches.... Here is the URL:

        
http://www.eurekalert.org/pub_releases/2013-10/w-hil102413.php

Lots of New News After What Sounds Like An Extremely Successful Rheumatology Meeting/New Pain Medication Approved?

I've already heard great things from the weekend's meeting of the American Board of Rheumatology. There are already many articles coming out about medications, new research, and all types of things that will probably be coming out in news articles over the coming weeks.... There is also an article in the NYT's today about a new pain medication approved by the FDA. Due to all of the controversy over the "narcotic" pain meds lately, this of course was a mixed blessing depending on which angle you look at it. My understanding is that it will have a "security" type coating built into it, or something where the medication is not good if it is cut, smashed, or so forth. I am still looking into it, but I believe from what this article says, that will be the case.... for more information see this URL:


http://www.nytimes.com/2013/10/28/business/fda-shift-on-painkillers-was-years-in-the-making.html?partner=rss&emc=rss&_r=0

Lupus Patients and Low Income/Medicaid

http://healthyliving.msn.com/health-wellness/many-lupus-patients-forgo-needed-medication-study-finds


I can totally understand this.... Medicaid is different in different states... so there are many places medications may not be affordable to someone with a low income...

Well How Long had it taken them to figure this out???!! RA Early Treatment help to cut damaging effects!!!

http://healthyliving.msn.com/health-wellness/treating-rheumatoid-arthritis-early-may-cut-damaging-effects


Good Lord, will I ever have lots to say about this article!!!

Living through a "female's" hell....

Ya know... I have just about decided to change my ENTIRE REALM of thinking when it comes to writing, especially my BLOG!!! I want to start talking and writing about HOW MUCH CRAP WOMEN go through in order to just BE A FEMALE!!! Why is it that WE THROUGH ALL OF THESE CHANGES IN OUR LIVES, from the time we are a teenager and develop "a body" and curves, to child bearing years, birth control, yeast infections, annual "exams", and every kind of extremely "intimate" piece of us gets exposed most of our lives... mammograms, pap smears, dealing with cramps, and all those goes along with that.... then you go through either a "hysterical" ectomy! if you get my drift, to hormones changes that "atrophy" things that hell you never knew you "atrophy".... I am just blown away that men... don't have to worry about anything such as any of this... oh they may "worry" because it does not "fit" their schedule, when they are "in the mood"... I spent my entire morning crying my eyes out over "creams", worrying about another heart attack if I use some of these things that should make my life a little "special" again... WE always are making a "choice"... whatever it is, our bodies go through hell and back .... and then hell and back again... I am so totally torn into shreds about all of this crap, until i can't even write this without crying... it sucks

More News on the Lupus Front...

http://lupusresearchinstitute.org/lupus-news/discoveries/13/10/24/lupus-research-institute-announces-new-global-research-fundamental-c?utm_source=feedburner&utm_medium=email&utm_campaign=Feed%3A+lrinews+%28Latest+News+from+the+Lupus+Research+Institute%29

National "Drug" Take Back Day this Saturday!

This Weekend the "Take-Back" day for all types of medications especially prescriptions that you may have that are outdated, something you no longer take, etc will be on the 26th. Here is the link for more information... by the way, this is totally anonymous. I have done it the last two years with expired prescriptions, or medications like antibiotics or something that I did not use all of, or could not take for some reason. It is a great way to dispose of these. We should never throw medications in the toliet or wash them down the drain. Our water is full enough now because of us doing that. Yet, most of us do not want these lying around our home either, so this makes it easy to get rid of them. I have some samples etc that I will take this weekend. Sometimes the doctors gives you some samples, and then maybe you can't use them... thus they are there in bottles laying around... I know I also have some Humira here that I wished I could give to someone who could use it. After my Rituxan infusion for the RA, I no longer can use the Humira injections. And they are so expensive, but I know there is no way a doctors office would give them to a patient... even though they are completely sealed. I have tried to think of some way of finding someone who could use them. I hate to throw them out. I don't think I can even dispose of those on the 26th though. I believe anything that involves syringes can't be taken... even those like something for diabetes and so forth. I will have to check. Anyway here is the link: http://www.deadiversion.usdoj.gov/drug_disposal/takeback/index.html