Showing posts with label prescription pain meds. Show all posts
Showing posts with label prescription pain meds. Show all posts

Tuesday, December 29, 2015

UPDATE - On New Pain Pump Surgery and what is to come....


A quick post to let everyone know I am home, actually got home by about 11:15AM or so, and how I am doing. I know some friends and family maybe concerned, and I am kind of "out of it" so I wanted to post here so everyone knows I am doing good.... I am so thrilled that a dear friend of mine, who was pregnant with her daughter the same time I was with mine, took me and brought me home. She has has several back surgeries herself, so she knows all too well, about all of this.... I am very thankful that she did that for me.... :)

I am actually home already and all went fine. They had a bit of a mix-up not having the medication there at the outpatient center that he fills the pump with. But, my old pump had quite a bit in it, at least until I see him on the 7th. The did NOT turn up the pain meds in the pump like I thought they would, and that is probably for one due to the correct medications to refill it completely, and then I think he wanted to see how I do for now. I still have more oral med I can take if I need them, and I already knew I came home after a 30 mile ride back, had to take one of them... but they had me in and out so quickly again I am still feeling the anesthesia medications in me... so they are keeping me on the sofa at least today to see how all goes... and to get some rest like I know they wanted me to... so I am not staying on here, just wanted to post quickly to let you know and some of my family and so forth I am home safe and sound... and all seems to have went well...

Wednesday, May 27, 2015

Prescription Pain Medications and Legitimate Patients Once Again Could face issues... we MUST stand up for OUR RIGHTS!

Again, as you can see, those of us who ARE chronic pain patients and we DO take our Medications PROPERLY and we keep them SAFE, LOCKED UP, and take them ONLY AS DIRECTED, following all of the "pain doctors" orders to a "t" so we do NOT abuse our medications, nor are we the ones using them for "recreational" use, or to do something illegal with them. SO, the "FEW" the DO NOT use them correctly, OR they sell them, or overtake them, or get them from numerous doctors and so on, cause US the very people the medications are for, to SUFFER!!! It is already DIFFICULT ENOUGH to get into a GOOD pain doctor that DOES prescribe pain medications. Then when you do, never would you try and do anything to jeopardize that "contract" between you and your physician!!!! WE MUST stand UP for OURSELVES!!! Or once again, we will be in a place that we may have suffer needlessly due to the few that do wrong. This has to be talked about, taken seriously, and we are the ones, the PATIENTS that must fight for our rights as being able to do "our lives like I do my own.... So, each of you, that are in the same situation, I would love to hear from you, and see what you have to say about this ever changing issue... it sucks that a few, can cause harm to so many.

Sunday, January 19, 2014

"Black Box" Warning - Certain "Fluoroquinolone" Antibiotics! IF taken too close together... can certainly lead to serious issues.

When what seems "NORMAL" may NOT BE Normal At all...

Like many of us, with or without Autoimmune Arthritic Diseases, we have the occasional "infection". Lately, it seems if you don't have the flu, then you certainly have some type of throat, lung, ear, and so forth "infection".

It has sent many of us to our doctors, for several reasons. Either we feel it is the flu, so we go to try and get "Tami-Flu" in time to "curb" the severity and length of having the flu. Or we stay ill so long, have fever, show signs of infections, especially lately seems like everyone has a bad cough they just can't shake. So, off we go to the doctors office.

Well, like many our home has been "ill" now really since right before Christmas. My husband came down with what seemed like the flu. Yet, he did not have "all" of the what I would call normal flu symptoms, and his cough was very bad. Fortunately, I had "left over" cough meds, had Mucinex, some antibiotics that I knew he could take, bought some medicated Vicks rub, kept him AWAY from me, and I was continually spraying, wiping, cleaning... using antibacterial everything, everywhere, because I certainly did not WANT OR NEED TO COME down with any of it. It took weeks, but right about the time New Years rolled around he seemed to be feeling better, although the cough was lingering. I felt he brought had bronchitis, thus the lingering cough, etc.

Well, I guess it was probably New Years Day, when all of a sudden I began to feel "stuffed up". I had just been to my doctor for a follow up  visit on the 27th of December (and my Doctor was still sounding hoarse, he did already have the flu himself)... I was quite leery when I found that out. Anyway, I got the usual injection of steroid for the Lupus flare, 14 day step down dosage of predinsone, and went on my merry way.

As I said above, I noticed New Years Day, I felt kind of lousy. It was surely NOT from any partying from the night before. since we were at home, with the two dogs, trying to stay awake long enough to watch the "ball drop" from Time Square. I began to notice I was feeling kind of "chilled". I did not seem to have any fever, but I was just chilled. As the day continued, I just felt worse.

I began the coughing. Since I already had just seen the doctor like 4 days before, I called told them I needed some antibiotics... felt like I may have a throat or lung infection starting. So, he called me in some antibiotics, cough meds, and I picked those up and began that. This was "Levaquin", the antibiotic. I am sure any and every one of us that has an allergy to any type of "penicillin", has had Levaquin before. It happens to be in the fluoroquinolones family of antibiotics. I had been prescribed it before, so I was not concerned over side effects and so forth. I picked it up and began taking it. Well after 5 days rolled around and I not only was I NOT better, but almost felt worse, I called his office again. I told his nurse, that I felt like it was "moving" into my chest. So, later in the day, I get a call back from his office. He had called me in a different antibiotic called "Avelox". 

I had not taken that one last "Levaquin". So, rather than do that, I left it in the bottle, and began the new one, the Avelox. I had not had this one before, to my knowledge. In fact I went to read up a bit on it, and seen it was in the same "family" as Levaquin. They were both fluoroquinolones types of antibiotics. 

Well, 5 more days rocked along, and in fact I had to cancel my hernia surgery, that had been scheduled for last week, on Monday 13th. I was still not well, coughing, feel lousy, my mouth broken out all in ulcers, and I knew there was NO WAY they would do surgery on me if I was still that ill. So, I called, postponed it, and then called my doctors office.

I let them know this was now the 3rd round of antibiotics, I was not much better, thus where do we go from here? So, he had me come in the next day to make sure I did not have the flu, strep, etc. In fact, I even went at his request and had a chest X-ray at the hospital. 

Anyway, he sent me home with another antibiotic, a Z-Pak. I was familiar with that one, as I had been prescribed it on occasion, especially for bronchitis or something that could turn into pneumonia. So, I came home and decided I would rest and let my husband pick up the meds later that day. Well, he comes home with this long story from the pharmacist about how these antibiotics, all in the same family of fluoroquinolones, were under a "black box warning". Now I am good about reading and watching out for medications, but never would it have occurred to me that any type of a "warning" when it came to something such as the "heart". I could see a number other issues, definitely, but not my heart at all.''

So, when Jim comes home, with this piece of paper from the pharmacist, stating the pharmacist said due to my heart problems, the heart attacks and then I have a slight "extra" beat that happens, that these particular types of antibiotics are NOT ONLY supposed to be watched for someone that has NeVER had heart issues (these meds have a very slight chance of causing heart attacks or sudden death due to a QL in the heart rhythm "(QT) arrhythmia" EVEN in those who HAD NO prior heart issues. Well, at first I was upset at the pharmacist, because here I am still ill, without an antibiotic, so my husband even goes to the pharmacy to find out exactly what the problem was. In the meantime I "googled" these antibiotics. Sure enough, there is article after article.... and in the "drug" sites, and so on... if you look any of these up it plainly states that you should NOT take these medications BACK TO BACK, without about 48 to really more like 72 hours after the one before. So, in other words, from the 1st round of Levaquin to the 2nd antibiotic Avelox, there should have been three days between them. Then that is why when this 3rd one comes in the pharmacist is wanting to find out how long it had been between the last "Avelox" and now this new one, which is the Z-Pak? At that time, since this was like Tuesday morning, I had not taken one Sunday or Monday. I did that because I figured he would call something else in; plus if this one was NOT working, why keep taking it? So, on "Tuesday" morning technically that would have been about maybe 32 hours. I actually had taken one pill about 11:00 pm Sunday night, because I knew I could NOT take one before the surgery that morning, so I took it late in the night. So, between Sunday at midnight, until Tuesday afternoon when this got called in had been 32 hours or so. So, Jim comes home, no antibiotics yet, and then the explanation as to why I could not take then until probably Thursday, which would be about 72 hours between the last one and the new one. 

Now that I've told you in "detail" my own predicament, this is what I find out from the pharmacist "being so adamant, and not wanting to give me that prescription until he called my doctor to get an "okay" for me to have this medication so closely together after the other two. Then there is the case that my doctor prescribed not only one, but a total of 3 of these medications without telling me that I needed to "allow" at least 48-72 hours between them and why that was so important. 

At first, I was "mad" at the pharmacist. He was given a prescription for antibiotics, that the doctor prescribed. So, at first my thing was "why is he again, "interfering" in what my doctor wants me to do? Secondly, why did he not just fill it, and give me paperwork (he did give Jim a printout about the warning) & put me a note on their to either call my doctor BEFORE starting this or allow 48 to 72 hours (for me more like 72 hours since I had already been on 2 of these back to back). Thirdly, why had the pharmacist NOT already called the doctor and reminded him about the "black box" warning, and that I was a patient that had had MI, & that I also had an "extra" beat, thus then he could have asked the doctor if it was okay to fill this, give the patient the information & ask her to wait until a full 72 hours were up BEFORE me beginning the "Azithromycin"?

On the other side of the "tracks" so to speak... WHY did my doctor NOT warn me about this, and let me know I needed to wait 48 to 72 hours BEFORE the very first antibiotic, which was the Levaquin, and then the 2nd medication, the Avelox, (moxifloxican)? In fact the doctor had me come in and see him, between the 2nd and 3rd antibiotics. Since I was still ill, and seemed to have an infection that was not wanting to go away, I have to wonder again why he did not get "red flags" all over my "electronic chart" about the black box warnings and taking this group of medications too closely together, without any waiting time in between? Plus and I am still researching this one, usually "Avelox" is given AFTER every other antibiotic has NOT worked. From what I read in one place, it is the strongest before having to go into the hospital for IV antibiotics.

So, here we have TWO situations. One, my pharmacist is doing his job basically, and erring on the side of caution. Even though it means more or less going over the doctors head, he was very concerned about all of this for two reasons. First of all, these medications, fluoroquinolones, carry this warning for EVERYONE. Whether you have had a heart attack, or heart problems in the past, OR even if you have NEVER had any type of heart problems, allowing no "rest" time between them can cause heart problems anyway. Now it is a minute chance, but it is a fact that is concerning enough to have a warning on it. So, doctors should have caught that right away. Then he could have informed me of the issues, I could have just picked up the script, waited until Thursday and began the medication. Also, it should have been NOTED with a "FLAG", in my chart, that if I have to have any of these back to back, to make sure I am told to leave 48-72 hours between them. No harm, "no foul"... as far as I would have been concerned. 

That would have stopped the "buck" right there. Then if the pharmacist questioned it, I would have been able to tell him I do know about the warnings, and I not going to take these as instructed by my physician as far as the waiting period.

So, WHY did my DOCTOR, who has been seeing me since about the first day he opened his practice here NOT catch this warning? Why was it NOT flagged in my chart? I realize it was probably the first time it took 3 rounds of antibiotics to get over the chest infection, sinus whatever, but if that "warning" had been in place, even I could have asked him about "waiting" the time between them. 

Now, WHY did the pharmacist NOT JUST CALL my DOCTOR"S office and inquire about this? If he was "flagged" at the very first of trying to fill it, why go any further without calling my doctor? 

That also would have caused a great deal less "stress" on all parties involved. Especially myself, the patient. Even AFTER we asked the pharmacist to call the doctor, and he did call him; BUT after telling my doctor about the issue, my doctors tells him to "keep me on" the Avelox! Well, that was fine and dandy, BUT I only had ONE PILL LEFT! I was prescribed 7 days worth and had taken 6. I was told NOT to take the last pill by my doctor, and start the new one instead. So, now the doctor NOR the pharmacist take into consideration there is no "refill" on this, and basically i am OUT of them. I call to find out what was happening (now Jim had spoken with the pharmacist very EARLY that Morning and he promised he was getting on it right away)... so when I call that AFTERNOON fairly late at that to the pharmacy; for one I thought no one would ever answer, and 2 after I FINALLY talked with one of the assistants in the pharmacy, come to find out the pharmacist had NOT EVEN CALLED the doctor YET!!!! Here I am ON HOLD for at least 15 MINUTES while the pharmacist is then calling the doctor!!!!!

Of course, finding out that NOTHING, absolutely NOTHING had been done to resolve this was just fuel on the fire! I'm now stuck, still ill, and still needing antibiotics, BUT the very people that could resolve this did nothing. Finally, my husband gets on the phone with the pharmacist. He asks him about the prescription for the "Z-Pak" or Azithromycin, if it can be filled? Well of course it can be filled. It was send to BE FILLED! So, I told him to ask the pharmacist to fill it, we would not pick it up until the following day (which was Wednesday) & I would NOT take any of it until Thursday. Problem Solved! I do not take these too close together, I still get the antibiotics. So, that is exactly what happens. The scripts are all picked up Wednesday afternoon. Thursday morning arrives, I take my medications, the antibiotic, and all is safe on the home front.

Now WHY did ALL of that DRAMA have to play out over a PRESCRIPTION? Everywhere "other than Jim and I" there was a communication breakdown. It was apparent that the pharmacist never "thought" to call the doctor until we suggested it. Then it was more apparent that neither of them gave thought to the fact I only had ONE pill left of the middle one, the AVELOX. Moreover, WHY did my doctor NOT KNOW or do anything if there was THAT TYPE OF WARNING?!! ON these medications? 

I was already curious to know why an "antibiotic" would have these types of "side effects"? It just did not seem "logical".  I guess my thought to antibiotics is that either you have an "allergic reaction" to them, or they just rip your stomach up and make you nauseated, and then they need to be used cautiously due to these viral bugs out there now that can "go around" the antibiotics and truly cause you to build up a "resistance", thus they need to be used wisely and cautiously.

So, I go in and do a "google" search first for the "Avelox" in itself. Well, the VERY first page I pick, the URL here:

and starts out like this..."PRECAUTIONS: Before taking moxifloxacin, tell your doctor or pharmacist if you are allergic to it; or to other quinolone antibiotics (e.g., ciprofloxacin,levofloxacin); or if you have any other allergies. This product may contain inactive ingredients, which can cause allergic reactions or other problems. Talk to your pharmacist for more details.Before using this medication, tell your doctor or pharmacist your medical history, especially of: diabetes, heart problems (e.g., recent heart attack), joint/tendon problems (e.g., tendonitis,bursitis), liver disease, myasthenia gravis, nervous system disorder (e.g.,peripheral neuropathy), seizure disorder, conditions that increase your risk of seizures (e.g., brain/head injury, brain tumors, cerebral atherosclerosis).Moxifloxacin may cause a condition that affects the heart rhythm (QT prolongation)" (this excerpt above from from the link below:

Then I go do another search on Azithromycin...

 ([Posted 03/12/2013] ISSUE: FDA is warning the public that azithromycin (Zithromax or Zmax) can cause abnormal changes in the electrical activity of the heart that may lead to a potentially fatal irregular heart rhythm. Patients at particular risk for developing this condition include those with known risk factors such as existing QT interval prolongation, low blood levels of potassium or magnesium, a slower than normal heart rate, or use of certain drugs used to treat abnormal heart rhythms, or arrhythmias. FDA has issued a Drug Safety Communication today as a result of our review of a study by medical researchers as well as another study by a manufacturer of the drug that assessed the potential for azithromycin to cause abnormal changes in the electrical activity of the heart. (excerpt from  the rest cont. on the link below...

This is what I find

Of course then I do a search for Levaquin (by the way which I have been prescribed several times over the years due to infections...

(You should not use Levaquin if you are allergic to levofloxacin or other fluoroquinolones (ciprofloxacin, gemifloxacin, moxifloxacin, ofloxacin, norfloxacin, and others).You may not be able to use Levaquin if you have a muscle disorder. Tell your doctor if you have a history of myasthenia gravis.To make sure Levaquin is safe for you, tell your doctor if you have:a heart rhythm disorder, especially if you take medication to treat it;a personal or family history of Long QT syndrome;tendon problems, arthritis or other joint problems (especially in children);) (excerpt from you can continue reading from the link below....

Now I DIDI KNOW about the potential for the "achilles" tear or rupture, I had read that. Plus of course some of the other side effects from most any type of antibiotic... stomach upset, and of course any type of allergic reaction.

BUT, this "black box warning" is fairly new on fluoroquinolones. Here is a bit about these types of antibiotics. I knew they were considered in a different "class" of antibiotics, but this is something any of us, whether "autoimmune" compromised or not:

This is a link from the FDA about these medications. I found several others, but rather than tell in detail about these "very new" types of antibiotics to come out, you find MORE on the "tendon ruptures" than you do about the heart issues... so here is the link:

Now that your head is spinning and you feel overwhelmed with information, I just wanted all of you to know this. I realize MANY of us, especially with Autoimmune Arthritic and/or other Autoimmune Illnesses are "prone" to having infections. Doctors usually treat us with more aggressive treatments due to the fact as my doctor told me last week, we can go from up and having a bit a lung infection, throat etc... to ICU and extremely ill within hours due to our immune system! So doctors are caught in a quandary, as to what to do.

I don't blame them, as far as being in this place of do you "err" on the side of giving the antibiotics, especially with a patient, that is "immune compromised", possibly like myself, they cannot take "penicillin" based medications because in one way or the other we are allergic to them. Yet, when you have someone who has already gone through one round of medication, and they are not much better, if at all, you have to move onto something else, stronger, different and so forth. Well, now the problems lie. If you have a "healthy"(I mean as in heart healthy) patient, with no prior MI's, arrhythmia's, & knowing there is a definite "warning" that these types of  fluoroquinolone antibiotics in studies have shown to have a very, very minute chance of causing issues, then as most doctors probably would, they prefer to give the antibiotic for the 7 days, because the other might mean a patient in ICU, much more ill, due to not getting the meds immediately. Then of course, and I knew about the "tendon" tears. I had read that several years back I believe about Levaquin. I had been given Levaquin due to all of my knee replacements and surgeries where there is a higher risk of infection. Thus it was one that was used on me; it needed to be, so I was "informed", and took the antibiotics, without giving it much thought from there. At that time this "other" warning about the heart problems has not come to light as far as a "black box warning".

As I was "re-reading" over parts of these sites this morning, making sure I gave links where the information was, and to make sure you, the patients that may come in contact with these types of antibiotics have what you need in order to either research more, and/or ask your doctor if you are put on any of these types of medications. Whether "heart issues" or not, you may feel you want the entire picture before jumping into the lake, in other words.

I am not sure WHY I tend to RUN INTO the strangest issues medically!? It seems if something odd, unusual, rare, and whatever else you want to call it, you can bet I've either been through it, or have a good grasp upon what is happening when someone mentions certain events they come in contact with.

Okay, long enough... and of course I want to write about other things, so I end this with....

WITH ANY medication, ESPECIALLY something NEW to YOU..


Don't RELY on the Doctor, Pharmacist, or health professional to give you "accurate" information.

IF you SEE something that is ODD, or something you "feel" could be harmful to you whether the meds itself, or maybe it might not "mix well" with some other medication you take, then question iT!

Yes, they are all "professionals", BUT they are HUMAN, and with our FAST moving technology in fields such as MEDICINE changes almost DAILY!!!! So, it could be your doctor has not be informed, yet you see it. Copy it, print it and take it in with you, if you are concerned.....

My hope is this helps others to be able to deal with these issues, if they come up, and have their own "ducks" all in a row.

Friday, September 24, 2010

Series of Videos From the American Pain Foundation - These are very beneficial

Once again the American Pain Foundation has come through with great information for all of us suffering from chronic pain. This series of videos goes through how medications effect our lives, the positive aspects of controlling pain, from medications to the use of implantable pain devices, all of these are full of informative and good information for pain patients, spouses, caretakers, family and friends. I urge you to take a look and listen to a few of them. I have already listened to numbers 5 and 6, about the implantable devices, since I am facing having a pain pump put in very soon.

I already learned a great deal more, than I already knew from my own research. :) Rhia

Thursday, July 2, 2009

Critical, URGENT, FDA trying to BAN Script Pain Meds! Please sign petitions!

I wanted to update all of you in regard to what the FDA is trying to potentially do, which would be a nightmare to all of us that suffer Chronic Pain, along with our Chronic Illnesses. The one good thing is that the House and Senate did pass the "Pain Patients Bill of Rights". :) So, I applaud Congress for that one! :)

But, on not so good of a note, and many of you may already have seen this in the news... the FDA is potentially trying to BAN extended release narcotic pain medications! I am venturing to say, that there are many here with the group that suffers just as I do, from horrible Chronic, sometimes even Daily, pain. This would be a horrid situation for us, for our families, our jobs, our friends and our quality of life. When I finally found my current pain doctor, I was overjoyed! Not only was he ready to help me with my pain medications, he has so far been excellent regarding keeping my pain under control. For that I am blessed.

As anyone with Chronic Pain knows, many times our prescription pain medications are what keep us having a full life, having happy spouses, happy kids, keeping our jobs, and making our lives as normal as possible. Without them, most of us would be in the bed, on the sofa, rendered not able to do anything. I know for me it was the difference as black and white. Within 2 days of beginning my medications a year ago, I felt better than I had in many, many years... probably 7 or more.

Now the FDA is trying to put a BAN on some narcotic pain medications and if you have seen they are also possibly taking Tylenol at higher doses and putting it as a prescription, and then lowering the doses in the over the counter acetaminophen.

This is an urgent, critical matter and I have two petitions that are directly going to the FDA, The House, The Senate, and the President, as well as my own House Rep, and Senators.

Here are the URL's about both petitions, along with the American Pain Foundations information and enlightenment on the entire thing.

I urge you to read this information when you can, and if you feel moved to sign the petitions I would be most appreciative. Anyone knowing what Chronic Pain is like, knows this would be disastrous to all of us.

Now, a little about my situation. I was having issues with high blood sugar levels, and had been having higher than normal levels from the past 3 or 4 glucose blood tests I had done. My PCP did a glucose tolerance test, and it showed "normal" but still I am seeing spikes in my levels when I do the check at home. So, I still am possibly sitting at the "pre-diabetic" position, but for now I am just taking it on my own, and keeping an eye out.

Also, my PCP, due to all of my blood work, now confirms, I do have Lupus. I also have Sjogren's and Raynaud's, to add insult to injury. I had a very horrible flare, that is still kind of going on, that caused me to not just have cracks in the corners of my mouth, but they got infected, thus I had been on antibiotics again for two rounds. My bruising is horrible! I look like I have been beat from my neck to my toes with a ball bat! Plus some of it is not just bruising, but petechia, which is kind of like tiny blood vessels rupturing and I have what looks like flat blood blisters everywhere.

My PCP finally decided my best bet in finding out what potentially is causing this is sending me to a hematologist. In fact my appointment is this afternoon. I DO NOT look forward to yet another doctor, also having to go to Dallas, but luckily he is in the same building that my pain specialist is in! For that I am blessed! I hope that he has a good bedside manner, is not just test happy, and can find some reason for the horrible bruising and petechia, and hopefully how we can get rid of it. With the Summer here and HOT weather, I am totally embarrassed to go anywhere. People just stare at my arms and legs, and I have to wonder if they think I am have horrible contagious disease, or if my husband is beating me....LOL... I found some "cover up" cream for my legs, which helps some, plus I have been using the self-tanning cream. Those both help a little on my legs. The darker my skin is, the bruising then is not as noticeable.

I am now on Methotrexate. My PCP and I had discussed it the past couple of visits I had with him, especially since I am having flares frequently, and it seems I just have a hard time shaking them. So, I am now on Plaquenil, Methotrexate, and 5mg. of Prednisone.

My husband Jim, has also been having one heck of a time with his lower back pain. We are now working on getting him some possible financial assistance so he can go to a new pain specialist over in Waxahachie. Jim has no insurance, he does not qualify for state assistance, due to the fact here in TX, the ONLY way to get Medicaid is to be pregnant, or have kids under 16, etc.

So we have a county program for very low income people that helps with medical bills. Most counties have what they call an Indigent Health Care Program, for those who cannot qualify for any other type of assistance. We hope, from what the PCP says, if we can get the financial assistance to see this Doctor, he would possibly due the injections in Jim's back. So keep him and myself both in your thoughts over the next weeks.

It is not just HOT here, but way higher than HOT!! We have had little reprieve from triple digit temps, along with a high humidity and dew point levels, that make it seem 110 degrees plus now for at least 10-12 days. It is horrible.

As I finish this up, I want to wish all of you a safe, Happy, and Beautiful 4th of July weekend! :)

As we have seen so much "bad" news from the situation in Iran, to No. Korea and their stunts, then the loss of several celebrities this week, including Farah Fawcett who finally lost her battle with anal cancer. She was an incredibly strong and brave woman that fought it since 2006. If you saw her special on TV I am sure you were touched by her story also. If you did not see it, I think they are planning to air it again... so if you can catch it, it is an incredible story.

OF course, we lost Michael Jackson, Billy Mays (Mr. Oxyclean himself), and several other "famous" people over the past 7 to 10 days.

Here is the information below about the URL's for the American Pain Foundation, and for the petitions....

I urge you to go to this URL and add your name to the petition. Actually I have one on and one on Care2! This is an extremely serious situation and if you have kept up with the news you have already seen they are considering making changes to all types of over the counter and prescription pain medications!

For anyone with horrid Chronic Pain and Illness this would be a night terror you live in forever! This could mean you not being able to get your proper pain medications, it means putting a strain on our good pain management specialists, and potentially ruin Chronic Pain Patients quality of life, possibly lose their jobs due to the pain, harm family life and relationships, and make many of us have no quality of life.

PLease see these two URLs:

For more information about this situation and a better understanding of what the FDA is trying to do is on the American Pain Foundations Website. Their URL is:

The Pain Foundations website is one with the latest information on all types of things related to Chronic Pain and Illness. You will find it very informative for everything from the latest research, medications, government related issues, possible bills going through the Senate and House, plus so much more.

Have a wonderful July 4th, be safe... and I hope pain free....

by the way... those of you that have been on or are on the Methotrexate, how long did it take for you to notice a difference, if at all? What kinds of side effects, if any did you experience? What is your dosage? Are you or did you take Prednisone with it, or by itself? Plus if you think you know something about the medications, or anything else in regard to the Lupus, please post here or email me.

By the way, for patients with a New Lupus diagnosis, or if you have a family member that may not understand just how any of the autoimmune illnesses effect us... I just read a wonderful book. It is geared for someone newly diagnosed, and the first year of having Lupus. Even though I have read an enormous amount of information on line, etc... this book really helped me learn several things I did not know. It is written by a woman that spent between 10 and 15 years of doctor after doctor, medication after medication, test after test, diagnosis after diagnosis... before she found a doctor who figured it out.

The name of the book is:

"The First year of Lupus" (A Patient-Expert Walks you Through Everything you need to do and Learn).
The authors name is Nancy C. Hanger.

She also goes into things such as overlapping autoimmune issues, from Sjogrens' to Fibromyalgia.

I close for now in wishing everyone is healthy and having a wonderful Summer...

My thoughts are with each of you.... Rhia

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