blue needs your knowledge of methotrexate and enberol(sp?)

[Glojer]

THANK YOU SO MUCH T.K.! The info on the RA meds was great. I will be going on the 14th to my rhuemy and he is going to fill me in on all the alternatives to MTX and Plaquenil since I have had to go cold turkey off both of them. Boy do my joints and muscles hurt, but I am determined to make it till the 14th with nothing so I can research and start anew. Kind of like a detox. I don't have to research now you did it for me! I know this was on Blues question but your info is also helpful to me, what a gal!!!

You know how much we need laughter and sometimes on this board I get such a laugh from the things we say and do. This time it was the butt cooties comment, again thanks T.K. a laugh in the morning is always great.

Love ya!
Glojer

[tkgoodspirit]

Hey Blue, Hey Glojer!

Glojer, I'm so happy I could be able to help you! LOL Helping folks has always been a kind of "self healing" for me. I guess that's why I enjoyed waitressing for so long! I also worked in Nursing Home for many years. Matter of fact, it was my very first job, and I did it throughout my highschool years. I stayed at that job for 4 years until I joined the Army. Maybe that's why I didn't "fit" in the Army. My job was dealing with "Intelligence". I wasn't helping anyone, I guess, except for our government! LOL But not really, I was just an information gatherer, kinda like a little squirrel gathering nuts.

Anyway, back to the RA topic....from what I've read, folks with RA simply cannot get around the use of steroids like Prednisone to help you get relief from the intense inflammation. I know that the word "steroids" has such a negative reaction, but IMO, and from what the research indicates, Prednisone can be a great help to you as long as it's used correctly. Don't be afraid to let it help you. Work with your doctor so that you aren't using it long term. Expect the side effects that go along with using steroids, but let it help you. I don't believe you can go through life having RA without the help of some medications that are going to cause you some discomfort. Reducing the inflammation and trying to slow the progression of this disease is going to be a critical part of your living with RA. Same with Lupus. I'm asking you, both of you, to do whatever you need to do so that you can live as comfortable as possible. I know you said, Blue, that you can't take anti-inflammatory meds. The thing is that ALL of these medications are an anti-inflammatory based med, that's the main component of the treatment for RA. Though these meds, especially the injections or the IV type meds, hopefully will not cause you as much discomfort as the oral meds. Anti-inflammatory meds used for RA are different than the ones given for typical arthritis. They are absorbed differently than through your digestive system. That makes a big 'ol difference in how your body will react to these meds. See if you can talk to other folks who have used Prednisone, their are many support groups out there for RA. Visit the Arthritis board here. I thought for sure there was an RA board, but I see there isn't. I believe that RA is of course, arthritis, but it is entirely different that the usual form of arthritis. RA affects your joints by way of your immune system, regular arthritis does not. I'm actually suprised there isn't an RA board here, since there is a Lupus and an MS board. I know that Prednisone is typically used to "jumpstart" the anti-inflammatory process, and it typically isn't used long term. But it is very effective to help as a precurser to all these other forms of treatment. It kinda get's your system "ready" for the long term treatment methods by reducing inflammation quicker so that when you are first introduced to these RA treatments, your body is more prepared to react to the treatment. I know my friend was first put on Prednisone when she was dx'd with RA. She didn't like it, the side effects are pretty intense IF you aren't careful with yourself. She wasn't on it for long, but she did say that above all the side effects, that it did help relieve the pain from the inflammation. So if your doctor wants to introduce Prednisone as treatment, think about it carefully. Find out how long you will be on it, and get your body ready for the side effects, which is typically weight gain and swelling in your face, called "moon face". Get your diet in order, and take it easy. I worked with a girl who would be on steriods because she had pretty bad tendenitis in both her arms (from waitressing!). She would use the steriods for a short time when the tendenitis flared up, and her face would swell just a bit, but other than that, she was able to work because the benefits out weighed the side effects. I also know, Glojer, that Prednisone is typically given to Lupus patients. I guess, I'm just asking that you have an open mind when it comes to Prednisone, it has such a bad reputation, but it can be a big help to make you feel better.

So, I'm stepping off my soap box now! LOL I truly hope that whatever treatment you use that it offers you enough relief that you feel comfortable enough to live a full happy life, as pain free as possible. And Glojer, I'm glad my "cootie" remark made you laugh! Hey, I just imagine all the parts of OTHER people's "parts" that have gone before where my "part" is about to be goin'! LOL Even when I had PT this last month and I had to get up on the table to get my massage, if I wasn't sure they had wiped down the table, I took a towel and got the anti-bacterial spray and cleaned off the table so I was sure I would come in contact with as few cooties as possible! You know us "sickies" have to be careful about other people's cooties! If I go on a trip somewhere, I ALWAYS come home and get sick. When I went to Texas this last Christmas to see my son and grandson (aka Poopie Face), I suffered so bad when we got home. The two day drive was awful on the way back home. And it was only two days after I got home that I picked up a nasty viral infection, had to let it run it's course. Same thing happened when I flew up to Iowa to be with my mom when she was dying. The doc said that airplane "air" is the worst, it contains all the "ickies" that just recirculate throughout the airplane and we breathe it in! So the doc said that I must have touched something in a public bathroom or any public place where germs run wild on my way back from Texas. And as you both know, give our immune systems, we catch cooties easily! So I guess if I ever travel again, hopefully I'll be able to travel again, I'll be like Michael Jackson, wearing a mask and gloves and using an umbrella! I think I'll wear regular pants instead of pajama pants though! LOL ***wink wink***

Glojer, may I ask why you are coming off the Mex and the Plaquenil? Are they not working for you? Is there a course of withdrawl symptoms from quitting those meds? CAN you quit them cold turkey? What causes the w/d symptoms from these types of meds? I know about what causes w/d symptoms from narcotics, but am in unfamiliar territory regarding the meds for RA and Lupus. I do notice that a lot of meds developed for RA are being administered to Lupus patients. Those two conditions seem very similar, tho Lupus seems to mess with the major organs more, and RA seems to mess with the whole skelatal system. And it seems that FM and RA are similar when it comes to what is causing the immune system to go haywire, though RA causes the overgrowth of tissues which causes the inflammation, but the base of these two illnesses seem to be the same. I can certainly understand how someone would have FM first and then develop RA later, same with Lupus. Glojer? Do you also have FM? I think I remember you saying you did. You had Lupus first or FM first? I've noticed that it is usually common for a Lupus patient to have Lupus THEN develop FM, same with MS, people with MS will later develop FM. It's interesting the commonalities these four conditions have isn't it? All of these conditions seem to have the same anomalies within the immune system. I can be grateful to "just have" FM, because as miserable as it is and though having FM seems to interfear with most every other part of the body's system, FM isn't as debilitating as RA, Lupus, or MS. We FMights are not losing the funciton of our joints because of the blood flowing through is "poisoned" with the elevated Rh factor, we don't have to worry about our kidneys failing because of Lupus being a "systemic" condition that literally "attacks" the organs we depend on to sustain us, or losing control of our motor skills because of the damage to the brain that MS causes. Yes, we suffer with all the complexaties of FM, and are frustrated because there is no exact treatment for us, we use "hand me downs" for treatment, but our organs are intact, our joints are not swollen so bad because our body's immunes system thinks there is an "intruder" when there isn't so it turns on itself, and our brain isn't affected to the point that when we tell our legs to move, they ignore what they are being told. I'm certainly not minimizing the pain of any of these conditions, I believe that the pain of each of these conditions is bad enough to make you scream. Personally, and this is just how I feel, if I have to live with FM and CFS as far as autoimmune disorders, I'll take those anyday over having Lupus, RA or MS. And to be one of those people who have one of these conditions along WITH FM, God love ya!

However, we are ALL warriors, with our own personal battle, and I know that all of us here have within us the power and the will to fight on. Though we will suffer periods of defeat, all good warriors do, we will get up and fight again. We all have that within us, we may not realize it, but we do!

Love you both,
tk

Hey, I'm going to post that info about Humira and the other things I promised you, Blue, in the next post. K?

[bluelakelady]

butt cooties, you crack me up, pun intended. i am a patient woman. take your time. i have had a push me chair for 7 years. i never use it. i used it back then. had to. these days it grows cobwebs and such. i think instead of a wheelchair i want a lark when i am old, old, old and need the help. i can picture it now, giggle.
hey glojer! always happy to see my need serve another. glad you wanted the info too. that way teekers can help us both and who know who else here.
love ya both,
bluelakelady

[tkgoodspirit]

Originally Posted by bluelakelady

butt cooties, you crack me up, pun intended. i am a patient woman. take your time. i have had a push me chair for 7 years. i never use it. i used it back then. had to. these days it grows cobwebs and such. i think instead of a wheelchair i want a lark when i am old, old, old and need the help. i can picture it now, giggle.
hey glojer! always happy to see my need serve another. glad you wanted the info too. that way teekers can help us both and who know who else here.
love ya both,
bluelakelady

Hey Blue,

I'm wanted to catch you while you are online. I'm working on getting that info into a reply right now!

[tkgoodspirit]

Okay, Blue, here is the info about Humira, and at the end, I'll list the "Self-care" remedies rated most popular by RA patients.

First let me say, I found that Humira is very similar to Remicade as far as it's components. Humira is administered the same way Enbrel is, tho, Humira does not need to be injected as often as Enbrel. I also found a "warning" by Abbott Labs, the manufacturerer of Humira in regards to an adverse reaction with a certain medication that is used to sometimes treat RA and Cancer patients. I will also list info about that interaction. Though the other RA treatments like Remicade and Enbrel boasted that they work well with other meds. This is the only treatment I found that adversely interacts with this one particular medication. Although, like many medications, there are always precautions and drug interactions that are listed when you recieve your prescription. We all know that we should read that paper, tho a lot of us don't (raising my hand! ). The one "precaution" that kept popping up referred to anaphalaxic as one of those precautions. We also know that you should talk in depth to your doctor about ALL possible reactions and side effects you may experience with any of these treatments.

HUMIRA is a biologic disease-modifying medicine that interrupts the inflammation process and helps slow the progression of rheumatoid arthritis (RA). The active ingredient resembles an antibody that normally occurs in your body, so it helps your body to fight RA the way it would if it could. HUMIRA can also be taken with pain medications and other disease modifying drugs. It resembles antibodies normally found in the body. As HUMIRA binds and blocks the activity of TNF-a, it reduces the signs and symptoms of RA and slows the progression of structural joint damage caused by the disease.

How is HUMIRA different from other medications that treat RA?
HUMIRA is a biologic disease-modifying antirheumatic drug, also called a DMARD. Biologic DMARDS (DMARDS were mentioned in the first couple of my posts referring to the info of how these treatments work ) are among the most recent RA treatments approved by the FDA and are approved for reducing the signs and symptoms, and slowing the progression of structural damage to the joints caused by RA.

Other biologic DMARDs include Enbrel® and Remicade®. Enbrel is injected once or twice weekly, and Remicade requires a visit to the doctor to administer the medication. HUMIRA is an effective biologic DMARD and was the most widely studied TNF-a antagonist when it was submitted to the FDA.

HUMIRA can be injected by you or a loved one in the convenience of your own home. And, it usually only needs to be taken once every two weeks - giving you more freedom to live your life without having to always think about taking your medication.

The most common side effects of HUMIRA are:
injection site reactions
upper respiratory and sinus infections
headache
rash
injection site pain

Anakinra
A substance that is used to treat rheumatoid arthritis, and is being studied in the treatment of cancer. Anakinra blocks the action of interleukin 1 (IL-1). It belongs to the family of drugs called interleukin receptor antagonists. Also called Kinaret®. (interleukin is one of the protiens referred to in my thread about FM being classified as a disease. This protien is one of the protiens that, when elevated, "poison" your immune system, which regarding FM, damages the neurotransmitters that are meant to block pain. Often when your doc orders a CBC to check your blood, there is a section in the test that reads protien levels, it is normal to see elevated protien levels in FM, RA, Lupus and MS patients )

Use with Anakinra This is taken from the Precautions and Drug Interactions sections of the information literature that is packaged with Humira.
Serious infections were seen in clinical studies with concurrent use of nakinra
(an interleukin-1 antagonist) and another TNF-blocking agent, with no added
benefit. Because of the nature of the adverse events seen with this combination therapy, similar toxicities may also result from combination of anakinra and other TNF blocking agents. Therefore, the combination of HUMIRA and anakinra is not recommended (see PRECAUTIONS, Drug Interactions). Remember, I said that reports of anaphylaxis was found in reference to the list of severe side effects of any of these treatments. Again, you know to speak in depth to your doctor regarding any of these treatments and their possible side effects. I'm not promoting any particular treatment, I am merely offering you information that is available to the public, your doctor knows you best and will know which is best for you.

Okay, enough of the technical stuff, here comes the info from a group of your "peers". LOL Sounds like a game show! Here's the top rated self treatments for RA, rated by other RA patients. There is only one list of preferred prescription meds by other RA patients.

The numbers next to the "treatment" are the rating value from 1 thru 10. 10 of course being the best.

Self-care Treatments: Top 3 Remedies
Laughter / Humor Therapy: 10 Blue, I think you've got this one covered!
Patient Education: 9.6 The list of education may not have been approved by board policy, so I'll just say that "self-education" by any means you have available is always a 10!
Hydrothermal Therapy: Sauna / Steam Baths: 9.3

Nutritional Supplements Top 3 Remedies
MSM (Methylsulfonylmethane) 10
Vitamin C (Ascorbic Acid) 10
Multi-Vitamin; Mineral Supplements (combined ratings)

Complementary and Alternative Therapies Top 3 Remedies
Bodywork Therapies: Jaffe-Mellor Technique 8.4 I have NO idea what type of therapy this Jaffe-Mellor Technique is! Anyone know?
Bodywork Therapies: Therapeutic Massage: 7.8
Chiropractic Therapy 6.8

Over-the-counter Medications and Products Top 3 Remedies
Therabath etc. (Paraffin Wax Baths) 9.2
Magnetic Therapy: Pulsed Magnetic Fields (PMF) 8.9
Topical Painkillers: Methyl Salicylate Formulas 8.3

Prescription Medications and Doctor Procedures Top 3 Remedies
Solganal (Aurothioglucose) 9.7
Flexeril etc. (Cyclobenzaprine) 9.7
Methadone etc. (Methadone Hydrochloride) 9.3


AND FINALLY! Here is a list of the most popular RA specific treatments:
Top 10 Remedies for Rheumatoid Arthritis Remedy Name Weighted Rating
(0 = poorest; 10 = best)

Antibiotic Therapy 8.1
Enbrel (Etanercept) 7.2
Remicade (Infliximab) 6.9
Deltasone etc. (Prednisone) 6.8
Plaquenil etc. (Hydroxychloroquine) 6.3
Rheumatrex etc. (Methotrexate) 5.9
Arava (Leflunomide) 5.8
Celebrex (Celecoxib) 5.5
Kineret (Anakinra) 5.2
Azulfidine etc. (Sulfasalazine) 4.2


Okay, there ya go! Keep us posted on how your treatment goes, whichever one you choose. You too Glojer.

Love to you!
tk