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SEASALGAL Posts: 25
10/24/10 8:56 A

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I also like to look at the things that I can enjoy and I do as many pampering things as I can, like warm foot baths, great herbal tea, burning candles and listening to wonderful music. My faith in God also is a huge help keeping me hopeful for the future.
Glad your off the prednisone my Dad (who also had RA) was on that too long and it was not good, although it did keep him pain free. Good luck in your quest for pain free living.
P.S. Massage is a wonderful way to feel better too and it helps with flexability! emoticon

Edited by: SEASALGAL at: 10/24/2010 (09:08)
God be with you on your journey.
Live! Love! Laugh!!!


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ALKATRIOS's Photo ALKATRIOS Posts: 126
10/23/10 12:26 A

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I love your positive attitude! I always say RA has taken many choices out of my life; but there are still choices that I can make. I can choose every morning to try to be positive, I can choose what I eat or drink, I can choose what music I listen to and what I watch on TV, I choose to do "feel good" things. Things that make me laugh and smile and try to keep negative out of my life. (That can sometimes be difficult when you are struggling to walk. I have had RA for 19 years, been around the block with the drugs, The last year and a half my arthritis has been out of control. I have had two replacement surgeries since February, my knee and my shoulder, My hip was done 10 years ago and feels great. I will have my ankle replaced next year. I have just made a decision to take Arava along with my methotrexate injections, plaqunil, and celebrex. I got off prednisone several years ago (A true blessing) I am at the point quality over quantity. I am struggling with stomach issues and awful hair thinning (I finally bought two wigs!) believe it or not that made me feel much better! Good luck with your therapy and keep your chin up...they say THAT is the best medicine! emoticon

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SEASALGAL Posts: 25
8/28/10 10:37 A

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After reading so many blogs where so many people are on expensive (and multiple) drugs I just have to say anyone that has not read the book Arthritis Breakthrough should do themselves a favor and read it I have been on Minocycline (only) for 13 years it was life changing for me I was in so much pain. It is inexpensive and usually well tolerated by the body. I don't have a mild case of RA either, my RA doc said my numbers indicate that I have the most severe type. There is a website for the group that formed to let people know about the antibiotic treatment and it is roadback.org. If you get a mental health website keep looking because there is one with a similar name. I would be happy to answer any questions that anyone has about my experience with this treatment. I also found out that I am wheat sensitive my daughter was in a nutrition class and the doctor stated that many people with arthritis also have food sensitivity and a main culprit is wheat, I went off wheat and noticed a change with in 2 days. I hope that this info helps someone today! emoticon

God be with you on your journey.
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15TOGONAR Posts: 36
8/6/10 3:17 P

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JERIBERI1
Do you take anything for your arthritis?

Edited by: 15TOGONAR at: 8/6/2010 (15:28)
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WRITEITOUT's Photo WRITEITOUT Posts: 87
8/5/10 6:59 P

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Well, each day is a blessing. It may be a day when I have to drag myself out of bed and take pain meds (today), but I am alive and I have my loving family, my sweet little animals to cozy up to and keep me moving, and tomorrow to look foward to. The sun is out and the breeze is blowing just right. My birthday is this Saturday and I am going to stay in POSITIVE MODE!!! No Pain tomorrow!! emoticon




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GAINEDAGAIN's Photo GAINEDAGAIN Posts: 72
8/3/10 5:34 P

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You woman are all so amazing. I am just beginning my journey with RA and find everything very scary and confusing. But with most of the replies on this forum, I have learned a lot and don't feel quite as scared. I go to my Rhuematologist on Thursday, and reading your replies gives me a heads up on some of the meds I'm sure he is going to talk with me about.

Have a great day everyone. (I am so thankful for this team). :-)

Kathy

Edited by: GAINEDAGAIN at: 8/3/2010 (17:35)
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WRITEITOUT's Photo WRITEITOUT Posts: 87
8/2/10 9:06 P

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I had a very relaxing vaca on Kauai. So beautiful. I felt great too. The day before our flight home I started flaring or I thought I was. When I arrived home I decided to really get into positive mode! I also began taking Resveratrol, a bio-active extract.
I don't want to "jump the gun" but I feel Good. I mean more energy, less pain, less moodiness.. I am still taking my other meds 5mgs prednisone, plaquenil, topomax, neurontin and bp .. Of course could be the relaxing vacation that gave me the sudden boost of healthiness.. : ) I am so hesitant to start another medication now....



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MJMAINE's Photo MJMAINE Posts: 35
7/18/10 7:34 A

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That's really awful about the Arava. I've been on it for 3-4 years with no problems. I was taking MTX - I've tried injections and pills. It made me nauseous, so I had to take another med (forget the name)the day before, the day of and the day after taking MTX. Plus I was on leucovorin to help with the red blood cells. It was too much.
So, now I'm on Arava, Humira once every 2 weeks and prednisone. The prednisone is only 5 mg and I've been on it for many years with no side effects. I feel very lucky that I'm able to live my life with little disruptions, despite the fact I've had RA for over 30 years, since my late 20's.
I know it seems hard, but don't give up. I took 1 medication for 3 years when I became allergic to it. I lost 20 pounds - not good when you only weigh 134. You just have to find that right combination. There are new meds being discovered all the time. Surely 1 of them will work for you.

WRITEITOUT's Photo WRITEITOUT Posts: 87
7/14/10 9:59 P

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Thank you for your hopeful thoughts.. It was the ARAVA and what a bummer because it was working so swimmingly. Oh my it hit my so badly in the gut. I guess it will take a long while to leave my system huh? Imodium doesn't make a dent! I'm feeling better and I can hold down small amounts of food now. I know I will find the right med... : ) It is just I have a trip to Kauai next week and I was hoping to be feeling much better than this... Well I am going to one of the most beautiful places in the United States.. I will be able to relax and soak it all in..:o )I am not going to start a new med before I leave... emoticon



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ANGEL1066's Photo ANGEL1066 SparkPoints: (0)
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7/12/10 9:36 P

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emoticon So sorry! But lets hope it is just a bug - not everything is about meds. However, negative reacts can happen at any time, sometimes right away, sometimes much later into the treatment.

"Mountains DO move...One stone at a time." ~Rick Beneteau
Do not let what you cannot do interfere with what you can do. - John Wooden, Hall of Fame college basketball coach
With exercise, doing some is always better than doing none. - Spark article
MAKE THE BEST FOOD CHOICES YOU CAN TODAY - and then, try it again tomorrow!- Dr. John La Puma, M.D.


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WRITEITOUT's Photo WRITEITOUT Posts: 87
7/12/10 12:17 P

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Well I thought I was home free.. Just this past weekend I started with "diarrhea" and I can't hold down solid food. Today is day three. I was hoping it was just a bug, but I am afraid it is the ARAVA. Does it generally take this long? I had been on it for 14 days when I started the symptoms. I am waiting to hear back from my doctor.
Ugh..



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ANGEL1066's Photo ANGEL1066 SparkPoints: (0)
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7/7/10 4:34 P

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GLAD TO HEAR YOU ARE FEELING BETTER & TOLERATING THE DRUGS WELL SO FAR. I DO HOPE THIS CONTINUES TO WORK FOR YOU. I WENT INTO REMISSION FOR ALMOST 20 YEARS ON PLAQUENIL ALONE, UNTIL THE BIRTH OF MY SON. MAY YOU DO AT LEAST AS WELL. GOD BLESS!

"Mountains DO move...One stone at a time." ~Rick Beneteau
Do not let what you cannot do interfere with what you can do. - John Wooden, Hall of Fame college basketball coach
With exercise, doing some is always better than doing none. - Spark article
MAKE THE BEST FOOD CHOICES YOU CAN TODAY - and then, try it again tomorrow!- Dr. John La Puma, M.D.


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WRITEITOUT's Photo WRITEITOUT Posts: 87
7/7/10 3:44 P

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Been on the ARAVA (with Plaquenil and prednisone) for just about 2 weeks and I am feeling better... : ) I am not having any problems with it. I may have some loss of hair starting... I hope it doesn't get any worse than it is now.. Well, time will tell, 2 weeks is a short period : ) emoticon



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WRITEITOUT's Photo WRITEITOUT Posts: 87
7/1/10 11:50 A

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It has been a while, but I have finally decided to start ARAVA. Now I wait and see. It is day 2 and I have so far I have no complaints..
Thank goodness my migraines have stopped... : )
I love the weather we are having. I am going to enjoy the day! Wrap my bumm knee and walk!!

emoticon



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WRITEITOUT's Photo WRITEITOUT Posts: 87
5/14/10 10:36 A

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I want to thank you all for your replies. I am still on the fence and need to make a decision soon.
I am having a bad week. Uggghhh.. I usually can keep a positive flow going. This has been a rough one because I have been working everyday and work has been very busy. I still walk every morning although I have slowed my pace quite a bit, drudging along..... but hey I have my happy music : ) and I have you all : ) .. I feel better already!
Thanks!



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KASSIOPEIA's Photo KASSIOPEIA Posts: 150
5/6/10 12:11 P

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Hi Writeitout!

I've been on methotrexate (with plaquenil) since I was diagnosed about 7 years ago. It has worked wonders and has the most clinical study behind it of any other treatment. However, when i first started they put me on an oral dose and it made me sooo sick (dizzy, lightheaded, nauseous). So we switched to an injection (once a week) and I'm fine. Sometimes I feel a bit queasy the next day but rarely. Metho allowed me to live a relatively normal life with RA.

My metho was doing a great job, but the disease was still progressing in my wrists, so my Rummy decided I should add Arava to my drug cocktail. It didn't agree with me - I got so sick the days after taking it, really nauseous.

I hope that helps with your decision a little. I know it's a hard maze to navigate, but a lot of it is just trial and error. We're all here to lend out advice though! :)

Slow and steady wins the race!

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NIKEGIRL1967's Photo NIKEGIRL1967 Posts: 478
5/6/10 9:05 A

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I have been on Arava (Lefleunomide) 20mg for about three years now, I think...I take that orally once per day along with an Orencia infusion once per month...I do have bloodwork religiously done every six weeks and have been fine.

I was tried on Methotrexate, both oral and injectable, before the Arava and I just could not tolerate it...it made me ridiculously sick to my stomach; like, at work, I would feel that if I moved one way or another, I was going to vomit.

Good luck and keep us posted.

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TRAINOF4's Photo TRAINOF4 Posts: 2,650
5/6/10 1:51 A

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I also had a bottom out of my white cells while on methotrexate, but I was on an extremely high dose and injectible. The injectible decreased the mouth sores & nausea though. So there is obviously a middle ground dose-wise & I bet it's different for everyone.

I would imagine the arava AND methotrexate combo would greatly increase the potential for neutropenia (low white count.)

INITIALLY we thought the methotrexate was what was causing my neutropenia, but I have been off of it for a long time now & this is still happening. SO I don't know if you can count that in your own research ?? I have something else going haywire...

Stay calm and carry on.
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5/5/10 9:48 P

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Well, I have for about 5 years, taken both Arava and Methotrexate until just recently when my WBC's bottomed out for about 3 months. I had been on Rituxan with it. Then my rheum took me off methotrexate. The only thing I have against methotrexate is that it made my hair thin out. Otherwise, it didn't bother me @ all. I think the reason my WBC's bottomed out was because I was on both meds - Arava & methotrexate. However, my RA is quite severe, and so far, we haven't found a good drug to put it in remission. I now am on Simponi and I hope it works. Although, the trials say that it works best with methotrexate! I see my rheum in 3 weeks. I hope to talk to her about it then. My count is now up to 6. It was down to .5. So it was pretty low! Good luck with your decision.

I can do ALL things through Christ whom strengthens me.


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WRITEITOUT's Photo WRITEITOUT Posts: 87
5/5/10 9:23 P

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Thank you both for your candid advice... I am on the yo-yo of RA life. I so appreciate this Forum and its members. I had been lost for quite some time and feel a sense of belonging now. I know to take it "one minute at a time" now..lol
Most people don't understand the aches and pains, or the overall "just not feeling well" that can just creep up and take over....
So I am still deciding on the medication but I am leaning toward methotrexate... sigh



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4CYNDI's Photo 4CYNDI Posts: 15,651
5/5/10 2:33 P

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TJ, I would be very concerned about just staying on steroids for a long period of time. They can really mess with your metabolism and do have other side effects as well. What you are taking now will not help stop the progress of the disease it will only mask the symptoms from what I've both experienced and read.

Good luck whatever you decide.
Cyndi

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BKWERM's Photo BKWERM SparkPoints: (191,904)
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5/5/10 12:57 P

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I didn't know what Resveratol was so I looked it up on a reputable website, WebMD. Here's what they had to say about it:

www.webmd.com/vitamins-lifestyle-gui
de
/supplement-guide-resveratrol


From what it says, it sounds to me like you should probably talk to your doctor about it and whether it will interfere with your meds.

My name is Joanna not Joanne, please and thank you.

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RESOLUTE on sticking with the things that work, e.g. tracking, drinking my water, exercising, etc.

RENEGADE by limiting unhealthy food and moving my body as much as possible.


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WRITEITOUT's Photo WRITEITOUT Posts: 87
5/4/10 10:56 P

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Hello again,
I was curious how much you may know about Resveratrol? You see while my Dr. is asking me to research Methotrexate and Arava as consideration for new treatment, I want to start taking Resveratrol. I have not found any information which shows it can not be used in conjunction with either one of these medications. After researching both Methotrexate and Arava it is hard to pick one over the other..
I wonder if staying on prednisone for a longer period is an option that I can choose? I am doing fairly well.
Thanks again,
TJ



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5/4/10 6:24 A

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I tried methotrexate for several months but like one of the writers below, it caused me to feel nauseous and tired all the time and I just told my rheumy that it was too much and my quality of life sucked and so I went off it.

That said, I truly believe that the reason that none of the biologics have worked for me is because I believe they need to be taken with methotrexate to work. I have no facts to back me up other than the drug info for all of them say to take WITH methotrexate, which I haven't done.

By the way, I've heard that if you take methotrexate as a shot, the side affects aren't as bad.

I am currently taking Arava along with Plaquenil and have had no side effects that I know of. I have been on both of them for about 5 years.

Good luck with your research.

My name is Joanna not Joanne, please and thank you.

Dundas, Ontario, Canada
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RESOLUTE on sticking with the things that work, e.g. tracking, drinking my water, exercising, etc.

RENEGADE by limiting unhealthy food and moving my body as much as possible.


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WRITEITOUT's Photo WRITEITOUT Posts: 87
5/3/10 11:25 P

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I am not sure which he is thinking..



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TRAINOF4's Photo TRAINOF4 Posts: 2,650
5/3/10 9:51 P

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I didn't know that doctors would do Arava & methotrexate at the same time - or does your doc want you to choose?

The methotrexate has a very long track record with minimal long-term issues for most people. It works well for me - the Arava was expensive & I couldn't get my insurance to cover it. I took it for awhile anyway. It made me nauseated & my hair fell out like crazy.

It's great that your doc is involving you in your treatment decisions. Doing the research will help you understand more about what the meds will & won't do & the potential probs AND benefits. It's a nice change from "Take this & don't ask any questions" that a lot of docs shove down their patients' throats!

Definitely check webmd and also www.arthritis.org/ Their site has a lot of helpful information AND links to other places for more info.

Whatever sites you use for information check that they are part of the Hon Code or TrustE groups that ensure you're getting unbiased & accurate information. WebMD is one of those. Happy Hunting!

Stay calm and carry on.
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5/3/10 9:48 P

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i have been on both but have to have blood test once a month.they were goood at the time.

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5/3/10 8:32 P

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I've been on both at one time or another. With methotrexate, I stayed tired all the time, it didn't do much good for my RA, I kept a headache, and my hair fell out. I switched to Arava. I actually felt good! But my blood pressure went up, and my hair fell out at an alarming rate, and my fingernails peeled off in sheets. So I don't take either med now.

WRITEITOUT's Photo WRITEITOUT Posts: 87
5/3/10 8:18 P

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Well, at this point I am on a small dose of prednisone and plaquenil. I seem to be doing fine for now. I suppose my Rueumy wants to take me off the prednisone. I am definitely going to research thoroughly before making any decisions.
Thank all of you for your in put!!



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ANGEL1066's Photo ANGEL1066 SparkPoints: (0)
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5/3/10 8:11 P

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I switched from Ridara (an older drug - a gold salt) to Methotrexate out of concern for Ridara's cancer causing side effect (I was recovering from Breast cancer). Terrible mistake. I was on the Mx. for a year, my RA went wild, especially in my hands. Fingers in both deviated badly & stiffened to where I can no longer type properly or play a musical instrument at all. I raised Cain with my doc, who loves the stuff, but he finally sent me to rheummy who gave me Enbrel. Wanted me to stay on the Mx. also but I refused. Am doing much better on the Enbrel plus tiny dose of Prednisone, no trace of inflammation, just old damage to contend with. Unfortunately the finger & wrist damage that occured under Mx. is permanent. I don't know anything about Arava, except that it also causes hairloss & nausea - you aren't contemplating taking both at once, are you? That sounds like a very unpleasant combination!

"Mountains DO move...One stone at a time." ~Rick Beneteau
Do not let what you cannot do interfere with what you can do. - John Wooden, Hall of Fame college basketball coach
With exercise, doing some is always better than doing none. - Spark article
MAKE THE BEST FOOD CHOICES YOU CAN TODAY - and then, try it again tomorrow!- Dr. John La Puma, M.D.


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4CYNDI's Photo 4CYNDI Posts: 15,651
5/3/10 7:52 P

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I am on methotrexate and Remicade. There can be some serious side effects with the methotrexate including liver damage. You must take frequent blood tests to make sure that no damage is occurring. I also deal with the tiredness/nausea issue. These side effects were greatly lessened when I split my dose over two nights instead of just one. I also take a b complex and folic acid daily to help offset the side effects. This being said, in conjunction with other medications it is usually very beneficial to slowing down the arthritis.

I have no report on the Arava as I've never taken it. I'd recommend checking out several medical sites like Web MD and the Arthritis Foundation for more information.
Cyndi

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CD6653280 Posts: 83
5/3/10 7:24 P

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I have used both the methotrexate and arava; with methtrexate although I did have some of the common side effects which are nausea and dizziness my biggest complaint was that it just made me sooo tired. After twelve weeks I just told my rummy no more. The arava I still take, I struggled for about three - four months with this medication just causing me to randomly vomit; I wasn't really nauseous or anything until just before and then wam but after my body adjusted to it I tolerate it very well and don't seem to have any side effect except an occasional headache, if I miss a dose.

Edited by: CD6653280 at: 5/3/2010 (19:25)
WRITEITOUT's Photo WRITEITOUT Posts: 87
5/3/10 7:12 P

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Hi friends : ),
My doctor has asked me to research these two meds, Methotrexate and Arava. He is considering putting me on them but asked me to research them first and then email him and discuss options, etc..
Anyone have any "hands-on" or research info already they may like to share?
Thanks..



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