Group photo
Author:
JANISMKW's Photo JANISMKW Posts: 1,335
8/30/15 9:16 P

My SparkPage
Send Private Message
Reply
Hope you are feeling supported, not overwhelmed by now. emoticon
Good idea to think of taking ginger tea. Some foods have known anti-inflammatory properties such as ginger, turmeric, garlic, berries, salmon and other oily fish, leafy greens.

Some people find that eliminating certain types of foods helps their RA symptoms such as gluten or nightshade vegetables (tomatoes, eggplant, all peppers and chilis, tomatillos). I tried the latter but it didn't help me.

These are not substitutes for proper (aggressive) medical treatment, but might help bolster the body's defenses or not work against yourself if you have a food intolerance.

I think that methotrexate is generally the first medicine tried. It has been used for a long time. It is taken once a week. It is tough on the liver so blood tests are needed periodically to check the liver. I was told not to take acetaminophen (Tylenol) or drink alcohol while on it.

There are other Disease-Modifying Anti-Rheumatic Drugs (DMARDs). One long-standing triple-therapy* of 3 of these pills has shown in recent studies to be as effective as biologics for some patients.

One thing about auto-immune disorders is that the medicines to treat them all effect the immune system one way or another, and so tend to make those of us taking them more prone to catching infections. So my rheumy always emphasizes staying away from sick people, and at my recent visit, mosquitoes and ticks.

Again, I wish you the very best. Keep us posted on how you are doing!

 Pounds lost: 48.6 
0
27.5
55
82.5
110
KAREN2LOSE55's Photo KAREN2LOSE55 Posts: 8,040
8/30/15 8:25 P

Send Private Message
Reply
Hi there, Figuoro!

It sure looks like you've gotten some awesome advice from several and that doesn't surprise me at all. When I saw your age of 29, it reminded me of myself, even though I'm 56 now and was diagnosed in 2008, I was in so much pain and stiffness at least 25 years or so before that. My family would say that also. I tried so much alternative medicine along with my MD, but nothing ever showed up in the blood tests. And it wasn't until I was sitting in my Chiro's office and he noticed my swollen blue joints on my hands and he right away pointed me to my MD and by that time, it did show up in my blood, so I was referred to my rheumatologist and I was placed on prednisone and methotrexate right away and the relief made me cry because I felt relief for the first time in years!!! I didn't start with the biologics until 2011 because I was so scared. You should realize, as I did, that when we're on stronger RA meds., we're monitored so regularly, that if they see anything in our blood tests, they stop it right away or decrease the drug. Also, when we could get a side effect, like a rash or something intestinal, we let our dr. know right away and then measures are taken to stop it or decrease it and sometimes our Rheumy would have us keep trying it too, and have another blood test later, because sometimes our bodies can get used to the drug and then we won't have anymore side effects for a long time. The best biologic that worked for me was the Humira. Enbrel never kicked in, Orencia kicked in, but wasn't as effective. I've been on Xeljanz now since Feb. and are feeling better and better. I've gotten several little spots and one the size of a quarter, but nothing to worry about. Xeljanz is one of the first biologics that comes in pill form and I will have to say that my heart beats normally when I take that pill. Those injections are nasty, but I did tell myself that it was worth it, if it worked!!! The Orencia was also an injection, but didn't sting! Ha, that was a nice surprise!! With my last RA appt. in April, my Rheumy told me that he felt my feet were so bad from the RA and OA, that I should stop walking on them for exercise. I had an x-ray of them and also an MRI on them. So he knows what's inside! I know my feet got this way with RA way before the diagnosis. So I'm saying that I think that it's a good thing that your RA has shown up in your blood and that you can get the aggressive treatment asap and not have the damage that I've had. So with not being able to walk to lose weight and get more healthy, I joined a fitness ctr. affiliated with our local university. I LOVE it. I go 2-3x/week. Maybe you would learn to love it too. I'm not afraid of the water like I was when I was a kid, because I'm so chubby now and I float like driftwood! I know, not funny, but true! Good luck to you and I'm sorry that this turned into a book!!

~~Karen~~

Edited by: KAREN2LOSE55 at: 8/30/2015 (20:30)
Karen from Minnesota

"Little by little whittling my middle!"


Right TKR 12/15/14




 July Minutes: 0
0
250
500
750
1000
MIAMIRN's Photo MIAMIRN Posts: 2,398
8/30/15 3:04 P

My SparkPage
Send Private Message
Reply
Hi Figuoro!

Any time you want help to find an RAD resource or have a question, that is of a medical nature, feel free to friend me. I not that you won't get excellent answers on this forum. There are members here that are very well versed. I happen to be a retired RN and like to help memers with the medical "whys" of things. I invite you to look at my page. As a matter of fact setting up your own page is easy to do on this site. Most everyone has set one up. It's a fun and creative way to keep in touch and meet members. Anytime you need help setting it up you can go to technical support forum. You can find it by clicking "forums" on the main page, right hand side or inputting in the search bar. There is a "how to" set up your own page somewhere on this site. That's how I set mine up. I have to look up where it is and add it to this post.

Good luck to you!

emoticon emoticon

My name is Elona. I live in the Philippines.
Time Zone pending.
Love life! Never, never give up! Never give in, never give in, never; never; never; never give in nothing, great or small, large or petty. Never give in except to convictions of honor and good sense-Winston Churchill.When you have a lemon, make lemonade!


 current weight: 5.0  over
10
5
0
-5
-10
FIGUEROA33 Posts: 63
8/30/15 12:58 P

Send Private Message
Reply
Thank you for your reply. I will take your advice and treat it aggressively. In my family people live until their 90s and I want to live that long and be independent.

MIAMIRN's Photo MIAMIRN Posts: 2,398
8/30/15 12:41 P

My SparkPage
Send Private Message
Reply
Rheumatoid Auto-Immune Disease is a progressive disease. The Gold standard of care per the Rheumatoid Association is, aggressive therapy starting as soon as possible after diagnosis. They give you two years post diagnosis in which you should recieve aggressive treatment in order to reach the most promising outcome. patients that do not recieve aggressive treatment during the first two years post diagnosis risk severe, life long joint deformities accompanied by severe pain. They also risk organ inviolvement with cardiac being number one on the list of problems. The list is long for organs i e kidneys, thyroid, eyes, esophagus, liver, intestines

I chose aggressive treatment being I didn't want a bad outcome and I want a long life as pain free and as active and functional as possible. I'm glad I did! Within six months of treatment I became very severe. I can imagine the outcome if I hadn't started to try biologics to find the right one would have been. I still have severe pain, but at least I have minimal deformities and am very active. I do take pain meds in order to engage in athletics. My doc is amazed and pleased with my function. He said the reason my case is as good as it is is not just because of the meds I am on, but because of the high lebel activity I engage in. He explained it increases circulation thus improves everything.

Please weigh the benefits against the risks with medications. I, for one, rather risk having side effects than a death sentence. Yes RAD does kill. My doc monitors my blood every other month vs every month for the first two years. What does he look for? The level of the disease activity, how my organs are doing and possible pre-cursor signs of cancer. I take Methotrexate, Sulfazine and a weekly dose of Humira.

I like the site "RA Warrior". It is comprehensive and educational. Check it out.

Good luck to you most of all!

emoticon emoticon

My name is Elona. I live in the Philippines.
Time Zone pending.
Love life! Never, never give up! Never give in, never give in, never; never; never; never give in nothing, great or small, large or petty. Never give in except to convictions of honor and good sense-Winston Churchill.When you have a lemon, make lemonade!


 current weight: 5.0  over
10
5
0
-5
-10
FIGUEROA33 Posts: 63
8/30/15 7:13 A

Send Private Message
Reply
Oh I know how it was arrived at. It is RAD for sure.

I will have to look up Humira.

Thanks for the reply.

JANISMKW's Photo JANISMKW Posts: 1,335
8/30/15 12:49 A

My SparkPage
Send Private Message
Reply
I add my sympathy that you have this serious diagnosis, and welcome you to this team... it is a great place for support and advice.

I would ask your rheumatologist how the diagnosis was arrived at? There are many auto-immune diseases and many thing present with similar symptoms to RA. At first my rheumy thought I might have had Reactive Arthritis, which goes away, because I had had salmonella poisoning a little while before.

I asked him what is the best outcome for RA? His answer was: some people are fine on just methotrexate. There are also other DMARD (disease-modifying) pills or combinations of them to try before trying the biologics like Enbrel or Humira.

I didn't find any real relief until I tried Humira. It's an injection by pen every 2 weeks. The side effect warnings do sound scary, but the risks of RA are real too, besides pain and joint damage it increases the risk of heart disease.

I think one of the best sources of information is the Arthritis Foundation. www.arthritis.org/about-arthritis/ty
pe
s/rheumatoid-arthritis/

They have various free e-newsletters such as Nutrition & Fitness and Mind, Body & Spirit relating to living with arthritis.
emoticon Best wishes.

 Pounds lost: 48.6 
0
27.5
55
82.5
110
FIGUEROA33 Posts: 63
8/29/15 8:39 P

Send Private Message
Reply
The spoons really don't apply to me since I don't have fatigue. I just have extreme pain and stiffness.

Thanks for your reply. I will use that term "rheumatoid autoimmune disease". It makes more sense.

BKWERM's Photo BKWERM SparkPoints: (181,698)
Fitness Minutes: (173,737)
Posts: 13,396
8/29/15 5:53 P

Community Team Member

My SparkPage
Send Private Message
Reply
Welcome to the team but I'm sorry to hear of your RAD diagnosis.

Yeah, people don't "get" RAD. They hear the word "arthritis" and automatically assume it's the kind that your grandparents have. They don't realize that there are more than 100 kinds of arthritis and not all of them are degenerative. In fact, RAD isn't even a true arthritis as it's an autoimmune disorder. That's why we changed our team name to Living With RAD. If I tell someone I have rheumatoid arthritis, they say, oh yeah, I have that in my hands but if I tell them I have rheumatoid autoimmune disease, they want to know what that means.

Like Cyndi, I'm also on a biologic, which has helped me tremendously. Without this medication, I wouldn't be able to walk let alone exercise and honestly, this medication has improved my quality of life so much that most days, I don't even know I have RAD.

Here's a link to "the spoon theory" Cyndi was talking about:

www.butyoudontlooksick.com/articles/
wr
itten-by-christine/the-spoon-theory/


Another good link for explaining RAD is the Rheumatoid Arthritis Guy's 60-Second Guide to RA:

www.rheumatoidarthritisguy.com/60-se
co
nd-guide-to-ra/


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

Dundas, Ontario, Canada
Daylight Savings Time/Eastern Time Zone

Biggest Loser Flab-u-less Summer 2019 Challenge
Black Panther Team
Seafoam Starfish Panther-Only Team

BLC35-40 - Resolute Renegades
www.blctracking.com

youtu.be/1u-niluB8HI

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

RENEGADE by limiting sweets


 Pounds lost: 75.6 
0
28.5
57
85.5
114
4CYNDI's Photo 4CYNDI Posts: 15,303
8/28/15 5:52 P

My SparkPage
Send Private Message
Reply
If you don't "present" as sick, it is hard for them to understand and see what you are going through. In some ways being so sick at the beginning helped my husband, parents and friends understand that yes, there really *is* something wrong.

Be patient with them and explain calmly what you are going through. I read an article about a woman who explained it to her friend with spoons. I wish I knew where that article is now.

Basically at a restaurant she grabbed a handful of spoons. She showed the bunch to her friend and said this is the energy you normally have in a day. She then divides them and shows the remaining spoons. This was her energy for the day. She explained that each task took energy, like taking a shower, making food, driving to meet the friend at the restaurant. So that she had to think carefully every day on how to spend her spoons.

That is what it is like for me a lot of days. I have to add in a full time job, which often leaves me drained and not able to cook when I get home from work, so we eat out a lot. My husband (he was there with me at the hospital when I couldn't move) understands this and doesn't demand I do more on any day than I can.

But, I have others who don't understand and can't "see" that even if I *want* to do something, there are times I can't. This is one of the toughest things I have to deal with. Hang in there. You will probably get some great information from you doc who can help you enlighten your family as to your new life.

Good luck!

Cyndi C.A.M.O.Crew BLC 38
pacific time

HS Cyndi RavenPuff - Hogwarts 21, 22, 23

Kyndi (Kynthia) Bea Goode ~ summer ~ Hobbit/Human
Mademoiselle Cyndi L'académie de magie de Beauxbât


 Pounds lost: 5.5 
0
6.25
12.5
18.75
25
FIGUEROA33 Posts: 63
8/28/15 5:33 P

Send Private Message
Reply
Thanks for your replies. I am just surprised at the lack of support from family to be honest. I guess RA is not a really understood disease.

4CYNDI's Photo 4CYNDI Posts: 15,303
8/28/15 1:59 P

My SparkPage
Send Private Message
Reply
**HUGS** Getting a RAD diagnosis is never easy. I think you are off to a good start with exercise. Walking is very beneficial along with stretching and strength training. After my diagnosis I started walking for 5 minutes a day (and it was s*l*o*w). I walked every day and each day (then week) I would either add to the time or intensity. I have walked 5K's and even had days where I've taken over 20,000 steps.

My best advice when seeing your rheumatologist is to be honest about your pain, where you are stiff, your quality of life. Yes, there are risks involved with all of the medications (especially biologic meds). You have to weigh the potential risks with your quality of life.

I have chosen to take the biologic treatments even with the risks because otherwise I would be lying in bed or in a wheelchair waiting for the end. When I first presented RA I went from (relatively) healthy to not being able to walk or lift my arms in 3 days. What you are willing to risk/live with is something to discuss with your rheum.

You may wish to look into an anti-inflammatory diet along with the supplements you are taking. Cutting out nightshade foods like potatoes and tomatoes have helped some. I personally eat a gluten free diet to help, but this was discussed with my rheum before I tried it. It may or may not help you specifically. I have found that eating a wheat free diet has lessened (not eliminated) the inflammation.

We also have a resources thread that has links to great websites to help you with some of these questions and help you formulate your questions for your doctor.

I hope this helps.

Cyndi C.A.M.O.Crew BLC 38
pacific time

HS Cyndi RavenPuff - Hogwarts 21, 22, 23

Kyndi (Kynthia) Bea Goode ~ summer ~ Hobbit/Human
Mademoiselle Cyndi L'académie de magie de Beauxbât


 Pounds lost: 5.5 
0
6.25
12.5
18.75
25
LINDAJOYWK's Photo LINDAJOYWK Posts: 5,611
8/28/15 1:56 P

Send Private Message
Reply
I too am afraid of TNF blockers (my primary & I decided against them)though I finally gave in
to Methotrexate which is also scary but I seem to be doing OK so far. To be fair most people do
well on the meds. My Rheumatologist would like me to go to Enbrel. For me I'm not comfortable
with it. My primary gave me 800mg Ibuprophen for when I need more help.I take a Curcumin/Tumeric supplement & a vegetarian Omega 3. I personally believe the most important
thing you can do is to keep moving. When your muscles are strong,there is less stress on your
joints. But rest when you need to. Modify if you need to. Do what works for you! We are all different. I also follow a Pescatarian diet which I believe helps. Sounds like you have a good
start on this. I wish you all good whatever you decide!-Linda

"It's not the mountains ahead that wear you out-it's the grain
of sand in your shoe"-unknown


 Pounds lost: 6.0 
0
13.75
27.5
41.25
55
FIGUEROA33 Posts: 63
8/28/15 1:18 P

Send Private Message
Reply
Hello Everyone
I have just been diagnosed with RA by my primary doctor. I have not yet seen a rheumatologist so no meds yet. I am just wondering what type of questions should I ask? I am afraid of the meds since I read some may lead to cancer (Embrel). Is this true of all the meds?
My doctor recommended I go stretching so I am starting yoga again soon. I also do strength training. I am still too heavy to do much cardio so I walk on good days. I also started taking a calcium supplement to ease pain and drinking ginger root tea for inflammation. Anything else I should be trying?
Thank you all for your responses in advance.

Page: 1 of (1)  

Report Innappropriate Post

Other Living with Rheumatoid Autoimmune Disease(RAD) RAD-Specific Posts

Topics:
Last Post:



Thread URL: https://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=20572x959x62363448

Review our Community Guidelines