Please introduce yourself to the community!

[SimoneHU]

Why not leave a short comment below and introduce yourselves. Give as much or as little information as you like. Feel free to ask your own questions here: healthunlocked.com/write/ra...

[amor]

Hi,

My name is Carmen, I am 54 years old, I am originally from Colombia, and live in New York City for 26 years. I was diagnosed with RA one month ago after suffering from excrutiating pain in almost all my joints. I could barely move. I began to see a rheumatologist who put me on Prednisone for a month and he added the methotrexate and folic acid last week after my second appointment. Right now I can say that I almost pain free, and hope to begin working again next week. I see food as medicine so I changed my diet completely after the diagnosis, and I will never drink even a drop of alcohol again in my life. I became gluten free 7 months ago after I began waking up with pain and stiffness in my hands, which was the first symptom, and since the diagnosis of RA I am eating only vegetables (except the nightshade vegetables), fruits, grains, legumes, fish and eggs. But I am thinking of stopping eating eggs also. I take a turmeric, ginger, apple cider vinegar and raw honey tea twice a day, and try to put turmeric in all the food I can. I also put two table spoons of grounded flax seeds and a table spoon of unflavored gelatin in my oatmeal every morning. I think that it is very important to help us with our diets in addition to the medication. I also practice affirmations and have a very strong faith. I would like to find a RA support group here in Manhattan. Please let me know if you know of one. After being in such pain and having so much difficulty moving I thought about the people who go through the same, and maybe they don't have anybody to help them. I would like to volunteer for that in my free time. I was lucky that my sister could fly immediately from Panama, where she lives, to take care of me for 20 days.

Take care,

Carmen

[Judyoelsen]

Hi, my name is Judy Oelsen.  I am 65 years old, and live in beautiful Hot Springs, Arkansas with my husband, Gary, and our two English Bulldogs, Gracie and Daisy Mae.   I was diagnosed with RA ten years ago,  after seeming to never get over a bad car accident from a few years prior.   We finally  realized it was RA after my RA factor was off the charts.   That led to further tests and confirmation.    I have been on Orencia for ten years.  It has worked very well for me.    I have flairs like everyone else with RA,  but my biggest problem is the fatigue.    There are so many things I want to do and plan to do, and then I find I don't have the energy to follow through.    It is very frustrating.   I am excited about following this new RA community.  Thanks to those responsible for setting it up!

[Smispoon52]

Hi,   Mae s Cad ad I live in Iowa. I have had RA for a most 40 years. I have had  over 20 hand and  wrist surgeries. Ipushthroughthe pain and fatigue and do what I want to do when I want to do it, being stubborn is a plus with this stuff. I am on Orencia infusion and now the Medicare gods want to start making people pay a copay of around 6-8 percent, which as every one knows that needs it would cost around $800-$1000  a month to the patient. Everyone that has this disease needs to reach out to their senators and tell them to vote against this! If you get an infusion this new change wifi affect you and this is coming soon!  Everyone, hang in there, better days are coming.

[Niconn in reply to Smispoon52]

Mae, I saw a comment from a Mae on Orencia on drugs.com and am trying to contact her, maybe its you? She listed food allergies and I wanted to let her know it sounded like histamine intolerance, I have it and it was made much worse by the drug Humira, so I was switched to Orencia which is fine so far. If this is the same Mae there are some things I can suggest to help bring histamine levels down so you can reintroduce those foods again, feel free to contact me

[christsh]

Hi.  I was diagnosed with RA 3-4 years ago.  I am 60.  I had a bad beginning episode with much pain and stiffness but the meds seemed to help and I had a long stretch of relative relief.  I am now in a flare.  My doc gave me a 3 week pack of prednisone and I am finished with that now.  I am better, but not great.  Swollen and inflamed in my hand and wrist joints.  I would like to hear about prednisone experiences and worry about weight gain.  I am on 10 metho pills per week and folic acid and Plaqinel(sp?)

I welcome any info about this disease.  I have read a lot-but would like to hear from the real people in the trenches.  Thanks

[mjcjgay in reply to christsh]

My pharmacist said that prednisone will have me to gain weight in the stomach. I didn't listen, not only did I gain weight, my hair started to fall out. I lost sleep& began to feel paranoid. I personally told my RA Dr. That i'm on to much- 10 metho and the pkg of prednisone . I changed my diet . I still take metho ,cut down to five. I' ve added organic foods... tumeric over my food. Ginger,Probotic drinks & alkaline water only. I took out all white food. SUGAR #1..I've noticed when I didn't eat sugar i didnt have a flare. The rain I can't help that's mother nature. A good heated pool for therapy is great for flares along with light exercise.

[Juliev320]

Is the diet helping?  Do you have pain?  On any drugs?

[Tinwoman2]

Hi, I'm Christine 48 & live in Lincoln NE. I had JRA from age 2 to about age 8 then remission. It came back hard when I was 16 and continues...

I've had 7 surgeries just to keep my hands/wrists working & had one foot totally reconstructed.

I have RA, SLE, Fibromyalgia, osteoporosis, sjogrens, IBS, & some allergies.

Weather really affects me; I'm having a hard Spring with the cold/wet days.

[Mairhi]

Hi y'all. I have had mysterious swelling and pain most of my life. However it took Dr's years to finally get to the diagnoses of RA. In 2008, at the age of 43, I finally began treatment for it. Since then it has been a roller coaster ride. There is not a drug they have not tried and do far nothing has worked for any length of time. RA has caused me to have fluid around my heart, dry eye, knee replacement, twisted fingers, kidney problems, etc..... I could go on and on. I am married to a truck driver and can longer spend time on the road with him. I live with my 24 years old son who takes care of the things I can no longer do and helps me when I am in flare. The thing I hate the most about this disease is how helpless and useless I feel. I try to stay positive and do the things I enjoy when I am having a good day(s). Luckily I am a book lover and on the bad days I cuddle under a heated throw with my 11 year old pit bull and read. I also enjoy writing and am thankful for Dragon software, it enables me to write without typing. I believe there is hope for us on the horizon. I do have one word of advice...find a team of Dr's that will work together. It took me years to get to that point but now I would not trade them for the world.

[Nancy-W_]

Hi. I'm Nancy, I am 54, I live in a small town in North Mississippi.I worked as a nurse before my life s went downhill.. I have had RA for approx 20 years but was just diagnosed 12 years ago.. At this time mine would be staged Severe. I have lost 2 toes, a finger, total knee replacements that need revisional surgery but due to number of problems I won't be able to have that surgery.. I will be on antibiotics every day for the rest of my life.. My Cervical Spine and most of the Thoracic has a metal plate starting at C-3 extending T-4.

I have been Paralyzed twice in the past 3 years, first time was on left side, 2nd time was from chest down.. After Surgeries on my neck and back and months in a rehabilitation, nursing home and of IV antibiotics and therapy, I recovered both times. I had a Feeding Tube for almost a year with nothing by mouth, which ruined all my teeth.. I am now back in the wheel chair, at the mercy of everyone around me... And all this started after knee replacement... A staph infection that myth body wouldn't fight... Now I'm a walking time bomb to be completely Paralyzed for good or it will stop my breathing because I have so narrowing of my spinal canal including the Lumbar Spine.. I live in pain, I have lost who I was.. I look in the mirror and see someone i can't stand... Sorry my story is not a very encouraging one..

[Deb-h in reply to Nancy-W_]

Sharing is the most encouraging thing that any of us can do

[Bahnmc in reply to Nancy-W_]

I am so sorry you are suffering through this . I was a paramedic for almost 30 years and now cry myself out of bed. My prayer for you is healing and some semblance of life returning . God Bless you .

[jdfwood]

Hello, my name is Jamie and I am from Northern Indiana, USA. I started having symptoms of RA around 1990. I was finally formally diagnosed in 2007. I struggled to continue working while taking Prednisone, Methotrexate, and Folic Acid. By 2008 I could not safely do my job and had to quit working. Within a few months I was in a power wheelchair and I am in it for life. RA had already destroyed the bones in my ankles and feet to the point there is not enough "good" bone left to do a replacement or fusion. Over the last 8 years I have tried Embrel(2 different times), Humira, Orencia, Xeljanz, Arava, and I am now on Rituxan. Of all the different meds that have been tried the only ones that have done any good at all is Methotrexate with Prednisone daily. I now have Osteoporosis due to Prednisone, Sjogren's Syndrome, and Primary Generalized Osteoarthritis.

[Hidden]

Hi am Jean from Venice, Florida. I was diagnosed with RA a year ago.

[Ambertabbycat]

Hi. I was diagnosed with RA 8 years ago. I am 57 years old and live in Chicago, IL. I've been on methotrexate tablets and have been managing pretty well until this February (2016). Had a bad flare at that time which wouldn't quit. Increased my dose of methotrexate and added Prednisone at that time. I am currently having bad side effects from the increased methotrexate. Have temporarily discontinued it starting this week, but my joint pain has returned. Leflunomide of Enbrel injections have been recommended by my rheumatologist. I've been reading about these, but the possible side effects do concern me.

I'm glad to have found this community to share experiences and receive support. I've been a bit isolated with my RA, as others don't seem to really understand.

[shanaL]

I'm shana and I am 45 yrs old and I have had RA since I was 6 . My brother who 3 yrs older than me also has RA for about 3 or 4 years and recently my 20 ish niece also diagnosed with ra . I am so over it even though its not over me.

[annmsw]

Very happy to have found you. It took 6 months and 10 doctors to diagnose my RA just after my 67th birthday. I'm a nurse and never realized how painful this disease is. Fingers hurt. Bye for now!

[RheumatoidRider]

Hello everyone. I've had Rheum for almost 11 years now. I am so tired,worn out. The heavyness I feel is pure torture. I do have some OK days. But the bad days are starting to outweigh the good. So I tried marijuana, Wow! I can function.

How do you feel about cannabis therapy?

[LeviJ in reply to RheumatoidRider]

I have been considering asking my doctor about it. I heard it is a problem if a person is one disabilty with either the LTD or medicare. I understand cannabis helps with pain. And I am against pain meds as I do not want to become an addict. I live in Ohio and we just approved medical use of marijuana. I wonder about the cost. I cannot see anthem medicare rx paying for it.

[Clevergirl33]

Hi, my name is Camrin. I live in Oregon. I have one kid in college and one who will be a senior in high school this fall. Married for 19 years.

I have Crohn's and have been doing the autoimmune dance since 2004. Recently ish I have been very sluggish, achey joints that seem to change which joints, swelling of the joints, hair falling out, and many other symptoms. After extensive blood panels, other tests, I was referred to Rheumatologist. It took 6 months to get to see one. While waiting my symptoms had progressively gotten worse. I have been dealing with it on my own for a over a year now.

After seeing specialist its confirmed, I am now a brand new RA Warrior. So,

I guess I am old Crohn with a dash of RA, and a few years shy of 40.

I am currently on Methotrexate, extra extra folic acid and a daily handful of other vitamins and supplements. I try my best to help regulate my conditions with diet too. It certainly seems to help me, I try to eat anti-inflammatory foods, whole foods and gluten free as much as possible. It is not a silver bullet or magic cure, but definitely helps me.

[Deb-h]

Hi everybody! My name is Deb and I was diagnosed 26 years ago. Been through the mill as most of us have. Plaquinil, methotrexate and now Rituxant. Been having a hard couple of months... but I never give up. I look at the disease as a game; some battles I win, some battles the disease wins. But it will never win the war. I choose to Define my disease and not let the disease define me

[jangrav]

Hi All........I've been diagnosed with RA/OA/OP at the age of 45. For 23 years I've been dealing with joint pain, fused joints (hands/Feet) and over malaise. I've been on clinical trials, taken humira/orencia/xeljanz and now trying cimzia.

Anyone have extreme fatique with Cimzia? I feel like i've been hit with a truck.

Thanks in advance

lize

[TLoudermilk]

Hello Everyone, My name is Terri and I was diagnosed with RA/RD in 2003. Unfortunately I did nothing about it until 2008 when I found I could not get out of bed one morning. My advice to any newly diagnosed is don't wait. Take this disease seriously and seek treatment from a Rheumatologist and other specialists as soon as possible. Become your own best advocate for your health and all around well being. May today bring you less pain and many "spoons".

[Bahnmc in reply to TLoudermilk]

I wish doctors would help faster.

[Babs12 in reply to Bahnmc]

Yes I agree

My pcp kept telling me it’s old age👎🏻I would not accept this

I am an ICU nurse age 63 still working and one day my knee just gave out

So I saw a rheumatologist blood test all normal but the ultrasound he did on my knee and my hands showed early stages of RA: thus was 10 weeks ago

Plaquenil twice daily for 10 weeks now has relieved my pain

Follow up this week🙏🏻😇 so grateful for a determined physican

[Danli]

Hello everyone! I am new here! I am 52 year old. I was diagnosed with RA a year ago and like you, I have the pain and stiffness the fatigue... some days are good some days are bad. Every day is a fight to keep going but I'm not stopping.

I am here for support, to listen your advice and understand more about RA., I am here also because I beleive when someone listen and understand you, You can get stronger and fight and try to have a better life...

"RA SLOWS ME DOWN BUT AIN'T STOPPING ME. GIVING UP IS NOT AN OPTION"

[Amy_Lee in reply to Danli]

Hi Danli,

Yes, we can be better and I am in remission now. I was diagnosed of RA in Jun 2014 and started the treatment without any delay. I exercise a lot to keep my joints mobile. Have a look at my recovery process and I hope it can inspire you to fight the disease positively.

healthunlocked.com/ra-warri....

Exercise is another crucial part to fight the disease and that was what I did to get myself back in good shape again. My suggestion is to make use of anything around you to do your exercise because RA patients are in pain and not as mobile hence to go round looking for things and places to exercise will make the exercise harder to start. I hope what I did will give you a good idea how to get started immediately.

healthunlocked.com/ra-warri...

Below are 2 very informative and well organised videos that answered most of my questions of RA for your reference and I hope it helps to answer yours too.

healthunlocked.com/ra-warri...

[Danli in reply to Amy_Lee]

Thank You So Much Amy! I am going to check the video and your recovery process.

I want to be positive more when days are really bad and try everything to fight this disease so thanks again.

Let's be strong!

Lilliam.

[JennaB]

Hi, my name is Jenna, I'm 39 and from Houston, Texas. I was diagnosed with Seronegative Rheumatoid Disease in October 2015. I had all the symptoms of RD for months before being diagnosed, but because they came and went and I was treating with ibuprofen and stretching and napping (alot) at home, I avoided seeing a doctor. When I got to my rheumatologist office, it did not take long for her to diagnose. The prednisone helped so much in the beginning, but its short term. I turned out to be allergic to sulfa drugs, so MTX (pills) and Humira added about 4 months after. In June of this year, I could honestly say I was doing better, consistently, for the first time since being diagnosed. However, just as I started to feel that, I turned up with Shingles; so I spent the next 5 weeks or so dealing with that.

I was off the Humira and on MTX Injections, at a lower amount. (The higher amount of MTX is apparently what caused the shingles to start with? I'm going by my doctor on that, because 38 seems WAY to young for that and I had chickenpox as a kid. So when my immune system was too low, the virus left its dormant stage and became active. I am wondering if anyone else has experienced this?

My 2 lab workups since my shingles recovery show my disease is tightly controlled. I have read the countless number of rollercoaster stories people living with RD and other autoimmune diseases share and my heart goes out to them.

I'm reaching out now because I find myself struggling with what remission looks like for me. Is tightly controlled the same? I still have mild pain everyday, but I am always mindful that it has been so much worse and where I am now is a better place.

I have been (like lots and lots of other people) coping with some side effects from the MTX & Humira, and wondering what other people's experiences have been like. Why they maybe switched medications and what they found that worked?

For me, I am having cognitive impairment that was initially only effecting me for about a day or so after my MTX dose to now a near permanent state. I'm finding that my hair loss since adding the Humira and the cognitive impairment or delays are worsening.

I'm floundering between, this is the best its going to get for me or do I need to switch medications? I have an appointment to see my doctor tomorrow and I will discuss it with her. I feel like an island right now and would really appreciate some wisdom from experience.

Thanks for reading..

[Bahnmc in reply to JennaB]

Shingles happen at any age. I was 30 and my twins were just 3 months old . Didn't realize it was shingles until they developed chicken pox from breast feeding . Felt like the worst mom ever !!

[LeviJ]

Diagnosed in 2013. RA came on all of a sudden. Went to doctors on Friday, barely able to walk, fingers the size of hotdogs, blood test revealed severe RA. 48 y.o. Spent the next 12 months sleeping. I remember scooting down the steps on my butt and half-way down, I would be too exhausted to go any further. After sleeping for nearly a year, I made myself get up, and made a decision to regain my energy. Taken mtx, humira, enbrel, arava, steroids had reactions to all of them. Currently on 2.5 mg prednisone, 200 mg plaquenil 2 x a day. Seems like nothing works. Being in fresh air, steering clear of drama, eliminating processed food, epson salt baths are the biggest help. Nowdays my inner circle consists of less than 5 people. Fortunately, I have a great pcp who validates my issues as well as a supportive rheumatologist.

[dianne978]

Hello my name is dee.

I found this group as I was searching the web. I have had Rheumatoid Arthrits & Raynauds since 2010, in my mid 50's, the raynauds came first them came the r/a. It was pretty bad before it got under control after trying many meds. It is kinda under control now with biologic, (according to blood work I guess) but I had 3 thumb infusions, 2 on the left, one on the right, and have to have another on the left to remove the pin since it is causing me pain. I have some r/a in my upper back because r/a.. back doc said. Just had foot surgery in December to correct foot deformity, and have to have left one done too...have anxiety because of all of this on meds for it..lord have mercy!

I am so tired and am having a hard time working...I really would like to apply for disability but am afraid if I leave my job and I'm not approved....then what! I do not have a lot of savings, and have a house payment, car, and credit card bills. Any know how hard it is to get approved for SSD?

Thank you in advance for any suggestions.

[mjcjgay]

Thanks! For an informativeplatform

[DavidLeena]

I am a 48 yrs old woman who's had joint pains , facial palsy , hypothyroidism , hypertension , since past 5 years.On treatment with azathioprine , planequil , metoprolol XL , and 125 mg of eltrox .Are there others like me ? Let me know , friends .

[SimoneHU HealthUnlocked in reply to DavidLeena]

Hi DavidLeena, welcome to the community! Make sure to post your question on the main community. As a comment here only a limited number of people will see it. Just click on ‘write’ on the top of the page (if you are on the website)

[davelinks]

Hi, I'm Dave aged 64 and enjoy some running, but think I have some moderate arthritis in the knees, so looking for some advice on here to manage it without having to give up the running..