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3/25/09 8:46pm

Thanks for the reply. How long have you had RA? And, if you don't mind me asking, how old are you?

Crystal

4/ 7/09 11:51pm

Hello! Just have to tell you, Enbrel isn't that bad. I was afraid of taking it too - all the side effects and the shear horror of giving myself a shot every week. But, it was that time... I was on Prednisone, and Methotrexate alone prior to the Enbrel shots and it just wasn't working for me. I'm happy to say that after just one month of Enbrel shots, I'm feeling great. Have more energy to play with my kids, and feeling no pain and have no swelling (even after a hard day's play). It's worth it ladies, it truly is. To go back to living a "normal" life. Just be sure not to have unrealistic expectations - we will never truly be "normal" again (or as we were before RA), even with all the wonderful drugs out there to help. But to be able to function without pain, is the greatest feeling I've had since my diagnosis 2 years ago at the age of 27. Good Luck.

Anonymous

4/ 8/09 8:40am

REALLY ? I HAVE TO SAY IT IS JUST SO SCARY, WITH ALL THE SIDE EFFECTS. I HAVE TO WORK FULL TIME & THERE IS ALWAYS SOMEONE WHO IS SICK HERE WITH A BAD COLD/FLU, SO WHAT DO I DO THEN TO NOT GET SICK ??? THEY SAY YOU COULDN'T FIGHT OFF ANY INFECTIONS ?

Crystal

4/ 8/09 12:45pm

I guess for me it wasn't so bad because I was already taking Methotrexate. They pretty much have the same side effects as the Enbrel. yes they do lower your ability to fight infections. You just have to take extra precautions (some which you should already be doing anyways) like wash your hands a lot, use disinfectent wipes at the grocery stores (for the cart/basket handles) .. things like that. Just be more cautious when around people who are sick.

I have two young children (and kids in general are always getting sick, right?); it is tough because it seems I will always be next after taking care of them... but lately I really have just stepped up the washing of the hands (after every one of their nose wiping), disinfecting the house every day (especially door knobs, phones, remotes, light switches, and faucet knobs), and I've been able to keep from getting their colds the last two times.

I will say too though the part that sucks about the meds, at least with Enbrel, is if you do get sick, you have to wait to take your next dose until you're better otherwise apparently you'll just drag out the illness. So i was told by my nurse not to be stubborn, and just wait. Apparently she had a patient who didn't want to stop taking the Enbrel because she was afraid to be in pain again, but got sick and continued, and ended up in the hospital with pnemonia. Definitely worth it to me - that's what Aspirin is for!

You should check out arthritis.org - it's the site I belong to - it has great resources and the people are wonderful for support. Really, I'm so glad i found it becuase you can just vent and vent and everyone knows what you're going through. It's nice to have them to turn to when the people in your personal life can't really understand.

Nancy Wojtkiewicz

4/ 9/09 7:53pm

Hi I started out with RA and in major pain for a long time. Finally found a RA doc and started with predisone plus alot of other pain, depression drugs, sleep aids, etc. I have been taking Enbrel for over 2 years and after my 1st injection the pain was gone! I could not believe it. I was 26 when I got RA and now I'm 56. I've had my knuckles on both hands replaced, my feet both big toes have been replaced the metatarcles cut down and 2 toes fused so they won't bend and this is on both feet.

I wish they had the biologics back then that they have now. Enbrel is the least toxic of the rest of the biologics. I can't say I enjoy giving myself a shot every week, but it's better than being in pain.

I also am on disability and have been since 1990. I had a great doctor that was also a SS disibility DR, (meaning that is who SSD would send you to be evaluated).

I've been to Mayo clinic and had occupational rehab and physical rehab. I go to a water excersice class for Fibromyalgia because this type of water class exercises the entire body. It's in a heated PT pool. It's great and I love it. Check your local hospitals or park districts for information.

I suggest you find a group to attend for support with dealing with arthritis, you'll be amazed all the people that are in the same situation as you are. You're not alone and you really have to believe in yourself. What makes us stronger is the challenges we deal with daily. So hang in there, it will get better. Don't be afraid to ask for help it doesn't say your helpless it makes you share your feelings with a soft place to land.

4/ 9/09 11:04pm

Thanks for taking the time out to offer advice.......I'm seriously considering the Enbrel.

Hearing about your journey makes me feel just that much more blessed. Sorry you've had such a rough time and thankful the Enbrel is working for you.

God Bless~

Jamie

3/26/09 2:21am

Hi CountryGirl,

Let's take a look at the picture. You are in the first year of a serious auto immune disease. You are working full time with a two hour commute?! Is that an 11 hour day? You and your doctor are still working out the most effective treatment for you. It's no wonder you are so uncomfortable.

Can you scale back your work in any way? Are they making any accomodations for you at work to make you more comfortable?

Are you learning any coping skills yet, what your boundaries are? Are you getting any rest and good nutrition? Do you have any one to help you?

One month on the MTX is not long enough to evaluate it's effectiveness. If you are afraid of the biologics give it at least 3 months and go up in dose on the MTX if needed. If you still have no response then talk with your doctor about the Enbrel or other biologics, you've then given the DMARD's a good shot and they didn't work.

In the meantime you don't have to suffer so much pain. Ask for pain medication and sleep medication. I find a long acting pain medication taken with a sleep medication at bedtime has helped tremendously. Your lack of sleep and untreated pain are going to keep you in a vicious cycle. I don't know what you do for work so I don't know if you can take pain meds during the day. There are some like Ultram that are less sedating for daytime use. I also suggest getting rid of any unnecessary activities and scaling back on work or taking time off, ask for help so you can rest when you are not at work.

Hope this is helpful.

Jamie

3/26/09 2:21am

Hi CountryGirl,

Let's take a look at the picture. You are in the first year of a serious auto immune disease. You are working full time with a two hour commute?! Is that an 11 hour day? You and your doctor are still working out the most effective treatment for you. It's no wonder you are so uncomfortable.

Can you scale back your work in any way? Are they making any accomodations for you at work to make you more comfortable?

Are you learning any coping skills yet, what your boundaries are? Are you getting any rest and good nutrition? Do you have any one to help you?

One month on the MTX is not long enough to evaluate it's effectiveness. If you are afraid of the biologics give it at least 3 months and go up in dose on the MTX if needed. If you still have no response then talk with your doctor about the Enbrel or other biologics, you've then given the DMARD's a good shot and they didn't work.

In the meantime you don't have to suffer so much pain. Ask for pain medication and sleep medication. I find a long acting pain medication taken with a sleep medication at bedtime has helped tremendously. Your lack of sleep and untreated pain are going to keep you in a vicious cycle. I don't know what you do for work so I don't know if you can take pain meds during the day. There are some like Ultram that are less sedating for daytime use. I also suggest getting rid of any unnecessary activities and scaling back on work or taking time off, ask for help so you can rest when you are not at work.

Hope this is helpful.

Jamie

3/26/09 1:55pm

Answers to your questions:

*I'm a Human Resource Specialist @ a manufacturing facility (there are only two of us - so I feel "real guilty" when I miss...we have 400 employees) I really don't miss work other than leaving early for scheduled appointments or if I take a vacation day.

*I haven't asked for accommodations - other than a reduced work schedule I have no idea what to ask for. I type and write all day (my hands hurt more than anythng else).

*I've always been soooo active, I don't think I'm coping very well and I'm just having a hard time adjusting to all this pain and fatigue. My sed rate was within range last week, based on the pain level I can't believe it wasn't 200

*I'm not resting good at all, but, I eat pretty well balanced meals (I love fruit and raw vegetables).

I've played league tennis since 2000, year round (doubles and mixed doubles). I just don't feel like playing right now (so I watch tennis on t.v.). I don't keep house like I used to simply because I'm exhausted. I usually hit the recliner as soon as I walk in the door. You're right, I'm gone 11 hours a day. My 13 year old plays baseball so a couple evenings I have to go home, pick him up, and head back to town (we're 20 miles from town so that's a 40 mile round trip in addition to the 114 mile round trip back and forth to work).

I honestly don't know if I can continue at this pace very much longer. I can't even think straight and it's affecting my job. I'm a salaried employee and I have salary continuation and should get the doctor to take me off, however, I don't want to leave my co-worker by herself.

I've thought about social security disability a lot lately. I'm just not a quitter and I hate to give in to RA. I'm holding out hope that the meds will kick in but it's been 9 months. My methotrexate dosage was increased this past week from 3 pills to 5. I hope that's the magical quantity needed. For now, I'm staying clear of prednisone. I think of that drug as a "last resort". I'm going to try an over the counter sleeping pill that my rheumatologist told me about, it's called Alteril. Maybe it'll help to get a much needed good nights sleep.

Can you tell me anything about social security disability?

Thank you, so very much, for your reply (at a time when I needed it most).

Thanks again!

Anonymous

3/27/09 8:39pm

I don't know from experience, but my understanding is that it's very hard to get on social security disability. They have a pretty rigorous standard for how disabled you have to be. I would definitely spend more time trying to find the medicines that will work for you. Give Enbrel a try. (I don't know much about the other biologic drugs so I can't give them the thumbs up or down.)

MBB

3/30/09 10:57am

Hello, I saw your post and couldn't help responding. Your profile is almost exactly like mine was, even down to the two hour commute. I was diagnosed in 1998 but had been severely sick for at least three years before and had been being treated for "arthritis" since my early 20's. No one told me I needed to go to a Rheumatologist. Finally I ended up in the ER and the x- ray tech came out to tell me that my spine was degenerated, I had advanced arthritis for my age and needed to go to a Rheumatologist. No one had ever told me this before!! So I went and thus began a decade of trying different meds, intolerable pain, sleepless nights (which I had been dealing with for three years already) confusion, etc... I managed to suffer thru my job for five more years and then I just collapsed at work one day and basically never went back. I have been on disability since 2003. Most people tell about their problems getting SSI but I didn't have a bit of trouble getting disablilty but it is very stressful process. I felt bad about being on SSI until I realized it was insurance that I had paid for! Anyway, after more than ten years of RA I am still in pain, still wading through meds (I have been on almost all of them), and still confused. heehee I just wanted to paint a realistic picture for you it is a hard road and often doesn't get easier. So the best thing to do is to just realize that you are going on a long journey with many ups and downs and it won't be easy. RA is not for wimps! heehee I hope to talk with you again, Michele

PD

5/10/09 5:51pm

DISABILITY PAPERS HAVE TO BE FILLED OUT GOOD SAYING YOU CANN''T WORK BECAUSE OF YOUR DISABILITY YOUR PAIN MEDS AND BATHROOM HABITS MAYBE TRICKY AT TIMES YOUR WALKING IS HARD SEE WHAT YOU WILL GET AND SEE IF YOU CAN SUVIVE ON IT

GOOD LUCK

tessie

3/27/09 7:55pm

I feel your pain! Just for reference, I take Sulfasalazine (2000 mg/day), Plaquenil (don't know mg offhand, but I take one twice a day), MTX (methotrexate) I now take 10 pills per week (25mg), and we added Humira (an injectible) every other week. And I STILL have to deal with the pain and fatigue of RA! But, it is getting better, and I believe we'll be able to start cutting back on some of the meds soon.

I was soooo tearful and scared, considering adding these medicines that seemed so dangerous and scary! I still hate that I have to make the trade-off of taking scary meds or risking longterm deformity. My rheumatologist has been great, letting me come to the decision on my own. It also helped that she was able to say that NONE of her patients have ever been diagnosed with lymphoma (the biggy scare for the Humira) and that she considers the risks well worth it, based on her patient population and the complications she has seen. Also, I had a friend from high school who was diagnosed with RA before all the new meds; sadly, she is greatly disabled now. I feel confident that my rheumy is on top of things, I get blood work done every 4 to 6 weeks, and I've only had one infection since starting all these immunosuppressants.

About work: What a difficult decision/situation.

You have received some good replies here, especially dealing with how to scale back on what you do.

When I first got sick, it was only a few weeks before I was incapable of working. I eventually lost my position, but no matter: I'm still not in any condition to work...yet. I was fortunate to have a long-term disability policy with my former employer, so I am receiving 60% of my salary for now.

I relate to you not wanting to leave your other co-worker holding the bag. I was the ONLY person doing my job, so I really felt just awful. But you know what? It was the best thing for me and for my health. Eventually I was able to embrace it and I take this time to learn about my disease, cope with the symptoms, and hopefully it will all pay off in the long run with a healthier new me.

Make no mistake: you WILL have to make changes in order to deal with RA. The trick is to keep your eye on the prize: YOUR health.

Anonymous

3/27/09 8:33pm

Don't be afraid of Enbrel and the other biologics. (Just make sure you get a checkup every couple months so your rheumatologist can monitor you.) I've been on Enbrel for several years now, I've had RA since 2000. I started out on methotrexate and took ibuprofen pretty much daily for the pain and soreness. I still take the meth but I'm down from 6 pills to 3 and in the next few months my doctor's going to take me off it entirely. The Enbrel has been wonderful. It's made life so much better. It has stopped the progression of the disease. I still occasionally have soreness in my wrists, but it's not that often (and putting on a wrist splint for an hour or so fixes it). Good luck.

3/28/09 12:10am

I'm looking into the disability thing, too. I don't even have a solid diagnosis yet, but I've not been able to work full time for a year now. The diagnosis has been a long time coming b/c we have very crummy ins. and no money to pay extra med bills. My doc and I discussed disability this week. It's not the end of all working. Social Services just told me that I can still make $980 a month in addition to whatever the state gives me. (Virginia) I do worry about people looking at me like a mooch on the system, but hey, if you can't work and you're in pain- the least you could do is have less financial worries. If I do get approved for disability, I plan on volunteering. I will be a blessing when I'm feeling well-- and when I'm hurting, I can focus on doing what I can for my comfort and my family. The doc and I discussed applying. If I'm approved, I'll draw it. If meds go well and things stop flaring, I can go back to work and not draw it. It seems pretty cut and dry to me. But ya know, I'm not living for work-- and I do have a strong work ethic. But I look at it this way. If I push myself all day at a job, push myself too far, mind you. I'm no good to my family, I'm hurting my body even more. That puts me in a position where I'm living for my job. I'm sorry, but that's not where I want to live. I want to live life to the fullest. Even if finances go south and we end up downscaling drastically, I want to arrange my life so the good moments can be spent on my family and serving God. This whole thing has really made me prioritize. I have to look at every deed closely and count the cost. (Gee, I hope no one throws tomatoes at me!)

tessie

3/28/09 3:50pm

Here, here! I am totally with you, but then again, I CAN be. It enrages me that so many people have to put there jobs ahead of their health, but the reality for most is that they can't afford to not work. I haven't worked enough to get SSDI, and even if I work another year to get enough work credits, the amount I would get is meaningless. Thank goodness I had the private insurance through my previous employer.

The reality is also that SS makes it so difficult to get approved (for most, not all). I don't understand how anyone could think we would choose sickness for the piddly amount SSDI will put in our pockets! It is outrageous. My doc told me in the second month of treatment that I should file for disability with SS. The second month! And now I sometimes think, I wish I felt THAT good again!!

If I were queen of the world, our communities would have in place methods to help people who just can't work.

Virginia Girl

4/12/09 11:28pm

Oh, my God! I feel like I could have written this letter myself! I am having the worst time. I feel like I give all I have at work then have nothing left for my family. Especially my beautiful 7-year old daughter who is the light of my life. I have not been diagnosed with RA. However, I have many of the same symptoms but the blood work doesn't back up a diagnosis. I am in constant moerate to severe pain. I have Degenerative Disc Disease, Fibromyalgia and Chronic Fatigue... they say. Not sure I buy all that but at least it's a reason for all this pain. I mostly have neck and back problems. My back pain was so severe that I was out of work for 9 weeks in the fall and I really thought I wasn't going to be able to go back. We need both of our incomes. I was paid through our short term disability insurance through work at 60% of my pay. We had a hard time making ends meet but everything is kind of working out. Although we are still trying to catch up. My problem is that I know I will have to go out on disability at some point. I just want to have some control this time. When I went out on medical leave in the fall I was getting worse by the day and the pain was off the charts. I was pushing myself to get through every day and relied on friends at work to help me hide it from supervisors.Then one morning I wasn't able to get out of bed, walk, sit or stand and called in sick, thus beginning the 9 weeks of leave. I am still receiving some therapies at a pain center as well as taking meds. I can get through the day at work for the most part, but there is nothing of me left for the most important part of my life, my family.

Do you know if I can I apply for disability while I am still working? We would lose everything if I had to go out for a long period of time-then apply, then wait, then get turned down then do it all over again. I hardly have any leave and I was one day shy of losing my job by exhausting all my FMLA time. (I had used time for surgery earlier in the year) So really if something happens before October when it will be a year since using FMLA , I would be so screwed. I have worked my whole life. This is really hard to even consider as I feel so insecure about everything. I just have to think of the well-being of my family. I can't even begin to think of how we would manage if I lost my job. Not where I want to be as I approach 47!

4/13/09 1:52pm

The best thing to do is call and ask them. I've had a really good experience so far with their helpfulness and compassion. I'm not sure how long you hav eto be out of work- matbe a year? But the good thing is, once you are approved, they go back and pay you for all the months you were out of work. Lets say you have to be out of work for 12 mos. Lets say you will get 1000 a month when you're approved. You do have to be out of work for a year, but once it goes through, they give you a check for 12,000 ( for the year off) plus start the 1000 a mo checks. So if you can swing it, (equity line, realtives loans, etc.) the money will be reimbursed when you are approved.

They also told me you don't have to have a diagnosis. You just need the doctor's recognition that your symptoms are so bad that you can't work, (and have been for a year). They will send you to a state Doc for your final exam, but you must have records of your symptoms with a doc for the year.

Anonymous

4/14/09 7:26pm

What you are saying is true,but watch if you have STL & use it & when you are approved for SSDI,yes you will get that money ""But"""you have to pay that money back to the insurance of STL.It took me 18 months to be approved& that was with a lawyer through my work after I tried twice by myself.But everyone is different.so good luck with you all.I didn't want to go on SSDI,& I already put in 33yrs. of Nursing.But I knew I couldn't work anymore with my DX. of Multiple Sclerosis.& I have severe pain 24/7.But do hang in there,This was back in 2002 it took 18 months,but I heard it takes 2 yrs now.

4/14/09 7:30pm

sorry to be so dumb, what's "STL"?

Thanks!

Gammaws/NaNa

4/14/09 8:23pm

You are not dumb!!!!!!!!!!!!!!But I guess I should of wrote STD,but then that could mean something else.STL is Short Term Leave(Short Term Disability) Bless you are!!!!!!!

4/14/09 8:27pm

Oh, I'm a sole proprietorship. I don't have short term disability. I'm an entrepreneur and a one woman company. I just have me and me gave out a long time ago!

Gammaws/NaNa

4/14/09 8:34pm

Rissajoy, I really like that name.I don't have STL anymore either.I am on SSDI.Sometimes I wish I was like you,me & myself then I wouldn't have sooooo many people watching over me.But thanks.

Gammaws/NaNa

4/14/09 8:35pm

Rissajoy, I really like that name.I don't have STL anymore either.I am on SSDI.Sometimes I wish I was like you,me & myself then I wouldn't have sooooo many people watching over me.But thanks.

nan

3/28/09 9:09pm

If you admit that your can't do what used to do is not giving into RA. Most of the comments seem to come from folks that haven't had this awful illness to long. So the old lady is going to tell you to keep fighting Ra and it will get better. I'm 56 yrs old and have had RA for over 30 years. I love this web site but sometime I hate the fact that the numbers of young people having RA is increasing so. My daughter and 6 year old granddaughter also have RA. But there are so many more meds now so hopefully the the disability part of this illness will drop. But having disabled joints is not the only diasabling part of RA, the being tired and the side effects of meds is just as bad. I've been on gold, methrotrexate and just about everything else. I made my doctor take me off methrotrexate about 5 years ago because I was so sick after I took my methrotrexate shot. I am now on sulfasalazine, plaquinal and enbrel. I love the the enbrel because it seems to work for me. I went of disability in 1986 and the hardest part was living on my husbands salary until my disability started. Yes, people made remarks about why are you on disability and if someone did when I was having a bad day I'd tell to live in my shoes for a day and then they would understand. So hang in there and it will better because your a strong person and we will always win in the end. Also I forgot to tell you my prozac is as important as my RA meds.

Your always in my prayers

Nan

3/31/09 7:23pm

I'm really thinking about asking for something for my nerves because they are "completely shot"!

Ellen Galo

4/ 5/09 9:37pm

I will vote for Enbrel. It works well for me, and I can adjust the timing of the injection if I need to, or if I think I'm coming down withs something. Every time I thin kI might be having something as a side effect, it is either fairly mild (sometimes annoying but not enough to stop) or not related - my doctor is good at helping me through this, even though I wasn't sure I liked him at first. He wanted to treat me more aggressively than I was prepared for at first, but I waited a bit, and found out he was right. I am Rheum. Factor positive and Anti-CCP positive as well, and already had wrist damage in the first 3 months. That was a couple of years ago. I had ankle tendon surgery a year ago - it was a longer recovery than I anticipated, but it's working out. I've had to adjust to a slower schedule and sorting out my priorities - I really know now that I can't do it all, but have found that I prefer not to spread myself as thin, and take the time to take care of myself, get enough rest, do the activities that mean the most to me, and let the rest go, as much as possible.

Good luck in getting things sorted out!

Ellen

Ellen Galo

4/ 5/09 9:40pm

The cyclobenzaprine (Flexeril) I use 5 mg to help with sleep, unless I'm also having muscle spasms, and then I take 10 mg. When my mind/brain is exhausted I take 5 - 10 mg of amitriptyline (Elavil) instead of the cyclobenzaprine for a couple of days. It's intended for pain&sleep at that dose level - at higher doses, it's used as an antidepressant. They are both tricyclics so I wouldn't normally take them together. And I don't take them unless I really need them because they can make me a little fuzzy the next day. But when my brain is fried, and my muscles start getting jumpy or spasmy - it's time.

Ellen

Brad, Health Guide

4/ 6/09 11:57pm

Country Girl,

I get where you are coming from. I was recently diagnosed myself, been in pain forever and finally got an answer after a myriad of drs. I worked 11 hour days and had a 3 hr roundtrip commute. It was literally killing me, I could not enjoy my family (although my wife is a HUGE supporter) I could really do nothing but rest up for more work. I finally came to the realization last week after my Rheumy gave me two weeks off (he is an angel in disguise) that my family and health are worth more to me than my position at work. I have paid into SSI for 25 years....and I plan on using that insurance now. I have LTD at work that just kicked in. Please think of yourself and not just who you are to whom at work. I feel much better just being off of work, yes, the stiffness and pain are stilll there, but I enjoy spending time with my family and not just being a coma victim laying on the couch on pain pills waiting to go to work again the next day. It takes some financial flexibility....but the payback is worth it!

former 25 year corp yes man.

Brad

4/ 7/09 7:16pm

What will you do if your social security disability benenfits are denied? That's what I fear. I too have LTD at work but I'm afraid if I go out on leave that the LTD will be denied and then I'll be without income.

I too am not much use at home anymore. For instance, I cut grass most of the day Saturday and caught up on house work and laundry Sunday. I took my weekly Methotrexate Sunday evening. Then, on Monday, I wasn't able to go to work. During the week I"m gone 11 hours a day, at a minimum. My 13 year old son plays baseball so a couple times a week I have to take him back into town for practice (after I've already driven 2 hours back and forth to work). We live out in the country about 20 miles from town so that's a 40 mile round trip for his ball practice. It takes me a day or two to recover after doing housework and laundry over the weekend. I'm just exhausted after the long work week.

Do you think it's hard to get social security claims approved?

Brad, Health Guide

4/ 7/09 8:40pm

I don't know how hard it is to get approved by SSD. Check with your jobs LTD. I just went on the short term one, no problem as long as my rheumy approved it, which he did. After 26 weeks that flips into LTD and then THEY help me apply for SSD. It is in their favor to push me through as it would cut back on what they are paying me. I just know that after just a few days off I feel better, not as run down, not ready to run a marathon, but better. It's worth it for me to try. We live in town, so at least stores and what not are close, but I was driving 3 hrs roundtrip, I feel your pain on that. When I first got in the car after work it felt a little better to not be walking, but then the stiffness would hit.....it's hard to win!

I hope you feel better! I will let you know what I find out.

Brad

Barb

4/13/09 9:30am

Country Girl

I have been on SSI since 1994. With the help of my RA Doctor, and the social security doctor, I was told that I was disabled. If you like working and want to keep your job, (just like I wanted to do), then the possibility is going part time, as my RA doctor told me is that I needed to be able to get up, stretch, move around and have a comfortable chair. With typing, well, I had to get a wireless mouse, a comfortable pad to support my wrist, take time to flex your joints at work. Also, I found out that my communiting to work I could close my eyes for a short time on the bus gave me a little more time of relaxation. Try a warm shower or bath when you get up in the morning or when you get home from work might help with the pain. I am on Humira, it is like enbrel, don`t worry so much about the side affects, your RA doctor will keep track of your blood work to make sure that there are no damages done by the drug. I have also been on remicade, that is an infusion drug. It worked really well, but because I had so many surgeries in between the infusions that I had a reation to the drug. The Humira works really good for me. Give enbrel a chance, and it does take time for the drugs to work. As I say, I run this diease, it does not run me. There are Lawyers who specialize in dealing with Social Security, If you get denied contact one of them. They do not get paid if they lose, but I doubt you will have any problems. As you go along with this diease you will learn when not to over due and take your time on things. My pain and inflamation has ben under control for a long time now, I have paced myself, These are the drugs I am on, Humira, Arava, Celebrex. My RA doctor prescribed nuerotins to help me sleep at night and take care of the pain. It helps. So, have a possitive attitude and you start running this diease, instead of it running you, also, about fighting off infections, it does take a little bit more time to get rid of a cold than people who do not have RA, get your shots for the flu season and for pneomia, they do help.

4/13/09 3:16pm

HOw long were you sick before getting your disability approved?

My father passed away in 2006 and I've been an emotional wreck ever since. I really feel that his death is what caused the onset of RA. Up until my diagnosis last year I had never really been sick. I didn't even have a family doctor and never took prescription medicine. Here I am today, nine months later, taking 300 pills a month, I'm sad and broken hearted, and finally realized there's something else going on. I took vacation today so I could meet with a Behavioral Health Care Counselor. I had a rough childhood and thought that I had dealt with all the pains of the past. Apparently not and the loss of my father just triggered all sorts of doom and gloom. The counselor told me she wanted me to give Cymbalta a try. I left the counselors' office and went by my rheumatologists' office. He gave me some samples to try before giving me a prescription (just in case it's not for me). I've NEVER used an anti depressant and have no idea what to expect. I do know that somethings got to give and what's one more pill a day? Do you have any advice when it comes to these types of medications? I'm just a wreck! I've thought about seeing if the doctor will take me off work for a month or so just to see if I can get a grip on life. This is all so overwhelming and I just need a little peace of mind. I feel like I'm just going through the motions of life but I'm not really living??

Thanks for listening, it's nice to have an outlet and know that you're understood.

Barb

4/14/09 4:05pm

I was Diagnoised with this diease back in 1988. Like you, my father had just passed away a year earlier.The emotional turnmoil you are going through is natural. It will pass when everything in your life starts to settle down. I was still married back in 1988, and because my ex had a good income I did not bother until I started going through my divorce in 1993, that is when I applied for SSI. I starting recieving my SSI about 7 months later when I had gone to their doctor. He and my RA doctor pushed for it. by then I had started getting the deformaties in my hands. I had been put on anti depressants back in 1993, because everything just collapsed around me. I have been taking them every since. I am now able to have a possitive attitude towards things in my life, including this diease. Also when you have a good counselor, (that will listen and help you) along with a good repor with your RA Doctor, you will find that things will start to become calmer and easier to deal with. I am not going to lie to you and say that everything will get easier along the process of this diease, it`s not. I had alot of help from very supportive peole in my life. My new husband of 2yrs now has been the best support for me. My last Ra Doctor went through alot with me for twenty years, he helped me through my divorce, the coustody battle for my children, the death of my mother, the suicide of two nephews. Without him and my counselor, and family I would still be a total mess. Yes, the anit-depressant will help you alot, if your councelor gets you on the right one. Please do not give up. What also helped, my doctor and my counselor had me write down on a piece of paper, and put it where I could see itwhen ever I started getting down was," I run this diease, it does not run me". Try it and see if it helps. I hope I have helped you.

What's wrong with me?

4/17/09 3:37pm

After a year of wondering what the *&$# is wrong with me and stumping 7 specialist, TODAY I got the results of an MRI on my hands confirming RA (both blood tests were negative). I'm already taking 15 pills a day and 19 on Sundays, having been on Methotrexate for almost 4 weeks. (my 2nd Rheum Dr. was pretty sure it was RA). I wanted to let you know I take 60 mg a day of Cymbalta and didn't realize it's value until recently when my prescription ran out and I didn't get it refilled right away. Mid-afternoon on the first day I didn't take it, I became a sobbing mess. fyi - I'm 50 with 4 boys. I'm lucky to work as my husband's office manager and my boss/husband couldn't be any more supportive so I'm very lucky. I personally think it's more than RA because I get jabbing nerve pains on my arms, hands, legs, and feet and know that that's not a symptom of RA. Does anyone else have such pain?

Scrizzy

4/27/09 12:58am

Stabbing pains? Ih yeah - sounds like neuropathy. I take Cymbalta too. I had a large foot neuroma, and wow. This pain is REAL, you poor thing. It is REAL.

Scrizzy

Anonymous

4/12/09 7:45pm

Try to find Rosehip tablets (Litozin). You can order them from England. Those tablets saved my mother.

Ruth

4/14/09 5:32pm

Hang in there - it took @ 6 months for me to get the full effect of the Methotrexate. In addition, a different NSAID - (I take Mobic - Meloxicam twice a day) might help. (Even Motrin worked better for me than Naproxyn.) Also some natural stuff - cherry extract, vitamin C (a natural Prednisone).

Ellen Galo

4/20/09 3:22pm

Not sure what you meant by that... VItamin C is ascorbic acid, it is not a steroid. It is important to the immune system though. (I actually read that people with autoimmune diseases may have to be careful taking it because it strengthens your immune system and therefore might make symptoms worse, if the immune system attacks your body more. But I think that's open to debate.) Human beings can't make Vitamin C, that's why we have to get it from food. Vitamin C is important for healing, too.

Prednisone is similar to certain hormones in the body. When someone takes prednisone or any steroid, the body may cut back on its own production of the hormone. That's why you can't go off suddenly, you have to taper off. Prednisone suppresses the immune system, that's how it helps - by reducing inflammation and swelling, but also makes you more susceptible to infection.

One thing my rheumatologist insists on is getting flu vaccine every year, and pneumovax (vaccine against bacterial pneumonia) every 5 years (that's how long it lasts). You could still get viral infections such as colds and viral pneumonia, but it's not clear whether Enbrel decreases the resistance to that. I don't get colds any more often than I did before (in fact, I think less). It does irritate my sinuses and sometimes my throat, but there are ways to deal with that.

.

Ruth

4/20/09 4:31pm

Correct - Vitamin C is ascorbic acid - which works like a 'natural' prednisone. It reduces imflamation, acting 'like' prednisone. It is not contraindicated with arthritis. Your body will only use what it needs - per doctor and pharmacist input, start with 1000 mg a day, work up to what your body needs, increasing the dose by 1000 mg a day ever 3-4 days. Your body will tell you when you are taking too much - it will cause mild diahrea. When that happens, back off by 1000 mg. (You cannot overdose on Vitamin C like you can some others.) Initially I was taking 10,000 mg a day, but am down to 6000 a day. If not taking a timed release Vitamin C, spread it out to 2 or 3 times a day.

If an individual is getting enough Vitamin C in their diet, the intestinal distress will happen at a low doseage. Most of us are not getting enough Vitamin C anyway tho, and higher doses can provide significant relief after a period of time. (2-4 weeks should show some difference - it did with me.)

It is important to treat any arthritis by all possible means - so it is very important to have a doctor who is familiar with natural and alternative treatments, and willing to include them in your treatment plan.

Take care!

Ruth

Julie

4/22/09 1:42pm

I feel your pain... I'm sorry that you have not found relief yet. I can relate. I've had RA for over 18 yrs and have tried Embril and most all of the other medications with little or no benefits. My daughter is 24 and has had RA for 10 yrs and has been on Embril for about 7 and it works wonderfully for her. The doctors have to go step by step with the medications to find the one that works best for you. I've found the best relief with Presnisone. I know that there are risks with the drug but for me the relief of not hurting and having a pain free life outweighs the long term risk.

I too reseach and question each medication and encourage you to do so also and do what you feel is right for you. I watched my sister deteriorate with RA over 25+ years as she was not a candidate for most of the new meds do to lung disease. I personally think that after research, for me, the risks outweigh the benefits. I can always stop the medication if it does not feel right or does not work but I cannot reverse the joint damage.

I also don't know if you've looked into testing for food allergies which can cause auto immune responses. I found that I am intollerant to Gluten and eggs. After elliminating these foods I found that when I cheat and eat any of them that I have a horrable flair up. I still have pains from RA with elliminating these foods but it is much worse if I eat them. Just a thought.

I wish you the best and hope that you find a medication that works for you. Life will get getter when you find relief. Everything is going to be alright. Take care of yourself first.

Julie

judie cunningham

4/23/09 5:39pm

Hi countrygirl

I've been on Enbrel for amost a year. And doing akay on it.

I still have my good days and bad, but with enbrel I have more good days

So don't be fearful about enbrel. All the meds we take has risks. but we still

take them.So we can some kind of life.

So as my father says " take life by the balls, we don't have alot of

time on this earth

01titansfan

4/27/09 1:32am

I also had pretty much your same symptoms & then I started on HUMIRA. LOVED IT! IT changed my life. Within a week, I had more energy. Within a month, I pretty much had no symptoms at all! When my insurance changed I went on Enbrel it it was okay but didn't as well for me. I am also a rheumatology nurse & I know that some people are just the opposite. Side effects can scare you but the only side effect most of our patients, including myself, had was the lowered immune system. So basically I had the sniffles every couple of months.I can live with that as long as I felt like being able to get off the couch! And before HUMIRA I struggled to get off that couch! Now, I have no ins. again and my RA is so bad I haven't been able to work for a year. make an informed decision, know all the facts, talk with one of your doctors pts. that is already on it. If it was my choice, I'd be back on it in a heartbeat, and have my life back!

4/27/09 10:54pm

I hope you read this tonight. I also have no insurance and was taking Humira. I THOUGHT I made too much money to get any kind of assistance for the medication. I waited one whole year without taking anything for this RA and my God have suffered so badly...I applied for the Humira (Enbrel has one as well) Patient assistance program, it only took one week and they approved me for a whole year of Humira for free! It will save my life, I cannot do without it. Please if that's what's holding you back, go on line and get the information for Humira or Enbrel, fill it out have your DR sign it and fax it! We made $56,000 last year and still qualified for free medications. Please for your sake try it...Good Luck to you, I/we all feel your pain

01titansfan

4/28/09 6:58pm

THIS IS 4 TWO PEOPLE OUT THERE... the first is for the girl that was worried about starting Enbrel...If all this info hasn't helped, then try it for a few months & see how you feel? Everybody that has already been on it,including myself, seems to think the being able to function sure out weighs the side effects! believe me in this- for the people who have really bad RA symptoms, you'll try just about anything to feel close to normal again! And if you start feeling good again-those scary side effects on the product just don't matter that much any more! I think most who suffer really bad will agree. SECOND is for the person who told me about the free Humira or Enbrel, THANK YOU!!! I've been off all meds except ibuprofen for almost 2 years and you can imagine what my life [or lack there of] has been like! So, THANK YOU THANK YOU THANK YOU!!!

4/28/09 8:40pm

Hello, I will introduce myself so we can just talk to each other. My name is Angie, i'm the one who told you about the assistance program for Enbrel and Humira. PLEASE let me know if you cannot find the link to these programs and I will send them to you. DON'T BE AFRAID...I too was off the Humira for 1 year and swear was nearing the end! NOT ONE OF US can deal with the pain of this! There is no reason why we should, we did nothing to our bodies to even ask for it...Please keep in touch, I get my shipment of med's this Thursday and trust me im gona be waiting for UPS to get here, I will probably look like a heroin addict waiting on the curb!. Good luck

Angie

01titansfan

4/28/09 9:37pm

Angie, please send assistance sites to 01titansfan@tds.net. I'm horrible with computers & only type with my two pointer fingers. Somehow got by forty something years without owning one until 6 weeks ago & since I haven't been able to work in a while, haven't been on one in awhile. I'll explain more later but will be back to email tomorrow. IF you don't have time tonight or tomorrow, send when you get a chance. I really do appreciate it. Life with RA sucks! Laurie

5/ 6/09 3:48pm

Wondering how you are and if you were able to get the website I sent to you. Keep in touch

Angie

5/19/09 3:21pm

Well, I got sick with the crud Easter weekend so I didn't take my weekly Methotrexate and much to my surprise, I felt like a human being again. I didn't realize how low I was both mentally and physically. Methotrexate just sucked the life out of me and I haven't taken it since the weekend before Easter. I go to my rheumatologist in the morning for my normal scheduled visit. I'm going to tell him that I've quit the methotrexate and that he can start me on Enbrel. I'm still taking 2,000 mg/day of sulfasalazine and 1,000 mg/day naproxyn but I'm just not going to take the other. I just didn't have any energy at all and I stayed in the recliner when I wasn't working (or in route). I've always been "very active" and to lie around doing nothing just isn't me. I'm still hurting (and just can't get rid of this burning sensation in my feet, hands and wrists) but hey, I was hurting anyway and at least I'm not completely on rock bottom with the fatigue and sadness (I think it was a side effect of the Methotrexate).

Anyhow, thanks for checking on me!

5/19/09 3:26pm

Well, I got sick with the crud Easter weekend so I didn't take my weekly Methotrexate and much to my surprise, I felt like a human being again. I didn't realize how low I was both mentally and physically. Methotrexate just sucked the life out of me and I haven't taken it since the weekend before Easter. I go to my rheumatologist in the morning for my normal scheduled visit. I'm going to tell him that I've quit the methotrexate and that he can start me on Enbrel. I'm still taking 2,000 mg/day of sulfasalazine and 1,000 mg/day naproxyn but I'm just not going to take the other. I just didn't have any energy at all and I stayed in the recliner when I wasn't working (or in route). I've always been "very active" and to lie around doing nothing just isn't me. I'm still hurting (and just can't get rid of this burning sensation in my feet, hands and wrists) but hey, I was hurting anyway and at least I'm not completely on rock bottom with the fatigue and sadness (I think it was a side effect of the Methotrexate).

Anyhow, thanks for checking on me!

insenwit1

4/27/09 2:56pm

Hi,

I understand your painful situation as I am living with it myself. Well, I was on methottrexate and celebrex couple of years back, and then my liver function testes were very high. So I had to think of alternatives. I started with Humira, and worked very well, and my pain improved after couple of months. However after 1 and half years, my body developed a resistance to it. So now for the last few years I am on Enbrel. It has really worked out. I was off it when I was pregnant and breast feeding, but now I am on it again.

Please feel free to email me for any questions : insen_1@yahoo.com.

Take care,

IS

4/27/09 10:41pm

Im sorry you to have been diagnosed. I have had this RA crap for 23 years now, have taken every drug there is out there. My advise to you is to hit it hard now! Don't wait like I had to and go through all that pain. GET ON THE HEAVY HITTING MED'S! I used the Enbrel about 4 years ago and it truley was a miracle drug for me. Now I've switched to Humira, im not sure if it works as well, but it does the trick. If you don't start now, you will be hurting for a very long time. This stuff sucks bad. It's a pain that no one can describe to their loved ones...they just don't get it unless you've felt it for yourself...STAY STRONG