thoughts

6/24/09 11:17pm

Hi

Have you tried Remicade, its a infussion either done at your RA Dr. or Hospital. I go to the Hospital it takes about 2 1/2 hrs. I've been on it now for 2 yrs, before that I was using a walker &/or cane. I also take meth-ate 3 tabs on Friday was on 6 tabs but have been able to drop to 3 and going to try and drop down to 2 tabs this summer. Oh I get Remicade every 8 wks. I have 2 nodules on elbows and arm thinking of have surgery on them. I know all about family and friends not understanding the pain. I've had RA over 15 yrs now still have pain. good days and bad days. but over all with Remicade I'am having more good days. I also take zoloft for depression. and when I feel really down I always remind myself that someone out there is worst off then I. And I only talk of good days and not the bad ones. Frame of mind is powerful.

Lift yourself up only you can do it.

I hope this helps you.

Keep in touch

Debbie

Sarah

6/24/09 11:21pm

I havent even heard of that infusion type method. Thanks for your advice. It is nice having people around who are dealing with the same issues.

Take care

Sarah

Mary

6/25/09 12:43pm

Have you had a really heart to heart talk with your RA Doctor? He should be able to help you better than what you are going through, I would hope! I also take Remicade and it is a God-send...The pain is totally controllable now along with methatrexate (8 @ week) and Prednisone (2 @ day)....Keep your head held high and you can beat this...Pray every day, it helps too.......

Good Luck

Ellen Galo

7/ 1/09 12:04pm

Hi Sarah,

There are an increasing number of articles on teh web and in medical journals about NOT WAITING to start Biologics as treatment for RA because serious damage can occur within the first two years. My doctor was very aggressive (at first I thought too aggressive, now I'm glad!) and I didn't want to hear that. But I had serious wrist damage in the first couple months of RA. Although I didn't like Remicade for side effects (it really works well against inflammation however!), I have now been on Enbrel for over 4 years and doing well.

I don't know the situation exactly in New Zealand but seem to remember reading an article generated from there about the need to INCREASE the use of biologics to avoid that early damage. If I find it, I'll send the link.

E

cecilyrbornemann

6/25/09 10:42am

I know exactly how you feel. My dad thinks it's mind over matter. I can't get out of bed sometimes either. Although at one point my upper body ached to, we seemed to have that under control for now. It's my thighs all the way down to my ankles which just recently became swollen and have no idea. I call my dr practically every day because a new situation arises, I'm sure she's getting sick of me but that's what they are getting paid to do. She referred me to a pain specialist and I can't see her until July 9th. I'm depressed too like you. I'm on disability for the depression. They're are doing a review of my Social Security case and I'm pretty sure that I'll continue to get it with my new diagnosis of RA, OA and Fibromyalgia. If you ever want to chat, just post me back since we're not supposed to include personal information about each other. Have you thought of joining a support group. I am going to but it's on hiatus right now, isn't that always the way when you want to do something you have to wait. I'll be praying for you.

Cecily Bornemann

Debbie

6/25/09 11:11am

Hi Sarah,

I know how you feel for sure! I unfortunately took the Remicaid spoken of and had a horrible reaction in Feb. I lost all of the skin on my feet and hands. I was put on large doses of Prednisone and then back on Humira and methotrexate. I was already on antidepressants. In the beginning, everyone felt sorry for me and wanted to help but it has been months and each time they try to lower the prednisone I lose the skin on my feet and hands again. So now I have psoriatic arthritis as well. I am tired most of the time. I cannot do the things I used to do. I find myself avoiding being around people when I am having a bad day because I know they are sick of hearing about it but then again I think to myself - what do you think it is like living with it???

The Humira and methotrexate are working right now - as well as Celebrex - I am having more good days and I am trying swimming and I am going to sign up for yoga when my feet heal. I believe if you can find at least one good friend or family member that will just listen to you when you are down - it helps a lot. I am blessed to have my sister. On my good days I make it a point to get out and if I can help someone else who is down it makes me feel better about myself.

No one will ever understand the pain unless they have experieced it - I have a husband with frontal lobe dementia and as hard as he tries to be supportive, his illness makes him say some pretty ridiculous things and he will try to compare some of his experiences with mine - on a good day I can laugh - others I want to choke him .... You are never alone though - there is always someone out there!

Joan

6/25/09 3:05pm

Hi there - I am so sorry about your pain with RA. I have had RA for many years as well and sometimes just feel like throwing in the towel. At times there is no let up in the ongoing struggle. But I should say I have been on Humira now for a few years and it has helped tremendously. Before that it was Enbrel. I don't take Prednisone, too afraid of all the tremendous side effects. Ask your doctor about putting you on one of the Biologics because they really do help. Plus, I might add, I do take a opiod (narcotic) for pain if need be.

I'm here if you need to talk.

Joan

Lene Andersen, Health Guide

6/25/09 11:23pm

Oh, yes. Depression comes with this illness, especially when you don't have adequate pain control. Things can get very dark at times, especially if you're dealing with the disease on your own. Connecting with other people who know exactly how you feel and what you're going through can be a lifesaver and I'm very glad that you've found this community.I'd suggest you check out our area for the newly diagnosed - you've lived with this for a while, but that area has lots of good posts on the various aspects of living with RA that may be helpful to you.

I've lived with RA for over 40 years and can tell you that it's not always like this. The most important thing you need to do is get your RA suppressed by a good DMARD (disease modifying antirheumatic drug) - talk to your doctor about the biologic drugs like Remicade, Enbrel, Humira, etc. Once you get your RA treated and some good pain control, you'll be able to go back to your life. Hang in there. It will get better.

01titansfan

6/26/09 1:55am

I can't believe you have had RA for 4 years & your doc doesn't have you on a good DMARD! Of course, I'm assuming from what you said, especially not knowing what remicaide is. It was the 1st drug with hope for us. It's been around for probably 8 years now, maybe longer. There are many more. In fact, even though it works for many people, its almost outdated compared to all the newer ones! I was on Humira for a couple of years & it changed my life! I even lost 40 lbs. because I became so active on it. I wasn't use to feeling like moving off the couch or bed before Humira & packed on the weight. As you probably know the worse thing an RA patient can do is quit moving & get fat bacause it's more for us to carry on our screwed up joints! And exercise also keeps us mobile. The moral of this paragraph is look for a NEW rheumatologists! Even if you have to drive to the next big town to find a good one, It WILL be worth it! Okay, that was the rheumatology nurse speaking, Now the RA pt. speaks...I'm also miserable & getting more so by the day! I'm out of room will con't

01titansfan

6/26/09 2:24am

con't from before.....As a pt. I haven't been able to work for almost two years{after being a nurse for 22 years}I got hurt @ work, had to have several operations & then my employeer terminated me for being out so long, go figure? Anyway, the insurance went with the job, I know longer could afford to see my rheumatologist every 2 months & he refused to work with me on this, So there went the Humira! I had to move in with my 70 year old Mother who not only is a horder & has 5 animals living in the house, but she tells me @ least once a day that she hurts worse than I do because her Fibromyalgia is worse than my RA could ever be! So no, not much support here & my Son tells me, Mom, It's Mind Over Matter! Get Out & Start Running! I guess I could try on my crooked swollen feet? THE MORAL... Yes, RA is depressing & it hurts & some days you can't get out of bed & we don't get the support we need, but find a good Rheumy with good drugs! Somebody always has it worse! Quiting is EASY, It's keeping on living that's hard! Good RA drugs & narcotic pain relief also helps the depression!

Sarah

6/26/09 2:26am

thanks 4 sharing ur story x

Ann333

6/26/09 10:24am

Hi Sarah,

I also know how you feel. Before I was on Remicade a lot of my family members kept suggesting I exercise. How in the world could I do that when every little move I made was so hard? They did not get it. Remicade has been amazing. My life is pretty much back to normal. If you aren't getting any relief from your current rhumatologist I would say find another. There is help out there and we are here to listen anytime you need it.

Take care,

Ann

gisela

6/27/09 10:27am

TRUST ME YOUR NOT ALONE I FEEL YOUR PAIN. IM IN PAIN AS WELL SO WE HAVE TO GO FOWARD AND SEE THAT WE MAY NOT HAVE IT AS BAD AS OTHER . IM ON METHO AND ENBREL AND PRED. IT HELP A LITTLE BUT THATS OK. I LEARN TO DEAL WITH THE PAIN.

KrazyKat

6/27/09 11:53am

Hi Sarah: When I read your post I thought, "Oh I know just how she feels. It could be my post." I too have been dealing with RA for about 5 years now, the first 2 years un/misdiagnosed -- you know, "it was all in my head." When I finally got correctly diagnosed I thought thank God now things will be better. Nothing could have been further from the truth. I had so many bad days, bad flares, days I just wanted to give up, but I didn't. I still have some bad times and if I hear one more person comment, "I have arthritis too" when they have no idea what they are talking about, I think I am going to scream out loud! ARRRGH But here are some things that have got me thru:

First, find a supportive, compassionate rheumatologist who will work with you and listen to you. If you already have one, great! If not, leave the one you are with and find one who will commit to you and not give up on you. Ask friends, colleagues, contact the Arthritis Foundation. I love in central NJ and see a wonderful rheumy in Willow Grove, PA so if you're in my area let me know and I'm more than happy to share his name/number. This is so so important I cannot stress it enough. I made the mistake of seeing a rheumy who would not treat me until all the "signs" of RA were present (I was sero-negative in one test so she waivered). Big mistake on my part because I suffered much damage during that 1 1/2 year period because of not being treated.

Second, find a support group. It may or may not be your family members. It took my husband a long time to come onboard with my illness. I think he just didn't want to believe it -- didn't want to believe I was chronically ill and that we needed to find a new normal. Again, reach out to the Arthritis Foundation. Don't be afraid to talk to people about your illness -- it is nothing to be ashamed of. You didn't choose it, it chose you. You are still the same wonderful, beautiful, strong, talented woman you were before. I can understand if you don't want to talk about it at work so you decide what's best. It took me a long long time to discuss it with my supervisor and ask for his help so that I could stay a productive member of his team. Also, talk to your primary doctor, especially if your feelings of depression don't lift. You may need to be on a low dose antidepressant for a while -- no biggie.

Third, get up and move. I found out that laying around was my biggest enemy. So now, even after double knee surgery, I get out and walk around as much as possible. Join an arthritis exercise group at your local Y or health spa. Get a massage, try Tai Chi, swim, try acupuncture, experiment with different things. It will give you hope but don't crash if some of it doesn't work -- just keep at it. Don't give in to this damn disease. You will find something that works, trust me.

Fourth, if you're not already on meds, get on some. Do your research, check out the internet, ask your doctors, post questions here. It has taken me many different meds to finally find a combo that works for me. I'm currently on Remicade and Plaquenil (can't take Methotrexate) also Gabapetin and occasional pain meds (Darvocet) and anti-inflammatory (Etodolac). I used to resist taking so many meds but realized that I need to do what is best for me now so that I can have a life. I know that without these meds I would be in a wheelchair and on SS Disability benies. I don't want that, I'm only 52 and I want to live my life now. So consider your options and make sure your rheumy isn't too tentative about treatment. You have to be in control of your treatment plan -- advocate for yourself -- it is very empowering to be in that position so don't surrender it to anyone -- even a doctor.

Fifth, find strength in your faith, whatever that might be. I am a Christian and I pray to God all the time for strength, courage and comfort. I was angry with Him for a long time but now I came to realize that this illness has actually been a blessing since it has brought me closer to my Savior, a Man of Sorrows. This is what I believe -- reconnect with your faith and what you believe. It can be the single most important advice I can give you.

It took me a long long time to accept my chronic illness. I didn't want to believe it, didn't want it, I didn't want to take meds. But with the help of my doctors, my family and my Lord, I have come to grips with having RA. I am still frustrated, get angry, cry, hurt, feel sorry for myself -- but I don't stay there. Like I said before -- RA cannot win, I will not let it. I pray that you will not let it too. I pray for your comfort and relief and that you find people in your life that will guide and support you and love you even on your toughest days. The people on this site and many other RA support sites understand what you are going through, you are not alone. We love you so please remember you can always reach out to us. God bless Sarah.

Ellen Galo

7/ 1/09 11:24am

Krazy Kat,that was a great post! You might think about making it into a sharepost...something like "Don't Give In! We're in this together ..." You have something to offer!

Ellen

KrazyKat

7/ 1/09 6:20pm

Wow! Thanks Ellen. That's a great idea if I can figure out how to do it! lol Thanks for your encouragement and I'm glad it was helpful to you and Sarah and might be to others. I just wrote it from my heart. God bless, Cynthia (KrazyKat)

Sarah

6/27/09 6:03pm

i just wanted to say thanks fo all of your advice and support it is comforting to know I am not alone any more.

Sorry I can't write more but I am flaring a lot and my hands hurt.

take care all of u

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