I have no idea what is going on or anything. I feel like I am really loosing it. I am scared about the meds and why does it take so long for them to work? The Dr just put me on some kind of Plaquinil (sp?). I don't remember the whole name nor can I say it. The side effects are horrid. I hope just being around other people who have the same thing will help and can maybe teach me how to live with this.
Thanks
Cheryl (Just diagnosed last Thursday)
So sorry you are having a tough time. Maybe it will comfort you that most of us have been there or are there, especially when navigating through all the medicines.
One thing I've learned about side effect warnings is that even though they are quite scary, they are given to us by doctors who, hopefully, are monitoring us for anything untoward. I cried and cried when I had to add each medicine...especially the DMARDS and biologics...because it seemed that the meds were as bad as the RA! But my doc has been great, answering my fears, and telling me what she has experienced with her patients. She has never had a patient develop lymphoma, for instance, from taking a biologic.
That being said, if you are having bad side effects from Plaquenil (I take it as well; no problems here), please please let your doc know and get feedback. Sometimes side effects are 'transient',meaning you just have to deal with them for a while, until your body adjusts. Other times, you could be having an allergic reaction. Either way, please keep your doctor informed.
I kept complaining about my Humira, thinking it was causing flares. In fact, I now believe that I was just flaring and the Humira hadn't 'kicked in' yet.
There are so many things happening on a cellular level with RA, which is why we are given so many types of medicine. Plaquenil will affect one aspect, another med will do another. Are you also on Methotrexate? What other meds are you taking? And what kind of side effects are bothering you with Plaquenil?
Keep coming back...learn as much as you can. Write anytime if I can help.
tess
The scary thing is I take my first pill tonight! I don't know what it is going to do? He has also given me the valatren for my stiffness that works great. Just can't use it much. Thanks so much everyone for being here and talking. I am sure you understand how important it is to connect with others with the same thing. Thanks again Cheryl
PS by the way I live in northern Texas North central Texas is anybody close?
First of all, take a deep breath. In through the nose, out through the mouth. Repeat a couple of times until you feel calmer.
Getting this diagnosis is hard. It's a relief to find out what's going on, but it's also hard because now you have a chronic disease. I have lived with RA for 42 years and I am here to tie you that you can still live your life. You are going to do things differently than you would if you didn't have RA, but your life is still there to be lived. And sure, sometimes your life is going to be hijacked by the disease, but there are really good medications out there that have changed prognosis of RA significantly and there is every possibility that you will be able to get back to things once your RA is suppressed.
Plaquenil (pronounced Pla-kwe-nil) is a medication that is on the lower rungs up the ladder of treatment. Doctors will usually start you on medication such as Plaquenil or methotrexate, because you want to make sure that there are places to go if they don't work or if after they have worked for a while, they stop working. Although meds like Plaquenil and methotrexate take a while to kick in, they can work well for many people for years. Looking at your information package or on the Internet about the side effects of medication can be really scary, but keep in mind that the drug companies have to list every possible side effect that have been experienced. It doesn't mean that you will have those side effects, in fact, for most people, the side effects are manageable. The way I look at it is you have to ask yourself what is your life worth? Without effective control of your RA, things aren't good, with effective control, you can get back to working, dancing in the living room, being there for your family, going to school, etc.
I'm going to give you some links to resources that might be helpful for you - in my experience, information is power. Having a chronic illness means that you need to become a very informed advocate for yourself and it will help you take control of your life. Check out our section for people who are newly diagnosed for posts on dealing with the emotional and practical aspects of the disease. Last year, I interviewed M.E.A. McNeil, the author of The First Year with Rheumatoid Arthritis, which is a fantastic book, not just for people of just been diagnosed, but for those of us who have lived with the disease for a while. You may also want to check out a post I wrote on how to manage side effects. And remember, you're already ahead of the game - one of the most important things about living with a chronic illness is finding a community of people who know how you feel. Welcome to the site and to our community. We're glad to have you
Hi there. I was told by the Dr. today that I probably have RA due to a positive blood test...I am now waiting for a specialists appointment. I have pain/stiffness in my hips and an overwhelming level of fatigue.....does this sound like RA? What will the specialist do? I too need your help.....thank you.
I don't know what your DR. will do, but before mine made a decision he put me through a great abundance of test and x-rays then started treatment out slowly. I hurt so many places but then others don't. I seem to hurt all the time but others have flare ups. I have also heard that red meat can set those flare ups off. Like I said I am new here so we will learn together.
Are there any of you that feel comfortable saying where you live? I live in North Central Texas about 60 Miles north east of Dallas. Cheryl
Hi Cheryl, I live near Jefferson, TX.
Yes, I have the dreaded RA. Been doing my best to ignor my pain and stiffness for these past 15 months since being diagnosed.
I do not take anything other than Tylenol 8 hr. for what seems like my mostly more-on-than-off flares. I'm becoming aware that my ailments are certainly progressing.
I would subject my self to even worse problems, however, if I took RA prescription meds because I also am a H-A survivor (4 stents) since April 2003.
I'm to understand RA meds and my must-have heart meds conflict.
I read here all of the time that it is important to try to stay ahead of the joint-damage issues that are to be expected.
The odd thing about it is since I know taking Dmards and RA drugs isn't an option for me, I tend to think well, #&*@! - I might as well deal with this the best way I can.
I b*tch when I need to and feel sorry for 'me' other days, then evenually sigh and tell myself "Prevail"; get over it because I've got other more important things to do ..like remembering my responsibilities to my family but really more-so to all of our delightful, needful, rescued small animals (my babies).
I believe all these *five doggies and *twenty-two 'catties' are my gift.
When I'm sure each and every morning that I won't be able to get out of bed to do a damn thing because of 'RA' .. 
I do it anyway. I just somehow find myself hobbling around to the shelters, feeding, litter-cleaning, adjusting the a/c or heat settings and cuddling each of my 'purries' seven days a week, without believing there's a choice. Each pre-dusk, it's all repeated.
My DD cares for and plays with our five dogs every day and always helps with flea/worming treatments for any pet, when needed.
Please, don't misunderstand, I'm really not wishing to toot-my-horn.
I am somewhat amazed that I keep going myself with my limitations being what they are.
I maintain a mostly healthy lifestyle, eat well, move around as I'm able, rest when I must, relax with a couple of wine-coolers later in the evening.
I suppose I actually have this personal, defiant challenge going on with this miserable disease ...simply put (you can't have all of me you B*s#%#&)!! ..I work with what's left ..lol.
So, Cheryl I would hope that we each find our way, whatever that way may be, to cope with the pain, stiffness and the woes of RA through meds, religion, self-hypnosis (?) or maybe the mutual sharing of friends we meet online.
You'll discover soon that we share our good days and bad days together here.
Be brave ..and stay informed~!
Sorry you are in a scary position right now. I was diagnosed in August and it has been a struggle to find the right meds and I am still not there. The side effects are frightening and also the chance of allergic reaction and then the fact that it might not work. I have experienced all of this in this short time. I do, however, see the silver lining. I feel much better than I did at time of diagnosis and as long as I keep a good communication line open with my rheumatologist I will feel alot better. I am new to this site but already I feel like I'm not alone and it helps to read that other people feel the way I do not just physically but emotionally as well. So good luck and we are here for you through whatever your journey may bring.
Hello Cheryl. I have RA for 1,5 year and I'm not scared anymore. You just have to get used to live with it. Think like you have a new and unknown challenge every day. It is hard to live with RA but people live with it for decades.
I live in Europe but thanks to Internet we can exchange our experience. At the begging I had a huge problem as I was never ill before (I'm 42) and I didn't know where to start and what to do. I've been diagnosed RA very quickly and all my troubles had just started. My therapy was methotrexate and delagil (for malaria). But the side effects were terrible in mu oppinion: I've lost 7 kg in a month, I had everyday severe headaches, sickness and my eyes got rapidly bad. I've decided to change something, so I tried homeopathy treatment. I feel better and most of the things I can manage myself without anyone's help. I don't tell you you should change your therapy, expecially as it is just a beggining. But take a time and go through the internet for some alternative medicine. The problem is this is auto-imune illness and one medication can help me, but maybe it can't help you. So, got to the Internet, visit different sites and forums and gather as many info as you can, and only than decide what to do next. Believe me, I learn every day something new.
And, please, don't be teriffied, there are so many of us to give you support.
Hi Cheryl,
Yup it's Denise I'm glad to see you here. I was just told my RA is out of control. Blood test showed the RA was 173 when normal is 14. I've been on Enbrel and Sulphasalazine for 2 years but it seems the Enbrel has stopped working. So I'm pretty bad off right now for pain and fatigue. I have a new med coming but not much hope that it will work since its the same type as Enbrel. But I can pray! I'm doing as much pain meds as I can. I'm ppretty much home bound at the moment. I hope that the meds you have are working for you. Please come back to this board and let us know. I have had RA for 4 years now. so there is no guarntee that one med will work forever! Take care
Denise
Hi Cheryl,
I was diagnosed w/ RA in April 2008. I was scared to death and was devastated to hear that there is no cure for RA...I've never been on long term medication or had anything wrong with me in my entire 38 years of life. My first thought was...this can't be happening to me...I didn't have this thing a few months ago and I was not willing to accept that I have to live with it for the rest of my life...or at least w/o a fight. My condition was getting worse quick & I was in pain everyday. I immediately did research on RA and wanted to try natural medicine first...for fear of long-term effects from toxic medication on my organs & immune system. My first RA doctor flat out told me a year ago that there is nothing natural that I can do and there is no cure. He literally scared me to death by saying "You have a window of opportunity...once you have bone damage, there is nothing I can do for you". I only saw that doctor twice, but trust me I heard that "you have a window of opportunity" in my head everyday as I struggled with the pain & trying to keep positive & consistent w/ the natural medicine method (it doesn't take effect over night). I've had people w/ RA tell me to learn to live with it because there is nothing you can do, people told me all this stuff I'm doing was a waste of money & that it won't work....so trust me I was very scared, but stuck to what I felt I needed to do in order to give my immune system a chance. I did take Celebrex for inflamation for 10 months because you have to minimize inflamation in order to avoid joint damage.
What really made me feel better & helped me understand RA is the book called "The Arthritis Bible" by Craig Weatherby & Leonid Gordin, MD. Also, the vast information on the Arthritis Foundation website www.arthritis.org. It also gives you info on medication & supplements...plus books are available for purchase.
My primary doctor did send me to another RA doctor who was willing to work w/ me while I tried the natural medicine. Last August, I went to a medical doctor who practices natural medicine, Dr. Asa Andrew, in Nashville. You can visit his website at www.drasa.com - he also has a syndicated radio talk show. I recommend reading his book "Empowering Your Health" and "Foundational Food Guide" which list the approved & unapproved foods for the anti-inflamatory diet (this is good all and not just RA). I went through his program at his clinic and changed my life. In this program, I went through a series of detox, 85-panel blood test to determine deficiencies in my body (which dictates the supplements I needed to bring my body back to balance), and changed the foods I eat - stay away from: gluten, wheat, processed & fake sugar, dairy & soy as well as processed foods and foods w/ additives.
I was trying to build back my immune system...repair & balance the cells...in order to have a proper functioning immune system which doesn't attack its own body. Cells in your body regenerates everyday and we have to provide the means for our body to generate healthy cells....thus eliminating toxin & intake of proper foods & supplements.
All that was exhausting and life changing, but it changed for the better because I've never felt better...I feel like I did 20 years ago. I'm completely off medication now...still eating proper foods & taking supplements...I have no symptoms what so ever...not even the slightest stiffness in my hands....and what a wonderful feeling it is. I look back at how scared I was, the pain that I was in and the people that scared me to death...I thank god that he gave me the courage and strength to keep on doing what I was doing even when I didn't know if and when it was ever going to work. I just knew that I had to be proactive about my own health & fight it before accepting the fact that "I had to learn to live with it". And now I don't have to live with it because I've got my life back.
I'm not telling you to jump up and do natural medicine, but just wanted you to know that there are alternatives and there is hope...as well as give you some info on reading materials that was so helpful to me through my RA experience. I wish you all the best & my thoughts are with you.
P.S. One quick note - The Arthritis Foundation recommends taking Omega-3 w/ EPA of 1.6g twice a day...the only one I found w/ that high EPA (1.5g per serving) is Nutrilite Ocean Essential Joint Health - you have to get it through quixtar (www.quixtar.com).
Hi I am on Plaquinil and methotrexate+ now prednazone because my inflammation isn't going down fast enough. The meds are a bummer to begin with, I am hoping as this flare gets down to have my meds reduced. I am scared of the biologics (stronger meds) too but I just graduated with an art degree and my Dr. says that what I am taking now is just for the pain and swelling etc. and if I want to be able to use my hands as the desease progresses we need a stronger med to slow down the progression. ;( I have only been dianosed about a month ago. I just wanted to let you know there are a lot of us rowing this leaky boat and we just need to stick together and come here for support.I share your apprehendsion but know I have to try to get well or it isn't going to happen. Take care and yo can email me directly if it helps.
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Good morning Cheryl,
I too am scared to death of medication, however, I was diagnosed with RA 9 months ago and I'm currently taking 300 pills per month. Your doctor will probably prescribe Prilosec or Nexium (in addition to your other meds) for your stomach (if he hasn't already), RA medications are pretty rough on the stomach and these meds will help. My heart just goes out to you and I know how scared you must be. You just hang in there though, it'll get better. I know how overwhelming it is when you're first diagnosed. This web-site was a life saver for me, I didn't have a clue what RA was and didn't know a soul that had it. You'll be fine!