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Posted 6/24/2010 10:54 PM (GMT 0)
My dear HW friends, lately I have just been feeling terrible! My back pain has increased a lot and I have pain everywhere else! All I want to do is sleep!!! Well today I found out why....My RA test came back positive! and from what the doc said on the phone....seriously positive....which he said probably means Lupus or something else along with it! I am very scared! The one good point is at least I know why I feel so bad! My regular doctor is in Africa right now but I have an appt with her next Friday to see where we go from here! Anyway....right now just kind of scared and....I think in shock! Just wanted to let you all know, and wondering what others with RA have found to be meds that help!

Take care of you....all of you!
Beckey
Posted 6/24/2010 10:57 PM (GMT 0)
((((Beckey)))))).

I'm glad you have an answer, but I am sorry to hear what it is. Hopefully now that your doctors know what you have, they can treat your more successfully. Maybe something good can still come out of this.

hugs,
Skeye
Posted 6/25/2010 12:27 AM (GMT 0)
Thanks Skeye....I kind of expected this, but it still floored me when he actually said it! I know that once I get the correct meds I will feel better....this has been crazy lately! I am tough, I can handle this and I have a wonderful support system with my hubby, my sis and this group! Thanks again and take care of you!

Hugs,
Beckey
Posted 6/25/2010 1:35 AM (GMT 0)
Dear Beckey , oh I'm so sorry Beckey Girl , that is scary and you probably are in some degree of shock . But your doing the exact right thing , reaching out to we who care about you and love you and will be here for you . Try not to make up any scenarios in your head , that can depress you .Your not sure what is going on and it may not be what your thinking .Have faith , there will be many prayers and good healing vibrations coming your way from NY Beckey .Please try to stay positive andkeep the faith .Your Friend Mikel
Posted 6/25/2010 1:50 AM (GMT 0)
The nine months before I was diagnosed with RA were the worst in my life. I was sick, in pain, kept having negative tests for autoimmune disorders.
And I was one of the lucky ones because my doctor knew what it was and did not believe the test-many people end up having doctors who think they are crazy.

I really just wanted to tell you that BEFORE I was diagnosed was WORSE then afterward. Medication gave me my life back. Everynow and then I have a flare not taken care of by my regular meds and I take a medrol dose pack. In my experience you may need multiple meds-they do different things.

I haven't tried the TNFs yet but in this day and age many doctors use these early on especially with people having a lot of pain or joint destruction.

DMARDS ( plaquenil, methotrexate) they suppressess your immune system and limit the damage caused by the disease-I take both of these
Plaq-helps with the random fevers, morning stiffness, fatigue, the I have just been hit by a bus feeling.
Methotrexate got rid of the inflamation (mostly)
NSAIDS-I seem to have to stay on one despite my other meds. I take Sulindac. Celebrex worked better but I had edema with it so I went back to Sulindac.

Prednisone is your friend when you need it. When you don't need it you will hate it. I judge when to take a course of prednisone by how I feel about it. If I am starting to think that prednisone is the greatest drug in the world I call my rhuemy-she lets me keep a dose pack in the house but I call her when I use it and she sends me a script to replace it. I know I don't need it anymore when I start thinking it is the evilest drug in the world. (when using pred though always follow the doctors instructions and never stop taking it without tapering the dose)

Feel free to ask any other questions you have and feel free to drop by the RA board-people there are just as friendly as people here and they will be familiar with your symptoms and medications.

If you don't trust your Rhuematologist find one you do. You will need to follow this persons advice when you don't trust your own opinions, lean on her experience when you are stepping into what for you is new territory, and let her convince you to take medications with lists of side effects that scare you.

Sj
Posted 6/25/2010 2:35 AM (GMT 0)
Thanks so much Mikel and Sj, I am crying now..... but a good cry because of the love! I know I have my friends here and it means so much! Other then my husband and my sister....this was the first place I went to tell what happened! I am tough and I will get through! Thanks Sj for the medication information....it will definitely help when I talk to the doc! Take care my friends!

Hugs,
Beckey
Posted 6/25/2010 4:22 AM (GMT 0)
Hi Beckey.  I'm glad that you found out what is going on with you, but I'm sorry that it is what it is.  I hope you have a good Rheumatologist that will take good care of you.  I don't have RA, but I do have Osteoarthritis.  It can really be painful I know.  Good luck with finding the meds that will help you feel better and stop any damage that may have occurred. 

 

love and hugs

Loretta

Posted 6/25/2010 5:31 AM (GMT 0)
Hi Beckey,

Just a quick note to tell you I'm sending you lots of good thoughts and prayers...I'm glad you found answers, but I'm sorry for what the answer was. I hope that your doctor is able to come up with a plan that will help you immediately, and that soon, you'll be feeling more energized and alive.

I imagine the next couple of months will be a bit scary for you - so much to learn and so much to do to get you as healthy as possible. Try not to stress too much. Take a tape recorder to the doctor when you have appointments and ask if you can tape the meeting, so you don't miss anything. If you can't do that, try to at least have another person there with you, so nothing important is missed.

I'm glad there's an RA forum here for you, but don't hesitate to vent here when needed. It sounds like there is a lot of practical and helpful advice to be had here, and there's always a shoulder or two to lean on.

hugs,
Pam
Posted 6/25/2010 5:42 AM (GMT 0)
Beckey in many ways you have good news even though its bad news, you now know what is wrong with you. Its when a person is sick and no one knows why that can really be tough. Sj gave you some very valuable info and always keep her thoughts in mind. I have been on the TNF's since 2003 for crohns disease, the potential side effects will scare the daylights out of you, but I need quality life not the constant sickness and in & out of the hospital or ER every time I turn around. I have Lupus induiced by taking TNF's and stay on medication for the Lupus. Your dr will put together a plan to help you out and get you feeling better. Remember what may work for someone else may not work for you. It really is an individual thing.

After you have had a day or so to let things soak in please find a reputable website and read about RA. Knoelwledge is ine of your best weapsons when dealing with any kind of illness. HW has a RA forum and you should pop over there and meet up with those folks, there are some really nice ones over there that have been around a while. They can give you some very good tips. Take care...Susie
Posted 6/25/2010 10:16 AM (GMT 0)
I have to agree with what the others have said in that getting that
dx, you now know what you have and can go forward to get it taken care of...
Keep on the good fight, and just think how better you'll feel once you get
a treatment plan that'll help...
((((((((((((((((((((((((((((((Beckey))))))))))))))))))))))))))))))))))))))))))))
hugz,,, now do a google search and get that knowledge is Power....
well wishes and lots of soft hugz
Posted 6/25/2010 2:37 PM (GMT 0)
Thanks Loretta, I don't know my Rheumatologist yet....the bad part is I live in a very small town and I will have to drive, at least, 50 miles and that plays havoc on my back pain. We do have visiting doctors that come down once a week or once every other week but I don't think a Rheumatologist does, so I guess I will have to do what I have to do!

Thanks Pam, I am very scared, but at least I know why I feel so terrible now! I have posted on RA also, but will still be coming here because of the closeness I feel to everyone here already! And just because I have something new.....my chronic back pain is still there!

Thanks Susie an Chartreux, I have already been reading up about it, as much as I can between naps...lol...man I am soooo tired! The meds for RA are scary!!! I just want to feel better!

All of you thanks for caring and responding....you are all amazing! And like I said, I will still be around here!

Take care everyone,
Beckey
Posted 6/25/2010 3:19 PM (GMT 0)
 

   Dear Beckey,

 

    I am so glad you gave an update. Though goodness, the RA sure does explain an awfull lot of the symptoms you have. I hope more than anything that you are able to get into a rheumatologist quickly. Get on the road to feeling better. You ve been in a tremendous amount of pain for a very very long time and it is high time you got some answers! Please update us again when you get word from the Rheumatologist.

 

     Hang in there, you are almost on the road to better days. Just have to hang in there and get through the next few weeks. You are of course in our prayers here.

 

*warm hugg*

     dani

Posted 6/25/2010 5:43 PM (GMT 0)
Thanks Dani

It is a relief to finally know what is going on!! The reason I feel bad is kind of scary and the more I read about the meds they are really scary! But I guess I will take them if they help.....I just want a life back!

and for everyone....

I appreciate all of you here so much! I love my HW family! You are all amazing and I know where to turn when I really need to talk!
Take care of you.....all of you!!

Hugs,
Beckey
Posted 6/25/2010 7:01 PM (GMT 0)
Remember that the side effects you find listed are all the side effects ever reported-for most of them less then 5 percent of people taking a particular drug suffer from any one of those side effects.
You really will have better days then you are having now.
Posted 6/25/2010 7:35 PM (GMT 0)
Please don't let those side effects control any decision on treatment. My gi that has me on the TNF's said that if one person has a side effect that is reported it has to be listed by law. There are millions of us out there on those very meds that you are reading about and believe me without them the quality of life is just the pits. Being cautious is great but don't short change yourself.

Since this rheumy is new to you, give him/her some time and if they turn out to be a good dr then they are worth the drive. I personally do not like the visiing dr type thing, they see so many people in that scenario and really never get to know the patient all that well. I would rather see someone in theior own private office and if I have a problem I can contact them ASAP.

Take care.
Posted 6/25/2010 8:49 PM (GMT 0)
Dear Beckey,

You've been given a lot of great advice, and knowledge is your best friend. It's also important to find a doctor who will listen to you and answer your questions, although I understand your circumstances of being somewhat isolated in a small town.

You should be aware that autoimmune diseases can be very complicated and may have different root causes. I have multiple autoimmune diseases and I know that part of the reason why is that I am genetically predisposed to develop them; more than half of my relatives have at least one AI disease.

However, as part of my own research I discovered that if you have celiac disease (and many people have CD without knowing that they do), it can literally "open the door" for other AI diseases to develop if you continue to eat gluten. In fact, gluten is known to increase inflammation and many people who have RA go gluten free and see improvement in their symptoms. I have a friend whose RA went into remission when she went gluten free.

The other suggestion I would like to give you is to be tested for Lyme disease, if you haven't already been tested. I never thought in a million years that I could possibly have Lyme disease....boy, was I wrong!!! Lyme disease can both mimic AND trigger AI diseases and fibromyalgia, and it is becoming epidemic in this country, so if you are diagnosed with an AI disease (especially if you are diagnosed with MULTIPLE AI diseases) it is a good idea to be tested for Lyme, just to be safe.

I apparently contracted Lyme disease perhaps as many as 6 or 7 years ago, and I believe that it triggered my lupus, RA, autoimmune hepatitis and fibromyalgia. I've had celiac disease, psoriasis, and Hashimoto's thyroiditis since childhood though.

I truly hope that you DON'T have anything "extra" like celiac or Lyme disease! And I also pray you don't have lupus on top of the RA! But I wanted to make you aware of the complicated nature of things, and also of the fact that the more AI diseases you have, the more likely it is that you will develop more of them in the future.

You're in my thoughts and prayers as you begin this journey.....
(((((hugs)))))
JoAnn
Posted 6/26/2010 2:31 AM (GMT 0)
Beckey...

I'm late to responding to your post... sorry! I'm so sorry you've been feeling terrible lately... And I completely understand how scary a diagnosis is - not knowing what the future holds and all of that. I've been there! That being said, I do agree w/ the others that once the initial "shock" of a diagnosis wears off... it will ultimately be a blessing that you know what you are dealing with and can appropriately treat it. That's not to say it doesn't just plain suck to get any diagnosis! There's no doubt about that.... :( There also seems to be many here who really understand about RA - so that's a good thing.

Hang in there until you get to the rheumy... I hope he/she will get you on the appropriate meds and that you will start feeling better. It's so hard to feel lousy each day, definitely. It makes life very difficult. I'm glad you have a good support system, though, through your husband, sister and friends here :) Take care, Beckey... feel better, and keep us posted.

--Tina
Posted 6/26/2010 3:47 PM (GMT 0)
Thank you everyone!! You have all been wonderful, a bright light at the end of the dark tunnel, I feel like I am in! JoAnn, I am a little scared that I do have other things on top of the RA just because of the way the doctor acted on the phone when he gave me my results. He told me that when my regular doctor got back we needed to get some more tests done! Anyway, I am trying not to stress too much...too tired to stress. My regular doc will be back on Friday and then we will go from there! Take care everyone and thanks again for being there for me!!!

Hugs,
Beckey
Posted 6/26/2010 11:18 PM (GMT 0)
antbuggey
we've never "chatted" before but I wish you healing hugs and a painfree day!
catahoula
Posted 6/27/2010 6:17 AM (GMT 0)
Hi Beckey!

Sorry I'm so late in responding. Haven't been on as much as I should. I'm so sorry to hear about your likely dx. I would be frightened too. The unknown is the most fearful for me. But take a look around at people who do live with Lupus every day. I've had a darling friend for over 25 years who has lived with lupus most of her life, plus her daughter has it too. She was a single mom for much of her daughter's child rearing but she is well into her 30's now. Both mom and daughter live very active and full lives. It's not that they don't have health problems now and then but they push on. I'm not diminishing the seriousness of Lupus, but like any of us we can make our life wonderful in spite of the health problems that come our way.

Grab hold girlfriend and we'll walk hand in hand <extending hand> and I know with all of the love here and your sister that you ARE a survivor!

Warmest hugs,
Chutz
Posted 6/27/2010 8:54 AM (GMT 0)
Dear Beckey

Gosh I am so sorry that you are feeling so terrible. But now you have a diagnosis, even though it may not sound great to you, but it could be a blessing in disguise. Remember God has a plan for you but it is on his own time, so we need to patient. Now the docs can get you on the right meds and i pray that in time you will have some better days. Please be good to yourself, sometimes we are too hard on ourselves and we need to be kind to our bodies and listen to what it is telling us. Rest up hon and do something good for you. YOU deserve it, whatever you would like it to be!!!

Big hugs for you my friend!!

Take care

Posted 6/27/2010 9:17 AM (GMT 0)
Catahoula, Chutz and Suzane, thanks so much for responding! I have never felt a bond like this with people I don't even know, heck even with most people I do know! Everyone is amazing! It stinks that it has to be something bad that brought us together, but other people, may try to, but will never understand! Thank you all for bring such wonderful friends...I feel stronger because of you all! Hoping for a LPD for everyone and sending the biggest hug I can (that doesn't hurt anyone!) to you all!

Take care of you!
Beckey
Posted 6/27/2010 3:17 PM (GMT 0)
Honey, I'm sorry you were shaken by your diagnosis, I truly know that feeling too. Know that I will be praying for you. I know you will get on top of this and get the meds you need and you will be well. You have to keep positive and remember your blessings through all of this. Keep posting here and let us surround you with the love you deserve too.

God bless you.

Lindaloo
Posted 6/27/2010 4:53 PM (GMT 0)
Beckey

You have us all here to come to, we care and will give you our support. Everyone has given you such good advice, maybe kind of look at it this way,......... before with out a diagnosis, you knew something was wrong but you were kind of wondering around aimlessly not knowing what, or how to fix or treat what ever it is. Now you are getting a diagnosis,( even though you may not like it!! That is understandable! Who would like it???!) But now at last you no longer have to wonder around looking and hoping to find a diagnosis, you now have some direction in your life, and can a fix a goal of treating and controling this disease! In a way try looking at it, as a small starting victory in a looming war, and this small but oh so important victory is, you have now identified who the enemy is!!!! ( that in its self is huge!) , But with that knowledge, you now can prepare to fight it and over come it, you might not win a complete victory, but you will not lose either! And that is the most important thing!

I do wish you well Beckey!

White Beard
Posted 6/28/2010 3:04 PM (GMT 0)
Lindaloo and White Beard, thanks so much for responding...it helps more then I can say just to know people care and understand!! I do appreciate the thoughts and prayers!!

You are so right White Beard...I do, at least, know the enemy now.....what I am fighting and how to fight! And I will fight!

For everyone here....I am so thankful to be part of this amazing, supportive family! I do not know where I would be without all of you...and, of course, my family at home!!

Wishing everyone a LPD!

Hugs,
Beckey
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