New Member -- Hello, all! | Arthritis Information

Good morning --- I've been reading this board the past few days and am so happy to be here!

I'm 55 years old and was diagnosed last week. I was feeling the healthiest and most energetic ever in my life just before the flare that brought me to the RD. I'd been walking, going to Curves, and bike riding every day, but then, for 2 weeks I suffered the most painful swollen joints, malaise, and weight loss and knew something was happening inside. Went to an orthopedic doctor and my family doctor who both assured me that nothing was wrong, but I knew otherwise, and after researching my symptoms on the internet, decided to go to a RD. At first she suspected psoriatic arthritis, but the blood tests showed RA. She is now on vacation and I haven't had a chance to talk with her, but I have an appointment on 9/11. The flare lasted only two weeks and since then I have had only the standard aches and pains of a 55 year old, however today my shoulder is quite painful and I am having difficult moving my arm. She precribed an NSAID and said we'd discuss other medication options on the 11th.

Until then, I will try to learn as much about this as possible and bring to my appointment a long list of questions!

Thanks for listening, and nice to meet you all!

Nancy...hi and welcome. You will get a lot of knowledge through the people here who are experts. I would also get some base line xrays of hands and feet. Do not be affraid to ask questions about any of the meds etc. JasmineRain is a walking encyclopedia of medicine, so she will know a lot about what has been given you.

Also, tell the doctor your goals for treatment and you can ask us what some of our goals are. Right now I just want to sleep through the night without pain, numbness or and kind of thing like that.

Hi, welcome :) You've come to the right place. Everyone here is lovely and very helpful. Thanks, Shelly. The meds are going to be a huge challenge for me as I do not like to take ANYTHING, not even aspirin. I am allergic to some antibiotics and because of that I am absolutely paranoid about putting anything into my system. Don't know how I'm going to get through this, especially when I see that the bulk of meds prescribed for RA are so toxic.

Nancy, I am also allergic to more than just antibiotics....my biggest pain in the booty allergy is NSAIDS all of them. In spite of the allergies I have done well on all of the drugs for this disease. Yes these are toxic drugs and it is a terrible disease. You may want to ask Pip about the Antibiotic Protacol.

Glad you are here, and we will walk you through.

Welcome Nancy! There are some smart "cookies" on this board and they are all very supportive, so hang in there and don't panic. I know it is very frightening at first, but once you start taking the correct medications, you will feel much better. Please keep us posted about your appointment next week. I am glad to hear that even with your allergies you are able to tolerate RA meds. But NSAIDS? I haven't taken one yet, as the pain has been under control with aspirin, and my RD said to take prescription only if necessary. I don't think my shoulder hurts enough yet, lol!Hi Nancy, nice to meet you and welcome to the board.

Knowledge is power with this disease so arm yourself with as much as you can.

A long list of questions for your rheumy is exactly the way to go especially when you are first dxed and need to learn fast. And like Shelly said your goals for treatment are a good idea too.

The group of medicines your RD will be talking about are called DMARDS - Disease Modifying Anti Rheumatic Drugs. They usually start on the least harmful and work there way up the ladder, that way you get the best medication with the least side effects. You would probably be looking at Plaquenil, Sulphazalazine or Methatrexate.

And yes, the drugs have side effects which you have to be informed about but rarely do most of them happen. Most of us may experience some small side effects but nothing major e.g. with Methatrexate, I have a little bit of hair loss. Nothing else so they seem a lot worse than they are. Try not to lose sleep over it.

I myself have been through all the DMARDS and the next rung up, the biologics - Humira, Remicade Embrel and am now on something called Rituxan but fortunately many people get relief well before where I am and I wish that for you too.

Ask as many questions are you need to, that's what we are here for and please reach out if you need to vent, debrief or need some extra emotional support, we are here for that too.

Take care and I hope your shoulder improves soon.
I certainly will keep you posted, now & then -- thanks for the welcome!Thanks, Cordelia. I am sorry that the milder meds haven't worked for you, but glad that at least you haven't had suffered severe side effects. I am happy to know that there are kind and supportive people here who will help me get through this. Thank you. Yep, there are people here that can help you get through just about anything, Nancy.

I thought if I explained the meds, it might demystify them a bit...they then become less scary and strange. You start to integrate them into your world. It is part of adjusting. Your docs have a responsibility to give you all the side effects but honestly most of us don't experience a lot of them, that's why it is not worth losing sleep over it. You want to take what will get you well, whatever that may be.

Thank you for your empathy over the milder meds not working for me, but it is what it is, Nancy. I use my journey to help others, especially people who are newly diagnosed as I remember how scary it was for me.

You hang in there, sweetie.

Hi Nancy,

Welcome! Nice to 'see' you here. This is a great place to get the support nad information you might need, there is a wealth of information to help you make the decisions you might need to make. I have psoriatic arthritis (PA) rather than RA so some stuff will be different but some will be the same...

I echo what Cordelia said about trying not to lose too much sleep over meds. When you get to the stage of having to make a decision find out the facts from your Dr then ask on the board for people's experiences. Remember though that side effects don't all happen for all people and some people get none at all! The Dr's and manufacturers have to give you the 'worst case scenario' just in case.

I hope things continue to go smoothly (or as smoothly as they can with RA) for you.

Hi Nancy.

Nice to meet you

Just wanted to say welcome aboard

For me, 'researching' was my anchor when I was diagnosed. You might start on the American College of Rheumatology website and start looking into those DMARD's.

Here you will find somebody who has experienced just about everything you can think of...and then some. LOL So if you need info, or have general questions, or just need a hug, we're here.

I use antibiotic's to control my Palindromic RA. Which antibiotics are you allergic to? I have a sulfa allergy I have to get rid of but haven't started on that yet. I need to do that if I want to move on to some of the other advanced Antibiotic Protocols.

Hugs,

Pip

Hi Nancy...welcome!Hi Nancy,

There are some very good sites where you can get good information concerning RA and the meds used to treat it. Here is a list of some of my favorites..

http://www.hopkins-arthritis.org/

http://mayoclinic.com/health/rheumatoid-arthritis/DS00020/DS ECTION=8

http://www.webmd.com/rheumatoid-arthritis/guide/treatment-ca re-rheumatoid-arthritis

http://www.nlm.nih.gov/medlineplus/rheumatoidarthritis.html

Hope these help,

Lynn

The websites Lynn provided cover the traditional view point of autoimmune diseases in that the body mysteriously starts attacking itself.

Here are some websites from the alternative viewpoint - in that your body is trying to rid itself from an intercellular infection.

www.roadback.org

www.rheumaticsupport.net

www.rheumatic.org

Hugs to all no matter what view they believe in!

Pip

Thanks, Pip and Lynn, for the links.

I am allergic to tetracycline, also, the last time I took penicillin I broke out into hundreds of tiny hives on my legs and my Dr. said "from now on you are considered allergic, never take it again".

Just yesterdy I saw an article on the internet which told of a remission in an R.A. patient who had a tooth extracted. Apparently the tooth had a root canal which had entrapped a small bit of infection. When the tooth was removed, so went the patient's 16-year bout with R.A. So who knows - perhaps it is possible that antibiotics may work for some.

Hello and Welcome!!!

Well, since my PRA started with an abscessed tooth I had my amalgams removed because of research I'd seen that said something like strep (the mycoplasma I tested postitive for) can hide in the teensy tiny capillaries inside of teeth. Apparently if you could lay those out end to end those capillaries would go something like 3 miles in length. And your teeth/jaw are over a artery that goes deep inside the body cavity (can't remember the name of that artery). Most people who claim to be 'cured' of their RA by dental work usually require a 'cavitation' of the back of the jaw that used to house their molars tho.

Yes, most people on AP use the tetracyclines but some use Zith etc. Whether or not you're interested in it is something you have to learn about/decide for yourself. When you get yourself situated you might consider researching getting over the ABX allergies. I'll forward on anything to you that I come across that might interest you. You never know when you might need an ABX and I personally want to make sure my sulfa allergy is gone. Too many experiences with the docs trying to give it to me even tho the chart was CLEARLY marked 'allergic to sulfa'.

Pip

Hi Nancy, a great big welcome from me, I know you will be at home here and any questions you have will be answered and if you don't check in for a few days, you will find your new family asking where you are, are you ok, etc etc, so its a really nice home for all of us pain sufferers, oh and by the way you have the same name as my gorgeous mum who passed away in January so already you have my utmost attention and respect! Love Janie. You're welcome Nancy :) I think information and knowledge is always a good thing, especially when you have a chronic illness. I have an allergy to both tetracyclines and sulfa drugs...It certainly makes life interesting.

Lynn

Hi Nancy!!

Linda

Hi Nancy, I just want to add my "Welcome" to the others.

The board has been quite busy lately. We seem to have new people joining us daily, and everyone has something to bring to our happy little mix.

You have a great source of information with the wonderful people here. And someone is always around, if you need to talk, ask about something, or just need a shoulder from time to time.

You mentioned that you weren't starting out on much in the way of meds, since your shoulder isn't hurting that much yet. However, your doctor should take x-rays of your hands and feet, if nothing else. These areas are usually the first to show signs of erosion, which you may not feel yet. It is now being said that the most damage usually appears in the first 2 years of having the disease. If you have signs of erosion, your doc should get you on something to slow the damage to your joints.

It's good that you got to the doctor when you did. Many of us had RA for several years, before it was finally diagnosed. Often, a lot of damage has occured by the time it is diagnosed. Sometimes you have to be a bit forceful in your request to see someone who is knowledgable about autoimmune diseases.

Let us know what you find out. We are here for you!

Hugs, Nini

Welcome, Nancy, though I'm sorry you have to be a member of this "club". You will find lots of support and good advice here, so come often!

Kathy

Dear Nancy, I've read all the posts from the board and just want to add my 'WELCOME"

I had been diagnosed 15 years ago and did quite well on a small dose of methotrexate. I was able to go on with my life but (like you)I worried at first about the side effects, and the bad things I'd read about the medications. But, please remember that we only take a small amount of these drugs, just enough to keep our RA from attacking our joints. We are quite lucky to have all the drugs available to help us.

I'm glad you found a doctor you like and will be seeing him/her next week and I hope you let us know what the suggested prescription is.

I'm not sure what I'll be doing on 9/11 , it is such a scary day to remember.

take care, LyndaWelcome Nancy. Will look forward to your posts! Wow, what an overwhelming response! I feel so lucky to have found you. I will be certain to let you know what my doctor says next Tuesday -- I am going to ask for x-rays -- not sure I would have known to request that if not for the wise advice I've received here. THANK YOU!

Hi Nancy from another newbie. Even though I have a different kind of arthritis, I have found this board to be a wealth of information and support.

Lynne H

Hi Nancy and welcome. I'm new here also, everyone has been so nice. They have helped me with all my concerns and questions.

Lori