RA Guidance Needed | Arthritis Information

 

This is long but please bare with me.

 

A couple of years ago I had constant neck pain and my doctor found an elevated level of RA factor in my blood. I saw a Rheumatologist and she did further testing but told me I was fine. Evenutally the neck pain went away and I put this out of my mind. Well starting this January I started to experience a lot more pain. It seems to rotate daily. One day my left shoulder blade will ache, the next my wrists and hands, the next my feet. Lately, it  has been mostly my feet, my wrists, lower arms and fingers/knuckles. I have morning stiffness but it only lasts a few moments. The pain is worse in the evening. Some days I'm so exhausted.

 

I recently saw another Rheumatologist as recent bloodwork indicated the RA factor was elevated again. More lab work was ordered, I'm not sure what it was exactly but it has come back normal. I'm going to see the Rheumatologist again but in the meantime he asked me to take Prednisone to see if it clears up the pain. He said that if it does that means I have Rheumatory Arthritis? This doesn't seem right does it? From what I have read, there is some strict diagnostic criteria and I don't meet much of it. It could be that I'm in the early stage of RA and I will eventually develop more symtoms but right now I don't fit the bill.

 

Another thing to note is my mom was diagnosed with RA a couple of years ago but isn't on any medication and other than some pain she functions fine. She was recently adivsed by a Rheumatologist she needs to take medication but is unsure if she wants to.

 

I guess the point of my post is to see what people think. Should I take the prednisone given its side effects even though I am feeling somewhat better. I'm not 100% but my pain is manageable. If it helps will that even prove I have RA anyways?

 

Also, I've read early treatment is necessary but that it is important to get an accurate diagnosis before giving people RA drugs because of their severity. So I'm at a loss, do I take the drugs even though I don't fit the diagnostic categories for RA to slow down progression or do I forgo the medication until more symptoms, if any, develop and I get a proper diagnosis??

 

I'm 32, I have a 8 month year old daughter and I want to enjoy her childhood. I am worried about what my life will be like in the next 10 years let alone 30 without doing anything to treat RA. But at the same time, what about overall health if I take these medications?

 

I hope this makes and thank you if you've gotten this far.

 

 

 

I wasn't diagnosed for 14 years even though I had mild to moderate symptoms because my RF, sed, and other labs were normal.  That was in 1985 to 1999.  In 1999 I developed severe pain, was unable to walk and my RF was over 1,000, sed was elevated and a diagnosis of RA was made.  It was too little, too late, because I had damage to my feet, hands, and back in those fourteen undiagnosed years. 

 

I can't tell you to take the Pred.  It's a pretty good indicator of RA being present if you start to have less pain and the inflammation and swelling subside.  That's  the reason your doctor gave you Pred.  You may be palindromic or sero negative and the Pred. test will help your doctor make a clear diagnosis. 

 

Make sure you educate yourself about the disease and it's many aspects and the medications that are prescribed for RA.  The more you know about the disease the easier it will be for you to communicate with your doctor and make decisions about medications.  There are many good sites on the internet about RA and meds. 

 

I wish I had had the option of starting RA meds at the onset of the disease.  Since that wasn't an option, I've developed foot, ankle, hand, wrists and back damage.  I also have RA complications that have affected my heart and lungs.  As I've said many times before, "fear the disease more than the meds."

 

They'll be others who will be along to answer some of your questions but none of us can tell you to take the meds used to treat RA, that's a personal decision between you and your doctor.  Take care and keep us posted.  Lindy

 

Maybe you should take the focus off this being the means of diagnosis and instead think of it being the vehicle to arrest the inflammation, which is critical in the early stages.

 

Another thing: you didn't mention how much Pred. Short term Pred or lower doses does not have the collateral effects that large dose, long-term Pred has.

 

Drugs are the friend, not the enemy.

 

I just wanted to say that I understand your frustration and confusion. Even though it didn't take my doc a long time to diagnose me, the time it took almost drove me nuts.

 

I am not very patient when it comes to "problems" and to me this was a problem and it needed to be fixed. I searched all over internet (I stuck to good sites as WebMD, Johns Hopkins etc though) and I read in forums and I was very confused about what I had but I really wanted a diagnose so "I could fix it".

 

Well, the doctor was confused as well. I did test positive for the reuma factor and I did test positive for the CCP. However my inflammation tests showed up normal all the time. I also didn't have much swelling or physical evidence of inflammation but it was evident that I had a lot of tendonitis that hurt insanly.

 

The doctor eventually put me through a nuclear joint scan and in my feet and my hands he could see that I also had inflammation in many of the smaller joints. At that time I also started to show some (not a lot) swelling in certain places and all that together with the RF and CCP results made him set the diagnose of RA.

 

I'm now on MTX (since ca 6 weeks) and Sulindac (NSAID). I haven't felt any improvement from the MTX yet (it's probably too early) but the Sulindac is definitely making the pain more manageable although I'm not pain free and I do have some swelling.

 

Now to the "fixing" part of this. Obviously, this can't be fixed (meaning cured). It can be managed. So after first being so crazy about getting a diagnose so I could fix it, I went to go into denial about the actual diagnose as it's not "fixable".

 

I'm working hard on the denial part at the same time as I'm trying to stay positive and being as normal as I can in the everyday life. It's only been a few months but I do have occasions when I start doubting the whole thing. What I tend to do at that point is to skip a dose or two of the NSAID I'm on and when I get more pain and swelling etc I "surrender" and try to remind me that I fit the RA criterias and so on.

 

I'm trying to do as the people here in the forum says too and not be too scared of the meds as the effects of the disease can be far worse. It's hard though as it's not an immediate effect and that's when my denial gets fuel again.

 

So, I do understand you! Bring the RA criterias to the next appointment you have and discuss them with your RA doc!

 

I wish you all the best!

 

 

The more I learn about RA the more I'm open to taking medications now so that I can avoid any permanent damage. Some of your personal stories make me realise that this is my chance to try and change the outcome of the disease that has no cure.

 

I do however remain conflicted because I hate not having a clear answer. As far as I know I don't have any inflammation in my joints, nor do I have any swelling. My only symptoms are pain and fatigue and some days that fatigue is likely due to going to bed too late. Maybe I don't have RA but something else? I just wish I knew.

 

Is it possible to have inflammation I'm unaware of? I'm leaning towards taking the pred because it is only a 6 day course and if anything it may lesson the symptoms I'm feeling and it sounds like it may help the doctor figure things out.  I'm going to push for as many diagnostic tests as possible.

 

I have already been through the gamet of emotions, helplessness, anger, sadness, fear ect.. but have decided that I must face this thing head on so that I can live the kind of life I want and can be there for my daughter as she grows.

 

Education on RA is key but where to start? Just reading up on the disease and lurking on this forum is overwhelming at times because there are so many terms I don't know what they mean. Anyone have any particular information sources they would recommend to get me started? And does anyone know where I can get a list of common words associated with this disease and their definitions? What are common tests used to diagnose RA?

 

Also, is there anything I can do to protect my joints while I'm waiting to see a doctor? Should I avoid running? Using the computer too much?

 

Thank you for your help, I'm going to be sticking around this forum to learn as much as I can and hopefully one day repay the favour to new members. In the meantime, expect many questions from me. Re education, here's a link written by my personal rheumatologist, who is widely respected nationwide: Thanks Sam, great links.you've been given some good pointers to help you figure out what you want to do..

Read this site... there are some success stories.. and some are temporary with flare ups... and some are longer term....

Try to help your mom become educated too.....    She may be making out okay now.. but with RA.. time is not necessarily on her side.

You have more positive blood tests than I have had for RA.. ALL my tests were negative.. it wasn't until my RD took fluid from my knee and saw the white cells all over it to make his diagnosis and begin me on a med regimen...

Best to you.... keep us up with how you are doing.
Thank you for those links.  They contained some of the most useful information I have come across
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