Hey, and welcome! I was diagnosed with possible RA, even though my bloodwork was negative for it. But I seemed to have many of the symptoms. Plus I felt like a new person on prednisone. But I just this week went to a wonderful new rheumy who diagnosed me with ankylosing spondylitis, which is in the RA family. She determined it from an MRI report of my back.

That could be a possibility for you, too, by the sound of your symptoms. But I'm certainly no doctor. The symptoms are similar of so many if the autoimmune diseases. What I have and RA are treated very similarly. My doctor saw that my current treatment plan if just MTX and prednisone wasn't totally working, so she added humira.

Just hang in there. If this is a good doctor, he will get to an answer, hopefully. Ive learned it is definitely a process, which can be very trying at times. But as all these good people here will attest, we do eventually get there!

Please keep us posted.

For both Sharmomnana and Fibrolizzy........Shar...you tested positive for the HLA B27 gene which opens up the possibility that you have an arthritis disorder in the "sero-negative spondyloarthropathy" category...which is NOT in the same category as RA. It is a separate category all by itself with about 6 other disorders such as Psoriatic Arthritis, Reactive Arthritis(used to be called Reiter's Syndome) and others I won't go into right now. At least 70% of those with these disorders are positive for HLA B27(it's a different gene in African Americans but I don't remember what).

But all of them feature a specific type of arthritis of the lower spine and sacro-iliac joints of the pelvis. If untreated, those joints will eventually fuse as will the lower spine. And they have very specific type of arthritis that fuses them called syndesmophytes....they form bars across the SI joints and vertebrae. They can also affect the eyes and GI tract.

But in the beginning, they are very similar to RA. And since most RA tests have a high percentage of false positives and negatives, the docs really don't know for a while. I was finally diagnosed by MRI...they could see the swollen and inflamed synovial membrane and that is what RA is all about. With the HLA B27 gene, they watch for those arthritic bars in the pelvis and spine.

The reason they do the testing with meds is to see what helps and what doesn't....and that can be as diagnostic as any blood work. I developed eye problems and several drugs were tried but when a drug that only helps RA took away my symptoms, I was diagnosed with Ra uveitis even though my symptoms were not that of Ra uveitis. If a certain drug works or doesn't work, then it tells the doc what helps and what doesn't....another clue.

Everyone thinks that there are tests that prove every disease out there when in reality, most tests are only have a 70% positive rate for most disorders. some are even less and some more but with RA, 70% is about right. That means 30% of us don't have the rheumatoid factor and some are Anti-CCP negative(although it has a high rate) and for some, a positive CRP can be for all sorts of things as well as the ESR. All of these arthritic disorders are really diagnosed by clinical observation...the doc watches and tests and uses their best intuition as to what is going wrong. And even that can change over time.

I was diagnosed with 2 of the sero-negative spondyloarthropathies because of strange arthritis in my spine and SI joints(ankylosing spondylitis and Reiter's Syndrome) and then that changed to Ra eventually when the spine problems went in a different way. I was hit with the Fibromyalgia Dx too but that didn't last long. Got a lupus Dx twice but that didn't hold up either.

Bottom line, there are no definitive tests for any of the arthritic disorders that says...yes you have this....and it will never change. And you can get more than 1 at a time. It takes time and patience to find the right diagnosis.

In the year 1900, there were 2 forms of arthritis, osteoarthritis and rheumatoid. By 2000, there were 100 types and by 2050, it is predicted there will be 200. The more they find these tiny markers in the body fluids, the more they can differentiate what we have...that even goes for Ra. Ra itself will eventually be broken down into several types as well depending on the factor that starts the auto-immune reaction.

Welcome to the mess and enjoy the support. But be prepared to be patient.

Lizzy....go to The Arthritis Foundation and look up AS for a better explanation but it's not in the same category as RA....but just as bad and uses the same treatments for now. Ra can hit the spine but often does not but AS does and severely....the real difference between AS and RA.

gentle hugs to you both............Jen

I was extremely flared when I first got sick, but all my numbers in blood tests were 0 or normal. I was sero-negative, but I definitely needed medication help.

That came in the form of an asthma attack. I was put on 40 mg or prednisone for 5 days,, and the pain was just gone! I was me again. That is when I knew for sure I was sick. It just took a few years for the doctors to figure out how bad I was.

So I don't put much stock in numbers on blood tests. Because of false negatives. I was under medicated for 7 years. And when I finally got on a biologic and mthx, my life changed totally, and I had some really normal years.

As far as the anxiety, prednisone does have all kinds of side effects. But I would suggest that perhaps prednisone is just amplifying the feelings you have, in terms of worrying about what is wrong with your body, and wondering what is going to happen in the future.

I would see about getting some help for the anxiety, before it overwhelms you. And if the prednisone is not helping, you need to talk to your rheumatologist about it. It may be that you need a higher dose. Or it may mean that you don't have RA?

Welcome to the RA forum, by the way. I am always sorry to greet new people, because it means they have RA. But this is a really good place, with kind supportive members, lots of experiences to share, and a fair amount of medical knowledge. Some have really educated themselves about RA, and they are a great asset to the group.

Absolutely yes, Sally. A person can have the combination plate of autoimmune diseases any time they want, not just for lunch on Fridays. Many of us here have more than one AI disease. I myself have been blessed with 3 or 4. These diseases are sneaky little buggers and they like to travel in packs and join gangs.

Shar, a definitive diagnosis usually happens over time, frustrating as that can be. The good news is that the autoimmune joint diseases are all treated the same way, especially at first. Prednisone is often used as the poor man's diagnostic tool: if you respond to it, it does tell them that your problem is inflammatory in nature, and not the wear-and-tear of osteoarthritis.

You have a doctor who is running appropriate tests and starting you on treatment. If you hang out here for long, which I hope you will, you'll realize that this is a big step in the right direction.

Your test results are confusing, as anti-CCP is highly specific for RA, and HLA-B27 is a strong indicator of psoriatic arthritis, ankylosing spondylitis, or one of their nasty little siblings. As I said before, though, there's no reason to stop at one autoimmune disease!

What a great group of people! Thank you all for taking the time to respond to my questions and concerns. I have gotten quite a bit of valuable information.

I put a call into the rheumatologist yesterday to ask about the situation. As I waited for her call back in the late afternoon, the pain level rose quite a bit, so I decided to try the prednisone again, since I didn't want to end up taking it close to bedtime. My pain went from an 8 to a 3 in a few hours. It didn't take the neck pain down a lot but I was able to move my arm freely, without stabbing pain. I also took magnesium to help with the anxiety. It worked well and the anxious feelings were very minimal. I think you may be correct, MarleneJ, about the anxiety being possibly due to my fears and concerns. It sure is a lot to absorb.

The rheumatologist called back and said I had several options if I wanted to try another route, but she felt, if I could handle the prednisone for the remainder of the two week trial, it would help us with diagnosis and treatment options. I agreed to keep trying it. She said I could even cut the dose down to 15 or 10mg, if I wanted to or we could try an injection of steroids, since they tend to cause less anxiety. I agreed to keep trying the oral prednisone. I truly am so appreciative for her, as she is very hard to get an appointment with, but has flexed her schedule to fit me in and takes time with me.

Within the last year, I've had several x-rays to diagnose the neck degeneration; hip x-rays due to hip pain, which showed some hip osteoarthritis; a chest CT scan, due to chest pain, which showed more degeneration throughout the spine. Recently, I had an x-ray of the sacroiliac joints, which showed no inflammatory arthritis, leading the rheumatologist to think it wasn't ankylosing spondylitis. I do have a lot of pain in the tailbone area and have had that for years. I'm not sure if the x-ray is conclusive to rule out ankylosing spondylitis? Most of my pain is in my neck, back, hips, and shoulders/ arms. I rarely have pain in my feet or hands. So mostly, the large joints. I have not had signs of fever, swelling, redness, or warm areas on joint surfaces. I know that doesn't necessarily determine anything, definitively. I guess it just explains why I am puzzled by the possibility of RA.

Inflammatory arthritis runs strong in my family, on my mother's side. She had it, her sister had it, and my sister developed Stilles Disease in her late 20's. I have watched the devastation it caused for them and I think that is also driving my anxiety. My sister, in particular suffered, immensely, for 34+ years, before passing away at the age of 62. She was in and out of the hospital often, with so many complications, surgeries, from her disease. I am also one of ten children. Of the ten of us, seven have some form of arthritis. Five have had joint replacements and/or back surgery. Having this history, I'm not quite sure why I am surprised at my own health difficulties. Even being in so much pain for years, it just didn't occur to me. I assumed I had some pulled muscles or something similar, from exercise/ lifting children, etc.. I'm feeling a bit silly for being so naive. I'm definitely feeling humbled.

I am trying hard to be patient and I appreciate the reminders to be so. I also have Hashimoto's Thyroiditis (autoimmune thyroid), which I've had for 30+ years. I've had to learn to flex with the ups and downs of the Hashi's, find doctors who were knowledgeable, find medications that worked when others stopped being effective, and learn to be patient through some extreme lows & highs of emotions affected by swings in thyroid hormone levels. I also had to change my diet 5 years ago, when I developed stomach probles and it was discovered I had gluten intolerance, although I was negative for celiac disease (Hashi's and celiac are linked). It's been a long learning experience with all of this. Needing to add something else to the mix, seems a bit daunting, at the moment. I know you are all correct though, in that I do need to be patient and be my own best advocate.

I am grateful to have found all of you. You have given me some good insight and a good place to begin on this journey. I am rereading through all of the posts and links you provided. I plan to stick around to learn and share. Thank you for being so welcoming.

Shar

I have nothing to contribute here that's as good as what has already been shared, but will tell you I've had my rheumatologist say the same thing to me...she felt I could do prednisone to find out with more certainty since the blood work didn't support what the symptoms (RA) were. Also, she said I could do Plaquenil and if I had improved greatly after 6 months, it was most likely RA. I chose Plaquenil and avoided prednisone~ saw great improvement and thought she was pretty sure of RA. Last appt she backed off, so no idea beyond "Inflammatory arthritis" now and wish I'd done the prednisone when she mentioned it.

I guess my point is, many on this site, like myself, have been through this limbo and have found some strength just knowing others have dealt with this as well. I hope you do find relief and things improve for you.

anti ccp is specific for RA (or maybe psoriatic arthritis). Yours is high so I don't see that there's much of a debate. I'm sorry you have one of the two - both similar.

If you get tests done with any prednisone, the sed rate or the crp could be less positive as it helps pull those markers down. Anti-ccp usually stays high. That you aren't having specific enough symptoms may mean it was caught early. Anti-ccp can be positive over 10 years before symptoms go crazy.

I was told this...........It's more like to have a more common diagnosis (RA or psoriatic RA) with a different/odd presentation than to have an even more rare diagnosis with normal presentation.

Personally, my symptoms have never been classic RA but my anti-ccp went from 250 to over 500 in a few years. It's what I have - and yet it's my tendons, muscles, and nerves that are most affected.

Prednidone is nick named good guy/bad guy with good reason.
Although it can be a good diagnostic tool.
I did not respond on a dose less then 15-20mg to start with. There were times even at that dose it was a struggle.
Realizing this drug can contribute to anxiety along with many other side effects it may be worth trying to help confirm a DX. Up to you & your doctor of course.
Journaling can be very useful also. Keeping track of changes, triggers, how you respond to treatments.......
You'll learn more here then from any doctor, a long with the priceless support.
I feel much like Jen in regards to medical testing. Patients place to much faith in test results. Sure they can pin point & help make a solid diagnosis for many but no test is 100% every time.
The human body is still a mystery.
To many doctors rely on testing & do not think outside the box. More doctors need to listen to the patient & educate so a patient has a better understanding of the over all picture.
Hope you get some answers soon. Waiting & wondering can be beyond stressful.
Sammy

Having the Hashimoto's confirmed by blood test, gave me a tool to help myself and gave the doctors a confirmation of what I had been telling them for so long. My only diagnosis was hypothyroid for 18 years. As I continued to get worse, I got more and more frustrated when they would say all of my labs were fine. Well, they were testing the wrong things, though the TSH is still the test they use, despite being inadequate as a definitive indicator in many people. So when a new doctor ran the antibody tests and mine were positive, we had a piece to the puzzle. I didn't have to follow my TSH numbers and there is a better medication that works for me, which other doctors refused to consider because it wasn't the newest medication. I could adjust my medication dosage based on symptoms, rather than labs. I have been steady for 12+ years on my thyroid medication, adjusting as needed. I have learned to be my own greatest advocate as a patient. I have a great relationship with my primary doctor, who surprisingly is one of the original doctors who didn't test correctly. We have both learned a lot and continue to learn.

In that way, I consider RA labs to be helpful. I want to see the results and use them as a tool to help myself and my doctors. I realize they can't give me all of the answers, but I assume they can help? Maybe not as much with RA as in Hashi's? I don't know. I'm just really searching for answers and want to learn as much as I can.

Since I started on the prednisone a week ago, I have had some ups and downs. Each time I take it, I get relief within hours. I tried to cut the dose to 10mg on Saturday. That was too low. Yesterday and today I've taken 15mg each day and it seems to be just enough to take the pain down. I am taking magnesium malate daily and it helps tremendously with the anxiety.

I have started a journal as you suggested, Sammy. I hope that will help me throughout this. I am also learning a lot from reading other posts here. What a goldmine! Again, I am so grateful to have found this forum :)

Thanks for all the insight, suggestions, and help.