Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
I'm looking for some advice... I am going to a Rheumatologist on a fairly regular basis, so I am not looking for a "diagnosis" per se. I'm just curious as to what others think and/or have been through.
I have had issues with pain for as long as I can remember. Some years are better than others, but I was tested for RA for the first time when I was around 10 years old. My RA markers have ALWAYS come back negative. I went without health insurance from the time I was 18 until 25. Finally, 3 years ago, I was able to start going back to the doctor. I saw one rheumatologist that said no RA (again, negative markers) and said I have Fibromyalgia. He and his Nurse Practitioner started treating me w/Fibro meds and anti-depressants.
I was diagnosed w/cancer this year and had to have major surgery so I put my Rheumatoid (and all other) doctors on hold until I got my cancer free diagnosis. I stopped my Fibro meds about a year ago (couldn't afford the $150+ per month for pills!!). I noticed my hands and knees were REALLY starting to get bad the past 6 months. I have had 4 hand surgeries from 12-18 years old. RA runs in my family and I was told arthritis would set in because all of my hand surgeries as a teen.
I went to a new Rheumatologist last month and he diagnosed Inflammatory Polyarthritis but said he wasn't willing to narrow it down further at this time. However, he ran a rheumatoid panel (RA Markers negative, again!) and put me on 2 different RA meds (Plaquenil & Mobic). I was informed that my Inflammatory Markers, however, were elevated. The last 2 weeks have been agonizing! I called the nurse today and asked what I could do and the Dr. decided to start me on Prednisone now as well.
I don't have a follow-up until December because we're waiting for the Plaquenil to kick in. I'm just curious, could this be RA or something else? If the Dr. doesn't suspect RA, why would he put me on RA meds? Is there something else that these 3 meds are for?
Like I said, Rheumatoid Arthritis and Lupus runs in my family (extended family) and my RA markers have all been negative, but I obviously have pain due to inflammation. I'm concerned if it isn't RA that I'm on RA meds because some of them have really scary side effects. I don't like being on meds, but I need to be able to get out of bed in the morning and go to work. I am the "breadwinner" of the household and I cannot afford to lose my job due to pain/medical issues.
Thoughts???
I have had issues with pain for as long as I can remember. Some years are better than others, but I was tested for RA for the first time when I was around 10 years old. My RA markers have ALWAYS come back negative. I went without health insurance from the time I was 18 until 25. Finally, 3 years ago, I was able to start going back to the doctor. I saw one rheumatologist that said no RA (again, negative markers) and said I have Fibromyalgia. He and his Nurse Practitioner started treating me w/Fibro meds and anti-depressants.
I was diagnosed w/cancer this year and had to have major surgery so I put my Rheumatoid (and all other) doctors on hold until I got my cancer free diagnosis. I stopped my Fibro meds about a year ago (couldn't afford the $150+ per month for pills!!). I noticed my hands and knees were REALLY starting to get bad the past 6 months. I have had 4 hand surgeries from 12-18 years old. RA runs in my family and I was told arthritis would set in because all of my hand surgeries as a teen.
I went to a new Rheumatologist last month and he diagnosed Inflammatory Polyarthritis but said he wasn't willing to narrow it down further at this time. However, he ran a rheumatoid panel (RA Markers negative, again!) and put me on 2 different RA meds (Plaquenil & Mobic). I was informed that my Inflammatory Markers, however, were elevated. The last 2 weeks have been agonizing! I called the nurse today and asked what I could do and the Dr. decided to start me on Prednisone now as well.
I don't have a follow-up until December because we're waiting for the Plaquenil to kick in. I'm just curious, could this be RA or something else? If the Dr. doesn't suspect RA, why would he put me on RA meds? Is there something else that these 3 meds are for?
Like I said, Rheumatoid Arthritis and Lupus runs in my family (extended family) and my RA markers have all been negative, but I obviously have pain due to inflammation. I'm concerned if it isn't RA that I'm on RA meds because some of them have really scary side effects. I don't like being on meds, but I need to be able to get out of bed in the morning and go to work. I am the "breadwinner" of the household and I cannot afford to lose my job due to pain/medical issues.
Thoughts???
Some of what you describe sounds familiar to me. Last June, out of the blue, my hands, ankles, feet, toes, fingers, and shoulders became inflamed and painful. I had to wait 3 months to see a rheumatologist, just saw him this past Monday.
My regular doctor did blood work in June which was negative for RA. However she treated me for seronegative RA while I waited to see the rheumatologist. She put me on Plaquenil.
The rheumatologist agreed with the diagnosis and wants to add Methotrexate. But, earlier this month I was diagnosed with breast cancer and will be having surgery in a few weeks. Assuming the surgery goes well I will start the Methotrexate in early November.
I believe that 30+% of people with RA are seronegative. Negative results on tests should not be used to rule out RA.
Last Monday I started a low-dose prednisone (5mg twice a day). It is helping with the inflammation.
Good luck!
These blood tests are all pretty vague- they all yield plenty of false negatives and false positives. A good doctor will also look at joints and family history, and listen carefully to your description of what's happening. Yours has done this, and has started treatment. Consider yourself lucky!
There are types of inflammatory arthritis other than RA. (I seem to have PsA {psoriatic arthritis} with a side order of AS {anklyosing spondylitis} neither of which show anything on blood tests.) Have you had imaging done? That can tell a lot, too.
Prednisone should give you some insight. Inflammatory arthritis responds almost miraculously to it while other problems don't.
I just filled my Prednisone Rx today so I will be starting it tomorrow morning. He started me on 5mg (4 per day) and will taper the dosage from there. We'll see how that goes.
I have not had any imaging done since seeing this rheumatologist. I assume that will be the next course of action should these meds not work as well as the dr. hopes. We'll see what's next... It has definitely been an interesting year! LOL
I'd encourage you to read some of the threads on this board about sero negative RA. Most of my bloodwork always comes back totally normal, but I have pretty aggressive RA that has caused erosions. It would be reasonable to ask your doctor to take X-rays of your hands and feet at your next visit. That's something a rheumie should do as part of an initial evaluation and then again at least every couple of years to look for new erosions. For me, prednisone was another thing that helped my rheumie come to a diagnosis- I responded so well to it, she knew it was definitely inflammatory in nature. If nothing else, I hope the prednisone helps you feel better for a while. Good luck!
Caren
Thanks for the advice. I have been trying to read articles about negative RA markers (I assume that is the same thing as "SeroNegative"?) and I read in one article that people w/positive RA markers have a more progressive disease which will cause more damage vs. those who are negative, they will not have as much damage. Is there any truth to this?
Also, in regard to the Prednisone. I am going to start that this morning as soon as I get something on my stomach enough to take my daily handful of meds (ugh! I hate all the meds I have to take!) so we will see what happens. How soon should I notice a difference? He set me up on a tapered dose which should last me for 14 days. The nurse told me that this will "kick-start" the process while I'm waiting for the Plaquenil to start working.
Thoughts?
He may want to see how well you respond to the prednisone.
Sero negative must be complicated. For example just how does the doctor know how aggressive to be with the treatment?
So many don't respond to so many of the meds used & then it's on to the next course of treatment.
How sad & frustrating for the patient.
Not sure if you have any swelling but if so snap pictures & be sure your doctor takes a look.
The best of luck,
Sammy
The doctor didn't put me on Pred to begin with. He started me on Plaquenil (400mg/day) and restarted me on Mobic (15mg/day) but I have been on Mobic for YEARS before stopping it last fall. That was probably about 3 weeks ago. He told me the Plaquenil would take about 3+ months to see a difference so we scheduled a follow-up for December. He told me that the Mobic should help w/the pain in the meantime. Personally, Mobic has never really done anything spectacular for my pain (in years past) but I was willing to try it again.
The last 2 weeks (especially this past week) have just been unbearable w/pain. Mainly my hands, knees and lower back. I have noticed my feet a little more "achy" than usual. The sad part is, I don't notice it half the time because I'm so used to "being in pain". Last week and employee asked me why I was limping. I hadn't even noticed!!! It was then that I realized I had just gotten up from my desk and my back and feet were aching so bad, I was trying to shift my weight to reduce the pain. That was an eye opener!
With all the increased pain I have been having, I called the nurse @ the Rheum office. She spoke w/the Dr. and that's when he added the Prednisone. Should I be concerned that he didn't want to start it sooner? I was also a little upset that 3 weeks had gone by without receiving a call w/my lab results. At that same call, the nurse told me that my RA Markers were Negative but my Inflammatory Markers were elevated.
As far as swelling... People tell me ALLLLLLL the time that my hands are swollen. Personally, I don't see it because I am very overweight and think I just have "fat hands"! LOL But, honestly, I can't really tell. Employees at work, neighbors and even my fiance have told me that my hands look swollen in certain areas from time to time (usually near knuckles and most recently near thumb joint). Again, I usually just ignore it thinking it's just "chubby hands". I like the idea of taking pictures. I may start taking pictures of the areas people say look swollen when they say it, then I can take pics of the same areas on days that they think they look normal. That may be what I need to see the difference and help the dr. see it too.