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 saw the rheumatologist after working with my primary doctor for 2 months. The first time I saw my primary in July for pain and misc. things I forgot half of what I wanted to talk about. So she ran some blood work to see if it was my thyroid. I was cold, bruising, horrible hip pain and stiffness that would last for hours. She put me on tons of motrin and tylenol which didn't help at all. I saw her again Sept 17th and she ran more blood work then got me into the rheumatologist on Sept 28th. From July to now it has gone from hip & knee pain to finger joints, wrists, shoulders, kneck, jaw, ankles (feel like they are very sprained) and toes (feel like they are severely bruised when walking). My knees at times feel like like they are on fire and will explode. I can't ball up my hands to make a fist. The rheumatologist just kept saying "you aren't doing it like I told you to" and I just told him you can't even force my fingers to bend like that. Driving is very painful and hard to grip the steering wheel. I also have daily low grade fevers, joint swelling and they would be warm but not red. Doing anything physical takes at least 2 to 3 days to recover and I'm talking about being down for the count.
My RF came back normal, Westergren Sed Rate was 10 normal, ANA was negative, anti ccp came back strong positive.
The rheumatologist diagnosed me with polyarthritis and said it could possibly be RA and diagnosed me with chronic fatigue. He rx'd prednisone for a 6 week taper down and also started me on 200mg of plaquenil. Vit D was low so they put me on 6,000IU of D3 a day.
I saw the opthamologist for the plaquenil this week and my eyes are fine and I don't have to return for 4 years.
Rheumy said to come back in 4 months.
It's so hard being in so much pain when you are so used to be on the going, going to work (I work with my husband) and taking care of 4 boys ages 18, 17, 14 & 11 and also 3 dogs! :) We've had to turn down jobs because I can't do what I was doing. My husband is a finished carpenter and we do custom mill work, cabinets, stairs and small remod jobs. I do a lot furniture/cabinet refinishing which in my current state I can't even hold a paint brush for a few minutes!
Anyway sorry that was long. Just introducing myself.
Jen
My RF came back normal, Westergren Sed Rate was 10 normal, ANA was negative, anti ccp came back strong positive.
The rheumatologist diagnosed me with polyarthritis and said it could possibly be RA and diagnosed me with chronic fatigue. He rx'd prednisone for a 6 week taper down and also started me on 200mg of plaquenil. Vit D was low so they put me on 6,000IU of D3 a day.
I saw the opthamologist for the plaquenil this week and my eyes are fine and I don't have to return for 4 years.
Rheumy said to come back in 4 months.
It's so hard being in so much pain when you are so used to be on the going, going to work (I work with my husband) and taking care of 4 boys ages 18, 17, 14 & 11 and also 3 dogs! :) We've had to turn down jobs because I can't do what I was doing. My husband is a finished carpenter and we do custom mill work, cabinets, stairs and small remod jobs. I do a lot furniture/cabinet refinishing which in my current state I can't even hold a paint brush for a few minutes!
Anyway sorry that was long. Just introducing myself.
Jen
If in 3 or 4 months you are still in pain, demand a different DMARD. If you are still in pain, demand a biologic. Don't sit back waiting for the doctor to do something. That is what I did, and I wasted 7 years of my life in pain.
I was sero-negative for the first 4 years, and even today, when I am flared in over 80 joints, my numbers are still low.
As for coming back in 4 years to the opthamologist, that is garbage.It is supposed to be every 6 months.
I would advise you to read up on drugs, and RA. Because sadly, this is your life, not the doctor's.
And welcome to the group! Sorry I am a little harsh, it is not about you, but remembering what I went through all those years, and being back in that space again because the meds just don't seem to want to work.
The predinsone was 20 mg last week and this week I am taking 12.5 mg then 10 mg and down from there. The only difference I have seen so far is the hip stiffness. Still have hip pain but none of the stiffness. All the joint swelling and pain is still there.
I have been keeping track of symptoms, fevers (temp/time/date) and all that for a few months now. I have it all in a binder along with labs and dr appt summaries they print out.
What does it mean when RF negative but anti CCP strong positive?? The dr didn't explain that.
they are all script writers.
i did not start with plaquenil or sulfasazline - I started with mtx - but all 3 are dmards and I did end up on trials of those two also - my feeling is you end up taking EVERY dmard or trying every one at some point it is just what the trajectory of your early care is.
half this board is probably sero negative - you are in a good place.
no baseline MRI's of either your wrists or your hands or your ankles? that would have been helpful
if you have normal liver numbers it would have been nice if the rheum prescribed one of the 17 prescription nsaids. they are better than nothing, if you happen to not be allergic to nsaids and have good liver numbers and don't drink a pint of jack a day.
i think you SHOULD BRING IN THE FOUR GUY SONS/TEENAGERS to your next appointment. Please? can youd do that? you know give them all a get out of jail appointment for school that day and haul them in WITH you.
there's a visual aid if I would ever see one. they can come in because they are concerned about mom's limitations and restrictions
I hate misogynistic doctors.
get rid of the fatigue diagnosis. new RA patients are caught so off guard by the new lifetime best buddy of fatigue with inflammation that they babble about it (I know I did) because it feels like being 9 months pregnant all the time. and any rheumie that I had, shut it down. doc's can't see or quantify fatigue and here comes the obtuse diagnoses
sorry for the rant.
http://www.medpagetoday.com/Rheumatology/Arthritis/20094
Depot
Plaquenil takes some time to work, if it is going to work. So, try to be patient with that part. Eye exams are a must every 6 months on Plaquenil. So, be sure to follow up with that.
Be sure to educate yourself as much as you can on RA. Keep organized, ask questions of your doctors. I go in to every appointment with a list of questions/concerns. Be sure to prioritize them according to importance - in case time is of the essence to your rheumy.
This is a life long journey. Things in rheumatology happen in small increments - painfully slow sometimes. I started with Plaquenil first then Methotrexate was added pretty soon afterward. It took a while for both meds to help me.
Welcome - keep us posted.
Linda
After the initial round of blood work, he put me on methotrexate right away. That did zero good, so within a few months, a biologic was added. He recommended prednisone, but I did not want to take that if at all possible. However, I did get Celebrex which was helpful.
I also take prescription folic acid (2 mg a day) and Vit D (5,000 mg a day. I also see a dermatologist once a year, and my eye Dr every 9 months.
I get copies of all blood tests, and save them.
welcome to the group. There is so much helpful information here. We know what you are going through
All my best to you.
I am confident once the meds do kick in things will improve. I can't wait to get back to doing what I like to do. Little by little. Right now it's hard to find that spot of doing what I can but not over doing it so I don't end up in to much pain and can't do anything for a little bit.
I also forgot to mention when I saw the Rheumy I did have xrays done on Sept 28th of my hands, wrists, feet & ankles. No idea what they showed as no one followed up with that yet.
Someone above mentioned drinking...nope no drinking. Both my parents and grandparents were all alcoholics so I just never drank. I don't smoke either. Eat pretty healthy very little processed foods and stay away from sugar. I can't eat gluten. I used to suffer from horrible migraines and what the dr thought was IBS but back when I didn't have health insurance my primary told me the cheapest way to see if it was gluten was to just stop eating it. So we don't know for sure if it's celiacs or just an intollerance because I couldn't afford testing at the time and that was nearly 4 years ago. The only thing the Rheumy did say was that I am obese 169 lbs at 5'3" and to drop 35 to 40 pounds and that will make it much easier on my joints . I agree less weight will be easier on my body.