Is my Rhumy agressive enough?

[Bigshooter]

My Rhumy has me on Azulfidine 2000 mg daily and Voltaren 150 mg daily,
as I understand it this is typically the first thing many doctors try as it is the oldest drug with the least side effects but I am getting very little relief on this drug but I have also only taken it for 2 weeks so maybe I am just inpatient, I have another appointment July 11th and due to this forum I have many new questions for the doctor one question may be "Why am I taking a drug that was approved in 1950 when modern medicine has much better alternatives"
I have been misdiagnosed, went through an unnecessary gall bladder removal and done a million tests just and figure out that I had this problem and now my doc doesn't seem to be in much of a hurry to get it arrested IHMO.
Although my diagnosis was only a few weeks ago, I've been in pain for six months or better with this, Should I push him to get more agressive if nothing is happening by my next appointment?

[chaimFL]

My Rhumy has me on Azulfidine 2000 mg daily and Voltaren 150 mg daily,
as I understand it this is typically the first thing many doctors try as it is the oldest drug with the least side effects but I am getting very little relief on this drug but I have also only taken it for 2 weeks so maybe I am just inpatient, I have another appointment July 11th and due to this forum I have many new questions for the doctor one question may be "Why am I taking a drug that was approved in 1950 when modern medicine has much better alternatives"
I have been misdiagnosed, went through an unnecessary gall bladder removal and done a million tests just and figure out that I had this problem and now my doc doesn't seem to be in much of a hurry to get it arrested IHMO.
Although my diagnosis was only a few weeks ago, I've been in pain for six months or better with this, Should I push him to get more agressive if nothing is happening by my next appointment?

It doesn't really sound like your doctor is treating your PA agressive enough in my opinion. I read in your "thank you" thread that you missed a couple of work days because of your pain and that to me constitutes a more severe case of PA.

You have the option of going to your July 11th appointment and being more aggressive with your doctor (assuming he/she doesn't move more aggressively first) or seeing if you can find another rheumatologist. The question is how much faith do you have in your doctor? You mentioned a misdiagnosis and an erroneous gall bladder removal...were those done by this same doctor?

You can see if anyone here on the NPF forums knows of a good rheumatologist in your area (city, state?) as a good referral if you think it's time to change.

[Bigshooter]

It doesn't really sound like your doctor is treating your PA agressive enough in my opinion. I read in your "thank you" thread that you missed a couple of work days because of your pain and that to me constitutes a more severe case of PA.

You have the option of going to your July 11th appointment and being more aggressive with your doctor (assuming he/she doesn't move more aggressively first) or seeing if you can find another rheumatologist. The question is how much faith do you have in your doctor? You mentioned a misdiagnosis and an erroneous gall bladder removal...were those done by this same doctor?

You can see if anyone here on the NPF forums knows of a good rheumatologist in your area (city, state?) as a good referral if you think it's time to change.

The misdiagnosis was not this doctor, it was another specialist altogether, after my gallbladder removal I kept waiting for the pain to subside which it never did so I went back to my family doctor and he suggested I go to a Rhumy and I got in to see him fairly quickly and I did like him for the fact that we sat in his office (not an examination room) and visited at lenght before ever moving on to a physical examination, I feel like he listened in depth to what I had to say which is more than some of the docs I've read about on the forum.

In the meantime one of my customers at work told me she was dissatisfied with him in regards to treating her daughter for RA so maybe that jaded me somewhat, I think I will just wait and see how the next appointment goes and take it from there, my HMO lists about 10 different Rhumy's so maybe I have options if this one doesn't work out.

I'm just frustrated with the whole thing right now, many unanswered questions and not knowing which way to go, its hard to be patient when you hurt so bad.

[mamaooch]

I know about the pain and the misdiagnosis, I was first diagnosed with costochronditis, and in alot of pain for over a year until the p showed up on my palms and the bottom of my feet in January. The rhemy immediately put me on Enbrel, I took it for 3 months and I still had no relief, now I am on Humira and MTX weekly. My rhemy is so concerned he is sending me to the head Rhemy at Duke. I am so frustrated and impatient also, I get up everyday and go to the Y to get my joints to move. Sometimes I wonder what else the Docs could possibly do to help me, but I still have hope that there is a miracle combination of meds that will help.
I wish the best for you, I know the secret is to be totally honest with your Doc about everything. I have kept a log of what has been going on with me since this has started (how I feel, what joints hurt, what I am able to do, etc) and I took this with me to the Doc, so he had a record of how things were progressing.
Sorry this is so long, but I wanted you to know that you are not alone. If you question the Doc it is okay, I do it all the time, he is working to help you and if you feel that he is not, it is time for a change.

I hope this helps.
Cindy
The misdiagnosis was not this doctor, it was another specialist altogether, after my gallbladder removal I kept waiting for the pain to subside which it never did so I went back to my family doctor and he suggested I go to a Rhumy and I got in to see him fairly quickly and I did like him for the fact that we sat in his office (not an examination room) and visited at lenght before ever moving on to a physical examination, I feel like he listened in depth to what I had to say which is more than some of the docs I've read about on the forum.

In the meantime one of my customers at work told me she was dissatisfied with him in regards to treating her daughter for RA so maybe that jaded me somewhat, I think I will just wait and see how the next appointment goes and take it from there, my HMO lists about 10 different Rhumy's so maybe I have options if this one doesn't work out.

I'm just frustrated with the whole thing right now, many unanswered questions and not knowing which way to go, its hard to be patient when you hurt so bad.

[baldwin123]

Hi Bigshooter,

Have you called your doctor? If you are missing days of work due to the pain this week, you have more than plenty of reasons to see if you can move your appt with the rheumy up! Maybe he can suggest something more aggressive to help short term with this flare you have been stuck in... or at the very least you can consider with him if the treatment you are currently on is enough... leave a message for him to call you, or ask the office to fit you into an earlier appointment...tomorrow even? Ask them to call you if there is a cancellation, or to fit you in due to the pain you are in...hang in there!
Also, as Cindy said, keep a record of how you are feeling day to day... don't be afraid to tell him the good and the bad- that will help you guys figure out the best treatment...

Cindy, good luck at Duke! Hope you are feeling better soon too!

Jen

[SCCatman]

I think most rhumy's these days go to bioligcals very quick.
They are more efffective and have fewer side effects than the older drugs.
Dennis

[mamaooch]

Thanks Jen! The support here is amazing. Even on the worst days I feel better knowing I am not alone in this fight.

Cindy

[seedoubleyou]

I'm on sulfasalazine, also -- have been for about a year-and-a-half now. I started at 2,000mg/day but had my dosage upped to 3,000mg/day to increase effectiveness. I also take etolodac 400mg 3Xday (an NSAID) and Celebrex.

IMO, your rheumy sounds right on target. You're newly-diagnosed, and this particular drug is cheap & and has a long, safe history behind it. Unless your PsA is aggressive, one wouldn't necessarily expect a RX for a biologic right off the bat.

I'd encourage you to be a bit more patient w/the Azulfidine -- 2 weeks isn't nearly enough time to fairly assess its effectiveness in your case. If memory serves, I was told it could take anywhere from 6-8 weeks or more to begin relieving symptoms. The wait is aggravating, I know.

I still experience (what I would consider to be) minor flares on occasion, but am SO much better than I used to be.

Wishing you well!!

[gardengirl]

I have a different angle on this. I have had p for as long as I can remember, and have PA flares and settles. Years ago, while working at my children's elementary school, i thought I was having one of the worst flare-ups of PA I had ever imagined. I persisted with the "Rheumadoc" only to be told I may be progressing to RA or worse. I made an appt, and as luck had it, my regular "Rheumadoc" wasn't available and I saw his young associate. On a hunch he ran a parvovirus titer. Well, I had human parvovirus (one of the highest positive results he had ever seen)! It shows itself as a severe rheumatic reaction. Good gravy, having both parvo and PA at the same time was just plain hard, but it can be survived. I just wanted you to know that having a combo A reaction is possible. I hope your difficult time goes by quickly!!

[ouchyk]

Hi,

Gardengirl, one of the first tests they looked at with me ( former teacher ) was the parvo virus...... :confused: ........I thought parvo was something that dogs carried. :p I guess it can happen with fifth's disease

http://www.cdc.gov/ncidod/dvrd/revb/respiratory/parvo_b19.htm

I didn't have it, but it was a good idea to test for it being that fifths happens a lot in the school environment.

Bigshooter,

My rheumy started me off with a few medications before starting a bio, sulfasalazine was one of them, I didn't tolerate it well. It does work for some people. A lot of rheumatologists start off with the tried and true before moving on to something more aggressive. My rheumys thought " hit PA as hard as it's hitting you "....

I hope you feel better soon.

Karen