Currently have I have to drive 3 hours to my rhummy doc every other month for them to say, here take a bit more pills and send me on my way, or they take an x-ray and that's it.
Isn't this stuff my family doctor 5 min down the road can do? I haven't seen a rhummy doc do anything that anyone else couldn't do.
I'll give you my personal take on using your family doc. instead of a rheumatologist.
I saw an internist that had a sub specialty in RA and felt I'd be on the right track with him. I was too lazy to drive 60 miles one way to see a rheumatologist. I was treated for a year with 30 mg pred., celebrex, and tylenol with cod. for a severe flare that caused me to quit my job because I was home bound due to pain and swelling. I finally insisted on a referral to a rheumatologist. While I was waiting for the referral I was diagnosed with a pulmonary embolism (PE) I was so inactive from the RA that I developed blood clots and almost died. It took a month for me to get the right diagnosis for the PE. The emergency room Dr. and my internist both misdiagnosed me. They both said that I had congestive heart failure. I had the symptoms of a PE but none of the test to determine PE were done. A month later with more severe symptoms I entered a larger, better equipped hospial 60 miles away. Spent 3 days and was sent him on anticoagulants.
The internist was miffed because I wanted to see a specialist. He actually flaunted his sub specialty at me and said that I didn't trust him. He was right I didn't trust him or have faith in him. I saw the RD and was immediately put on Enbrel Inj. I left for a 4 month trip to Mexico with my husband 3 months after starting Enbrel and 4 months after having a pulmonary embolism.
I have since changed RDs because I needed more aggressive treatiment than my present RD would agree to. My new RD has done exrays of each of my joints and I have errosion in most of the joints and osteopenia from the Pred. use. I have another bad flare but nothing like before. I'm going to start Remicade at the end of the month. My previous RD wanted me to try all the other biologics before we went to Remicade but I don't want to go thru several more trials and errors.
Your RD will become the most important person in your life.
You also need to be as informed as possible about RA. You need to ask what are the new pills, why are you giving them to me, what are the effects - both good and bad? The same with the xrays. Do you know the results of the xrays? You are your own best advocate. A family doctor doesn't know about all the RA drugs that are on the market now. They don't understand the underlying nature of RA and how if effects all the organs and what to look for. RA is a very complex disease and should be treated by a specialist.
I know that there are some of you out there that will disagree and that's why I'm telling you my story. I had a hell of a year because I was too lazy to drive 60 miles. It almost cost me my life.
I agree with you Lindy. Although I haven't had to go through all you've gone through to determine my RD is best suited to treat my RA; I know for a fact that he is. My GP will also be the first to tell me that those in her practice are not equiped to treat RA and they consult with my RD whenever I'm in for whatever reason to make sure they are doing right by me.
I too have osteopenia; but I doubt it's caused by perdisone. Although I've been treated numerous times with it over the years it's unlikely to have been enough to have casued it.
Wow Lovie, I need a doctors like yours. I had a really good GP, but he moved out of state. My new mission is to find a good GP and hopefully get a referral to a good RD as well!!I like your avator; that's so pretty!
I agree, a good GP is going to tell you that a specialist is needed. I started having symptoms years ago, and more than one GP told me to see a RD. I never did because I would have preferred to just deal with it rather than take any of the meds used for RA.Thanks Lovie,The reason I ask is because this is how my Rhrummy doctor appts go...
They looked at the blood test that the regular doc took and said the same thing, they "think I have RA" but aren't sure. But the numbers look like it.
I told them of other problems with stomach, bowels etc. but each time they ignore it, but my regular doctor is treating me for it and told me it was because of the harsh results of prednisone etc.
My regular doctor started me on meds cuz i had to wait over 6 months completely bed ridden to get to the first doctor appt. Not only that, but when i went it was supposed to be income based and they said i needed to bring in my tax return but since i didn't the 1st visit (nobody said it then) to bring it in my next. I paid full price for the visit.
I brought in my tax return next visit and they said it was too late, so i had to pay over 0 for x-rays etc. and said to bring in a report of income and costs etc. every 3 months on the next visit.
I sent in paperwork, they lost it, went in my 2nd visit and they had the time down wrong from what they told me, it was my day to get upped meds and they wanted to reschedule for over a month later and i was out of meds etc. and in horrible pain.
The doctors i see are different every time, they are in training as that is the way this hospital does things here in Louisiana. One doctor said i might have lupus, the other said no.. you might have chrones, one said i needed this drug, the other said no... you need this drug, one said I needed to stay on pred, the other said no get off it.
It's driving me nuts. All in all, everything the family doctor suggested makes more sense, he wanted me on methotrexate right away, lower the pred when i could and add an antiflam which is what I am finally on this month but he wanted to do it all almost 6 months ago at this dose cuz he understood the extent of my pain and testing.
So, that's why i was wondering.
There is only "1" other rhummy, i made an appointment in february for her, but it won't be until September. I have to pay full cash for anything with her which sucks.
Just for future reference, if you ever file for SS disability one of the things they are suppose to look at is your history and care with a Rheumatologist. That's what I've been told. I guess in my case we'll see if I makes a differance, I've been with the same Dr. for 19 years.
shanbr,
Is there so few rheumies because you live in a small town or is it because of lack of insurance?
The one you're describing sounds perfectly awful. There should be some kind of patient advocate for whomever is "supposed" to be picking up the bills. Call the main phone number that gave you and as for either a client manager, advocate, or consumer manager. They are called different things. If they have someone like that, they can help you navigate this impossible situation that you find yourself. They may even be able to get you some of your money back.
If you have no insurance, check with your state office. Many states, not the one I live in of course, have ruled RA as a reason to get state health care benefits. Even my state, if your medical pulls you down to the poverty level (gee, thanks a lot) you can get your medical reimbursed.
Shnbr,
Another idea might be to get your regular doctor to be in direct communication with a really good RA doctor. Since you have a three hour drive anyway, your doctor might be able to find someone that is better. Once, you have been seen initially by the RA doc, they can communicate regarding your treatment. Since so many of our meds are self-administered with the exception of infusions, that might work.
I would love to live somewhere besides the city, but your problem is one reason I've decided to stay close for now. Six months bedridden is an absolute crime. I can't believe they put you through that. Such suffering is unbelievable.
One reason why you need to see a rheumatologist is because most GPs aren't able to monitor you when you're on DMARDs & biologics. My PCP is really excellent - but she said, you need more than I can do for you. Once you're on those medicines, they have to monitor your liver, kidney, blood, heart, all that good stuff. If the doctor isn't really treating you, though, I'm not sure it makes any difference.
Actually, my Rhummy has my family doctor being the one to do blood tests and to check on how the medication is doing. I see my rhummy a few times a year to make sure it all still works to their approval. Basicly, if i don't have pain, they keep the meds, if i do they they change them a bit which my family doc can do, in fact he's the one who recommends that something be changed.
I live in Louisiana, the new orleans hospitals are closed due to the hurricane, there is one rhummy in the small town i live in the next town which his Baton Rouge is 3 hours away and I have to see their doctor because it is at a hospital that goes by your income.
I have an approintment set aside with the local one, but still have to wait until september to see her. She is a great friend of my family doctor and he was getting info from her when he started treating me before i started going to the rhummy.
I'm still young (33) and hoping my husband's income will keep me from apply for social security etc.
It all gets so frustrating sometimes. I just want to go back in time. The stress of the hurricane brought on my arthritis, in fact it got worse instantly that weekend when we were luckily out of state on our yearly "hurricane run" as we call it (whenever a hurricane "might" hit, we get out of state).
I thank you all for chatting with me. God bless.
Diane (BeadTurtle) You're welcome. I hope that it helps you and I don't mean to scare anyone. I was a surgical nurse and should have known better but I was in such a horrible flare that I couldn't be my own advocate due to pain. Won't make that mistake again. I have a great RD now who is very aggressive, answers all my questions and we can discuss how I really feel. I don't want sympathy I just want answers and treatment and I get that from my RD. I get enough sympathy from family and friends.Hey Shan, what part of LA are you in? How far are you from the TX border? Maybe you could come to Houston for treatment. Houston to Baton Rouge is about 4 hours, Lafayette is about 3 hrs from Houston. There are tons of doctors here.I'm on the other side of the state by New Orleans. It's about 8 hrs to get to Houston.New Orleans is 5 hrs from Houston....but there has to be another alternative for you than the doctor that you are using now. Man I really hate what some of these doctors put yall through. I am seriously thinking about opening up our spare room to RA sufferers that need to come here to get a decent doctor...like an RA B&B