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| Tue, 08-02-2005 - 9:11pm |
Hi ladies,
Thanks for being in my pocket today - I needed the support. My results for Lupus were negative, so I was diagnosed with RA. I am going to VENT because I'm frustrated with my rheumy. He comes in and says he believes its RA, then tells me about Methotrexate, Enbrel etc. Then he asks me what I want to take, without explaining what each med is or the side effects - so I ask what he thinks I should take - and he says Methotrexate and proceeds to tell me all the bad things - liver problems, lung, anemia, even cancer. Then he asks me if I want to take it. I said I would because I know I probably should. Then I had to ask him how it would help because he didn't even tell me. I asked him if my knee problems were RA related and he said probably a combination of RA and Osteo. I asked questions and it sounds like he figures I probably had RA for a few years. I was hospitalized 3 years ago with EXTREME cramps in my legs (was on morphine a week) and took prednisone for a year. He was one of my Dr.'s then trying to figure out what I had. My knees went from mild arthritis to needing a replacement in less than 2 years. NOW I am told that it probably was all RA. So, I wonder why they couln't figure this out before. Now my akle joints are swollen , my knees, and I had cortisone shots in my rt knee 2 weeks ago and both wrists. I thought he was suppose to be a good rheumatologist - but now I don't know. He did the right things now but maybe its just his personality I don't like. I love my family practice Dr. so I don't know if I should go to a rheumy somewhere else. Then my next appt. isn't with him anyhow but with his physicians assistant. So there!!!! I got it all out. Please tell me that these meds aren't as bad as he said - he sure doesn't have much consideration of how his patients might be feeling - even if he is a good Dr. otherwise. Thanks for letting me VENT!! I also had to ask him about my wrist splints and for a referral to PT. He gave Me a pamphlet on RA and Methotrexate.Please send advise!!!!!!!
Julie
Thanks for being in my pocket today - I needed the support. My results for Lupus were negative, so I was diagnosed with RA. I am going to VENT because I'm frustrated with my rheumy. He comes in and says he believes its RA, then tells me about Methotrexate, Enbrel etc. Then he asks me what I want to take, without explaining what each med is or the side effects - so I ask what he thinks I should take - and he says Methotrexate and proceeds to tell me all the bad things - liver problems, lung, anemia, even cancer. Then he asks me if I want to take it. I said I would because I know I probably should. Then I had to ask him how it would help because he didn't even tell me. I asked him if my knee problems were RA related and he said probably a combination of RA and Osteo. I asked questions and it sounds like he figures I probably had RA for a few years. I was hospitalized 3 years ago with EXTREME cramps in my legs (was on morphine a week) and took prednisone for a year. He was one of my Dr.'s then trying to figure out what I had. My knees went from mild arthritis to needing a replacement in less than 2 years. NOW I am told that it probably was all RA. So, I wonder why they couln't figure this out before. Now my akle joints are swollen , my knees, and I had cortisone shots in my rt knee 2 weeks ago and both wrists. I thought he was suppose to be a good rheumatologist - but now I don't know. He did the right things now but maybe its just his personality I don't like. I love my family practice Dr. so I don't know if I should go to a rheumy somewhere else. Then my next appt. isn't with him anyhow but with his physicians assistant. So there!!!! I got it all out. Please tell me that these meds aren't as bad as he said - he sure doesn't have much consideration of how his patients might be feeling - even if he is a good Dr. otherwise. Thanks for letting me VENT!! I also had to ask him about my wrist splints and for a referral to PT. He gave Me a pamphlet on RA and Methotrexate.Please send advise!!!!!!!
Julie

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(((JULIE))))
Firstly, it is one of the sacred rules of having RA - find a rhuemy that is as proactive and wonderful as you need them to be. Many of us have had multiple rhuemies before we found our dream combination. I myself am even thinking of seeking other advice. You have to be proactive with this disease and demand answers, and if you have a dr that doesn't want to take the time, then you need to switch.
MTX is a standard starting point for RA, and you work from there with various combos of other meds to find the right mix for your body that helps the inflamation and damage stay at bay. Sure there are side effects but you will get monthly bloodwork done to ensure your body is tolerating the MTX. Drink lots of water and take a folic acid supplement, if he has not prescribed one, ask about it at your next visit. Also I found initially that MTX day after days were my tired days so I planned my day accordingly. Everybody's body is different, but this is a start for you. (oh and i think he was an A$$ to ask you what "you wanted" after giving you a very brief explanation of what all the drugs are...duh he is the dr and you are the patient!). RA is a complicated disease that involves complicated drug treatment. Do some research yourself. Stay educated on your options and what is new and upcoming. Arm youself with questions before you go in for your appt., even take in a written piece of scrap paper if you need reminders. Write it down and let him know you want answers!
And the best advice I've gotten lately (from Lell) is the motto: Move it or Loose it. Stay active as much as you can.
Good luck and I'm sending ya bunches of hugs.
take care
Holly
What a disappointing appointment, Julie. First of all, your rheumy should have told you about the meds and why he choose MTX first. When I was dx, my rheumy said it was important to fight RA aggressively. Also, most of the insurance companies will not let you go after the "heavy hitters" until you try the more standard meds. I notice he didn't tell you that it is very important to hit RA hard the first five years, as that is when the most damage can be done. Of course, he didn't say that, as he dropped the ball 3 years ago. He believes it is RA, what is that!!? He doesn't sound very convincing. If it were me, I would ask your primary for another rheumy's name. You need to like him and feel comfortable with him. I agree with Holly 100%. I am on my fourth rheumy, we moved and then I had a hard time finding one I trusted in the new area. It is quite all right to change rheumies. I know there is a shortage of Rheumatologists, but seeing a Physician's Assistant, I wouldn't like that.
MTX is a form of chemotherapy in MUCH, MUCH lighter doses. I don't want to scare you, but you do need to know that. MY PERSONAL feeling is that it is the least harmful. It can cause the other things that your rheumy told you about, but if you look at any side effects on any RX, it is very scary. You need to be deligent about getting your lab work done. Any damage to the liver, etc. can be reversed by stopping the med, if you catch it right away. I say take the MTX and see how it works. How much is your dose? You need to be monitored very closely in the beginning. All these meds work differently on each of us. Many of us are on a combination of meds (our cocktail).
You can vent all you want and I will take another banana cream pie for your rheumy!! Splat!!! LOL We have big shoulders here and sometimes a big vent or cry can really relieve some of the stress and frustration of this disease. I am sending you gentle hugs.
Vicki
Julie, I guess I will have to repeat what both Holly and Vicki said -- they're right!
Molly
Holly, Vicki, and Molly,
Thanks for all the good advise. He does have me set up for monthly blood tests and prescribed folic acid. I had a chest X-ray and preliminary liver blood tests also. So he did a few things right. I just did not like to have to decide what to take ( and thanks to all of you I new where to start). I am a little afraid to take the med but its good to know none of you had any serious side effects. He gave me pills 7.5 mg once per week with 1mg folic acid. I'm still a little shook up - and didn't sleep well, but it is nice to have the support. I think there is a monthly support group at the hospital here too.
So, I have to go get my med. Thanks for the support it's so good to have others to talk to. Hope everyone is doing well, take care and I'll probably have more questions soon. There is one more Rheumy in town though he's at another clinic - but I might go and see him.
Julie
Hi Julie,
I feel you with being scared about MTX. My rhemy sent me home with the pamphlet and after reading it at home I was terrified. I think the scariest thing for me was the fact that I actually had to admit that my RA was real which is why I needed this type of drug.
Everyone reacts different to meds. I suggest taking MTX at night before bed so you can sleep though most of it. Try to take it when you have nothing important planned the next day. My MTX day used to be Saturday so I could be lazy Sunday. Drink tons of water and if you get a upset tummy don't give up. There is also a "rescue" drug (Leucovorin) you can chase the MTX with that will lessen your side effects. I would be lost without it.
Let us know how you do.
Smiles, Jen
Hi Julie - your doctor is doing the infamous CYA - Cover Your A** when he tells you about all the negative effects from medications.
Dear JUlie I was nice to meet you in chat today ( I am mostly at work and cant pop in )
It really is a lot to take on at first and so confusing, So let your education be just gradual, you will most likely ask the questions at the time you need to know, and this board is really a great resource centre.
There is nothing wrong with getting other doctors opinions, We do actually PAY them for a service. However it can be the same as taking your car in to be serviced, when the mechanic starts to tell you all he needs to replace and what he is going to do to make the car run better, you may not even know what he is talking about, but you just have to trust he is doing the best job for you ...because you are paying him too..however we reserve the right to change mechanics if you have any doubts.And seeing a doctor can be just the same, because he cant possibly cover everything he/she knows about your illness in one visit. So it seems to me your doctor just gave you the worst case side effects so you would have some informed consent before treatment.
An easy to understand link for you which has drug actions etc
http://www.medicinenet.com/rheumatoid_arthritis/article.htm
Lell
Julie, it does sound like your rheumy is following the norm with dosage of MTX and folic acid. I don't know why he didn't give you a little bit of Prednisone to get you through till the MTX kicks in, which can be 6 weeks. Do you not want to take a steroid for the short term? It really does help flares.
Hugs,
Vicki
Dear Lell,
It was nice to meet you in chat too! Boy I had a hard time following - I've never been in a chat before! But I'll try it again. You guys all had me laughing when I was kind of down. It is sure wonderful to get so much great advise from everyone.
I did OK with my first dose of MTX - I was awfully tired today, a little dizzy and sick to my stomach and had a bad headache - but none of them were terribly bad.
I am going to see my GP and talk to him the 18th - he's a great doctor. He takes time and listens and explains - maybe I got spoiled seeing him. Then I will decide whether to see another rheumy - I have seen this one in the past and he was ok - but he's also only been in practice a few years. He did say I could come in any time a had a problem.
Thanks for the advise and i'll talk to you soon!
Julie
Hi Vicki,
Its so nice to have all the good advise from all of you. I did have cortisone shots in both wrists and my knee a couple weeks ago, while he was running more tests. I'm also on a bunch of other stuff because of my bad feet -leg cramps- and knees. I have vicodin, naproxen, neuronton among others. So he did do something. Though mostly my GP has taken care of all my meds. My GP's wonderful ,caring, takes time, and listens.
I am getting through taking my first dose of MTX - was scared to death. I was very tired all day (took it Wed. evening) dizzy, nausea and had a headache all day. But none were anything I couln't handle.
Thanks for thinking of me - I don't know how I'd get through without all of you.
Take care - talk to you soon.
Julie
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