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Unhappy with my rheumatologist. No where to turn.
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mom2giqm posted:
I'm 37 & was diagnosed with RA in 2010. And I really just want to vent right now.

I'm very unhappy with my rheumatologist...and my options in general to treat my RA. Problem is, there aren't any other rheumatologists nearby. She's over 30 minutes away as it is. English is not her first language & we have done nothing but miscommunicate. When I had a bad reaction to Naprelan, I got the standard dr denial statement "I don't know why it would do that."

Anyway, she wants me to do Plaquenil. She told me to research it & I did. I'm not about to take something to suppress my immune system. RA would be the least of my concerns with no immune system.

So...we're at a standstill. I'm not taking her drugs & she apparently doesn't care because I missed my appt (they forgot to call me) 3 months ago and I'm out of sight, out of mind. Medicine really isn't what it used to be.

Now, I'm dealing with depression & scalp blisters...which could both be related to RA. Who knows? I guess not feeling like you have anyone in the medical field to turn to & be able to trust when you're in pain might be cause for depression.
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renekym responded:
Well I can rally relate to what you are going through. Doctors are not God. I do not know where you live but there has to be another Doctor you can see. I had problems with the drugs to so you are not alone. Know this you are not alone when feeling the way you do. Do not give in to this. Try and stay possitive. I have been sick in bed for two weeks from side affects. I keep trying to work through this too! This is my 1st time on the inernet. I found you and just knowing I am not alone makes me feel better.
 
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mom2giqm replied to renekym's response:
So sorry that you've been so ill from side effects. I've been too willing to take medications in the past for other things & suffered for it. That's why I'm so reluctant to take anything she's offered so far.

I'm seeing an Acupuncturist later this week to see what he can do...if anything.
 
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renekym replied to mom2giqm's response:
Good Luck with that. I hope it works for you. I have been down that road to for other issues. I am looking for a new RA doctor to. They are hard to find . Any good Doctor today is hard to find for that matter. That is all they want to do is give you drugs drugs drugs!!!!! Then when you get addicted they donot want any part of it. I have been down that road after thre back surguries and it is not fun. Good luck and I hope it works for you.
 
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Siobhan29 responded:
Sorry to hear about your frustrations with your doctor. I've gone through some of that myself. I however am on Plauenil for my RA and it is working wonders, I am still very healthy no major illness (well besides RA). It doesn't completely take away your immune system it just supresses it enough to where your body stops attacking your joints. That is what RA is an overactive immune system thinks our own joints and organs are invaders. It is totally up to you to opt out of the meds to suppress/stop your body from attacking itself but understand this disease if progressive and will not stop so you could end up very debilitated by this disease. I'm not real excited about taking the meds either but after being nearly bed ridden due to the pain and stiffness to moving and working with minimal pain it is worth it to me. I don't even have to take prescribed pain meds for my pain. WHat ever your decisions good luck.
 
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justkeepswimming26 responded:
I have an amazing integrative doctor. As soon as we realized it was RA, she sent me to a rheumatologist, nutritionist, and Chinese medicine practitioner. They have seen people completely recover from autoimmune diseases (rarely happens with drugs). I have had allergies for years (gone practically overnight thanks to these wonderful people), had Grave's disease 5 years ago, now came down with RA in August. FINALLY, someone is addressing my issues with methods that work. The rheumatologist is only for running tests. You have to address your overall health with smart nutrition and exercise. Going dairy and sugar-free got rid of my allergies. Now I have been gluten free and and free of the foods that I have sensitivities to and my RA symptoms are greatly improved! These diet changes sound horrible, but it's not as hard as it sounds and it IS SO WORTH IT to avoid toxic drugs
 
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wohlgemuthnaomi responded:
where do you live??city and state...........i'll help you find the best . it is possible.

wohlgemu_a@comcast.net
 
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wohlgemuthnaomi replied to Siobhan29's response:
you are 100% correct
 
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arnissa15 responded:
I too was diagnosed with RA in 2010. For the whole year prior to that I went to every doctor on island and you wouldn't believe what i was diagnosed with. ... a different disease everytime. Luckily, i recognised that these people knew even less than me what I was going on with me. Luckily, there was a visiting specialist that I went to and he immediately suspected RA. Unfortunately, he was a heart specialist and could only suspect RA but could not recommend treatment. I live in the middle of the Pacific and the nearest Rheumotologist is in a different country! so I have to fly over every 4 months for treatment and to get my meds. I'm telling you this so that maybe you will appreciate that at least you have other options. I would gladly drive 2 hrs if i had to. I am very lucky though that with my docs help, my symtoms have greatly improved. and I think that you may need to make a lifestyle change... nutirtion/excercise and most importantly... attitude!!! remember, no matter much you suffer, there is always someone out there who is facing even greater hardship!!! Good luck
 
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mp49009 responded:
Treatment and communicating is frustrating but based on my experience there is nothing to fear with Plaquenil--I have taken it 9 years along with several other meds which have cautions but have all been helpful to me. You do need to evaluate the risks / benefits that you personally experience. The illness untreated presents a risk so you will need to chose the best option for your body and peace of mind. The article on this site mentions that many general physicians also follow RA patients--perhaps that would be a possibility. Treatment at best is frustrating and requires trial and error--we all need to vent at times. Do Well !
 
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JoWiser responded:
Never give up, esp when the going gets tough! My RA started as a young teen, & I'm now 60. Almost every single RX out there does suppress the immune system. But since ours is in overdrive, lowering the immune system happens. Just take a multi-vitamin every day & protect yourself around germs & viruses. Always get a flu shot pneumonia shot too. I've been through five RA docs in my life, & none of them found the answer for me. I've tried a gammut of diff drugs they recommended. Treating aggressively at onset, is the best answer. My right hand is more a claw, than a hand. But I keep smiling & researching on my own. Mayo Clinic has a good website, also Arthritis Foundation. The AF mag is excellent & costs approx $20 per yr. Aquatic therapy is the best for swollen & sore joints. Protect your joints at all costs;
take your list of concerns to your doc appts. Education is the key-----join a support group if at all possible. I started one in my hometown in 1998 & it's my passion. Our motto is SHARING & CARING !!!! Listening to music always makes me forget my troubles temporarily. Get yourself a copy of the Arthritis Self-Help bk (it's marvelous). My goal every yr is: get control of my RA, instead of letting it control me!!!! It's a difficult road, but rely on friends & family to guide you down the path. There's always someone out there, in this world, who is much worse off than we are. The best docs around my area, are 90 miles away...........but so worth it!
May your prayers go up, & His blessings come down!!!
Laughter is good medicine too----I highly recommend it.
 
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Jes67 responded:
I was just diagnosed in December 2010 after thinking for 6 months that I had fibromyalgia (now I wish I had that:) I've seen my rheumatologist once and he did an MRI, a million blood tests, 14 xrays and put me on steriods for 2 weeks, it was sooo wonderful no pain for a month now, but it is coming back. My next appt with him is in 10 days and I expect he will put me on the dreaded drugs. I think to stop the deformities and pain, etc you have to be on the immune suppression drugs because RA is an auto immune disease you HAVE to suppress your immune system. I know how you feel, its weird but I've always been so proud of my immune system Im an RN and around really sick people coughing all over me everyday and I never get sick, so once I get on these drugs that's over huh? Since we were both just diagnosed we are probably still in shock and mourning our lost health? I would love to keep in touch with you. My rheumatologist is 90 minutes away but I live in Eastern Wash. state and we have to drive 45 minutes just to get to work or the grocery store. hope you hear from you.
 
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hortens responded:
You don't like medication for RA, neither do I
I visited Dr Frank Sweet in Lake Havasu Arizona (928)453 5139

I am living a normal life with nutrition and vitamins that he prescribed for me...Hope you can make. better than chemicals in your body.
 
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sickandtiredofbeingsick responded:
I feel your pain. I am going through the same scenario. Keep in mind that American medicine is more like "assembly line" medicine. The only word that Dr.'s frequently use is "NEXT! My RA Dr. would not give me my blood test results until I came back for my next appt; which they made 6 weeks after the blood tests. Then they took an MRI and won't give me the results until my next appt. in APRIL. Unacceptable. In the mean time I must add I not only have RA, but the possibility of CHEIROPATHY. Or as know as DIABETIC HAND DISORDER. I never heard of this, but am in a diabetic research study DCCT/EDIC and they made me aware of it. Not much on the web about it. But it is similar to RA. I also have severe CORONARY ARTERY disease, which complicates the idea of what meds can I take. I have stomach problems as most diabetics do.
I am scared to death about Plaqunil. I know people who took it and called it "poison."
My doctor is awful and will not entertain anything but Plaqunil. I keep telling him that I refuse it and he blows me off. So Tylenol and Advil are my only sources for pain and it sucks.
There has to be a better way for someone like me with so many other diseases to take the pain away.
 
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mom2giqm replied to wohlgemuthnaomi's response:
I am in Palm Coast, FL.


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