Haven't been on in awhile because I've been so busy and have been doing fairly well. But I have missed you all!
Anyway, we recently changed insurance and I got to finally switch doctors. I went to my new primary care about a week ago. He actually set down with me, talked, asked questions, took a complete medical history. It was amazing!
He ordered a TON of bloodwork, stuff my old doctor's never checked - vitamin levels, hormone levels - plus all the usual suspects. He wants to do a full body thermography to see which organs are damaged or in danger and where we should focus our attentions. So far, so good right? My only hesitation, not really hesitation just not sure how I feel about it really, is that he is big into a more natural approach to medicine.
I love the idea. He wants to do a cleanse diet and then for me to go see a nutritionist. I've been wanting to see a nutritionist since having to switch to the IC diet. And I've always been a person who dislikes taking medication. But I feel so much better now on the Plaquenil and Evoxac than I did a year ago. So I'm seesawing back and forth about how I feel about this. One minute excited for a more natural approach and the next terrified that when it's time to try life with no medication I'll end up right back where I started.
I know there are some people here who have a more natural approach to their treatment. Any thoughts from anyone????
Did your doctor specifically say he wants to stop your medications? He sounds really thorough, otherwise. I would just tell him it's not negotiable. You need your medications as much as you need a healthy diet and thorough monitoring of your overall health. It's not an 'either or' situation imo.
I second that!
He said he would like to wean me off them. Said he wants me to keep my sight and not have to worry about all the side effects. My opthamologist says that the risk of retinal toxicity is so rare he's never in his 25 years seen a case, and he sees a lot of plaquenil patients. He did say that I would be seeing a rheumatologist too, and I know the rheumatologist will keep me on the plaquenil. But then he didn't give me a referral like I asked for, so who knows when I will get into a new rheumatologist.
My biggest fear - and I know it's not a completely logical fear, but who says fear has to be logical - is that before I was diagnosed I ended up with Guillian-Barre Syndrome. My old rheumatologist had said it was very likely that the fact that I already an undiagnosed and untreated Autoimmune Disease definitely contributed to my body getting that out of control. I have no desire to ever go through something like that again.
Plus I kind of gotten used to having a little more energy and feeling a little more human these days. And I know that's the plaquenil.
Hi Roetta,
I would do both. I would do the cleanse, see the nutritionist, eat the way they tell you to eat and stay on the plaquenil for the time being. Take a wait and see approach after you see how you are feeling. I know personally I would love to not have to be on any meds.
I have a more holistic/ natural doctor & she said she has no problem with plaquenil that my rhuemy prescribed because I needed it & it has helped.
You need to be honest with your doctor if you aren't willing to stop taking plaquenil. Maybe together you can come up with a plan that mixes philosophies & you feel the best on.
Good luck! Carie
Quote from: roetta on October 04, 2011, 12:43:34 PM
My biggest fear - and I know it's not a completely logical fear, but who says fear has to be logical - is that before I was diagnosed I ended up with Guillian-Barre Syndrome. My old rheumatologist had said it was very likely that the fact that I already an undiagnosed and untreated Autoimmune Disease definitely contributed to my body getting that out of control. I have no desire to ever go through something like that again.
Plus I kind of gotten used to having a little more energy and feeling a little more human these days. And I know that's the plaquenil.
It doesn't sound like an irrational fear to me. You know how bad it was before you began treatment and you don't want to relapse into that suffering all over again. I would keep an open mind toward working with this new doctor. He understands how serious the disease and it's complications can be. I have a hunch that he will respect your viewpoint. But keep us informed. We're cheering you on! :)
Here's something to consider. If you stop the Plaquenil, then it would take another 6+ months for it to reach its full therapeutic level again. I would personally try to stay on it as well as adding in the other suggestions if you so choose. I think it is a great idea to see a nutritionist.
One thing to consider and I don't know if it's important to YOU, or not. Suppose the doctor doing this thermography turns up "new diseases" and they don't turn out to be all that important in your case. This could put you in another category for insurance. Also this dr probably gets something for this total body thermography, I'm guessing. That could be wrong. Usually, new drs want to start all over again and do their own kind of "testing." This bothers me as sometimes overdoing tests. This is just my own opinion.
Your situation certainly doesn't sound off base, but do it carefully like your friends here have advised. Lucy
To look at it all of this from an experiment perspective - you should only change one variable at a time. So, stay on your current meds, and do the nutritional experiment. If you feel better, that is awesome. You can then consider the experiment of coming off the plaquenil. If you feel even better after that, super awesome. If not, you can go back on.
I did the experiment of coming off plaquenil after being on it for a year. I didn't think it was doing much for me. I found out it was doing a lot to relieve joint pain, and after a month I went back on it.
Do try the notion of "experiment" on your doctor - it's a well established approach.
Thanks for all the feedback! It's so great to have a place where you can go and people care, not to mention having people actually know what you are talking about. I tried talking to my husband and a good friend, but since neither one of them knows what it feels like to be me now or me before plaquenil they really weren't much help.
I think I will take it one step at a time. I'm not willing to give up the plaquenil for now, but I am excited about meeting with a nutritionist and trying a more blended approach to my health. So far the extra bloodwork and his desire to do a full body thermography seem to be him wanting to start from scratch and really see for himself what my issues are. I think as long as I keep being my own advocate too and voice my concerns and opinions about things there's a possibility that he and I can be a good team.
I see him again on the 21st to go over the bloodwork and talk about what's next. I will for sure let you all know how that goes. :)
Are you sure you need a referral to see a rheume, a lot of times these Dr's make you think you have to have one but you really don't. I freely go from Dr to Dr and I wouldn't have it any other way. Check with your insurance co.
It sounds like maybe it would be worth letting this Dr run the tests and see how they come out. But if you don't want to come off the meds then don't...but be up front with him, tell him how you feel. Make it a partnership, not a one man show! It's your body....and you can have a say.
Last month after my regular ding dong Dr said there was nothing wrong with my heart but sent me to the cardio any way after my insistence, what he found was shocking to say the least!!
Stick to your beliefs, and what you want!
Stay Well
Mary