Information & encouragement to fight RA
What proof exists that a medication is safe? Ha! When first diagnosed the (former) Rheum handed me a few papers, told me to read them, sign and bring them with me in two weeks for my return visit. He then told me to “get over the deer in the headlights look and get on with my life”. The papers were a very short recap of methotrexate and its side effects. The next page was a legal release, saying I understood the risk. You had to sign the release before he would issue a prescription. (But, doc, if you say it’s safe to take why do I have to sign the release?)
For about ten years prior to the RA diagnosis I had several issues with my health that no one, except the GYN, was interested in helping me determine the reason. At that point I started asking for copies of my labs. I keep them in a notebook – “just in case”. I have found if I ask a question about them I most often get the response “we’ve got it covered” or that the results are “within the framework for a person with your diagnosis.”
Even my vets are the same – I recently asked a question about an eye surgery for my dog. The tech told me – you should not read on the internet, you don’t have a degree and you just get all worried – oh yes, and the specialist doesn’t have time to deal with your questions.
And whether proof of safe medications or clinical trial data – do they really want us to know the truth? How many times have the FDA warnings for side effects been completely dismissed? Perhaps that is why they restrict some of this information to professional membership only. We have freedom of information in other areas – why not with medicine?
funny you mention that Donna. I haven’t heard of it many times – but that’s how I got the “news” I actually was “diagnosed with RA.” Dr Laptop who I’d seen one time ever – handed me a pile of blurry pages with words mis-spelled – that removed him from responsibility of consequences if I took a dmard.
I took a long look at the possible complications and side effects involved with DMARDs, and the PERCENTAGE of patients experiencing those effects. Then I thought about my Momma and what she went through with her RD. I took my chances. Now I’m on MTX, Leflunamide, Plaquenil and Simon Aria. And I’m finally feeling a bit better – I THINK! Still having major problems with fatigue.
I suppose the fact that I’m now well into my mid-70s is also a testament to my medical care. 😉
Love to you
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