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Old 10-23-2016, 12:16 PM #1
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The treatments that are offered at a rheumatologist are all very
serious. Compared to them, the Plaquenil is the least toxic.

But compared to OTHER drugs the medical arena has (except for chemo drugs) for many other conditions, it is quite toxic.

So the rheumies would try their least toxic regimen first, and that would be Plaquenil.

So it becomes a matter of degree, and understanding that rheumatology is rather unique. Plaquenil also has some disease modifying potential whereas a symptom relieving drug like gabapentin, does not. Doctors are used to "managing" treatments but some are better than others. Also not all patients are perceptive enough to communicate with doctors (my husband is one of this type) and so a serious side effect may be missed by a this kind of patient.
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Old 10-23-2016, 03:43 PM #2
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Thanks
Oddly I tolerated well the aggressive chemotherapy for Lymphoma, which included high dosage of prednisone and I didn't have any problem to get rid of it later.

But I get tons of allergies, side effects and complications from the simpler things such as the skin biopsy, the glue of the electrodes in a sleep lab, and can't even tolerate the large amount of salt required for POTS.

I don't know whether the Plaquenil worth the risks, will have to think about it, and discuss it with my neuro when I will be there next month. I preferred to read about it and to ask here before discussing it with him.

Quote:
Originally Posted by mrsD View Post
Doctors are used to "managing" treatments but some are better than others. Also not all patients are perceptive enough to communicate with doctors (my husband is one of this type) and so a serious side effect may be missed by a this kind of patient.
Maybe your husband counts on your knowledge ?

If I didn't questioned, checked and rechecked every doctors' recommendations I wouldn't be alive today...
Not to mention the amount of efforts and time (years) it took me to find a doctor who took the autoimmune options seriously, diagnosed the SFN and let me get a real immunological treatment that finally makes a difference and gives me hope.

Last year a rheumi told me I've got two problems, the first is that I know too much, and the second is my medical problem. Later she said that I need to take X and that she doesn't want to hear what I've to say about it.
Well.... this was the last time I went to her...
I found a much better rheum knowledgeable and emphatic..
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Old 10-23-2016, 11:41 PM #3
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I use a chart to check for any signs of vision changes...yes, this is done at home.

As MrsD has said, Plaquenil is one of the least toxic for rheumatologic drugs...but as with any drug, it comes with side-effects. I, personally, have experienced no side-effects from it...and know many others who have not. But of course, there are those that cannot take it due to GI upset (most common) or other reasons. There is no such thing as a risk-free treatment...especially when it comes to treating rheumatological conditions. You just have to weigh the pros/cons and risks vs benefits.

You are doing the right thing...gathering information to make an informed decision. The decision you make can always change. You can stop taking it if you have any negative side-effects (without permanent harm), or if you choose not to take it now, you can decide to try it down the road.
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