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-   -   Plaquinil and neuropathy (https://www.neurotalk.org/pn-tips-resources-supplements-and-other-treatments/185634-plaquinil-neuropathy.html)

Synnove 03-20-2013 11:43 AM

Hi

I just have one short little comment:

I think the way the healthcare system is today, and the way doctor's offices are being run, there is a safety factor missing. And there is something missing in regard to patient's care.

The offices are full of "medical assistant" or other technicians. And the just check the vital signs. They do not caunsel the patient regarding medications or do any sort of case management. And the doctors do not, unless, as you said, we insist.
But the doctor's offices and hospitals and clinics are very well staffed with costomer's service serveys. All the want to know after your visit is " were the staff friendly?' and so on.

Actually, I do not care so much about the friendly ness, but more about medical safety.

There should be RN s and casemanagers in each doctor's office

Sallysblooms 03-20-2013 06:08 PM

The next to best doctors offices have nutritionists that know how to help a doctor if they know nothing about supplements and diet.

The best office is an integrative or holistic MD. I just can't believe every MD would not want to learn the full story, how to help people heal and prevent illness in safe ways. Just bizarre to me how many just write scripts, clueless about damage they cause.

I am so glad many doctors are scientists and love to learn so they can really help.

Synnove 03-20-2013 07:51 PM

Hi Sally6 blooms
Yes, I agree with you so much. We need to put some integrety back into the healthcare system and into the medical community especially.

It has become too much business like and too little clinical integrety , an mostly respect for their patients.

And fore most, I want to mention:
One has to be a doctor one self theese days almost just to find the right specialist. Because within each medical specialty, there are other specialty. So I was trying so hard to find help, but when I saw this or thar specialist, he sent me further to another one who specialize in a particular thing.

But I will say again, a doctor's office and clinics need to have good nurses and casemanagers, and yes, as you said Sallyblooms have nutritionalists as well. Because we try to treat patients as outpatients, not in the hospital

jenng 05-11-2013 05:00 PM

I was reading this with interest because 10 years ago I was prescribed Plaquenil because of parasthesia.

I have never tested positive for Sjogren's (SSA & SSB antibodies), but I had mildly dry mouth and eyes that seemed to be sudden in onset. The weird parasthesias in face, hands and feet started soon after. I had a very mildly positive sed rate and ANA (50/50, if I recall correctly) and a positive antiphospholipid antibody test.
The rheumatologist looking after me at the time said it was possible to have the disease without all the bloodwork lining up.

My mom had the CREST variant of scleroderma, and my maternal grandmother had RA. I think my rheumy back then was pretty confident that I had Sjogren's related vasculitis, and plaquenil was the lesser of the evils for treatment. I took 200mg/2x daily. I took myself off Plaquenil recently since every round of bloodwork since has been negative, even for ANA. My mouth and eyes actually feel fine, but my neuropathy is getting worse. My current rheumy ordered a huge panel of tests when my neuropathy became worse this year--everything negative. It has been about 4 wks now without the Plaq. I figured why not try going without it to see if there is an improvement in neuropathy. I think I am going to just conduct these experiments on myself, lol.

I can keep you posted on this.

Idiopathic PN 05-16-2013 09:18 AM

My neuropathy started after taking Plaquenil. Note: this is post is not to say that Plaquenil causes PN. In my case, Plaquenil was the only new medicine I was taking then. It took, if I remember right, 2-3 months before I felt the sudden itchiness all over my body, the itchiness became pain.... and the pain became constant.

Plaquenil was given to me for my osteoarthritis. I could not take anything with aspirin or Ibuprofen.

ChaucerFan 10-16-2013 06:06 PM

Where to buy enhanced curcumin?
 
In response to this part of MrsD's post:
Another useful treatment is curcumin. It has shown in studies a benefit for endothelial inflammation. A quality version of this has to be used, that has had absorbtion increased. LongVida or Curcugel are examples of enhanced curcumin.

--------------
When my idiopathic PN was first diagnosed, my chiropractor recommended Alpha Lipoic Acid and Benfotiamine. Then I joined this chat board and found all kinds of affirmation for his advice (which I followed). Today I mentioned CIDP (neurologist's current theory), and the chiropractor mentioned "curcumin." Say what? Sure enough, here it is all over this subforum! But I can't imagine the CVS or Walgreen's carries it, especially the "enhanced" versions -- they don't have most of the recommended versions of other supplements. So I'm wondering where you go to get these supplements. Do people order them on line?

mrsD 10-16-2013 06:12 PM

Curcugel 500 is online. Epic4health carries it. And maybe some others now.

LongVida also is online only. Try Amazon first, as their prices are pretty good now.

example:
http://www.amazon.com/Curcu-Gel-Enha.../dp/B001MX615M

As you can see LongVida is more expensive:
http://www.amazon.com/Curcumin-Longv.../dp/B003D0A8Q0


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