Have to stop the plaquenil for my eyes

[Cdbhappy]

I've taken plaquenil for 3 years and it helped calm down my immune system i.e. i did not get the face rash weekly, WBCs improved,and fatigue not as debilitating except in bad flare. I'm a bit
nervous about the change, but I also like being able to see, so I stopped 3 days ago.   So far, so good

Have you stopped the plaquenil?  And if so, when if ever did you notice a change?  I see my Rheumy in two weeks to discuss alternative treatment
Thanks for your input.  My daughter is getting married at the end of this month and I would like to be on an even keel so to speak for that day.
Cdbhappy

[Katybarstool]

Cdb

Sorry to hear you have to stop the plaquenil. Can you explain why? I've been taking it for about 2.5 years, and would hate to be without it.

I hope you stay well for your daughter's wedding.

Hugs
Kathyx

[anita]

You don't say what it has to do with your vision...please explain.

[Styx]

Who told you that you needed to stop?

Styx

[Cdbhappy]

The first evaluation of my eyes revealed I have macular degeneration at a relatively young age (45yrs).  Since both plaquenil and macular degeneration affect the retina they have watched my eyes closely. Last year they suggested stopping it because of the risk but I was afraid to stop and there was no advancement of the MD. This exam showed a new drusen on my right eye near the center of the macula which means I may lose the central vision in my right eye. So he recommended to the rheumy to stop the plaquenil. She agreed and this time I agreed also. 

Hope this makes sense. I just want to see and keep the sjogrens symptoms at bay . . . .i guess I want to be me about 5 years ago   Lol

Cdb

[prunella]

Such a conundrum.
I am watched closely for MD. I was severely myopic for many years, hence the thinning of the macula. Then I had cataract surgery resulting in improved vision, but the same old macula. 
Do you know if your MD is wet or dry?  Dry is less likely to continue to progress.


I will make my usual suggestion of dietary changes to help with symptoms such as fatigue, aches, dryness etc.  I think a diet without wheat or dairy helps as much as the plaquenil does.
BTW, I am not saying dietary change is easy or appealing, especially when you are gearing up for a significant event like a wedding. I hope you have fabulous MOB dress!

[Cdbhappy]

Prunella,

I have dry AMD and the doc says if I lose one eye he can save the other. I'm selfish and want them both.
I do have a fab MOB dress and look forward to the party, but not to how I will feel the day after, sore and broke. 
I appreciate the dietary advice and have actually cut out most dairy from my diet recently. Dairy just stopped tasting right?  But I do have wheat in my diet.

Cdb

[Styx]

Hmmmmm... I wonder if there is data on Plaquenil and macular degeneration.

In its absence, that is a sticky situation :-/

Styx

[Joe S.]

One of the side effects of plaq if blindness. I have no idea how this happens. I went blind for six hours with my first dose until my system cleared it. After I had trouble with MTX, I knew that I had to look for other options. I thought that maybe there was nothing wrong with my immune system and it was doing what it was supposed to. I came to believe that something was damaging our cells making our immune system attack our own cells.

In my research I stumbled across L-form bacteria notes from the Lister institute over 100 years ago. A friend that is a medical technician told me how nano-bacteria is formed. In a petrie dish that that you culture a bacteria, you kill the bacteria with an antibiotic. When the bacteria is dead, there is a ring of small black dots around the outer edge of the dish. If the dish is used again without being cleaned properly, the bacteria will reappear.

In the nano bacteria form it uses gene six and gene seven of the mitochondria DNA to reproduce. This process damages the mitochondria DNA of your cells. As damaged cells your immune system will attack them. Some of the documentation that I have read on this was reported in Popular Science (Cell from heck), and Discover (Insanity Virus) magazines. The first article I read on it was in Popular Mechanics as a new Bio-weapon from the the early 1960's.

Acetyl L Carnitine is one of the supplements that works to repair mitochondria DNA. There are other supplements that will preform a similar function. R-Lipoic Acid will remove the debris from the repair. I read about these two supplements in Readers Digest as supplements to improve memory and their benefits to those with memory issues like Brain Fog. I noticed that there are other benefits from these supplements and had to check out what they really did.

I had taken them for years before my Sjogren's went into remission. I do not know how long remission will last or if this could be a calm before a storm.

Most medical people do not follow my line of reasoning.

As a Reiki Master I tried to heal myself. Reiki helped me manage my symptoms but would not remove the nano bacteria. I asked my Reiki guide about this and was told that the nano bacteria is considered to be living. Reiki will not harm any living thing. This line of reasoning is what brought to view auto immune diseases differently and seek the information above.

You can live without plaquenil. you may even find you can stimulate positive changes in your situation. I try to have a glass of carrot juice to help my body create endorphins. I use Reflexology to send the endorphins to help manage my pain. Reiki helps me to heal and manage symptoms. Meditation also helps me control pain. You are at war with this disease do what you can to fight it. Do not rely on others to fight it for you. Accept their help, use what they offer, but find what works for you.

[Cdbhappy]

Thanks Joe for the info and suggestions. I try to keep an open mind to alternative therapies and am trying to find that balance of what will work for me. 

Cdb