New to Plaquenil

[Izabelle]

Hi all,
I am a 23 year old female suffering from Sjogrens. I have been on Plaquenil since November 31st, 2012. Started off on two 200mg tablets a day which my body couldn't handle. I now only take one 200mg tablet a day. Specialist says this just means it'll take longer to work.

How long has Planquenil taken to work for you? Because my bloods taken before i started on Plaquenil are not much different to having been on them for two months

Onto something else...does anyone else suffer from fluid in the face? Im not talking gland swelling, but more than that. Fluid in the forehead, appears as though i've had Botox...swollen eyes, etc.

[Tivia]

I wish I could get on plaq, my rheumy wont till I get joint pain. But from what I have read on here it can take 6 months or more to kick in. Some people say start out low and slowly increase the dose to avoid and tummy upsets and other issues.

As for the swelling I am not sure, did you take prednisone ? Did it just start after you started the new meds, you should mention it to your doctor.

[eyeamdry]

Izabelle, it can take several (maybe 6?) months for Plaquenil to work. Ande taking just 200 mg/day, this must be the  case instead of working sooner.  Lucy

[slccom]

For most people treatment doesn't affect blood results in any significant way, from what I've seen. That doesn't mean it isn't working.
Sharon

[Scottietottie]

It took me 6 months before I felt a difference from Plaquenil. After 3 months I told the rheumy iy wasn't doing anything but that is when he raised my dose from 200 to 400. I was told to wean onto it slowly though to let my boday adjust. I started with half a tablet every other day for about a week and then a whole tablet every other day and then introduced another half a tablet so I was taking some every day etc etc. Always take with food.

It still took 6 months.

Good luck. Take care - Scottie 

[valene2009]

what do u notice from plaquneil. i posted something too about going back to 400 mg from 200 mg..
what is it sup to help with?  i am told it doesnt slow progression and besides helping achey joints what does it do??

can anybody help..? its nice to hear from those u actually take it instead of a docs opiniion

[Scottietottie]

Well I was told that it did slow progression and the bloodwork I had that was indicative of lupus went back to normal after a couple of years of taking Plaquenil. My rheumatologist said that was thanks to the drug.

The main thing it helped me with was fatigue. I didn't notice a decrease in joint pain but I have read in here that it has helped others with this.

It is certainly not a quick fix. It takes ages to work but I do believe it does.

Take care - Scottie 

[LisaMarie]

I take three medications -

Generic plaquenil
Neurontin
A very small sleep aid (can't remember the name)

I cannot say that one helped with anything particular but the three of them have helped me with:

Fatigue
Brain Fog
Bone pain
Heart palpitations
Numbness and tingling

it took me about 6 months to see the difference with the first three using plaquenil.  The other medications were added around that time to help with the numbness and tingling.  The palpitations ended at some point too.

[deniselb]

I've been taking 200mg twice a day since last February. It only took about two months before I started feeling a lot better. My joint soreness completely went away until a couple of weeks ago - now I'm feeling it again a bit but not too bad.

The fatigue is harder for me to gauge. It's been a problem all my life and on any given day it's hard for me to distinguish fatigue from Sjogren's from fatigue from depression, sleeping badly or being under-exercised. But it's definitely better than it was before I started Plaquenil.

[Izabelle]

Thanks for your replys everyone.
The Plaquenil on 400mg a day gave me diarrhea and nausea so i cut back. The face swelling has always been a problem, my doctor says is could be Angiodema. When this happens again, even if it's mild, he's told me to go to the doctors to be tested.
Has anyone else found that they've suffered numbness/tingling from Plaquenil? My feet get numb and tingly, and now random patches on my leg are starting to get numb.

[slccom]

Thanks for your replys everyone.
The Plaquenil on 400mg a day gave me diarrhea and nausea so i cut back. The face swelling has always been a problem, my doctor says is could be Angiodema. When this happens again, even if it's mild, he's told me to go to the doctors to be tested.
Has anyone else found that they've suffered numbness/tingling from Plaquenil? My feet get numb and tingly, and now random patches on my leg are starting to get numb.

That neuropathy is a not-uncommon symptom in us Sjoggies. You need to go see a neurologist, preferably a competent one who is familiar with Sjogren's.  I doubt that it is from Plaquenil. There are drugs that help with it, such as Neurontin.

Sharon

[jessiblah]

I have had neuropathy(not diagnosed but boy do I feel it) well before starting Plaquenil. I recently within the past three days am now starting plaquenil at 400mg/day. I have been to 3 neurologists and 5 rheumatologists. All of the neurologists said the nerve pain was autoimmune and to talk to the rheumatologists and 4 of 5 rheumys said it was brain/neurological and go talk to the neurologist. I have had every test except for a nerve and muscle biopsy and everything came back normal so I think that truly does point back to the sjogrens. I finally went to a new rheumy about a month ago and she kept asking why I wasn't put on plaquenil years ago. I said I had no diagnosis of anything and the drs didn't want to put me on it without a diagnosis. She said that was absurd and said if I had symptoms I should have been put on plaquenil. My neurologist finally said to me that the rheumatologist should be able to take care of my nerve pain now since we have basically ruled out anything brain related.
My rheumatologist said that I should have been put on plaquenil long ago so to prevent my symptoms i am having now. Hopefully this works for me and I don't get any of the side effects or the eye problem from it. I am afraid of having to be in a wheelchair by the time I am 30 because I can barely walk now because of the joint pain in my hips, knees, and worst of all the ankles.

[slccom]

Jessie, ask about neurontin for the nerve pain. I am also on Arthrotec, an anti-inflammatory. Interestingly, in my 20s I had foot pain when walking. (I also had Sjogren's, but undiagnosed.) I got put on Voltaren, another anti-inflammatory, and found that my foot pain went away. It was arthritis. So did my other joint pains.

Sharon

[jessiblah]

Sorry to say but neurontin has not worked for me. I have been on voltaren too. You name it i tried it. I have a whole pharmacy in my closet haha, mostly of NSAIDS. I have given up on most of these meds because nothing touches it. I have found muscle relaxants help when I have severe nerve pain flares so I have made sure i don't use those too often as i do not want to run out and I feel weird asking a dr for the muscle relaxants. They look at me like I am a drug abuser. I keep telling them I have mostly full bottles at home of opiods and would love to bring them in to show them that i do not abuse drugs. Plus the last time I took anything worth abusing was in september when i had shoulder surgery and it made me very sick so I am not a fan of opiods anymore for pain.

[slccom]

Sorry to say but neurontin has not worked for me. I have been on voltaren too. You name it i tried it. I have a whole pharmacy in my closet haha, mostly of NSAIDS. I have given up on most of these meds because nothing touches it. I have found muscle relaxants help when I have severe nerve pain flares so I have made sure i don't use those too often as i do not want to run out and I feel weird asking a dr for the muscle relaxants. They look at me like I am a drug abuser. I keep telling them I have mostly full bottles at home of opiods and would love to bring them in to show them that i do not abuse drugs. Plus the last time I took anything worth abusing was in september when i had shoulder surgery and it made me very sick so I am not a fan of opiods anymore for pain.

Voltaren stopped working for me, and now I am on Arthrotec, which is a combination medication that does work for me. What I loved was Vioxx, but they took it off the market. Celebrex didn't do anything for me, but Vioxx gave me my life back.

You might want to bring the meds to the doctors, and I would look for new ones who don't treat you like a faker. I hope our shoulder is pretty well healed. I had to have rotator cuff surgery and it was, as the surgeon said, two full years before I totally had it back.
Sharon