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.
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.
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
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
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 :)
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
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 :)
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.
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.
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.
Quote from: Izabelle on February 02, 2013, 08:47:58 PM
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
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.
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
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.
Quote from: jessiblah on February 03, 2013, 06:14:28 PM
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
Plaquinel saved my life, it took about 5 months but it reversed almost all my symptoms especially the dry mouth. Stick with it, it is a life saver. Good Luck.
With xerostom?a for nearly three years and I feel its starting to get worst. Has anyone here used Plaquenil only to improve sicca and has it worked?
There's an study from last year were is written that plaquenil didn't work at all in primary sjogren (sicca):
http://jama.jamanetwork.com/Mobile/article.aspx?articleid=1887760
I am asking this to ask my doctor for the best medicine to improve sicca symptoms.
Quote from: Dry1000 on February 04, 2013, 05:57:37 PM
Plaquinel saved my life, it took about 5 months but it reversed almost all my symptoms especially the dry mouth. Stick with it, it is a life saver. Good Luck.
That's great to hear. I wonder if I should ask for this to my doctor. I was also considering ziduvodine (AZT).&
I just saw my 5th rheumy yesterday and really like him. He explained plaquinel to me and now I think I realize how important it is for my partial recovery. I've not been able to tolerate it in the past, but I haven't tried very hard, not realizing how much difference it can make. So I'm on my second day of taking it and yes I'm nauseated but I'm going to stick with it. I'm just so tired of this fatigue. I feel like I'm missing my life and sleeping it away. After not working for 6 years and just getting worse and worse I'm ready for a change for the better. I hope I can stick with it and I also hope it doesn't take 6 months to make a difference. Thanks for listening!
I was put on plaquenil the first time a few years back. My diagnosis wasn't very clear yet but I had a positive ANA, Sed rate, joint pain and fatigue. I did notice at 3 months that things weren't as dry. My rheumy told me it took 3 months. I also think that 200 mgs is a fairly low dose.
If your budget can handle it, you might try name brand plaquenil. I found that to be easier on my stomach. I have since been able to tolerate the generic.
And some people do go on steroids if they can tolerate them when things get too bad. Good luck to you!
Have to agree with you Deb about changing from Generic form of Hydroxy to brand name Plaquenil. I had really bad a gastric problems but find that Plaquenil has been much beter.
There was a study in 2014, "Effects of Hydroxychloroquinine on Symptomatic Improvement in Primary Sjogrens Syndrome" that concluded that the use of it compared with placebo did not improve symptoms during 24 weeks of treatment. They recommended further studies to evaluate longer term use.
I tried the generic version of plaquinil and had to stop because it tore up my stomach. It did nothing for my dryness which has been rapidly getting worse.
If you take it, I hope you're one of the lucky ones it seems to work for.
Hi Ashler. Plaquenil has helped me with dry eyes and mouth. I feel less inflamed on it.
Ashler, I am new to Plaquenil started 1 month ago 200mg 2 times a day.I have had neuropathy (numbness and pain in legs and hands) since 2007. I was given Neurontin(Gabapentin) and took it until 5 months ago because I thought it wasn't doing anything. I was wrong the pain and spasms got worse so I started them again. I still have dry eyes,mouth,nose, skin and every other nook and cranny. I hate the eye drops they only last 20 mins and I am not going to do drops every 20 mins. I am waiting for Restasis approval from Ins. I hope that works better. It is to early to say if Plaquenil is helping. I am also always tired and when I am online reading information or playing a game I start t doze off. All this plus getting old is not fun LOL. Ashler just be patient (don't you hate when people say that LOL) and know nothing is a cure it is just to make it more tolerable. I have 4 autoimmune diseases that I know of and I didn't know what autoimmune was until 3 yrs ago but it explains the 25 yrs of health problems that everyone thought was in my head. I wish you the best.
Many people don't have luck with the plaquenil and many do have luck. It should not be dismissed lightly. It is an antiparasitic drug that is used to treat malaria and has been on the market for many years.
When being used years ago patients with inflammatory (RA, etc) diseases found that their symptoms were decreasing. It has been used for treatment of lupus, RA and other autoimmune/inflammatory diseases. It is not an immune suppressant. It has been reported to decrease pain from inflammatory diseases, decrease fatigue and some people do find that their dryness decreases.
I went on it about 5 years ago and I have found that I have to quit taking it when I am on antibiotics because I seem to get increase in agitation, dizziness, etc. When I quit the plqueil for there couple of weeks I was surprised to find that the cartiledge that attaches my nose to my palate becomes very sore and if I even wiggle the end of my nose I have pain. My ENT informed me that the plaquenil was helping that inflammatory issue. It is amazing how it improves things.
I feel better on it and ache less also--no change in dryness, but I didn't expect that. Just having something that helps and improves daily life is worth it. Plaquenil is now noted to be the first choice of treatment for Sjogrens. Thankfully, some of the docs are starting to catch on to this. I still take the generic so don't know about the trade name. I always take it with food and that does help with the nausea. It takes time for the body to get used to it.Some people start out with 200 mgm a day til they get used to it and then increase the dose. Good luck to all. Irish
I've had bouts of "angiodema"! I researched and that was the closest description if found, too. Usually my eyelids would get puffy, sometimes down to my lips-when I woke up. By the time I could've been seen by a doc, it was always gone (so, a few hours into the day). Very bizarre! Around that time, I was also having trunk rash. My immune system was being very reactive for some reason. BUT specifically about the face swelling, I think it may have been related to cheap grocery store peanut shells/peanuts. While I've never been formally diagnosed with any allergy (other than meds), I noticed that I was puffing up after having eaten from those bags. I loved sucking on the whole salty peanut shells til they were soggy, then eating the nuts (while spitting out the shells). When I stopped eating them (ALL peanuts, because I wasn't sure), the face swelling stopped. In hindsite...i wonder if the shells were moldy. I'm very sensitive to mold in the air so it's logical that ingesting mild would not have been good!
And...along those lines..fwiw I was also allergic to plaquenil. Like the other drug I'm allergic to (lamictal), I started getting a trunk rash and had to stop. Stupid immune system. Good luck!
Hi :)
A tip for anyone starting on Plaquenil - or who find it hard to tolerate.
Start slowly. Wean onto it. I was told this by my rheumy. Start with half a tablet every second day. Do this for a week. Increase to half a tablet every day. Another week. A full tablet one day - half a tablet the next etc etc. You get the picture. It takes what seems like ages to get on the full dose but its a drug that takes ages to work anyway.
Always take with food.
Weaning on slowly may stop the nausea developing as the body adjusts slowly. Good luck!
Take care - Scottie :)
Anyone who has swelling or a puffiness of the face, nose area should really get to the doctor and get a diagnosis. If it is angioedema you need to have a plan of action because this can spread fast into ones airway causing emergency situations.
The reasons for angioedema are hard to figure out but it is almost like an allergic reaction without having a true allergy. I have known people who did well on daily antihistamine therapy that kept this in check. I think that it is related to a histamine release in the body without the allergic trigger. May be wrong, but seems to be something like that. Irish