I have recently been diagnosed with Sjorgrens, although I believe I have had it for years. The RA has perscribed me 400mg of Hydroxychloroquine but after a month of taking the medication I noticed that I was having trouble reading documents. Can anyone confirm if this side effect will settle down, or will it only get worse? I am also having a lot of pain in my Chest, Back, Shoulders and neck.
Mandy, you need to get your eyes checked by an ophthalmologist asap, making sure to tell him you're on this drug. Hydroxychloroquine (aka Plaquenil) can cause retinal damage in a few cases. Did your rheumatologist mention this? And are you able to contact him/her to ask about it? Sorry if that's a silly question, but I live in a country where you can just pick up a phone and call your specialist.
On the other hand, your reading difficulties might just be down to the Sjogren's itself. Even though I don't have serious dryness of my eyes any more, I still find I can't read for very long before things start getting blurry (and I'm not on any medication). But you really need to consult at least your GP and preferably an eye doctor. The joint and muscle pains could also be caused by Sjogren's.
I know what you mean about feeling you'd had it for years before getting a diagnosis. That seems to be the case for pretty much all Sjogren's sufferers. I had a whole ragbag of apparently unrelated symptoms for ten years. During that time I consulted my GP, dentist, a rheumatologist, a dermatologist and an ophthalmologist, none of whom figured it out. It was finally my GP who had an "aha" moment and ordered a blood test for anti-salivary gland antibodies.
Hi lily65668,
i have had my eyes checked and were told they are fine, I also have the plugs in my eyes. I am really sensative to medication, I just want to know that if i continue to take the medication will my eyes stablize or will they get worse?
Hi mandy,
When I started the meds I also had pain in the areas that you mention and that did go away as the medication built up in my system. I notice the eye issues you speak of seem to come and go. Sometimes my vision is clear and my eyes are less dry sometimes I have alot of trouble. I can tell you that the medication has helped me TREMEDOUSLY! I started with 400mgs in August of 2014 it took about 4 months to really start seeing the benefits but by 6 months my blood work showed a decrease in inflamation by 60 percent. The terrible pain between my sh!oulders is gone as well as leg pain. My dry eyes and mouth have improved. The fatigue is gone and I have a ton of energy so much so I have to force myself to sit down and rest or I pay the price. You are going to feel better and better it does seem like everyday is different though as far as your body's symptoms. I think the Sjogrens is more responsible for the issues than any side effects the meds may have (keep that in mind) I find AutoImmune disease to be different in each individual and difficult to predict. Keep taking those meds drink lots of water!
Feel better,
Sally
Hi Sally,
Dr's told me that it takes years for the medication to affect your eyes, so i was just worries because i definately noticed a difference in my eyes after the 4 weeks. I think because i work on a computer all day that is why I noticed it so quickly. I will give the medication another try but cut the dose to just 200mg a day. Were you also on the 400mg?
Regards,
Mandy
Mandy,
I am on 400mgs a day. When I spoke to my Eye doctor he said that it is very rare to have eye issues on this medication. Unfortunately I think that people get scared by the info they hear about eye damage and become very hyper vigilant about their eyes. My understanding is that it was very high doses of Plaquenil that caused eye issues in the past. This medication has been around since the 40's you need to trust it. My advice to you is that you start taking the meds. at the prescibed dose of 400mgs a day again don't cut it back they prescribe this dosage for a reason. I can relate to what you are feeling, I went through it myself
I also have trouble taking meds sometimes and I had been feeling sick for so long I was scared and tired and anxious. I had to summon my strength and courage I took the meds 400mgs and it made me sick at first but I wasn't going to quit because I knew it was one of my only options to feeling better. Mandy please power through this. commit to taking the meds for six months and just watch and wait. No one can force you to take it and you can quit after the six months if you want. I am already blind in one eye due to Macular Dygeneration so believe me I was scared too. If you want to improve the quality of your life you will have to be very brave and FIGHT to be well. I know you can do this and you are not alone.
Don't quit!
Sally
I've had SS or well over 25 yrs now....only get dryness...but I take over the counter meds fir this..I was diagnosed with this 2 yrs before Fibro..so I don't really know if the pain I get is from one or the other...I take Amitriptilyne for my pain and muscles spasms/cramps 25mg per night before bed..works wonders..no discomfort..absolutely great sleep..hope you get sorted soon..have a lovely day...be blessed.,:-) xx
We'll said Mandy..
Hi Mandy,
I was reading that many people with SS are very sensitive to light whether it be sunlight, florecent or from computer screens. You mentioned you work with computers. I read that there is a company Theraspec I think, that makes a product that can be worn over your glasses or alone that protects sensitive eyes.
I understand that some people with SS wear it when working on computers. I intend to research it myself but I wonder if something like that might offer some relief to your eye issue. Anybody else heard of that?
Feel better,
Sally
Hi Sally,
thanks for for the info will look that one up.
Hi Mandy ~
I just responded to your other post. I am not taking any medication for my sjogrens however, I did go under extensive testing with the Kelloggs Eye Care Center and was a candidate for "prose" lenses. They are designed to keep the eyes moist and the best part about them, you can see 20/20. One drawback is if your white part of the eye is red, you cannot use them. That is a never ending battle for me so I cannot enjoy the rewards of the proses presently. I'm headed to the eye dr later today and hopefully I can take a drop or something to help that area. Also, I use eyedrops with a gel in it all the time and an ointment at night time. It helps to a degree. I'm in stage 4 of sarcoidosis and sjogrens so it's hard to find that happy medium with me.
I wish you well and also sorry you're suffering from this horrific disease.
Warmly,
Frustrated
Sally ~
The medication you're referring to, is it Hydroxychloroquine (aka Plaquenil) too? My eye specialist is thinking I need to start back on methotrexate and plaquenil for a while. We'll see. I was just curious if you were referring to 400 mgs of Hydroxychloroquine (aka Plaquenil).
Thank you 
Frustrated
Hi Christine
Are you the same Christine I met about a year ago? I know I met a wonderful person by your name and she also had numbers but it's the numbers that confuse me lol
Anyway, I took Amitriptilyne for a while and that med did give me blurry vision. Just saying this because maybe it is your meds and not just the computer.
Best wishes to you and keep well,
Frustrated
Hi again Sally,
That's very interesting about the Theraspec product. I too, will check into this. Currently, when I go outside even if it's overcast, I wear sunglasses, very dark lenses.
Thank you for that good advice!
Frustrated
Just to add my tuppence-worth to what Frustrated has said about amitriptyline. I was prescribed it for depression nearly 50 years ago - long before I suffered from Sjogren's. I gave up after a couple of months because it caused seriously blurred vision (something I'd never suffered from before). I also got a dry mouth and strange tingling sensations in my lips and finger-tips, but not like the pins and needles of hyperventilation. All this cleared up when I stopped taking it.
Hi Frustrated!
Since I gave that info to Mandy I checked out the Theraspecs site and felt discouraged by the prices! I went to the place where I purchased my prescription glasses and asked if they had a similar product they did at more than half the price of the theraspecs! They are called Cocoons Sunwear and are made by OVERX . They fit over my RX glasses and are terrific I couldn't believe the difference and the relief i experienced from the tension of squinting etc. I haven't checked out the site yet to see what else they offer but I plan on it.
Feel better,
Sally
I meant LESS than half the price!!!
Thank you Sally,
I'll check out where I go. Cocoons...how they come up with names. I see why but oh well, nothing to think about really.
Thanks again and you feel better, too,
Frustrated
Yes I was referring to the 400mgs of Hydroxychloroquine (aka Plaquenil)
I figured so but wanted to be sure. Thank you!
Frustrated