Hi;
Someone mentioned using Plaquenil. Several years ago, my rheumatologist suggested to me to take Plaquenil, but I was not sure about taking it, so I declined. Several of my other doctors after that told me that it was not a safe drug for me to take, so I was glad that I had not taken it.
Now, my SS is far worse, so I would like some input on this drug, so that when I see my new rheumatologist, I can make a better decission as to wether it is right for me now.
Fanny
I had an allergic reaction to it so it’s not an option for me anymore but I hear of a lot of people who use it and say it works well
There is a lot of information about plaquenil available by searching the group. "Safe" is a relative term, isn't it? Every individual needs to weigh out the risks and benefits. But I will tell you that plaquenil was the only disease modifying drug that was safe to use while I was nursing my son. When you are on plaquenil, you need to get your eyes checked every 6 months for retinal toxicity. This is very uncommon and occurs over time. I was on it for almost 7 years with no problems due to the medication.
I found that it made a huge difference for me in terms of my fatigue in particular.
My Rheumy prescribed Plaquenil. My Opthomologist said as long as I have my eyes checked annually, he didn't see a problem. I didn't take the drug long enough to see any real change. The problem for me is the cost of the drug. Even with insurance, a months supply is well over $200. I chose to go off it.
Hi,
As far as Plaquenil's effects I can only tell you of my experiences. I'm very sensitive to medications and their effects but in the last three years have had no side effects. I can tell you it hasn't made a huge difference in how I feel but I believe it has helped with fatigue. I get my eyes checked every 6 months and have had no problems. Doctors have wanted to put me on some very strong med's and I've chosen not to go on them due to the side effects. Of all the drugs offered I feel the safest on Plaquenil, also there is a generic that's very inexpensive. Hope this helps with your decision, good luck!
I have been on generic Plaquenil for several years. My insurance covers the generic pretty well as I only pay $10. The first month I started it, it kind of affected my moods. However I think after reading about it, my doctor should not have just started me immediately on 400 mg. I should have worked my way up. It seemed to help for about three years, now I am not sure it is working as well. I have been thinking about tapering off to see what I feel like.
Hi. I've been on it for some time now. A few things to know are; as the others said, you need to get your eyes checked regularly but the actual incident rate for toxicity is low. It takes a good 4 months to build up in the system before you start feeling the full effects of the med. You may have some effects in the beginning like nausea that will go away. For me, it did a lot of good with the fatigue and it slows the occurrence of flair-ups. The joint pain isn't as harsh either. Please remember too that it slows the progression of the disease but isn't going to totally eliminate it. It can be hard to judge….but you may have felt a whole lot worse, much sooner without the med. It really is something to work through with your doc. One of the things I mention to people is that I ask tons of questions and I ask those questions of each of my docs. Everyone has a slightly different way of explaining things which can make more sense than others. And they all have a little tidbit of knowledge the others may not have mentioned. Put together, I feel very well informed in the end.
Had a terrible dermal reaction,which took forever to pass. And it did nothing for my symptoms, although I imagine I was not on it long enough to make a difference
I had a rash from generic but have been taking name brand plaquenil for about 16 months with no problems. It has normalized my sed rate and C-reactive protein and lowered my Ana. I also have more energy
I've been taking Plaquenil since I was first diagnosed with Sjogren's in October. I take 200mg twice a day, so 400mg total daily. I haven't had any side effects whatsoever. I think it might have upset my stomach a tiny bit at first, but it wasn't that bad and it went away pretty fast. The medicine can take several months to start working, but I swear I could feel a difference with the fatigue within about 2 weeks. Before I was taking medicine, I was absolutely miserable. I felt like I was dying. I was so tired all the time that I was pretty much bedridden...I could only leave the house sometimes for 30 minutes or an hour at most, and then I would have to come back home to lay down. But after I started taking the Plaquenil, I was able to be up a little bit longer each day and I didn't have to take as many naps. I was able to get out and do things again and actually have a life. It also seemed to help with my concentration and short term memory problems.
I haven't had my eyes checked yet, but I am going to be referred to an ophthalmologist. My rheumatologist said that toxicity is very rare at these doses, and it's more of a concern when Plaquenil is given at higher doses to treat malaria. I hope it won't affect my eyes, but I seriously doubt it will. I haven't noticed anything different about my vision.
If a doctor suggests a medicine for Sjogren's, don't decline it out of fear. This is a really horrible disease and you need whatever help you can get. Medicine CAN help. Don't get scared by reading about all the possible side effects. Pretty much every medicine has all kinds of scary side effects listed, but most people never get them. And if even like 1 person out of a million reports a side effect, by law the company has to document it. If a doctor suggests a medicine, then you should always at least give it a try. If you get a really bad reaction to it, or get side effects that you can't deal with, then you can simply stop taking and tell your doctor so you can try something else. A doctor isn't going to give you something that's actually dangerous, so it's not like you're going to drop dead from it. Getting a dangerous reaction to a medicine is actually very, very rare. And if you read about Plaquenil, it actually does help a lot of people with autoimmune diseases. It can help with fatigue and to kind of keep the disease in check so that it's less likely to cause problems with your organs.
The only drug I personally refuse to take (unless it's an absolute life-or-death last result) is Prednisone. From what I've read, that stuff has some really nasty side effects and EVERYONE seems to get at least some of them. So far, my rheumatologist hasn't said anything about that, thank God. It seems like he is trying to avoid giving that to me. My Sjogren's has gotten worse lately, and he just put me on Methotrexate for swelling in my glands and joint pain. MXT can be pretty scary too if you read about it, but I'm willing to try it if it will help. I also did read that a lot of people got help from it. I think the Plaquenil is still helping me, but for whatever reason my Sjogren's is just getting more aggressive lately.
If a doctor wants to give you a medicine, then they think it might help you. You should at least give it a try.
There is no "cure" for Sjogren's (at least not yet) and medicine won't magically make all your symptoms go away. But it can definitely help so that you can at least have a somewhat normal life again. I get good days and bad days, but at least with the medicine I have a lot more good days.
I have to disagree about trying whatever a doctor gives you. If you have concerns, research it and discuss with your physician.
“…so it’s not like you’re going to drop dead from it” is an over-simplification and in a small percentage of cases, it’s incorrect.
While it is correct that for the vast majority of folks, there are few side effects, as with any medication, Plaquenil can cause rare, but serious side effects. http://products.sanofi.ca/en/plaquenil.pdf
Luckily for many with autoimmune issues, these side effects are rarely fatal, life-threatening, or even severe. They do exist though so it is wise to discuss your concerns with your physician.
I’m part of a local support group for Lupus. Several members take Plaquenil. They seem to have good results with only mild side effects. I say this to reaffirm what some have expressed already - many people get good results.
Ultimately, we each have to decide for ourselves. For instance, someone mentioned being against taking steroids because of nasty side effects. If I didn’t have Type 1 Diabetes, I would choose to treat flares with steroids. They always work well for me. I have only had a mild jittery feeling for the first few doses. No nasty. That being said, I would never encourage someone to take something just because it had worked well for me.
There is an abundance of information online or at the library. Your rheumatologist should also be able to address any concerns in an educated, reasonable way. Be sure to disclose ALL medications or supplements that you are already taking.
I wish you luck in your journey. Hope you get relief soon. hugs
I was on it for about 8 months. After a hearing check it was found that I have 80% deafness in my left ear. When I phone the rheumy she said it had nothing to do with the medication but if I wanted to stop I could. I then had an operation 2 days later and ended up incontinent for a month. When I got to the eurologist he said that it could have also been a side affect from the planquenil. I then had my 6 monthly eye test done and I had borderline toxicity from Planquenil in my eye. The rheumy is still not convinced it was the planquenil. She has told me to return to her in 8 months and has not given me a replacement medication. After 3 years she has now decided to stop treating me for SS, RA and Fibromyalgia as she is saying my bloods are inconclusive. She hasn't seen any blood results for over a year so I am left unhappy.
Woody, you aren't in Fort Smith or Oklahoma City, are you? I ran into that mindset with my Rheumy also. Now looking for a new doctor.
woody said:
I was on it for about 8 months. After a hearing check it was found that I have 80% deafness in my left ear. When I phone the rheumy she said it had nothing to do with the medication but if I wanted to stop I could. I then had an operation 2 days later and ended up incontinent for a month. When I got to the eurologist he said that it could have also been a side affect from the planquenil. I then had my 6 monthly eye test done and I had borderline toxicity from Planquenil in my eye. The rheumy is still not convinced it was the planquenil. She has told me to return to her in 8 months and has not given me a replacement medication. After 3 years she has now decided to stop treating me for SS, RA and Fibromyalgia as she is saying my bloods are inconclusive. She hasn't seen any blood results for over a year so I am left unhappy.
No I am in Australia. Seeing my GP again soon so will see what he has to say.
Della said:
Woody, you aren't in Fort Smith or Oklahoma City, are you? I ran into that mindset with my Rheumy also. Now looking for a new doctor.
woody said:I was on it for about 8 months. After a hearing check it was found that I have 80% deafness in my left ear. When I phone the rheumy she said it had nothing to do with the medication but if I wanted to stop I could. I then had an operation 2 days later and ended up incontinent for a month. When I got to the eurologist he said that it could have also been a side affect from the planquenil. I then had my 6 monthly eye test done and I had borderline toxicity from Planquenil in my eye. The rheumy is still not convinced it was the planquenil. She has told me to return to her in 8 months and has not given me a replacement medication. After 3 years she has now decided to stop treating me for SS, RA and Fibromyalgia as she is saying my bloods are inconclusive. She hasn't seen any blood results for over a year so I am left unhappy.
First of all congratulations to Gatewaycity. I KNEW despite a rough start and some justifiable fear you were one who would take control of this thing and move forward.I'm proud of you. Yes I am blunt and hard hard on folks sometimes, but I am a pretty good judge of character, and you have plenty of it!!
Someone mentioned one should be afraid of the drugs. My next door neighbor died from a bee sting and my favorite horse from a lightening strike. Both having a similar risk profile to Plaquenil. I'm not sure that means one shouldn't go outside, but it surely means, you know the risks and take appropriate measures to protect yourself. Go to the damn eye doctor once a year, its cheaper than the ER for a pain flare.
As Fanny has learned, while she isn't one in several hundred thosand to have vision problems because she didn't take medication. She is one of the 100% of folks with SS who if they do not treat the disease will have it progress will suffer intensely because of it. Should you be one of the 10% of folks whose disease goes extraglandular, you may regret that you chose to skip some of the upset stomach and other effects of starting a POWERFUL medication. That upset tummy will mean NOTHING compared to how you will feel with every artery in your body inflamed and your heart starting to fail.
There is a lot of jaw flapping from folk about "oh my gawd, the medication is soooooooooo bad" I have been around and had this stuff for years. Generally those folks are in severe denial and somehow figure by exerting control over their medication they control the disease.... Whatever the reason they are wrong. In terms of the medications used to treat autoimmune, this stuff is in the "tic-tac" category. If it helps, jump all over it. The alternative is not good.
Woody, it is virtually impossible for Planquenil to cause any of the symptoms you report in the short time you took it unless you had a pre existing kidney disease. It could not develop "borderline" retinal toxicity as there is no such thing. They may be a reason your rheumy fired you. Given those symptoms, you do not likley have a rheumatological problem but rather a kidney/metabollic issue. I would certainlly explore that arena
Well put...............now I feel like a sissy!
Thank you, everyone that responded to my question about Plaquenil. It is very encouraging to know that so many of you have tried it, and have had very good results. It will be very helpful to me when I see my rhumatologist in a few weeks. Up until now, all that my doctors have been giving me is pain pills. I know that there is no cure for SS, but knowing that Plaquenil is there to relieve the pain, and slow down the progress, is very helpful.
I do see my eye doctor every month, so I am sure that he will keep a very close watch on any problems that Plaquenil may cause.
Fanny
I have been taking it for 8-10 years without any side effects. It helped a lot with the pain and fatigue. It does not seem to help as much now but I am glad that I was able to get relief for so long. I hope it works as well or better for you.
It is important to continue see your eye doctor at least every 6 months. I do and have never had any signs of toxicity.
