Plaquenil is definitely helping!

General
1

I've been taking generic form of Plaquenil for just about a month now (since October 3), and I can't deny it anymore...it is definitely helping. No question about it. I still get a little bit of joint pain sometimes, and I still feel a bit tired sometimes, but nothing like it was before. I have more energy now, and my brain definitely feels a lot sharper. Before, I used to feel like I was spacing out all the time and I even had trouble talking. I just couldn't put my words together. But I feel a lot more alert now.

I mean, I'm not like "Yay !'m all better now! I'm going to jog a mile!" I still don't feel completely normal, and there's no denying that I'm still sick. But at least now, I can have a life. I've been able to get out of the house again and do things, and have fun. I haven't had to take naps all day like I used to. My life has been completely turned back around from what it was a month ago. Before, I felt miserable most of the time and I was grateful for when I actually had a good day. Now, it's the opposite...most days I've been feeling okay and I just have a bad day sometimes where I don't feel well. My parents even said that I seem to be more alert, and my counselor also said that I look better. I'm trying to keep my hopes tempered, but so far, so good!

I'm so glad I changed my doctor! I switched doctors because they weren't listening to me, and kept trying to pass all my symptoms off as being from "anxiety". (Why do so many doctors do that now?! We need to make stricter laws which FORCE doctors to take patients' physical symptoms more seriously!) My new doctor listens and takes my symptoms seriously. I also started going to a better rheumatologist, and he's the one who put me on Plaquenil.

So I'm hoping maybe this will give some people a little bit of reassurance that medicine can help. Also, don't take any crap from anyone! If your doctor isn't listening to you, then don't suffer needlessly! Switch doctors! Demand to speak with a supervisor! Make a report to your Department of Public Health (or whatever the regulatory agency is called in your state or country). Do whatever you have to do! You have to be firm and stand up for your rights. This disease will not go away, and you WILL keep getting worse until you get treatment. So you have to be firm, and yes sometimes you do need to get angry. It's your health, and your life...stand up for yourself.

I like to remember this line..."Anger is more useful than despair." It's actually from a movie, Terminator 3. LOL. I didn't like the movie too much, but the quote is great. When something is wrong, sometimes you just have to get angry and get in someone's face if need be. If you're stuck in a bad situation, anger will motivate you to do something about it, whereas if you are crushed by despair nothing will change. So if someone is mistreating you, get angry. Make written complaints, firmly assert your rights. Whatever you have to do. Anger can be useful if it is channeled properly. The only reason I'm starting to get better now is because I got angry and I refused to listen to the other doctors' nonsense. I knew something was seriously wrong, and I fought to find out what it is and to get the treatment I need.

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GWC I am delighted that plaquenil is working for you ! It appears to be very variable but the effects on joint pain and brain fog appear to be those best treated by it.

Glad you changed medics - It's something I have been advising (and doing myself) for a while now.

Like all humans they are very variable and my experience is that most are poor at listening to the patient or giving the patient any credit for intellect or knowledge. Many are not actually that good at their job because they don't stay up to date even the consultants .

SOME are superb but hard to find and in great demand.

Good luck with your imprivements.

Please make sure you see and opthalmologist every 6-12 months and that they know you have Sjogrens and are on plaquenil it can in "rare" cases cause retinal toxicity and this MUST be monitored.

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I'm so happy for you! On Friday my Rheumy prescribed Plaquenil after blood test came back indicating SS. I haven't gotten the script filled yet. He said for some this med is a miracle, and for others it does nothing. He did indicate it could take six to eight months to see the effects. You are fortunate to have found relief after one month. Do you also have dry mouth? That is one of my biggest complaints.

He also said Placquenil has many benefits. He said it's important to see eye doctor when on this med.

Thank you for sharing, and I wish continued "better health".

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I have had the same exact experience. My doctors have wanted me to take it in the past, but I was having too many gastro problems with it. I knew I had to do something to get better so my wonderful pharmacist helped me work out a plan with my gastro doc to eat a small amount of protein and then take a med to coat my stomach before I took it. I started by taking 100 mg. at night and then increased it to 200 mg 10 days later. I have great docs and a great pharmacist and now the plaquenil has also changed my life! It's been a month and I can actually get something done.

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I am almost at 6 months on Plaquenil and the change is very noticeable for me too. The real test came this last month when I moved. My son is in college so I packed up the place almost completely on my own and have unpacked at the other side....after the all day move, of course. In the past, by the end of the first week of trying to pack, I would've been completely wiped out and in screaming pain. Not this time! I have some aches but nothing too crazy. The first time I needed to nap during the day was about a week after the move. For me, its nothing short of incredible and it makes me very hopeful.

I will say that there are 2 variables though....I started adjusting to an anti-inflammatory diet about 2 months ago so I'm sure that helps....when I was killing my diet on take-out food was the same time I started feeling fatigued again. And while I am on the generic form too, the pharmacy changed to a different manufacturer about 6 weeks ago. I wonder if that made a difference too. (my feeling is that its just like your grandmother's cookies....even if you use the same recipe they don't taste the same)

Good luck and I hope you continue on a positive path.

6

I have heard that the effects and side effects vary greatly with different formulations with plaquenil being the best and some generics giving significant problems especially rashes and stomach probs.

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That's really wonderful. Plaquenil was the first disease modifying drug I was put on for psoriatic arthritis, and it made a huge difference for my fatigue and pain. It took time. I think it was close to 6 weeks or so before I realized that I wasn't quite so dreadfully fatigued.

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Thanks for all your encouragement, everyone!

So far, I haven't noticed any side effects at all. I think maybe the first few days or so, it might have upset my stomach a tiny bit, but it was barely noticeable and not anything that I couldn't deal with. That went away pretty fast, and I don't have any problems now. I've always been fortunate with that I guess, that I never seem to get side effects with medicine.

I still have an "off" day sometimes, when I get really tired. But now, I have a lot more good days than bad. And it seems like even when I do have a bad day, I'm able to recover a lot faster than I used to. Sometimes, by the next day I'm feeling better again.

Connie, I do have dry mouth too. In fact, before I was actually diagnosed, my mouth was really red and it felt sore and irritated all the time. Like I was getting a sore throat from a cold. The rheumatologist put me on Pilocarpine and that has helped a lot. I also use Biotine gel, and drink a lot of water. My mouth doesn't feel sore anymore. My eyes have been bothering me sometimes, so I've started using eye drops.

I am a little nervous because of what I've read about how Plaquenil can affect the eyes in some cases. So I'm going to ask my doctor about that, and to refer me to an ophthalmologist. But I have talked to a couple of people who are taking it for rheumatoid arthritis and they haven't had any problems.

So, yeah...so far so good! I'm hoping and praying that I keep getting better, and maybe I can get my life back! (Well, most of it anyway).

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Gatewaycityca said:

Thanks for all your encouragement, everyone!

So far, I haven't noticed any side effects at all. I think maybe the first few days or so, it might have upset my stomach a tiny bit, but it was barely noticeable and not anything that I couldn't deal with. That went away pretty fast, and I don't have any problems now. I've always been fortunate with that I guess, that I never seem to get side effects with medicine.

I still have an "off" day sometimes, when I get really tired. But now, I have a lot more good days than bad. And it seems like even when I do have a bad day, I'm able to recover a lot faster than I used to. Sometimes, by the next day I'm feeling better again.

Connie, I do have dry mouth too. In fact, before I was actually diagnosed, my mouth was really red and it felt sore and irritated all the time. Like I was getting a sore throat from a cold. The rheumatologist put me on Pilocarpine and that has helped a lot. I also use Biotine gel, and drink a lot of water. My mouth doesn't feel sore anymore. My eyes have been bothering me sometimes, so I've started using eye drops.

I am a little nervous because of what I've read about how Plaquenil can affect the eyes in some cases. So I'm going to ask my doctor about that, and to refer me to an ophthalmologist. But I have talked to a couple of people who are taking it for rheumatoid arthritis and they haven't had any problems.

So, yeah...so far so good! I'm hoping and praying that I keep getting better, and maybe I can get my life back! (Well, most of it anyway).

I've been on Pilocarpine for several weeks now. Not helping too much, but maybe with Plaquenil it will make a difference.

I'm encouraged by your results, and I wish you continued improvement. I'll let you know when I start Plaquenil. Hope and pray we all find some relief.

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The Plaquenil has also had a huge effect on getting rid of fatigue for me.