Took my first dose of PLaquenil yesterday. This is a link to the side effects that can occur. http://www.drugs.com/sfx/plaquenil-side-effects.html
I got the dizziness mainly and the lack of appetite. Otherwise, it takes about 6 -12 months to really kick in and make a difference. But it beats the alternative for me.
I was prescribed Hydroxychloroquine by my Rheumatologist some years ago. Quickly I developed a rash. This started in the palms of both hands and then spread visibly. my legs swelled and the vesicles appeared in my nostrils, scalp, thighs. I was hospitalised. The top layer of my skin lifted and died and had to be cut back daily. It looked like greaseproof paper.I was wrapped in stockingnet bandaging and was washed in coal tar products. I spent 12 days in hospital. Hydroxychloroquine was put on to my medical files in red as an allergy.
Thank you all for your responses!
It's one of the meds I've tried. I didn't get any noticeable results and it made me very nauseous. My Rhuemy stopped it and we now looking at biologics.
I couldn't tolerate Plaquenil either. My doctor prescribed Sulfazine EC. (500mg) I take two in the morning and two at night. Sulfazine has worked wonders for my pain. I started taking it in 2013 and have been on it ever since.
Lacey
My doctor has taken me off of hydrochloroquin since last posted. I was having some tremors, and he thought it might be the âplaquinelâ. I was also on a steroid, and he took me off of that too, telling me it doesnât look like either is working and come back in two months. I wasnât on plaquinel for 6 months either. I have not seen it listed (tremors) for either one, but they have gone away.
Thank you to all who have responded to me. This has been very helpful. I appreciate your help.
Tokio,
I have not taken anything as of yet, but have researched side effects versus benefits. I attended a symposium this morning about autoimmune disease treatments.
They discussed how Lupus and SS are different diseases, but that they run a very parallel course except for the dry eyes and mouth. As far as fatigue and joint issues, they speakers all agreed that Plaquenil was the best first choice for treatment IF the patient can tolerate it. They talked about the upset stomach stops some folks from taking it, but that (as a few here have stated) some have nausea and/or upset stomach for a short period of time after starting it. For most, this usually passes in a couple of weeks.
The doctors said that Plaquenil is very good for those who have problems with inflammation of the membranes around organs. The example they gave was the pleura (around the lungs.) When the pleura is inflamed, it can be painful causing a person to breathe in a shallow manner. This in turn can cause a person to feel short of breath.
They said that patients with this issue seem to have a good response with Plaquenil. Unfortunately, (as others stated) it takes awhile to have results.
It seems that Plaquenil is for helping slow or stop progression, but also to stave off inflammation/pain/fatigue through prevention.
I hope this is helpful. I hope that you find out what is causing your breathing issues and get some relief. Let us know how youâre doing. Good luck!
Thank you for your post, this is great information to discuss with my doctors.
I've been taking it since October, when I was first diagnosed with Sjogren's. I haven't had any problems so far, and it definitely does help. I noticed a HUGE improvement with fatigue and my concentration and short term memory got better. Before, I had absolutely no energy and I was practically bedridden. I could only leave the house for maybe 30 minutes to an hour at the most, and then I would have to come back home and lay down. My short term memory was horrible, I was forgetting everything and I just couldn't get my brain to work. I should also mention that I'm only 37! After starting the hydroxychloroquine. (Plaquenil), it just seemed like everything got a little clearer and I wasn't so completely wiped out all the time. I was actually able to have a life again. I'm still nowhere near "normal", but it did help and I think I would be a lot worse if I wasn't taking it.
I think it also helps to keep the disease under control and keeps it from getting worse and attacking organs. As fast as I was going downhill, I think I would be in big trouble by now if it wasn't for the Plaquenil.
The Sjogren's is starting to get more aggressive on me now, so my rheumatologist just put me on another medicine. But I know that the Plaquenil has also been helping.
Don't delay taking medicine out of fear...Plaquenil is actually a very mild medicine for most people. If your doctors feel that it would be safe for you, then give it a try. You HAVE to get treatment for Sjogren's. It will never go away on its own, and you're just going to get worse if you don't get treatment. There's no cure for it, but medicine definitely helps.
Thank you all for you input and information. I appreciate it. Does anyone know if exercise can make Sjogrens worse or does it help? Thank you.
It helps!!! The standard is always that you have to find what's right for you and at what level but it definitely always helps to hold off pain and fatigue (which is different from regular tired). Personally, I get on the elliptical, do yoga and as much core work as possible. During the summer I swim. I can feel the difference when I don't do it and in general, I feel more stable overall when I am consistent. I can't keep up near the kind of workout schedule I used to, which I guess is my new norm sadly. However whatever I can do without pushing too far is a beautiful thing. Rheumy and cardiologist are both onboard with that.
This is all so depressing and confusing to me. I am not sure what pain is part of Sjogrens and what is something else that maybe should be seen by a doctor. It seems like so many on this site see many different doctors and I only see my rheumy and even then I am not sure that all these issues are from Sjogrens so it makes me wonder if the doctor really knows or if it is something else. Anyway, thanks for listening, I have read two books about this Syndrome and am still confused. LOL....thanks again to all.
I know what nobody wants to hear is what I'm about to say (at least the newbies.) You can simply cause your self more heartache, grief and difficulties by worrying this thing than you can imagine. You have only three things you can do - take your meds as prescribed, exercise, and live a healthy life style (including diet) Those who do that and concentrate on the next day do well (realtivley)
Those who medicalize, worry every symptom do not. SS is an autoimmune disease that effect ducted glands and everything effected by them, which mean pretty much everything is at risk.You can spend a portion of everyday working on you list of the days symptoms,wondering if you can treat the problem of they day and you will get NO WHERE. You can make yourself more miserable.
Concentrate on the things you and do, and outcomes are better. Skip one and its like a three legged milking stool with only two legs..... You have far more to fear from the progression of this disease than ANY and do mean any of the treatments. Should the disease progress into your blood vessels,you won't care that you got an upset tummy from SSZ.
Tokio, I'm going to second what TJ said and add a little. It is easy to get overwhelmed with information. I sure did. When I was first diagnosed I was scared and confused. My normal reaction to things like this is to find out as much as I possibly could about it which was 1) more frightening and 2) confusing due to the amount of conflicting or just plain bad information that is out there. We are all here to offer support and information and I encourage you to use it. We do a great deal of good for each other. BUT, take it slow as far as making decisions or worrying too much. You and your doc will walk through it together. Everyone's journey is different.
Thank you for your support and responses. You are right I am overwhelmed and since I have always done most of the work/chores for everyone in our large family I feel even worse. I keep trying to do all the things I have always done and they all seem so overwhelming. Some days it seems like I can't even vacuum, seriously! :-( I used to spend 8 hours on the weekend cleaning the whole house. Anyway, I will take one day at a time. At this time I only use drops for my eyes and biotene for my dry mouth and no other medications. One day at a time as they say. thanks for responding and listening!
You got it. Like I said, we do it for each otherâŚ.And learning to let others help was a very big part of the learning curve.
My wife's rheumatologist prescribed Hydroxychloroquine three weeks ago. The doctor said it would be approximately three months before any improvement, if any, could be seen. I would be curious to know if other Sjogren's patients have taken this medication.
I have notice slight improvements so far and I've been on it for close to 3 months. I was told by my Rheumatologist that it would be MONTHS before I would have any improvements. I was on a med that took a year of adjustments to finally work, so I was use to having to wait.
I believe that in due time, maybe a year, maybe less. This med will help to give me my life back. It already has started to make small changes. Like the reduced swelling in my knees. And I am less fatigued, although I do still get tired easily, I can go longer before I am exhausted.
Hope this helps.
Hydroxychloroquine is a drug used to treat rheumatoid arthritis. Some people are extremely sensitive to this drug and those people have to discontinue its use.