Hi, I just joined the forum and I wanted to say that this seems to be a great group. I had tried another group previously and they weren't nearly as supportive of each other as you guys seem to be. So, glad to be here!
I also have a question I hoped someone could help with. I started the generic form of Plaquenil 200 mg. twice a day, two weeks ago and I'm really having trouble with it. Yesterday I called my rheumatologist and he suggested taking a break through the holidays ( I also have a nasty cold), and starting again in a week or so with one pill a day, and then adding the second pill in another week. It kills my stomach and seems to give me awful diarrhea, especially in the morning. I also take meloxicam for pain and inflammation. I skipped both last night and today my stomach feels much better. I really want this to work. I have pain, fatigue, dryness, swollen lymph nodes, fevers, muscle twitches and pins and needles in my legs and hands that drive me nuts, and so on... Both the rheumy and the eye doctor say sjogren's. Does anyone have any advice? Does it get better? I'm going to try the doctor's suggestion and deal with it for awhile, but it's hard to take.
I want to feel better. I homeschool my three boys and we opened a small shop in town last year, I have so much I should be doing and I can't seem to keep up. I know a lot of this I just have to learn to live with, but plaquenil seems to help so many people. It would really be a blow not to be able to take it.
Thank you so much for listening to me vent!
I'm sorry to hear you are having trouble with this. I did too. So bad that I could be standing there having a conversation with someone and "go" without warning. So horrible. I was on it for 3 weeks and had to stop. It also gave me terrible muscle pain.
Oh, my. I can tell how much you want to stick with it!!
I am very sensitive to meds. I was on plaquenil for three months. I spent every single day doubled over in pain, with diarrhea. TRaveling in this condition is pure torture. I was desperate to wait as long as I could stand it, hoping for pain and dryness relief. I tried morning dose, evening dose, with food, without food and even with a little Immodium. Sigh - nothing worked. The doc decided three months was enough toture and I agreed. I really thought my body would get used to it but it just never happened.
Good luck and God bless.
KellyG
Thanks for your responses. I had the same thing happen Jozee, just standing there and then oops... Uge, so gross! Well I guess I'll just try what the doctor said and hope for the best. Have you found anything else that works? I did a short trial of steroids which really helped but I'd rather not start those if it can be avoided.
Hi Katie :)
Welcome to Sjogren's world.
When I started on Plaquenil my rheumy told me to start with half a 200mg pill once every second day and to do that for a week. Then to take 200mg every second day for another week. Then to start filling in the days inbetween in the same way. In other words taper up to the whole dose slowly. He always said to take it with food.
In fact he kept me on 200mg for 4 months before he added the other 200mg and that was tapered too until I was eventuially taking 400mg daily regularly.
My system adjusted to it gradually. It takes ages to work anyhow.
Take care - Scottie :)
I took it for a week - one day at 400mg, reduced it to 200mg and was really ill with bad diarrhoea. Stopped it for two weeks then started up again on half a tablet for 2 days, then increased to 200mg each day - been on that for a week and on Monday I shall increase it by half a tablet to see how I go and I hope within the next two or three weeks, to be up to full strength of 400mg.
So far so good, a bit of wind but no pain or anything and it seems after that initial episode and then giving my body a rest, I seem to be OK, god knows when the benefits will kick in - I would imagine a few months but I want to stick with it.
Take it slowly as long as your body takes to get used to it I guess.
Hi Katie,
I think Scotties is right in tbat tapering up little bit by little bit, would make a big difference. I am still only on 100 mg every second day and I have been able to tolerate that and no more.
It takes time to get to those higher doses for ome of us. Good luck
Thank you all so much. That makes me feel much more hopeful. I'll take a short break, then start again really slowly. :)
It always helped when I took it on an empty stomach with no food at all. At night, cut the dose in half and dont take it same time with any other medications. Food and medications dont seem to mix well with me.
gursie
Hi KatieB!
Welcome! :D
I think the advice to taper up slowly on Plaquenil is very sound advice. What your doctor is suggesting sounds good; you may even want to ask if you could stay on the one pill a little longer if all goes well with that.
I've been on it 8 months. The first two weeks I had some stomach upset and diarrhea. It wasn't pleasant, but not horrible, either. I weaned onto the drug slowly and I always eat something with it. Everyone is different. Hopefully, you can adjust to taking it over time and you'll see some good benefits.
I'm glad you found us. This is a very supportive and encouraging group, and very friendly people. You can ask anything at all; there are no silly questions. ;) We look forward to hearing more from you, Feel free to ask, comment and post away!
Take care,
Melinda
I am not on it BUT I recommend with everyone else to start with smaller doses and work your way up. Your tummy has to get used to it.
I've had meds in the past that were too strong and dr had to give me either a smaller dose or taper me with it. Back then my dr forgot I wasn't a 150-160 pound gal. I am 110
pounder on good days. LOL ;) I am weird as I tend to lose wt, not put it on.
Check your generic prescription for the pharmaceutical company that produced the "plaquenil."
A while back, there was evidence that the Ranbaxy formulation had irritating additives. Ask your pharmacist who made your pills, or look on the label.
Ask to change sources if you have Ranbaxy pills.
My pharmacy changed for me and I think there was an improvement, but I also changed a few other variables, so I can't be sure.
It is very difficult to isolate the variables that wreak havoc on our bodies.
Peace,
beth
I take Omyprazole (sp?) because my Dr said that Plaquenil is hard on the stomach. And I take it with food!! Have you tried Mylanta, etc for your upset stomach?
Do you take the brand name (Plaquenil) or the generic (Hydroxychloroquine)? My rheumy says that the generic causes more GI side effects than the brand name.
I just started Plaquenil this fall and my first impression is that you are probably taking the plaquenil along with your other morning medications. Is this the case??
I don't take my plaquenil with any other medications. I am only taking it once a day and I take it right after lunch. I will not take it with any other medications as I am afraid that it would increase the GI upset.
The meloxicam most likely is a med that can cause the GI upset also---add the 2 together or within an hour or two of each other can make it worse.
If you want to try doing it separate try doing your morning meds at 8AM and your prednisone at 11AM with some food. You could take the other pill at about 8 PM with a snack and then take your evening pills a couple of hours later. Something to this effect. Since you are taking the 200 mgm it would not be as important to have 10 or 12 hours apart on the Plaquenil.
THe main thing you are trying to do is divide the dose so you don't have GI upset. Many people take the 400 mgm at one time. This is just a suggestion so you will understand what I am trying to get across. Just my humble opinion.
Hope you can find some way to get some relief. Irish ;D
Ive been on 200mg for well over a week now and I am fine, I am just wondering how much I should increase by, I was thinking about going up by half a tablet for a couple of weeks and see how it goes.
One thing is annoying, I had 2 beers through the day yesterday and felt so ill it wasnt true, not sure if its the alcohol dehydrating me or it is not working with the Plaquenil - probably a bit of both. Oh well, a wine and lemonade for me today!
Merry Christmas everyone, hope anyone who is on Plaquenil isnt suffering too much over the festive period.
:-*
Thank you all very much for the advice. I am taking the generic, so that's something to check up on and think about. We are paying everything out of pocket right now though, so the price does count.
Merry Christmas everyone!
Well I increased yesterday by half a tablet - so I will try that out for a week before going up to 2 tablets a day - 400mg. So far a bit of gas but it is early days.
Trouble is when you split the tablet it tastes foul but my chemist said it only comes in 200mg tablets here, I need to check that out.
Hi Katie - I had a horrible reaction to Sulfasalazine and told my Rheumy ...no way Jose! So now we are trying Methotrexate. I have many of the same symptoms you do....and the Methotrexate and Neurontin are keeping things calm for the moment. Hope this helps!
I agree with Irish. Try not to take any of your medications at the same time. Too many meds seem to fight each other. I wait at least an hour before mixing anything with the Plaquenil..even if it's just a pain reliever for a headache. I've been on it for just about 2 months now. I am one who has adverse side effects to everything I'm given, so I was really hesitant to start this. Thankfully, taking 200 mg of the generic form twice a day really hasn't caused me many problems. The first month there was some excessive belching, but that is subsiding.
The only other thing is that it does seem to cause more random flareups of GERD, and my insurance company has stopped paying for Prevacid that I've depended on for years, so...I need to go see my GP to find out what to do for that. I notice it happens more at the bedtime dose, so I make sure I don't lie down for at least 30 minutes after taking it. I can't swallow pills, so I have to crush this pill twice a day and put it in applesauce or yogurt. Yuck...!! It is a very BITTER pill to swallow...literally. Wish I could take it just once a day. The rheumy said I could, but I am too chicken to try 400 mg at once.
I don't drink alcohol all that often...maybe a glass of something twice a month. I was hesitant to try any while on Plaquenil after reading that some people have trouble with that and this medication is hard on the liver too. I had a White Russian a few weeks ago...and a glass and a half of wine yesterday and did OK. When drinking any alcohol, I make sure I have a glass a water sitting alongside of it to stay hydrated.
I have to say though..while I don't really notice unbearable side effects with Plaquenil, I also have not noticed any benefits yet either. The doc said it would take a couple of months. Maybe I just have to wait it out a little longer.
I wish you the best with your prescription and hope you find a way to tolerate it.
Take care
Julie
Quote from: Julie on December 26, 2011, 06:09:31 PM
[ . . ] The first month there was some excessive belching [on Plaquenil}, but that is subsiding.
The only other thing is that it does seem to cause more random flareups of GERD, and my insurance company has stopped paying for Prevacid that I've depended on for years, so...I need to go see my GP to find out what to do for that. I notice it happens more at the bedtime dose, so I make sure I don't lie down for at least 30 minutes after taking it. [ . . . ]
Julie
An alternative to Prevacid is to take 3 50 mg tablets of Zinc, AM and PM. I'ver researched it; there's one Japanese study that found it effective against GERD, and no negatives except that one needs to have a small amount of copper in the diet.
And, of course, you would want your doctor's agreement.
Best,
Soycoffee