Anyone taking only Plaquinil as DMARD? | Arthritis Information

I need some help and counsel from ya'll: I would like to find out how well taking only Plaquinil as your DMARD has worked for those of you taking it for milder RA? I have been reading about it and am wondering if it would help with this chronic dull achy pain which is getting worse and seems to be spreading. I am still not having much swelling at all -- it's been 7 months since I had visible swelling in hands, ankles and feet. However, the dull achiness is getting much more intense in hands, wrists, elbows, knees, ankles and feet and now starting in shoulders and hips. What has been your experience with Plaquinil? Currently, I am only taking Celebrex 200 2xday with Tylenol for back-up and it is no longer working like it was. I gave up on the RD who just wants to "wait and see" and says "you don't have enough swelling." So, am going back to my GP who originally diagnosed the RA and is willing to treat me. Should I ask him for Plaquinil? Does it help with pain? I have been taking Plaquinil since April. I have found it has helped my knees, shoulders and elbows a bit, but my hands and feet are still a problem, those were my worst areas, and my knees, but knees are much better. Not 100%, but I'm not complaining. Plaq takes 2-6 months to actually work, so I still have some time to give it a chance. It's not really a pain med though, so you won't have instant relief from it.At one point I was on Plaquenil, I couldn't tell it did anything. I took for months before he finally changed me to Enbrel which did nothing either. I don't want to sound discouraging, for some people it works. Hope you feel better soon :)Plaquinil was the first DMARD my rheumy prescribed for me, and it put me into a 10 year remission. Then it just seemed to quit working for some reason. Now that I'm on Humira, I thought I'd try quiting plaquinil and see what happened. A few weeks ago, I started to get little mini-flares in random joints, a different one every day. I resumed taking plaquinil, and the mini-flares went away. It's obviously not as effective as it once was for me, but it apparently does work at some level along with the Humira and MTX to keep me symptom free. I'll probably just keep taking it. if you are only experiencing minor symptoms plaquenil would be a good starting place or you also could be a good candidate for mincycline or sulfasalazineI've been using plaquenil since last fall. It has all but eliminated the pain I was having in my feet. I still have some pain in my hips. If it doesn't give you good relief within 6 months, it likely never will. However, it is a very slow acting drug ... it has to build up in your system ... so, give it a chance. I know people for whom it kicked in quite suddenly after a year, and they were symptom free. If it doesn't work well after a year, your rhemy will probably put you on something else. I only take plaq. I have been on it since 2006. Three months ago, I thought I was cured of RA so I quit taking it altogether. Within two months, I was back to square one so I started back up 3 days ago and so far, so good. It is also excellent for acne. It works well for people who have mild to moderate RA. I think people who have this disease in a more severe form should be on more than this. Plaq is a very benign med and they really don't know how it works. As long as it does is all I care about. I will stay on this drug as I no longer want to feel like I have for the past month or so. Years ago I took only plaquenil with really good results. Mine was much milder in earlier years and it was perfect for me where as stronger meds like I'm on now wouldn't have been nessesary.

It's sure worth a shot before trying other things in my opinion. Save the stronger meds for years down the road if nessesary. Exhast the weaker meds if possible before resorting to things like MTX and biologics. Often the weaker one will buy you a few years. I think I went 9 years before starting MTX.

I was on plaq years ago along with naproxen and I believe it put me into a remission. I think I took it for a few years. I had it pretty bad as a child and now I have a mild case. I quit taking it once I felt better and stayed that way for a few years. I would love to go back on it but my current RD says studies show it's no better than a placebo so he won't put me on it. I beg to differ! Thanks everyone for replying -- I am so frustrated with the rheumy that I have decided to give up on him entirely. I get the feeling he only treats sever cases, and I am tired of being so miserable! My GP offered to treat me, so think I will take him up on it and ask if we can start plaquinil or one of those other mild meds ya'll mentioned. He listens to me and makes me feel like I can ask questions, unlike the rheumy. [QUOTE=cah1418] my current RD says studies show it's no better than a placebo so he won't put me on it. I beg to differ! [/QUOTE]

I'd beg to differ too and so would a lot of other doctors as well as patience. I'd say that's a pretty stupid statement.

I have been on plaquenil for 2 years with great results. As other mentioned, it does take time to kick in. I did feel much better after about 4 months. I have also added minocycline to it and am doing very well. I hope it lasts as long as it did for other people. I am not looking forward to needing to take mtx or the stronger dmards.II was on gold shots and a bunch of other stuff years ago before Dmards were available. I've been on Plaquenil for about 7 years now and it's working okay but I still have pain and take Vicodin and/or Tylenol when needed. I was on MTX and that didn't help at all. How I know the Plaquenil is working is that I was hospitalized a few years ago with autoimmune hepatitis and they took me off Plaquenil. Within a month I was in terrible shape with pain and stiffness and swelling. I guess I am not considered to have a severe case of RA because my joint damage is slight.

Ann

I have been on plaquenil for 10 months and after about 4 months felt it was helping a bit but then all my pain got worse and was started on pred and then MTX. Have continued on plaq as rheumy feels it may be helping however I have my doubts but it is worth a try.Started Plaquenil in Feb. and so far, so good. It really just kicked in about 2-3 weeks ago. I take it with Piroxicam, which is like Naproxen.

I've been on Plaquenil since Sept. Prior to that I was on methotrexate but had to come off of it because of side effects. Plaq has helped to give me back mobility in my fingers but I'm still having problems with my elbows and knees.

Lcarter, I find it so interesting how doctors still don't have a clear, uniform plan for RA treatment. I know that everyone is different, but as you learned, some RD's won't treat mild RA at all, while my RD gave me Plaquenil and built up to a high dose of MTX right from the beginning and I don't have swelling, joint damage or even a clear case of RA. I think the high ANCA freaked him out but he's also trying to stop this from becoming full-blown RA, since I do have blood work that confirms an autoimmune disease. It amazes me how different the doctors' ideas are on how we should be treated. I would think your RD would want to nip this in the bud before it gets any worse. That is the general consensus on how autoimmune diseases should be treated at this time. Hit it hard and heavy. I think you're very wise to at least talk to your PCP about this, but I'd also get a second opinion from another RD who is more expert at dealing with RA issues. I think the problem with your current RD is that he is stuck in the medical past. He doesn't seem to be up on the current treatment therapies.

Jesse882008-06-15 04:52:18 [QUOTE=Lovie] [QUOTE=cah1418] my current RD says studies show it's no better than a placebo so he won't put me on it. I beg to differ! [/QUOTE]

[/QUOTE]

Amen Lovie!!Hi Lcarter:

When I started Plaquenil(200mg/day) I was also taking 200mg of Celebrex at the same time. A month later increased Celebrex to 400mg/day. I noticed as the months went on my pain was less and less. He just started me on 4mg of Medrol , it's a pretty low dose but wonder if that's helped me also. I have to tell you, I am literally like 90% better , but 4 months ago, even a month ago I could hardly walk, my feet, hands, everything hurt SO badly. I think for me Plaquenil really works. I would like to stop the celebrex so I'm not taking that my whole life but for now, I'm doing a whole lot better and can actually wear NORMAL shoes! Even sandles for the summer, WOO HOO!

I hope you find a new RA doctor you'll like, keep looking and don't give up. The RA dr. will have more understanding of how to treat RA and more experience than your GP dr. That other one doesnt sound like he's helping you at all. You shouldn't be in this much pain. You should leave your RA dr. after each visit feeling full of hope and that he really cares, (like your GP dr.) That's great you have a GP dr. that you like so much and he/she is willing to help you. I've heard Plaquenil is one of the more safer DMARDS and it's a good one to start with. Just remember it is slow in the beginning, but give it a few months and I bet you'll be feeling a whole lot better.

lcarter:

The other thing you said,..... "I gave up on the RD who just wants to "wait and see" and says "you don't have enough swelling."

From what I've read and from what my own RA doctor said, they used to treat RA aggresively as it got worse (old way of thinking). Now days, they feel treating it aggresivley in the beginning rather than in the end is a lot better for the patient.

My RA dr told me, It's a whole lot harder once the horse is out of the barn to round it up again and bring it back to the stall. (once your RA's out of control, it's harder to get it back under control)

I had an RA doctor I didn't feel was helping me in the beginning and was very frustrated as you are now. It took some footwork but I finally found an RA doctor I really like now. Keep looking, don't give up!

Kelly

Well I am taking pain pills and prednisone as well as the generic form of Plaquinil. I was after ten days able to cut back on my pain pills from three a day to two a day. Well i cut back a few days ago. I was still in pain until yesterday. So not an immediate fix. If you are hurting tell your doctor.

I agree you should try something. Why do they want you to get sicker? How many times have you seen the RD?

I tryed Arava and was allergic. I tryed MTX and was allergic. So now i am taking the generic form of Plaquinil. What ever you decide keep us posted and feel free to ask us any questions.

LCarter,

When I was first diagnosed, I never noticed any swelling at all. My RD started me on Plaquenil and it really helped a lot. I took 200 mg twice a day. I also took Relafen, an anti-inflammatory. The Plaquenil worked wonders while I was on that dosage. Once my RA progressed, I found I needed to add other DMARDs. But for my initial mild RA, it was a good drug and worked great by itself.

There's no reason to live in pain. I'd let my GP treat the RA rather than follow the "wait and see" approach of your RD. Is there another RD in your area? I agree with klynn141, if a diagnosis of RA has been determined, you should start on a DMARD right away. The longer you wait for treatment, the more damage can be done.

kweenb2008-06-16 11:05:20I saw that RD 3 times and every time he would say that he didn't see any swelling so "lets wait and see". This went on for about 9 months; meanwhile, the achiness just got worse plus spread to more sets of joints. I think that RD only treats sever cases of RA and I wasn't sever enough for him. Today I went to my GP who I think is tops when it comes to Drs. [He was a pharmacist, then taught pharmacy in a medical school, and finally became a dr himself -- he really knows medicines like no other dr I have ever been to], He ordered more blood tests (including full thyroid panel) before starting me on the Paquenil. It surprised me when he mentioned Plaquenil before I did! He also said that I have Sjorgen's syndrome (so did the opthamalogist a few days), and that the Plaquenil could help both. The RA, Sjorgen's and Celiac are all autoimmune diseases -- for sure, if you have one, it is easier to have more! It's wonderful to have a dr take my "hurting" for real instead of brushing me off. Just want ya'll to know you are great counsel! Thanks a bunch! In time hopefully the Plaquenil will do the trick--I'm willing to wait for it to work now that someone is finally helping me. There are varying degrees of RA I have come to read and learn about. Some people are swellers, some are not. Some people follow the signs and symtoms to a "T" and some do not. We are all unique in our battle. But at the end of the day we all have the same disease.

Plaquinel does not reduce pain. What it does do is to supress the immune system to help fight off the RA which thrives well with active immune systems. So if the immune system is supressed, the RA is less fierce so to speak. All it does is calm the beast. it's like throwing a bone to a dog that barks all the time. It takes so long to work cause it takes that long to supress the immune system. People with Auto immunes diorders have pretty active immune systems. Thats why their diseases are so busy.

It can be a little hard on the stomach so always take it with a full meal. The eye problem that it "might" cause is rare. I am down to yearly exams now.

LCarter,

Just an FYI. When I started the Plaquenil, I had really bad waves of nausea for about a week and a half. If you experience this too, hang in there. It will pass.

RANana,

I had to edit my post because I just noticed you said you were down to once a year eye exams. My opthomologist told me that Plaquenil had a cumulative effect - that it builds up in your system. Therefore, for the first five years, I can have yearly exams. After that, I have to have them every six months.

kweenb2008-06-17 05:46:47Interesting thread! I just started Plaquenil about a month ago. So far I haven't really noticed any difference, but I know it takes time. I'm also taking naproxen right now, which I hope to come off of once the plaquenil kicks in. It really tears up my stomach some days, but I'm still hoping and praying it helps soon here. The only place I have any problems ever is my left shoulder/neck area. I'm actually wondering if the plaquenil is what's making my neck so sore?... because it's more my muscles that are all tensed up and I know sometimes plaquenil can cause sore muscles. Has anyone else experienced this?
habr0406,

I've never experienced any muscle problems with Plaquenil. Does your shoulder hurt worse when you move it or does it hurt the same whether you move it or not? I ask because I had a pinched nerve in my neck and it caused referred pain in my shoulder.