I have APS and RA..How long before plaquenil starts working?

I was just wondering how long before it starts to help. I have been on it for 6 months and nothing has changed. I still am in a lot of joint pain. Do you have any other remedies that might work?

I was DX in 99 after 2 m/c.

13 Replies

oldestnewest
  • I doubt that your pain will change much. I think you will find that it is true of most of us. I wish you luck in controlling your pain. If you find a remedy please let us all know.

  • Thank you, that's what I figured. I can't take much because of the APS and stroke I had in 2000. I was just hoping there was someone out there that might have a trick.

  • Hi -# How much plaquenil are you on- started out at 200 mls a then increased IT TO 400 HUNDRED A DAY -- it helps out me pretty well, but i think we all are different. in many ways some of the differences are symtoms and as well the things that we react to. i have seen it said many a time on this forum.?-----------jet

  • Hi again #3-- i also have AVN and just a few months ago had a core decompression done on right hip - i also have osteo-arthritis in feet shoulders and knees- hip still not rite- gotta wait till nov before final decision on maybe a total hip- but because of my 4 blood problems i was at 80% risk factor- thats why they did the c d first. just saw dc yesterday- they tweaked me all over the bed and now im sore as h---..i also take 3600 mls of fish oil a day along with 15000 mls of niacin- these do help me also but arnt for everyone. was just reading back on some of your notes-- where do you live??? i'm here in New Hampshire in the states----jet

  • I'm in Wisconsin. They talked about doing my hip, but are waiting as long as possible. My last surgery was a nightmare that took over 6 months to heal. I got a shot in my hip, it sort of helped. Thank you for writing back. My RA is in my hands, feet and knees. I also have heart and kidney problems.

  • The hip wasnot my surgery that didn't heal.

  • No, Silly Rabbit! Tricks are for kids. (That's a joke if your American). The truth is plaquenel just doesn't work for me either. I gave it a six month trial, at progressively higher dosage, with no change in joint or muscle pain at all. For others on this site it does reduce pain. I think you've given it enough time whereby if it's going to do anything for you it would have started by now. Did you keep a journal? Can you go back to the time when you were placed on it and see how you scored pain over the six months? A journal usually comes in pretty handy that way. I read so many cases of Plaquenel working on this site that I wondered if I had given it fair shot. But upon reflection in my journal, I just couldn't find even one day that it changed pain. But now I don't have to wonder. I know I gave it a fair chance and I'm just not one of the people it works on. Since many medicines "just don't work" on me, it is consistent with my body's history. Exercise works best for me for pain. I do 45 min on a treatmill at 3.5 mph every day.(I worked up to 45 min slowly) Also, I have disc problems in my back so every time I go to the kitchen sink, I do one set of ten back bends over the sink (all day long every time I use the kitchen sink) and every time use the bathroom, I do another set of exercises for up upper neck. This keeps my body's pain points limber and stretched all day. If I sit down all day my muscles get atrophied, stiff, painful and difficult to move. When I get up I stretch to the ceiling to try to keep moving. You don't have to do a lot, just carve out a few minutes throughout your day. It takes less than 3 minutes to bend backward over the sink ten times and then forward, hanging onto the the sink, 10 times. This too, I have checked with my journal and on days I can't exercise, say no time because I have an MD appointment, I have scored pain higher than on the days I cannot exercise in a targeted manner. Just being up and about shopping doesn't count. That usually MAKES me tired. But if it's specifically targeted for the pain YOU have - exercise works. I learned in it physical therapy after my stroke where they developed the exercises I can do throughout the day. Aqua therapy is the very best if you can get it. It depends on your pain. Go to a professional for specific exercises because you can cause further pain if you are not doing them correctly or not doing the right exercises for the pain you have. Pain is a perpetual battle for most of us. I hope you can get yours under control quickly. It really hurts to start the exercise, but once you are a bit of the way through you can already feel pain relinquish. So argue with yourself, but whatever it takes, get yourself up in the am and start exercising while the coffee's brewing! You'll be done before it's finished. Then just do a little all day long. USE YOUR JOURNAL. Score your pain on a scale of 1-10 and see if exercises helps you. Take note of your active or new symptoms in your journal. Take photos of any rashes or red marks on your body and time and date them. A picture is worth 1,000 words. That way when you see your MD you will all be on the same page and it will be documented. You won't have to wonder how your pain was 2 months ago because you will have it in your journal. It could prove very important to your medical history years from now. It's a great place for a good healthy rant! You can keep track of your mood because it jumps about for me and may for you as well. A journal really helps to vindicate you, keep you sane, and keep accurate track of your case because we all get brain fog, or memory problems. A journal keeps it on the up and up. It's also one honest place you have.

    Good luck. "Tricks" is an American breakfast cereal and it's character is a rabbit that says, "Silly Rabbit, Tricks are for kids.", every time an adult tries to eat it.

    Canary

  • Thank you so much for your ideas, I do exercise as much as I can. But I haven't done a pain journal. Very good idea. I used to keeps notes, but a journal is a better idea. Thank you again! I'm from Wi...I laughed at the Twix reference! Lo.

    Amy

  • I meant trix! Lol

  • Smiles glaore! You're right! It was Trix and it was Silly Wabbit, Twix aw fo kids". I actually had the same speech impediment having a French mother who used different throat muscles for the letter "r". I had 15 years of speech therapy for that letter R. Tongue twisters in front of a mirror. Tanx for bwinging back fond memowies!

    Canary

  • Hi a few years ago I started taking Glucosamine capsules and within weeks I was skipping around like a two year old, however I had to stop taking them as they played havoc with my blood sugars (I am diabetic) and had to weigh up the pros and cons. Also you shouldnt take them if you have an allergy to shell fish,

  • Plaquenil, caused severe allergy in me of the worst kind... but my young daughter is significantly better on it! Mary F x

  • I don't know if you have access to a compounding pharmacist but I have an expensive, not covered by insurance, topical naprosyn sodium cream which I rub into my sore hip/thigh joint 4-5 times a day. It doesn't get rid of all of it, but cuts it by @ 30% on bad days. On good days the cream eliminates the pain. ( yeah!). I also use a similarly priced other cream on my back made of a ketamine. Gabapentane, clotidine mix which shuts up, ( or mutes) my insane sciatic nerve on those days when he, ( she? I'll show gender prejudice here in thinking female nerves would not be so hysterically inaccurate,) earnestly and loudly insists that our ankle is on fire( or is being chewed by an invisible troll, or has wasted away, or whatever novel pain presentation Old Sciatic thinks will get our attention.).

    Those are my expensive tricks. I hate spending the mony, but they do help.

    Gina

You may also like...