Goin Back on Plaq | Arthritis Information

 

I just spent an hour in my jet tub with no success in getting rid of the horrible stiffness. I have had a difficult time getting out of bed the last couple of days. Last night I slept on the couch as it is easier to get off of. Now I have a constant ache in my ankles, feet, knees and hips. It feels like a toothache would. I have never had this kind of pain. Always stiff but never really like this. It is beyond distraction at this point. I'm really bummed over this as I felt the fish oil would help. I am going to have to suffer it out this weekend and get a Rx on Monday. Will it take three months to build up again? Has anyone ever gone off, then back on? I didn't have this pain when I went on it before so that is a change. I hate this disease. Best of luck to you; hopefully it will start working in just a few weeks. 

I wonder if a massage would help in some way while you wait for the plaq to start working again.  Also, while I don't have the problem with stiffness, I do know what you mean about the the toothache feeling throughout your body.  When I am feeling like that, I take Lyrica and it really helps way better than vicodin or ultram does for me.  Just a thought... I hope you get some relief and flexibility soon! sorry Lorster... I too know the achey tooth feelings.. it's bad.  Hi Lori, am so sorry that you're flaring.  I don't know about Plaq. but I do know when I went off Enbrel for an infection I never returned to the same level and it failed.  I had to stop Remicade for 2 surgeries and I needed a higher dosage to return to the same level of function but I still wasn't in clinical remission.   With Humira I've been off it for an infection and within 2 weeks it was working as well if not better than prior to stopping and have achieved remission.  You just can't tell if it will begin to work again.  Your RD may want you to start a different dmard or add other meds to the Plaq.  Take care.  LindyI went off plaquenil for a while then back on and it did take a while to kick in, but not 3 months...maybe because I was on mtx at the time as well..i dunno. Good luck..hope it doesn't take too long.Good luck, lorster.  Anecdotally, on the boards, I see a lot of people happy with a plaq/fish oil combo (jas, you are one, right?).  On another board, some of the old-timers had gone through pretty much everything without much success and went back to plaq and added fish oil and are very satisfied.  I hope if you keep the fish oil, the plaq will kick in faster.   I've been on and off Plaq two times and both times I got worse, so going back on is a good idea - it didn't take as long to kick in the 2nd and 3rd go around.  Some people and Dr.'s think Plaq doesn't do much, but it sure does with me!  Good luck and keep taking the fish oil that does help, but like everything else it takes time...hugs  I don't know anything about plaq, Lori, but I sure am sorry to hear you've been feeling so bad.  Hope the plaq works quickly, I wish your fish oil would have been enough .  :(Lori - best of luck.  I was one Plaq for about a year, and finally decided it either wasn't working (felt no change) and/or the right medication for my form of this disease.  Take care ~~ CathyI don't have the experience with plaq either.. tricky RA it doesn't like to be played with....

Hi Lori... sorry to hear that you're having a rough time right now. 

Thanks everyone. I have been up since 4 am due to the toothache legs waking me. I went off plaq because I thought I was cured. I guess the plaq must have been helping me. I called my dr on Friday and she will call it in tomorrow. I'm tired of this. Thanks for responding.How long were you off it before you started to have problems?  And how long have you been off it altogether?  I've cut my dose in half a few times to try and get rid of ringing in my ear, but the pain came back quickly and I had to go back to full dose.  I got the same level of relief almost immediately, maybe because I still had the other dose in my system.  I'll bet you start feeling better pretty quickly.  It's good stuff.  i was on it for a year and a half and stopped it 3 months ago. What a mistake!! It has been raining here everyday for a month so I'm sure that is not helping matters. My acne is coming back also...so that is a huge reason for me to restart it, LOL. Priorities! I hope all is well with all of you and you are all not as miserable as I have been for the past few days. I can honestly say I have pain like I have never had before. I'm not sure If going off the plaq has prompted it or if my disease has advanced a bit. At what point did the pain start, one month, two, three?  I ask because according to my RD, if it takes longer before you start the pain, the more effective it has been.  In my case even dropping one dose caused pain, so that means it's barely keeping it under control.  So, when did the pain start? Lorster, Lev. I, being a nurse, should have known better than what I did. I truly did think I was cured. Now I understand why some go off their psych meds when they get to feeling normal. I just went through hell today, trying to get my RX back as I guess now....the pharmacies are not filling plaq without an eye exam every 6 months...yes...every 6 months. As far as I'm concerned....this is a rip off...and I told them so....just another way for another doctor to get more of my insurance dollars. I have been told by several doctors that plaq is one of the most benign of the DMARDs. I don't understand the need for a test every 6 months. I'm not sure if this rule is nation wide or just in my community. I'm looking into it and am going to find out....who made that rule and why. Are their studies out there that indicate that more frequent eye monitoring is necessary? Anyway....yeah....I screwed up. I admit it. It was stupid because I'm in worse shape right now than I was before I started the plaq. And Lev...thanks for caring so much about me.    [QUOTE=lorster]Lev. I, being a nurse, should have known better than what I did. I truly did think I was cured. Now I understand why some go off their psych meds when they get to feeling normal. I just went through hell today, trying to get my RX back as I guess now....the pharmacies are not filling plaq without an eye exam every 6 months...yes...every 6 months. As far as I'm concerned....this is a rip off...and I told them so....just another way for another doctor to get more of my insurance dollars. I have been told by several doctors that plaq is one of the most benign of the DMARDs. I don't understand the need for a test every 6 months. I'm not sure if this rule is nation wide or just in my community. I'm looking into it and am going to find out....who made that rule and why. Are their studies out there that indicate that more frequent eye monitoring is necessary? Anyway....yeah....I screwed up. I admit it. It was stupid because I'm in worse shape right now than I was before I started the plaq. And Lev...thanks for caring so much about me.   "The American Academy of Ophthalmology (AAO) recommends that patients treated with hydroxychloroquine can be divided into two groups: low-risk patients, who receive < 6.5 mg/kg/day of hydroxychloroquine and have used the drug for less than five years, and higher-risk patients, who have used the drug for longer periods, who are taking larger dosages or who have other risk factors such as high body fat level, concomitant kidney or liver disease, concomitant retinal disease or are of an older age (>60 years). All individuals starting these drugs should have a complete baseline ophthalmologic examination within the first year of treatment. This should include examination of the retina through a dilated pupil and testing of central visual field sensitivity by either a self-testing grid chart (Amsler grid) or an automated threshold central visual field testing (Humphrey 10-2 testing). If the patient is in the low-risk category and these examination results are normal, the AAO recommendation is that no further special ophthalmologic testing is needed for the next five years. For patients in the higher- risk category, an annual eye examination is recommended. Should any hint of toxicity appear, more elaborate tests can be performed, such as multifocal electroretinography (mfERG). However, its sensitivity for early screening remains to be determined."
P.S. consider it a learning experience.  You have acquired some valuable knowledge of your own condition as well as insight into the plight of others on long-term meds.

 As we used to say in the lab: "if we knew what we were doing, it wouldn't be research" Jas, when I saw the Opthomologist last July 30th, he told me that he didn't really need to see me for 2 years. Now, all of a sudden, my internist has told me that I should have had a test in December and now the pharmacy won't fill it...it was out of my internists hands...it was a pharmacy thing. Since when do pharmacies run the show? I mean, are they not rich enough? My eye doctor can't get me in till the end of august. I almost said screw it but I'm in tough shape right now and need it. This has been a huge learning experience and I will never do it again. I have been told that the plaq may not work on me as good as it did before. I'm hoping this is not the case for me. Can't help you... here in Illinois the only thing that lights up the pharmacist seems to be sudafed. JasmineRain2008-06-09 20:24:04LOL...yep, and all that meth is still getting made. Imagine that. Its a good point though.
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