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Medical Forum / Diseases and Disorders / Lupus / November 2008Plaquenil side effects
Just wondering about Plaquenil side effects. My mother has been offered this drug but doesn't want to take it because of possible effect on her eyes. She also has macular degeneration so she is not prepared to take the plaquenil in case it makes her worse. She really needs to take something though because the low dose pred. she is taking isn't helping much, and her joint pains are getting worse I think. Does the Plaquenil ALWAYS affect your eyes? Is it dose related? Is it detectable early so that she could stop the medication if she was affected? Could anyone who has stories - good or bad - please let me know. Thank you Winny > Just wondering about Plaquenil side effects. > > My mother has been offered this drug but doesn't want to take it because of > possible effect on her eyes. She also has macular degeneration macular degeneration - cannot see straight ahead but can see what's happening on side or top > so she is not > prepared to take the plaquenil in case it makes her worse. She really needs > to take something though because the low dose pred. she is taking isn't > helping much, and her joint pains are getting worse I think. > > Does the Plaquenil ALWAYS affect your eyes? No. > Is it dose related? yes. > Is it detectable early so that she could stop the medication if she was > affected? I don't know. > Could anyone who has stories - good or bad - please let me know. I posted a link, where others are asking and/or others are sharing their stores. Hope you look through it. Hugs J My doc told me that as long as you have your eyes checked every 6 months, any eye problems that could arise will be caught in time. Also, it's extremely rare to have any eye problems from Plaquenil, but I don't know about the macular degeneration issue & Plaquenil. Candi > Just wondering about Plaquenil side effects. > [quoted text clipped - 13 lines] > > Winny There is no macular degeneration related to plaquenil or chloroquin. There is central vision loss due to retinal deposits of the drug which damage the macular cells in a bulls eye formation and can seem as if it is MD; but isn't.... as well it is definitely dose related toxicity so just be sure you are on the correct dosage for your body weight per kg. There is a formula available to your doctors and probably from the pharmacies. I know of the visual problems from very recent personal experience and I have had to quit the drug because of permanent central vision loss and it is not a good situation to be in! My joints are terribly painful again, like pre-chloroquin and worse! and on top of that I can't see as well and am banned from night/rain/sun glare and freeway driving because of it! I didn't know just how well the chloroquin worked until I had to quit it cold turkey! ASAP I am going back onto the chloroquin at the proper dosage and I can't wait for the relief I know it will bring! even the pred doesn't do what it does for joints!! Unless of course I up the dosage and I hate the side effects so much that it isn't worth it; I can handle the pain better than the pysch. side effects of pred at the higher dosages lol!! anyhow hope this helps? hugs, Shelagh http://clik.to/lupus > My doc told me that as long as you have your eyes checked every 6 months, > any eye problems that could arise will be caught in time. Also, it's [quoted text clipped - 18 lines] >> >> Winny >There is no macular degeneration related to plaquenil or chloroquin. >There is central vision loss due to retinal deposits of the drug which [quoted text clipped - 3 lines] >There is a formula available to your doctors and probably from the >pharmacies. Someone recently posted that the formula has been updated, giving a lower dose per body weight.  SignatureAndy Taylor [Chair, N E Lupus Group] See http://www.northeastlupus.org.uk for more! Andy, It was Shelagh after the damage to her eyes at the dosage she was on. Sherry Thanks very much everyone. This may be may be good news for her - just have to battle through the initial increase in joint pains I guess. I really hope she gives it a go ... but she really seem right against it. Now I have lots more questions popping into my head .... sorry, and thank you in advance. Can you take the pred. as well as the Plaquenil? She is taking low dose now (5mg). Why not just increase pred. for "breaking in" period of Plaquenil? Most people in this group seem VERY against pred. Is it just because the Plaquenil works better and with less side-effects? There seems to be LOTS of side effects with Plaquenil - are these just the 'we need to warn you' kind, or do most people get them? Please advise. [Personally, I have been on Pred (varying doses) for 25 years (diagnosed aged 15). My usual maintenance dose is 10mg, but hasn't been much help these last 3 months. Recently increased to 25. I don't seem to suffer many side effects, although I have been depressed for a few weeks/months - who knows? - but I don't think this is necessarily pred.] Sorry, I'm rambling - Has anyone else been taking pred for long time - and what problems are you having? Thanks again Winny x > Andy, It was Shelagh after the damage to her eyes at the dosage she was > on. > > Sherry Long term Prednisone is not ideal. Prednisone has some nasty side effects... usually worse side effects, the higher the dose.... Plaquenil and Prednisone are completely different medications so it's not that plaquenil is better than prednisone.. it's just that prednisone almost always has side effects. Plaquenil can be taken with Prednisone. As for Plaquenil side effects, there are potential side effects to all medications..... we just have to see how we react to it. I haven't had any side effects from Plaquenil... Keep in mind it can take months for Plaquenil to work. Keep up with the eye exams from an ophthalmologist NOT an optometrist and you'll be good to go.. I refuse Prednisone unless necessary (extreme prolonged flare). I will not use it for pain control. I am in pain management to deal with the pain. Just a few long term side effects from Prednisone are diabetes, thinning skin, cataracts, glaucoma, osteoporosis, mood changes, avascular necrosis, and lots, lots more. Good luck Nicole What Nicole said pretty much covers it for me too! Also pred can just mess up sugar levels without going into diabetes and for me that is a big problem at dosages higher than my maintenance dose of 5mg daily..... hyperglycemia and hypoglycemia can be problematic for different people.... also the thinning skin and osteoporosis are known even at the lower levels over long term treatment; I have also had the avascular necrosis in my spine and it is literally a 'big pain'! I don't have an option at this point; I must remain on low dose pred (with the plaq asap) because of the damage done to my system's organs etc over the long period I have had lupus... since I was approx. 11-13 years old which is 40 years now! I enjoy a good quality of life while taking my meds (like Nicole I too am on a pain management program) and if I don't take them I lose it ... so for me it is all good as long as I am compliant to the doc's treatment orders.... What you should try to remember is that every patient with lupus responds not only differently to the illness but also differently to the treatments and will also be treated differently by the specialist to the other lupies he/she may see. Your illness will be as unique as are you! It is a 'disease of 1000 faces' literally and probably more!! and you should not compare your illness to others... the symptoms may be similar and the meds used to treat it the same names but you can bet that the illness will run a different course and at a different level of impact in you than in someone else who has similar symptoms.... Good luck! hugs, Shelagh http://clik.to/lupus > Long term Prednisone is not ideal. Prednisone has some nasty side > effects... usually worse side effects, the higher the dose.... Plaquenil and [quoted text clipped - 19 lines] > Good luck > Nicole > What Nicole said pretty much covers it for me too! > Also pred can just mess up sugar levels without going into diabetes and for [quoted text clipped - 30 lines] > > effects... usually worse side effects, the higher the dose.... Plaquenil > > and Didn't know that going off plaquenil suddenly could cause heart failure. Have been living with heart failure for about 2 years and that is about the time that they had me stop it for about 6 months. Learning more about cause and affect with this thread than a ever heard from my rheumatologist in 10 years. Really appreciate all of your knowledge..................ruth > > Prednisone are completely different medications so it's not that plaquenil > > is better than prednisone.. it's just that prednisone almost always has [quoted text clipped - 19 lines] > > Good luck > > Nicole Ruth, We just had another chocolate festival here. I never hear in time to give you a chance to make plans to attend. <g> Good to see you posting. You have been pretty quiet! Hugs, Sherry We, being the docs and I, are not positive that it was the lack of chloroquin that did that to me completely; but going cold turkey did put me into a major flare of joints and skin and my heart got in on the picture in a big way, with the congestive heart failure involving a lot of fluid in my ankles and up my legs and in my hands to some degree, also very high bp and normally the meds had it under control, extreme shortness of breath at night, just couldn't lie down and breathe and so sleeping was out of the question for several nights and many bouts of tachy. ongoing were very bothersome till I got myself into the doctor's office.... and to top it off there were the telltale rales in my lungs so off to ER I was rushed and then into the cardio. office etc for echocardiogram and other testings and lengthy appointments re history, labs etc..... like getting a dx lol~! and then the dx came and it definitely involved the chloroquin and going off it suddenly.... it was helping to stabilize my lupus and worked wonders while on it; but going off it blew away any remission I was having or semi remission re symptoms and everything blew up on me.... so there you go... I won't point a finger at the drug 100% but yes, it had a part in CHF for me. I am now on the many new cardio meds for all this and thankfully feeling a lot better but still have to have my vitals checked regularly and all. Not something I would recommend to anyone is to cold turkey your antimalarial... I was warned by my rheumy that he was not happy with my decision but my vision was so important to me and I did not expect chf to be in the flare up picture either... it had happened once prior in my life at age 40 approx... and it was worse that time as far as the tachy. went... it wouldn't quit and I ended up on digoxin among the other meds for chf.... this time I have avoided the dig. for now; but either that or a pacemaker may be in my future if things don't improve.... I have also been labelled with a 'stiff heart' which is not good and something new too..... so maybe it all would have happened without the dropping of the drug? but doubtful according to the cardio. So fwiw... my 2 cents again! hugs, Shelagh http://clik.to/lupus >> What Nicole said pretty much covers it for me too! >> Also pred can just mess up sugar levels without going into diabetes and for [quoted text clipped - 61 lines] >> > Good luck >> > Nicole > Thanks very much everyone. > [quoted text clipped - 4 lines] > > Can you take the pred. as well as the Plaquenil? She is taking low dose now >Hi Winny, One of those who take plaquenil and prednisone all of the time . 10 mg of prednisone and 200 mg of plaquenil . The plaquenil takes care of the pain most of the time but lately [last 9 months] can't get along without at least 10 mg of pred. Have been on Plaquenil for about 22 years. Prednisone at least as long as because I have pericarditis and prednisone gives a lot of relief to the severe pain. After so many years of coping with lupus and still wanting to live an active life I compromise with with the side effects and take the darn stuff and have a life. ruth (5mg). Why not just increase pred. for "breaking in" period of Plaquenil? > Most people in this group seem VERY against pred. Is it just because the > Plaquenil works better and with less side-effects? [quoted text clipped - 19 lines] > > > > Sherry > Sorry, I'm rambling - Has anyone else been taking pred for long time - and > what problems are you having? I'm finally speaking up here, as a poster named Marie Davis is my sweetie who has lupus. My experience with seeing folks like my father and half-sister taking the stuff, and a cat I had, SignatureCurtis R. Anderson, Co-creator of "Gleepy the Hen", still "In Heaven there is no beer / That's why we drink it here ..." http://www.gleepy.net/ ICQ: 50137888 mailto:gleepy@gleepy.net (and others) Yahoo!: gleepythehen > I'm finally speaking up here, as a poster named Marie Davis is my > sweetie who has lupus. Hello Curtis and welcome :) J Welcome to the group. Sherry > Sorry, I'm rambling - Has anyone else been taking pred for long time - and > what problems are you having? (second attempt, not a good way to introduce oneself to a newsgroup!) I'm finally speaking up here, as a poster named Marie Davis is my sweetie who has lupus. My experience with seeing folks like my father and half-sister taking the stuff, as well as a cat I had, is that it makes skin which has been repeatedly tanned become paper thin. The prednisone wears away at the dermis and epidermis and it becomes virtually non-existent. Any slight scrape can start bleeding profusely. The fat Felix kitty started having his skin thin out, too, shortly before he was put to sleep. SignatureCurtis R. Anderson, Co-creator of "Gleepy the Hen", still "In Heaven there is no beer / That's why we drink it here ..." http://www.gleepy.net/ ICQ: 50137888 mailto:gleepy@gleepy.net (and others) Yahoo!: gleepythehen > > Sorry, I'm rambling - Has anyone else been taking pred for long time - and > > what problems are you having? [quoted text clipped - 7 lines] > dermis and epidermis and it becomes virtually non-existent. Any slight > scrape can start bleeding profusely. Is that does-related and/or over time? Here's what they say about Plaquenil (ignore # 10 since we're talking about starting at a lower dose than that) J http://www.lupus.org/education/topics/plaquenil.html From the medical perspective 1. HCQ is effective treatment for hypergammaglobulinemia purpura and for cutaneous lupus and arthritis. 2. HCQ also is considered the treatment of choice for severe or refractory cutaneous lupus, especially with the addition of fluocinonide cream. 3. HCQ, either alone or in conjunction with other medications, is used throughout the course of systemic lupus, from mild to severe disease. 4. HCQ is used to relieve flares and is proven to prevent flares. (11) 5. HCQ also is felt to be useful in reducing the amount of steroids needed. 6. HCQ has been found to provide some relief from serositis (inflammation of the delicate membrane that lines closed cavities of the body), fatigue, and cognitive dysfunction. 7. There is evidence that HCQ helps prevent low bone mineral density in steroid users(4); helps protect against hypercholesterolemia, (5-6) especially in steroid users; and lowers the risk of thrombosis in young women with SLE. (12). 8. HCQ also may have a role in preventing cardiovascular disease and hypertension. (7) 9. HCQ has not been shown to be teratogenic and its use in pregnancy is considered wise if the patient is already taking it before the pregnancy. (13) 10. HCQ at a lower dosage (5mg/kg/day) is advised in pediatric lupus. 11. HCQ also is used in combination therapy in lupus panniculitis and in antiphospholipid syndrome, in which it acts as a weak anti-coagulant. >>>Sorry, I'm rambling - Has anyone else been taking pred for long time - and >>>what problems are you having? [quoted text clipped - 9 lines] > > Is that does-related and/or over time? On that, I'm not so sure. I think it was a little of both in the folks and the cat. SignatureCurtis R. Anderson, Co-creator of "Gleepy the Hen", still "In Heaven there is no beer / That's why we drink it here ..." http://www.gleepy.net/ ICQ: 50137888 mailto:gleepy@gleepy.net (and others) Yahoo!: gleepythehen That was me Andy, I received the info from a retinal specialist who deals in the research of the meds as well as the treatments of his patients directly with the rheumys... a wonderful doctor I was really impressed with and he really made it clear that it was NOT the drug but just the related dosages that made it a problem for some patients.... I tried to get that message across in my posts so as not to alarm anyone taking it! J also gave the thread link to those messages for anyone who wanted to read about anyone who posted to the thread.... I don't have that ratio handy right now but could get it for anyone who wants it if necessary. hugs, Shelagh http://clik.to/lupus >>There is no macular degeneration related to plaquenil or chloroquin. >>There is central vision loss due to retinal deposits of the drug which [quoted text clipped - 6 lines] > Someone recently posted that the formula has been updated, giving a > lower dose per body weight. Are these the tests? Regular dilated fundus examination, visual field testing using Amsler grid test and automated central 10-2 perimetry (to a red test object) is advised to detect reversible premaculopathy. J > >There is a formula available to your doctors and probably from the > >pharmacies. > > Someone recently posted that the formula has been updated, giving a > lower dose per body weight. This is from Shelagh's archived post. "the current thinking is that chloroquine should not exceed 3.5mg/kg/day on a lean body weight basis".... I don't understand what follows Shelagh. Is there 2 medications? Note to others: listen to Shelagh, the following is dated (old). J http://www.arthritis.ca/toolbox/ask%20an%20expert/browse2/default.asp?s=1&page=9 April 29, 2002 My wife has gone blind because chloroquine was used to treat her arthritis. Are there other people in the same situation? Is there some kind of lobby or support group? Chloroquine (Aralen) and hydroxychloroquine (Plaquenil) were first use to treat malaria. They are both effective treatments for rheumatoid arthritis and systemic lupus erythematosus. Very rarely do they damage the retina of the eye causing permanent loss of vision. There is no specific treatment for this problem. Very few people experience this side effect. There is no lobby or support group but the Canadian National Institute for the Blind (CNIB) should be helpful. For anyone else on chloroquine or hydroxychloroquine, please take these precautions: The damage to the eyes is related to the dose of these drugs and does not usually occur during the first 2 years of treatment. The daily dose of chloroquine should not exceed 3.5 mg per kilogram of your ideal or lean body weight and hydroxychloroquine should not exceed 6.5 mg per kilogram of your ideal or lean body weight. Therefore, if you weigh 50 kilograms, you should not take more than (3.5 x 50 = 175) 175 mg of chloroquine per day or (6.5 x 50=325) 325 mg of hydroxychloroquine per day. Keeping below these doses will reduce the chances of getting eye damage but will not eliminate the risk completely. If you lose weight, then reduce the dose accordingly. I f your disease improves, then reduce the dose slowly to a maintenance dose, for example, hydroxychloroquine 200 mg taken only 5 days per week. Eyes should be checked by an ophthalmologist every 12 to 18 months. These drugs are removed from the body very slowly by the liver and kidneys. Therefore, if you have impaired functioning of your kidneys or liver, the dose should be reduced and your eye examinations done more frequently. The ophthalmologist should give you a card with an Amsler grid on it and show you how to use it at home between visits. Using the grid could alert you to early changes that would not progress if the drug was stopped at that point. It has been suspected but not proven that sunlight may contribute to the problem. Good sunglasses would be worth wearing in the sunlight. These drugs are very useful and safe otherwise. The damage to the retina is a rare side effect. The above precautions should be followed. > My doc told me that as long as you have your eyes checked every 6 months, > any eye problems that could arise will be caught in time. Also, it's > extremely rare to have any eye problems from Plaquenil, but I don't know > about the macular degeneration issue & Plaquenil. I would say based on what is written below (even though the webpage says a higher dose) that she should follow Shelagh's tip about "should not exceed 3.5mg/kg/day on a lean body weight basis". So 3.5mg/kg/day is the starting point. If they dose by weight, subtract some for body fat, then that's the starting dose, more frequent monitoring, supplement with something else, while the plaquenil kicks in. If your disease improves, then reduce the dose slowly to a maintenance dose. If she loses weight, reduce the dose. If she gains weight, do not increase the dose. Use the Amsler grid at more frequent intervals. The physician prescribing HCQ conduct more frequent visual screenings. Because the elderly appear to be more susceptible to retinal damage, this age group should receive frequent monitoring. And, since retinopathy has been known to occur in patients with nephritis, it is recommended that those with impaired kidney or liver function be screened more frequently as well. How's that Shelagh? Hugs J http://www.rheumatology.org/publications/position/hydroxy.asp?aud=prs Third, certain patients who have macular degeneration or retinal dystrophy or who have had previous hydroxychloroquine use may be more susceptible to toxicity or at least present more complicated monitoring problems. Fourth, patients who have severe compromise of renal or hepatic systems might theoretically have more toxicity as the drug is cleared by these two systems although there is little evidence for this occurring in practice. Finally, obesity may cause an overestimation of the safe dose of hydroxychloroquine because the drug does not accumulate in fat. >> My doc told me that as long as you have your eyes checked every 6 months, >> any eye problems that could arise will be caught in time. Also, it's [quoted text clipped - 23 lines] > Hugs > J You said it all and very well in the 3 postings too J! Yes, the drug's adverse side effects, which are RARE, are definitely DOSE related. No question about that in all the medical circles. and being that plaquenil (or hydroxychloroquin) and chloroquin are started at a 50mg difference daily with the old dosage scale.... explains why the two different scales (ie: 3.5 and 6.5 mg/kg of lean body weight) for the two antimalarial meds with the new scales. Also they are not giving it daily anymore for the most part; apparently at those dosages on a 5 day scale and so giving a 2 day break giving the body time to wash it's plasma levels and therefore alleviating the build up in the areas of the body where it is not wanted (ie: the retina for one)..... is the way the new dosage scales work... NOTE: this is all new to me too people.... and I am listening though and very carefully because losing the portion of central vision in both eyes that I have lost is very harsh to live with as it does affect every aspect of your life regarding vision.... so don't brush this off as fluff or nothing to consider.... I did that initially cause I successfully took the med for almost 7 years without visual problems and so when they couldn't be ignored anymore - I did have all the visual testing done including the red-test visual field and the MVB visual field and even attempted to have the fluoroscein angiogram which was recommended by the retinal specialist; but was allergic to the dye used (due to it being a vegetable based dye - legumes specifically! again beware lupies!)... you can start at home on your own though as the Amsler grid works and will show any problems immediately... Just print it out from here: http://www.stlukeseye.com/eyeq/Amsler.asp and keep it handy for whenever you think your vision is faulty.... testing yourself is acceptable to opthamalogists and they will test you accordingly once you have an appointment..... I don't intend to scare anyone off of these meds... and in fact I plan to go back onto either one of them once I am able according to my retinal specialist ... they are well proven and are very well known for being long term successful lupus treatments and for me the chloroquin worked beautifully for my joints and skin... I didn't have my congestive heart failure until I was forced off the drug cold turkey and within months was in ER with CHF, very scary! I am looking forward to going back onto the drug for the joint relief alone!! .... so don't take these posts as warnings against the use... just use them judiciously against your own doctor's dosages and don't be afraid to question your doctor about your treatments and/or dosages and/or vision issues. Just FWIW, and I really HTH someone out there! hugs, Shelagh http://clik.to/lupus >Just wondering about Plaquenil side effects. > [quoted text clipped - 12 lines] > >Winny Dear Winny, My eyes weakened on Plaquenil. However I am at an age when that would happen anyway so the symptom slipped by me for awhile. The one thing I have not much shared informaiton on is for me the plaquenil played havoc with my indegestion system. I felt like I had acid reflux, foods that never bothered me before gave me heart burn, it got hard to swallow and I had a dry cough all the time. It painful and embarrasing.I had to modify my diet drastically. I have never had indigestion problems in my life and when I quit taking it and my stomach problems have all but disappeared. I am not sure if anyone else has noticed these symptoms but it took me awhile to put the symptoms together with plaquenil. Mostly because there weren't warnings of these symptoms by the cautions on the meds or my doctor. Best of luck to you and your mother. Tell her to make a list of questions for her doc. It helps! Hugs T. |
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