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  • Antimilarials - Quinacrine and Plaquenil?

    Hi there, I recently started on the Antimilarial Quinacrine 100mg daily, about 2 months ago and I am feeling some good effects from the medication BUT I am having big issues with sleep and irritability. The two likely go hand in hand. I have tried everything, even sleep aids, but am constantly waking throughout the night and have a difficult time falling asleep. I feel riled up during the day and find it hard to try and relax, possibly due to lack of sleep.

    My question is in regards to the other Antimilarial Plaquenil, is anybody currently taking this medication or have they taken this medication, found it helpful and most importantly not overly stimulating? I am happy that the Quinacrine medication seems to be helping my symptoms, but the sleeplessness and irritability side effect is becoming too much.

    I would like to perhaps ask about Plaquenil at my next Dr's appointment but was looking for a little user experience with this Antimilarial and how it compares to Quinacrine and most importantly if it is as stimulating as Quinacrine...I am hoping not.

    Also, how much of a risk is Plaquenil really? You read all sorts of things on online contradicting eachother. I have read about permanent eye damage which is why Quinacrine seemed more the choice. I read that the eye toxicity is rare at lower doses of Plaquenil, anyone been on this medication and had eye problems that did not resolve?

    Thanks and god bless.
    Last edited by andrew78; 08-09-2009, 04:43 AM.

  • #2
    Hi Andrew and welcome to the site. It is a great site with loads of info. I take plaquenil and don't have any ill effects from it. I had an eye test before I started and as long as you have regular eye checks it is fine and safe to take. I was interested to read that you were started on quinacrine first before plaquenil, I wonder why that was? I am just curious! :hehe: Sorry that the quinacrine is having these unpleasant side effects, I suppose you don't want to add another med in to help you to sleep? Amitriptyline at low doses is quite good for that it helps to relax the muscles and helps with pain and sleep. I know others on the site take both meds and they will give their experiences. Hope you manage to get sorted.

    Deb

    Comment


    • #3
      The eye side effect from Plaquenil is extremely rare (most rheumatologists never see a single case of it), and when it does happen it tends to occur in those with severely reduced kidney functioning and in people who have taken it over 5-10 years. Plaquenil is an extremely safe medication, with few side effects (gastrointestinal complaints the first 2-3 weeks are the most common). It has numerous benefits on lupus and in general (tends to lower cholesterol for instance).

      It is interesting that you were first prescribed mepacrine/quinacrine instead of Plaquenil. Mepacrine will do more to battle the fatigue as it is stimulating, Plaquenil is not as helpful in that respect as it is not stimulating. Perhaps you could ask about starting Plaquenil and cutting your mepacrine dose in half as you seem to find it too stimulating?

      Comment


      • #4
        Thanks a lot for the responses. I was put on Mepacrine first because I was told it should have a faster onset for helping with the skin rash (3-4 weeks instead of 2-3 months with the others).

        I do find it too stimulating for me. It is good to know that it is more stimulating then the others, perhaps then Plaquelin will be the better of the two for me.

        I didn't have any other side effects from Mepacrine, no stomach upset, headaches etc.

        My symptoms are limited to the skin rash, sensitvity to sun, connective tissue issues (sore joints) and some fatigue.

        I was really nervous about the eyes, but the more user responses I read the more comfortable I am becoming. Perhaps a switch may be in my best interest. I will be sure to mention this to my Dr. at my next appointment and see what they think. I also read that if you keep the dose at
        5-6mg/kg then there is almost certainly no risk of eye toxicity.

        How often do you have your eyes checked while on Plaquelin?

        Thanks
        Last edited by andrew78; 08-09-2009, 09:41 PM.

        Comment


        • #5
          Welcome to the forum Andrew

          Quinacrine ( UK Mepacrine) is well known for its particularly energising properties since it has a stronger stimulating action on the adrenal cortex than Plaquenil. We all have different susceptibilities to medicines whether good or bad effects and it sounds as if a reduction of the Quinacrine is in order for you, certainly to see if that is responsible for the sleeplessness. The anti malarials can also cause irritability.

          When I started taking it at 100mgs a day, I was as high as a kite for several days and I worried I was psychotic. I also knew that I would crash soon, on only three or four hours sleep a night.
          Luckily, I was reassured that if it was psychosis I would not realise it and that galvanising effect did wear off. There have been a few occasions in the past 13 years, when I haven't taken it for some weeks and I definitely notice the difference, not only in energy but in mood.

          While 100mgs a day seems to be the usual starting dose in the USA it is usually less in the UK, maybe only 100 mgs 3 times a week. Here it seems to come in 100 mg pills but in the USA I got it in 50mg gel capsules when it is easier to adjust the daily dose to get the maximum benefit with the mimimum of undesirable side effects.

          Generally speaking, the risk of Plaquenil affecting the eyes is minimal to non existent if proper eye tests are conducted to detect any damage occuring before the sight is actually affected. We do read accounts here from people who report that their eyes have been affected and who can possibly gainsay that sad individual experience. But there are factors in such cases that we can't know about or can't evaluate.

          Maybe they should never have been prescribed it in the first place, maybe the eye tests, if they did have any, were not properly conducted and maybe they were overdosed. Maybe even the eye problems are coincidental and not due to Plaquenil at all, but any physician would want to stop a medication if there was any reason for anybody blaming the doctor for prescribing that medicine. No doctor wants a liability suit especially in the USA.
          The risk of eye damage is so small that doctors do not even recommend eye tests in the UK unless there is an existing possible contraindication. There could of course be a cost v benefit calculation to this as is often the case on our British National Health Service. I would certainly get my eyes tested even if I had to pay for it, just for my peace of mind and especially in my case because I have been on high doses of either Plaquenil or chloroquine, its stronger cousin for many years, along with the Quinacrine latterly. Chloroquine otherwise known as Aralen is not in general use these days.

          All the same, the general consensus of expert opinion in brief is that there are no proven cases of retinopathy from Plaquenil on the recommended doses, except for individuals who have exceeded the maximum of 6.5mgs per kilo or 3mgs per pound of ideal body weight over more than 5 years and even those are "extremely infrequent". The American Institute of Opthalmology advises dividing patients into high and low risk groups. The high risk groups would consist of patients taking Plaquenil or chloroquine for over 5 years, those older than 60 years, those with renal or liver disease, and those with a high body fat ratio. These people should be examined quarterly or half yearly but the low risk group do not need to be re-evaluated after the baseline exam for five years.

          (Info from DuBois p1164, Dr Wallace's article)

          If reducing the Quinacrine doesn't help enough with other symptoms, then Plaquenil could be added to it unless there is a definite contraindication in your case. The two work together synergistically, each enhancing the effects of the other, so a lesser dose of Plaquenil might be more effective in combination with the Quinacrine than Plaquenil alone and would reduce the eye toxicity risk because the dose is cumulative over the years.

          A fine tuned cocktail of meds is usual these days

          Good luck!
          Clare
          Last edited by Clare.T; 08-09-2009, 11:32 PM.

          Comment


          • #6
            Hello again
            I see our posts have crossed. I hope my post below helps with the either/ or situation. I had been taking Plaquinel or Aralen for many years before I was able to access the Quinacrine but it was not enough to stop the spread of skin lupus ( SCLE on my face) or the accompanying arthralgias and fatigue. Adding the Quinacrine brought a dramatic improvement to my skin at least 90% and completely stopped the joint aches and pains. My joints are in a better state now than they were 20 years ago in my early 40's despite being much heavier these days. With the addition of low dose Imuran(azathioprine) I went into medicated remission. I also began being ultra careful about sun avoidance and protection and stopped smoking for a while.

            All the best ! Please let us know how you get on because that's how we build up a body of invaluable experience and can best help others.

            Cheers!
            Clare

            Comment


            • #7
              Wow, thanks so much Claire for the valuable info and experience. You sound like you know more then my Dr. about these medications. :lol:

              So perhaps 100mg of Quinacrine 3x per week would be better? Did you drop your dose to this level over the years and if so, did you notice a reduction in the restlesness/nervousness sleep issues? 3x per week would be about 50mg per day, do you know if you can go even lower and still have some benefits? ie. 25-30mg per day or approx. 2x per week?

              I didn't even know you could take low doses of both medications...very interesting approach and it would help with toxicity in both cases.

              I would definitely want a pre-eye exam prior to starting Plaquelin, if I start it that is. I would also want an eye exam every 2-3 months just for my own peace of mind..

              The one part I am a little confused upon is that apprarently Plaquelin can cause blurry vision or halo around lights as a side effect BUT this is not anything to be concerned about or any reason to stop the medication because it is appreantly transient and does not affect vision permanently? If there were an account of the beginnings of eye toxicity, it would be apparent in an eye exam only prior to actual symptoms...did I understand this correctly?

              When you mentioned about some posters here reporting eye problems, were they severe or permanent? Have there been a number of reports here or are you talking maye 1 or 2? Clearly you made a good point in there being other variables involved.

              Also, did you have effects from Quinacrine over the long term? My Dr. mentioned something about skin yellowing or nails yellowing but that it was relativey infrequent and also goes away when you stop the medication.

              I have some issues with my eyes, ocular rosacea I am told, so I get a gritty sensation and blurry vision when it flares up. I wonder if this will influence my ability to try Plaquelin. Something to ask the Dr. for sure when I see them next.

              I forgot to mention that I also suffer from swelling of the hands and feet which the Quinacrine among some other things was seeming to help, but I can't continue on being so jittery and anxious, you described it very well and I am glad to also see that there is someone else who has experienced this side effect from Quinacrine and that I am not imagining it if that makes any sense:hehe:

              Thanks again for the info!

              Comment


              • #8
                Hi Andrew,

                Plaquenil can cause permanent eye damage.

                http://www.thelupussite.com/forum/sh...ad.php?t=57505

                Permanent eye damage is very rare though. If you are having regular eye exams any changes should be caught early and might be reversible. In my case I started having symptoms a few weeks prior to my next appointment. Since I have been on Plaquenil for so long my doctors decided to have me discontinue the drug and hope my Lupus could be controlled by other methods. I have been fortunate to have some reversal of my symptoms.

                Due to your ocular rosacea I would check with your Opthamologist to see if Plaquenil is even an options for you.

                Take care,
                Lazylegs

                Comment


                • #9
                  Originally posted by lazylegs View Post
                  Hi Andrew,

                  Plaquenil can cause permanent eye damage.


                  Permanent eye damage is very rare though. If you are having regular eye exams any changes should be caught early and might be reversible. In my case I started having symptoms a few weeks prior to my next appointment. Since I have been on Plaquenil for so long my doctors decided to have me discontinue the drug and hope my Lupus could be controlled by other methods. I have been fortunate to have some reversal of my symptoms.

                  Due to your ocular rosacea I would check with your Opthamologist to see if Plaquenil is even an options for you.

                  Take care,
                  Lazylegs
                  Thanks for the info. I will be sure to mention the Ocular Rosacea. Oddly enough, Ocular Rosacea is a disorder of inflammation of the eyes. so I wonder if the Plaquelin could potentially help it as it alleviates inflammation throughout the body and modulates the immune system. Something definitely worth asking. I also took a course of Accutane a few years back and my eyes have been a bit dry since.

                  Comment


                  • #10
                    Hi there Andrew and welcome to the site!

                    I think you have been given a wealth of information about Plaquenil and eye damage so cant really add much too it! It is important to remember that nobody on this site can tell you what would occur with you if you started on this medication that is something that will be unique to you. Members are giving advice based around their personnel experience and knowledge gained from reasearching.

                    I would also suggest that you seek the help and advice regarding this med from your Rhuematologist rather than your GP.

                    Do you even get your eyes checked for sight and visual fields! Perhaps if not then you go and get that organised.

                    Accutane is something I used to alleviate dry eye symptoms...other ointments/mediactions!

                    If your eyes are dry this is another thing that an Opthamologist can look into!

                    Did you start using Quinnacrine for treamment with Lupus rashes?

                    Take care,

                    Comment


                    • #11
                      Hello Andrew

                      Here is the link to info on this site
                      http://www.uklupus.co.uk/antim.html


                      My responses to your queries are below the quotes

                      So perhaps 100mg of Quinacrine 3x per week would be better? Did you drop your dose to this level over the years and if so, did you notice a reduction in the restlesness/nervousness sleep issues? 3x per week would be about 50mg per day, do you know if you can go even lower and still have some benefits? ie. 25-30mg per day or approx. 2x per week?
                      You will have to find out how low you can go while continuing to get the benefits without this horrid overstimulation. We differ widely in our reactions and needs. How best to reduce the dose depends on the dose in each pill. If it is 50mgs like I had in the USA, you could halve the dose by taking only one a day and thus maintain a regular daily intake. Here in the UK only 100mgs tablets are available to me. Splitting pills isn't usually recommended except when there is a division line marked on the pill. You would absolutely not want to split the quinacrine pills still less the capsules because it is extremely bitter and contact with the mouth and food pipe has to be minimal and sloshed down with lots of water.:hehe: I take my three bitter antimalarials first with water after a few practice swallows, then my other pills and finish off with the relatively tasty chewable calcium.

                      I have not dropped my dose at all over 10+ years except for the few occasions when I have stopped or reduced it either because I was having surgery or because I have run short or even right out because of difficulties getting the prescription renewed in time, in the UK. Some people drop their medicines to a maintenance dose after a while and as a trial to see if they can manage at lower doses or even come off them altogether.

                      The hyper feeling I experienced at first, wore off after a few days as my doctor predicted it probably would, otherwise I would of course have reduced the dose. It wasn't only the lack of sleep that was worrying because I need a lot of sleep, but this feeling of my mind racing away full of 'brilliant' notions. I am sure I notice a deterioration even at lower doses and I have no concerns at all about taking it for the rest of my life.

                      I didn't even know you could take low doses of both medications...very interesting approach and it would help with toxicity in both cases.
                      Quinacrine was taken off the market maybe about 20 years ago and replaced by Plaquenil for antimalarial prophylaxis which is why the Quinacrine has to be compounded. The combination was well known for ages but got forgotten about because of the difficulty getting hold of the Quinacrine.

                      It's a good principle to take the least dose possible for effectiveness of course, but it doesn't have to be at low doses. I take 100mgs a day Quinacrine, at first along with 400 mgs Plaquenil which was then replaced by 500 mgs chloroquine.

                      I would definitely want a pre-eye exam prior to starting Plaquelin, if I start it that is. I would also want an eye exam every 2-3 months just for my own peace of mind.
                      Yes that is a good policy although every 2/3 months would usually be considered unnecessarily often. Every six months is the usual recommendation in the USA although every year was the consensus view for those are not in a high risk group in USA and Canada.

                      The one part I am a little confused upon is that apprarently Plaquelin can cause blurry vision or halo around lights as a side effect BUT this is not anything to be concerned about or any reason to stop the medication because it is appreantly transient and does not affect vision permanently? If there were an account of the beginnings of eye toxicity, it would be apparent in an eye exam only prior to actual symptoms...did I understand this correctly?
                      The best answer is to report anything new and worrying to your doctor so he can decide if it is serious or not. Otherwise you are in effect diagnosing yourself. The question of eye toxicity is in fact much more complicated than realised and some aspects are slightly controversial for example what are the best methods of testing. Apparently the photophobia and haloes round lights is due to the corneal deposits not the retina being affected. It is not permanent, might be asymptomatic meaning the patient isn't aware of any problems See p1162 of Dubois. Dr Wallace comments that they are not usually a reason for discontinuing therapy entirely.

                      As for retinal damage, Dr Wallace comments that that "retinopathy is a frequently misunderstood problem that needlessly deters patients from initiating anti malarial therapy ". In addition to the stats I quoted below, he also reports the results of one study which found that between 1957 and 2003 19 cases of confirmed retinal toxicity had been reported in patients taking hydroxychloroquine.
                      " All had abnormal renal function, had taken the drug for more than 6 years, or had been dosed at actual body weight instead of ideal body weight."

                      Another study in 1992 of all reported and published cases between 1960 and 1990 found 20 cases which fulfilled the validated criteria. In 15 of them dosage had exceeded the maximum recommended dose. The other 5 had taken Plaquenil for over 10 years.

                      In the summary to the Chapter, Dubois p1164, Dr Wallace says that "irreversible retinal changes have never been reported in patient with lupus who was taking HCQ in recommended doses for up to 6 years and undergoing eye tests every six months ". I am not sure if irreversible retinal changes means any signs of retinal change asymptomatic clinically or not.

                      The comments and my reports of them can be checked out here:

                      Dubois' lupus erythematosus - Google Books

                      If this link doesn't work for anybody, google (Dubois plaquenil retinopathy) which should at least take you to the book. Then use the 'Search this book' function

                      When you mentioned about some posters here reporting eye problems, were they severe or permanent? Have there been a number of reports here or are you talking maye 1 or 2? Clearly you made a good point in there being other variables involved.
                      Reports I have read are not really a useful guideline when you have the medical reports to hand especially when the 'variables' are taken into account. Maybe I have read about 6 in over 10 years of participation in forums including a few years as a moderator on this busy forum when I read almost every single post. I must have read tens of thousands of posts, tho of course they were not all about antimalarials except that they have to be one of the most frequent topics on every forum.

                      As with any issue, people who have strong feelings and bad experiences tend to reply whereas those who are perfectly happy don't take the trouble. Nor is the forum a representative cross section of the lupus population. Few of those who are leading normal, problem free lives with their lupus well controlled or in remission ever bother to participate.


                      Also, did you have effects from Quinacrine over the long term? My Dr. mentioned something about skin yellowing or nails yellowing but that it was relativey infrequent and also goes away when you stop the medication.
                      I have had no long term unacceptable side effects from any of the antimalarials and that's over a total of maybe 25 years. The possible discoloration problems also seem very variable and highly individual. I have no noticeable yellowing at all or any unacceptable darkening or lightening of skin either. I have been told that my nails are a bit purply but I never noticed it, and I have a medically very interesting dark patch on the roof of my mouth. My hair also bleached at the temples but this looked like deliberate highlights. Possibly my eyebrows and lashes are bleached too but I am very fair skinned anyway and it could have been part of natural aging and general greying.

                      I have some issues with my eyes, ocular rosacea I am told, so I get a gritty sensation and blurry vision when it flares up. I wonder if this will influence my ability to try Plaquelin. Something to ask the Dr. for sure when I see them next.
                      In your place I would want a second opinion about the ocular rosacea if you haven't already had one. It seems to have some features that might be found also when the eyes are affected by skin lupus although I suppose that if other lupus skin problems have improved with the Quinacrine, the eye problems might be expected to have also eased.

                      Dry eyes and mouth, known as sicca syndrome, are a common feature of lupus and diagnostic of a similar sort of disease called Sjogren's. The malar rash typical of lupus is often misdiagnosed as rosacea. The eyes can be affected by discoid lesions.

                      I forgot to mention that I also suffer from swelling of the hands and feet which the Quinacrine among some other things was seeming to help, but I can't continue on being so jittery and anxious, you described it very well and I am glad to also see that there is someone else who has experienced this side effect from Quinacrine and that I am not imagining it if that makes any sense:hehe:
                      Have you had urine tested to make sure there is no protein present?

                      Plaquenil can also have a stimulating effect although it's not as well known or pronounced as Quinacrine's. It's a good idea to take these meds in the morning. Occasionally I have taken mine mid afternoon and I then sleep very poorly so now if I forget them in the morning, I wait until the next morning.

                      You might do just fine on the reduced Quinacrine but if you need the Plaquenil I hope you feel less anxious about it.

                      All the best
                      Clare

                      Comment


                      • #12
                        Originally posted by greenhaggis View Post
                        Hi there Andrew and welcome to the site!

                        I think you have been given a wealth of information about Plaquenil and eye damage so cant really add much too it! It is important to remember that nobody on this site can tell you what would occur with you if you started on this medication that is something that will be unique to you. Members are giving advice based around their personnel experience and knowledge gained from reasearching.

                        I would also suggest that you seek the help and advice regarding this med from your Rhuematologist rather than your GP.

                        Do you even get your eyes checked for sight and visual fields! Perhaps if not then you go and get that organised.

                        Accutane is something I used to alleviate dry eye symptoms...other ointments/mediactions!

                        If your eyes are dry this is another thing that an Opthamologist can look into!

                        Did you start using Quinnacrine for treamment with Lupus rashes?

                        Take care,
                        Hi there, thanks for the info. When I see my Dr. next I am going to ask their opinion of Plaquelin and the side effect I am experiencing with Quinacrine. If they think I should make a switch then I will be sure to express my concern with the eyes and also arrange an appointment with an opthemalogist ...eye Doctor.

                        I was put on Quinacrine for the facial rash as well as connective tissue issues (joint soreness), sun light sensitivity, swelling of the hands and feet and fatigue.

                        Comment


                        • #13
                          Originally posted by Clare.T View Post
                          Hello Andrew

                          Here is the link to info on this site



                          My responses to your queries are below the quotes



                          You will have to find out how low you can go while continuing to get the benefits without this horrid overstimulation. We differ widely in our reactions and needs. How best to reduce the dose depends on the dose in each pill. If it is 50mgs like I had in the USA, you could halve the dose by taking only one a day and thus maintain a regular daily intake. Here in the UK only 100mgs tablets are available to me. Splitting pills isn't usually recommended except when there is a division line marked on the pill. You would absolutely not want to split the quinacrine pills still less the capsules because it is extremely bitter and contact with the mouth and food pipe has to be minimal and sloshed down with lots of water.:hehe: I take my three bitter antimalarials first with water after a few practice swallows, then my other pills and finish off with the relatively tasty chewable calcium.

                          I have not dropped my dose at all over 10+ years except for the few occasions when I have stopped or reduced it either because I was having surgery or because I have run short or even right out because of difficulties getting the prescription renewed in time, in the UK. Some people drop their medicines to a maintenance dose after a while and as a trial to see if they can manage at lower doses or even come off them altogether.

                          The hyper feeling I experienced at first, wore off after a few days as my doctor predicted it probably would, otherwise I would of course have reduced the dose. It wasn't only the lack of sleep that was worrying because I need a lot of sleep, but this feeling of my mind racing away full of 'brilliant' notions. I am sure I notice a deterioration even at lower doses and I have no concerns at all about taking it for the rest of my life.



                          Quinacrine was taken off the market maybe about 20 years ago and replaced by Plaquenil for antimalarial prophylaxis which is why the Quinacrine has to be compounded. The combination was well known for ages but got forgotten about because of the difficulty getting hold of the Quinacrine.

                          It's a good principle to take the least dose possible for effectiveness of course, but it doesn't have to be at low doses. I take 100mgs a day Quinacrine, at first along with 400 mgs Plaquenil which was then replaced by 500 mgs chloroquine.



                          Yes that is a good policy although every 2/3 months would usually be considered unnecessarily often. Every six months is the usual recommendation in the USA although every year was the consensus view for those are not in a high risk group in USA and Canada.


                          The best answer is to report anything new and worrying to your doctor so he can decide if it is serious or not. Otherwise you are in effect diagnosing yourself. The question of eye toxicity is in fact much more complicated than realised and some aspects are slightly controversial for example what are the best methods of testing. Apparently the photophobia and haloes round lights is due to the corneal deposits not the retina being affected. It is not permanent, might be asymptomatic meaning the patient isn't aware of any problems See p1162 of Dubois. Dr Wallace comments that they are not usually a reason for discontinuing therapy entirely.

                          As for retinal damage, Dr Wallace comments that that "retinopathy is a frequently misunderstood problem that needlessly deters patients from initiating anti malarial therapy ". In addition to the stats I quoted below, he also reports the results of one study which found that between 1957 and 2003 19 cases of confirmed retinal toxicity had been reported in patients taking hydroxychloroquine.
                          " All had abnormal renal function, had taken the drug for more than 6 years, or had been dosed at actual body weight instead of ideal body weight."

                          Another study in 1992 of all reported and published cases between 1960 and 1990 found 20 cases which fulfilled the validated criteria. In 15 of them dosage had exceeded the maximum recommended dose. The other 5 had taken Plaquenil for over 10 years.

                          In the summary to the Chapter, Dubois p1164, Dr Wallace says that "irreversible retinal changes have never been reported in patient with lupus who was taking HCQ in recommended doses for up to 6 years and undergoing eye tests every six months ". I am not sure if irreversible retinal changes means any signs of retinal change asymptomatic clinically or not.

                          The comments and my reports of them can be checked out here:



                          If this link doesn't work for anybody, google (Dubois plaquenil retinopathy) which should at least take you to the book. Then use the 'Search this book' function



                          Reports I have read are not really a useful guideline when you have the medical reports to hand especially when the 'variables' are taken into account. Maybe I have read about 6 in over 10 years of participation in forums including a few years as a moderator on this busy forum when I read almost every single post. I must have read tens of thousands of posts, tho of course they were not all about antimalarials except that they have to be one of the most frequent topics on every forum.

                          As with any issue, people who have strong feelings and bad experiences tend to reply whereas those who are perfectly happy don't take the trouble. Nor is the forum a representative cross section of the lupus population. Few of those who are leading normal, problem free lives with their lupus well controlled or in remission ever bother to participate.




                          I have had no long term unacceptable side effects from any of the antimalarials and that's over a total of maybe 25 years. The possible discoloration problems also seem very variable and highly individual. I have no noticeable yellowing at all or any unacceptable darkening or lightening of skin either. I have been told that my nails are a bit purply but I never noticed it, and I have a medically very interesting dark patch on the roof of my mouth. My hair also bleached at the temples but this looked like deliberate highlights. Possibly my eyebrows and lashes are bleached too but I am very fair skinned anyway and it could have been part of natural aging and general greying.



                          In your place I would want a second opinion about the ocular rosacea if you haven't already had one. It seems to have some features that might be found also when the eyes are affected by skin lupus although I suppose that if other lupus skin problems have improved with the Quinacrine, the eye problems might be expected to have also eased.

                          Dry eyes and mouth, known as sicca syndrome, are a common feature of lupus and diagnostic of a similar sort of disease called Sjogren's. The malar rash typical of lupus is often misdiagnosed as rosacea. The eyes can be affected by discoid lesions.



                          Have you had urine tested to make sure there is no protein present?

                          Plaquenil can also have a stimulating effect although it's not as well known or pronounced as Quinacrine's. It's a good idea to take these meds in the morning. Occasionally I have taken mine mid afternoon and I then sleep very poorly so now if I forget them in the morning, I wait until the next morning.

                          You might do just fine on the reduced Quinacrine but if you need the Plaquenil I hope you feel less anxious about it.

                          All the best
                          Clare
                          Wow again, thanks so much for the response and all the info.

                          Very interesting note about the Ocular Rosacea. I have never seen an eye Doctor about it but was told by a derm a year or so back that it was likely Ocular Rosacea due to his observations of the inflammation (he had a look at my eyes with his eye scope) and my symptoms (transient grittyness, dryness, blurryness) and he reccomended some OTC drops and that was that. I think I am going to opt/request to get my eyes checked thouroughly regardless.

                          I will keep you posted on how things go.

                          Cheers,

                          Comment

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