Dear Sally
What a terrible situation to be put in by your Rheumy
Its unforgivable that he wouldnt start you on a base line medication like Plaquenil when he himself says you have active Lupus. I can understand that you are confused. After all its not easy 'taking on' professionals and challenging them.
Let me explain how Plaquenil works and that might give you some better insights into what your next steps should be. Plaquenil is a disease modifying drug. Its actually an anti malarial drug that was discovered to have a positive impact on modifying the immune systems of those of us with particular autoimmune diseases like Lupus. Its a slow acting drug that works to change the ph balance of our cells so that over time our bodies limit the amount of auto antibodies we produce. Its these auto antibodies that attack us and cause inflammation, etc.
Its a cumulative effect that builds up over time. Plaquenil is also reported to have some other good 'side effects' like slight blood thinning properties and cholesterol reducing benefits. Its particularly useful for helping those with skin problems from Lupus but not exclusively so as it helps to reduce joint inflammation also.
Generally speaking the standard of treatment for Lupus will be to start with Plaquenil if the patient has no contra indications. If Plaquenil alone is not sufficient to get the disease under control then other medications may be added. Sometimes this might be prednisone or medications like Imuran for example. Sometimes other anti malarials like Mepacrine will be added into the mix before these 'second' level meds are tried.
The whole thing is a bit of trial and error to some extent to see which particular cocktail of meds will suit. Many people however do very well simply on Plaquenil and never need to take other medications. Other people may still experience temporary flare ups and may need additional medications to control and dampen down the flare but all the while they will still be on Plaquenil.
The good thing about Plaquenil is that is has very few side effects and is a very safe, tried and tested drug. The main thing that needs to be watched out for is possible retina problems. While this is very rare it is nonetheless serious so getting regular eye checks is important while you are on the drug. Regular eye tests here in Ireland mean seeing the Opthamalogist about once every two years at this stage.
At the very least Sally I think you should be offered the opportunity to try this drug out to see if you can benefit from it. Its far, far safer than long term prednisone and doesnt have the potential to cause bone damage and other complications like pred can. It may very well be that it turns out you need more than the Plaquenil but you will never get a chance to find out until you try it and see if it helps.
Also Sally (and I dont want to be alarmist but its important that you understand) it might well be that you can rumble along and 'manage' your symptoms for a long time. However it might also be that your Lupus can start attacking vital organs and do irreperable damage while you are not being treated with any disease modifying drug. The whole idea of Plaquenil is a bit like an insurance policy. It helps to keep the disease under control. No one can tell for sure what part of us is being attacked and sometimes its only when a lot of damage is done that it becomes obvious.
I hope between yourself and the GP you can work out what to do. Maybe its time for fresh eyes to look at your case if thats possible? I wish you the very best and I completely understand how difficult all this is for you. We depend on the medical profession to guide us but in my humble opinion I think your Rheumy is not guiding you appropriately.
Lots of love
Joan:rose:
What a terrible situation to be put in by your Rheumy
Its unforgivable that he wouldnt start you on a base line medication like Plaquenil when he himself says you have active Lupus. I can understand that you are confused. After all its not easy 'taking on' professionals and challenging them.Let me explain how Plaquenil works and that might give you some better insights into what your next steps should be. Plaquenil is a disease modifying drug. Its actually an anti malarial drug that was discovered to have a positive impact on modifying the immune systems of those of us with particular autoimmune diseases like Lupus. Its a slow acting drug that works to change the ph balance of our cells so that over time our bodies limit the amount of auto antibodies we produce. Its these auto antibodies that attack us and cause inflammation, etc.
Its a cumulative effect that builds up over time. Plaquenil is also reported to have some other good 'side effects' like slight blood thinning properties and cholesterol reducing benefits. Its particularly useful for helping those with skin problems from Lupus but not exclusively so as it helps to reduce joint inflammation also.
Generally speaking the standard of treatment for Lupus will be to start with Plaquenil if the patient has no contra indications. If Plaquenil alone is not sufficient to get the disease under control then other medications may be added. Sometimes this might be prednisone or medications like Imuran for example. Sometimes other anti malarials like Mepacrine will be added into the mix before these 'second' level meds are tried.
The whole thing is a bit of trial and error to some extent to see which particular cocktail of meds will suit. Many people however do very well simply on Plaquenil and never need to take other medications. Other people may still experience temporary flare ups and may need additional medications to control and dampen down the flare but all the while they will still be on Plaquenil.
The good thing about Plaquenil is that is has very few side effects and is a very safe, tried and tested drug. The main thing that needs to be watched out for is possible retina problems. While this is very rare it is nonetheless serious so getting regular eye checks is important while you are on the drug. Regular eye tests here in Ireland mean seeing the Opthamalogist about once every two years at this stage.
At the very least Sally I think you should be offered the opportunity to try this drug out to see if you can benefit from it. Its far, far safer than long term prednisone and doesnt have the potential to cause bone damage and other complications like pred can. It may very well be that it turns out you need more than the Plaquenil but you will never get a chance to find out until you try it and see if it helps.
Also Sally (and I dont want to be alarmist but its important that you understand) it might well be that you can rumble along and 'manage' your symptoms for a long time. However it might also be that your Lupus can start attacking vital organs and do irreperable damage while you are not being treated with any disease modifying drug. The whole idea of Plaquenil is a bit like an insurance policy. It helps to keep the disease under control. No one can tell for sure what part of us is being attacked and sometimes its only when a lot of damage is done that it becomes obvious.
I hope between yourself and the GP you can work out what to do. Maybe its time for fresh eyes to look at your case if thats possible? I wish you the very best and I completely understand how difficult all this is for you. We depend on the medical profession to guide us but in my humble opinion I think your Rheumy is not guiding you appropriately.
Lots of love
Joan:rose:
