Hello Andrea
I' m sorry that you have this bad reaction to the Plaquenil and I do think your doctor's reaction isn't specially caring and I might start looking round for another. Get back to her if you can and explain how much pain you are in and ask for relief meanwhile in any suitable way. Also ask why you can't have an earlier appointment in the circumstances.
You do have to wait at least until the rash has cleared before starting any other disease modifying medicine or certainly one in the same family.
That's so you know that any further or continuing reactions are due to whatever medicine you are taking.
I wonder why a new med can't be started as soon as the rash has cleared. I have no medical training so I can't say why there should be so long a wait as 5 months before starting the alternative to Plaquenil, assuming that was the earliest on medical grounds and not just because that was the soonest the docs could get round to dealing with it.
Apart from trying NSAID's to get as much relief as possible from pain I am pretty sure that Prednisone can used to help soothe and clear the rash. It would also provide you with some symptomatic relief by quickly dampening lupus inflammation. Prednisone has to be used sparingly but I think you should at least be offered the choice ! As you say, it is 3 months of your life and the effects of not being adequately medicated could be disastrous such as causing job loss
The medicine Lola mentions is called Quinacrine in the USA. We both go to the same world famous lupus treatment centre in London which happens to have long used Quinacrine as part of its medicinal armoury for systemic disease, as opposed to its better known use for skin lupus.
I have no idea how widespread its use for SLE is in the UK, but it is not all that common in the USA. I know many, perhaps more, cases when US doctors have refused to prescribe it for SLE than when they have proposed it of their own accord and many when they have refused to even consider the patent's' request.
Try calling her to discuss further and if you get no joy, try seeking a second opinion, making sure you see a lupus specialist. Make sure you don't end up with no doctor at all. Also make sure you have copies of all relevant blood work and other tests to prove your diagnosis
Let us know if you would like more info about Quinacrine. I am writing to my US doctor to ask if people who react to Plaquenil with skin rashes tend to be OK skinwise with Quinacrine. An older name for Quinacrine is Atabrine by the way, not to be confused with Aralen which is chloroquine .Although it is the same anti malarial family, it has different qualities from Plaquenil or Chloroquine. This means that it doesn't in general risk the same side effects and very often is a great alternative to Plaquenil or chloroquine.
Let us know how you get on - we can provide good references to the use of Quinacrine in SLE if you need them. It sort of got forgotten about when it was replaced on the market by Plaquenil. It now has to be obtained from a compounding pharmacy or hospital pharmacy
Good luck
Clare
I' m sorry that you have this bad reaction to the Plaquenil and I do think your doctor's reaction isn't specially caring and I might start looking round for another. Get back to her if you can and explain how much pain you are in and ask for relief meanwhile in any suitable way. Also ask why you can't have an earlier appointment in the circumstances.
You do have to wait at least until the rash has cleared before starting any other disease modifying medicine or certainly one in the same family.
That's so you know that any further or continuing reactions are due to whatever medicine you are taking.
I wonder why a new med can't be started as soon as the rash has cleared. I have no medical training so I can't say why there should be so long a wait as 5 months before starting the alternative to Plaquenil, assuming that was the earliest on medical grounds and not just because that was the soonest the docs could get round to dealing with it.
Apart from trying NSAID's to get as much relief as possible from pain I am pretty sure that Prednisone can used to help soothe and clear the rash. It would also provide you with some symptomatic relief by quickly dampening lupus inflammation. Prednisone has to be used sparingly but I think you should at least be offered the choice ! As you say, it is 3 months of your life and the effects of not being adequately medicated could be disastrous such as causing job loss
The medicine Lola mentions is called Quinacrine in the USA. We both go to the same world famous lupus treatment centre in London which happens to have long used Quinacrine as part of its medicinal armoury for systemic disease, as opposed to its better known use for skin lupus.
I have no idea how widespread its use for SLE is in the UK, but it is not all that common in the USA. I know many, perhaps more, cases when US doctors have refused to prescribe it for SLE than when they have proposed it of their own accord and many when they have refused to even consider the patent's' request.
Try calling her to discuss further and if you get no joy, try seeking a second opinion, making sure you see a lupus specialist. Make sure you don't end up with no doctor at all. Also make sure you have copies of all relevant blood work and other tests to prove your diagnosis
Let us know if you would like more info about Quinacrine. I am writing to my US doctor to ask if people who react to Plaquenil with skin rashes tend to be OK skinwise with Quinacrine. An older name for Quinacrine is Atabrine by the way, not to be confused with Aralen which is chloroquine .Although it is the same anti malarial family, it has different qualities from Plaquenil or Chloroquine. This means that it doesn't in general risk the same side effects and very often is a great alternative to Plaquenil or chloroquine.
Let us know how you get on - we can provide good references to the use of Quinacrine in SLE if you need them. It sort of got forgotten about when it was replaced on the market by Plaquenil. It now has to be obtained from a compounding pharmacy or hospital pharmacy
Good luck
Clare
