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A Balancing act

448 Views 11 Replies 7 Participants Last post by  Salopsally
Hi friends,
Its been so good to come here from time to time and get your opinions and advice.
Ive posted before about how Im not really on any medication and I have taken this up with my GP who has written to my reumatologist. She seemed to agree with me that maybe a baseline drug like Plaquenil would help.
Had a reply back this week which is good because I think my GP was rather shirty with him because she has to treat me for this and that and never gets a reply back from him which is difficult because of course she doesnt know everything about Lupus.
He said he agrees I have low grade active Lupus but thinks the exercise hes prescribed will help with my stamina and that a baseline medication would not really be appropriate.
He said maybe could try Methotrexate or Azithoprine but he cant see that it would really help.
Not taking Methotrexate again as ive had it before for the RA I was diagnosed with in the first place and I dont like it.
Hence my heading. Maybe Im thinking it is a balancing act and perhaps he is right. I have SLE and Fibromyalgia. How well can I expect to feel? Im ok. I get by. Im fatigued but Ive adapted my lifestyle to suit. I still have weak legs and walk like an idiot in shoes. But hey.. Im not in hospital.. I dont have organ involvement. I dont have brain fog.
All medications obviously have side effects so Im not getting them anymore. Been on Prednisilone for 3 years and just off them so that must be a bonus.
My joints are up and down for pain and inflammation but I take anti inflammatories here and there and they keep at an ok level.
I think Ive forgotten what normal is over the years. I should feel happy because before I didnt even have a diagnosis and I know lots of you here are still in that position.
Dont think Im looking for any real answers just pondering on the idea that maybe this is the life I can expect now and theres not much more that can be done.
Have to go so will end this rambling post.
You are all so great and its such a comfort to come here and read all your stories and get support when I need it.
Luv Sal xx
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Dear Sally

What a terrible situation to be put in by your Rheumy :mad: 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
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