The Lupus Forum banner

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
See less See more
1 - 2 of 12 Posts
I'm shocked he thinks you have active lupus and would prescribe methotrexate or Imuran before Plaquenil. And that Plaquenil would not really help, and that you're better off with just exercise he's prescribed! Completely shocked.

Is there a way to see a different rheumatologist or convince your GP to give the Plaquenil a try to see if it helps over the next 9-12 months? Plaquenil is really such a benign medication, safer than many over the counter meds we take every day without thought! The only consideration is routine eye exams.

As to what to expect... most will have an improvement on the Plaquenil but many will still experience pain and fatigue. Some reach near remission with Plaquenil alone and others need additional medications added long term or intermittent prednisone. It's really quite variable, as with everything else with this disease.
I do understand that feeling of wondering... is this as good as it's gonna get or as good as I can expect to feel? Would I feel better if I went on an additional medication and is it worth the risk/side effects? I myself wonder sometimes if I should be put on additional disease modifying medications beyond the Plaquenil with occasional use of prednisone. I am definitely not symptom free while on Plaquenil, and have flares much like you describe. But I have improved with the Plaquenil in many ways nonetheless.

But in your case, with a diagnosis of lupus and not on ANY disease modifying medication, it is just so obvious that you need to be put on Plaquenil. Give it a try, hopefully your GP will prescribe it to you if there is no other rheumatologist that you can see. It is absolutely mind-boggling to us all (I think) that you have not been put on this medication yet with a systemic lupus diagnosis.
1 - 2 of 12 Posts
This is an older thread, you may not receive a response, and could be reviving an old thread. Please consider creating a new thread.