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 - 1 of 12 Posts
Dear Sally, I am sorry you have to contend with this. You really do need better treatment especially as you need to work for a living. Please don't just accept this second rate care.
x Lola
1 - 1 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.