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 - 4 of 12 Posts
Oh my goodness!!!
Im surprised by your reactions. Thanks all of you for your help. Now Im all thrown out again. Id just decided to call it a day and accept this is as good its going to get.
The slight blood thinning affects and the cholesterol lowering would seem a benefit yes.
I dont have APS but I have had a DVT and also high cholesterol. Also a raised or positive di dimer which Im not sure what that means. Always raised ESR of course.

His words were...' I find it difficult to see a case for disease modifying therapy or indeed re -introduction of steroids. Hence the emphasis on exercise to improve stamina. One could consider introduction of agents such as Methotrexate or azathioprine or cyclosporin but I am not certain of how that is likely to help her overall condition.
He also said... 'there is no doubt in my mind she has low grade active lupus. There is equally no doubt in my mind that this is contributing to some of her symptoms. However as far as I can make out she is no worse off the steroids pretty much as she was when she was taking them and certainly I dont not think her blood tests incicate that we are overlooking severely active inflammatory disease or indeed organ threatening diesease. '

Hes not done any blood tests himself at the last 2 visits. (Which were about 8 months apart) Just the first one when I got diagnosed 6 months before that although I have had a few blood tests done at the doctors when Ive been about symptoms here and there.

Not sure where to go from here but I will be making an appointment with my GP (when she gets back from her holiday) I will discuss this with her and see what she thinks.

I am unsure of how bad I am myself. You know how you get used to not feeling on par and then after a long time it gets to be the norm.
I run my own business from home so do manage to arrange my time a bit around how I am feeling. I can have a sleep in the afternoon if I need it and I can sit down between jobs etc.
If I worked for someone else in the workplace I dont know how I would be able to cope then.
I dont have a partner either and I often think. How would I cope if I did have one. With this fatigue, joint pain and lack of stamina how would I manage to sustain a relationship.

With what youve all said about Plaquinel I would have thought it would have been worth a try to see if I felt better. And also it would be a good time now to start it while Im not in a massive flare I would have thought. I have had massive flares in the past so will he just wait till that happens again and then slap me back on the Pred as it will be the only thing that will work instantly.
I thought maybe its because its a very strong body altering drug with lots of side effects and hed rather not put me through that if Im sort of ok. But you all seem to think its a fairly harmless drug with minimal side effects.

Im just thinking aloud really so thanks for reading.

It never ceases to amaze me how unforthcoming an appointment with a specialist is and how enlightening it is on here.

Hes not a Lupus specialist though. Most of you are. Well at least you understand where Im coming from.
Thanks again.
Luv Sal x
See less See more
Thankyou all. Youve been so helpful. Ive been to the GP today and she agrees with me and you that the Rheumatologist isnt being very helpful. She doesnt know a lot about Plaquinel but I have showed her the report you suggested. She is very interested to learn and is going to make it a mission to get some answers for me even though this particular Rheumatologist isnt very forthcoming.
Shes thinking of referring me on to another one or.. London because she doesnt think I am getting the best care either.
As soon as I walked in today she said ..Oooo you look tired. I said I am tired..thats one of the biggest problems.
I feel a little guilty still to be going on about a little tiredness and a spot of weakness and joint pain.
I didnt take the internet advice at the appointment because I know some doctors sneer when youve looked things up on the internet but she was so lovely and said.. Nooo drop me in anything you think will be useful to me as I dont know much about Lupus or the drugs but love to learn and like a challenge. She hasnt anyone on her books on Plaquinel and she says there are no guidelines she can find to tell GPs what to do regarding it.
Well theres a little update as to how Im going on and thankyou all for caring enough to reply in the past.
Sal x
See less See more
Thanks Clare,
Thats helpful. London would be difficult but not impossible.
I dont think Im serious enough though to go. Im doing ok. Id like to meet someone one day though that has Lupus to swap notes lol. You know whats silly.. sometimes I wonder.. do I have it really?
The GP is lovely so Im gonna rely on her at the moment to get me what I need.
She says I know more about it than her though.. so it is difficult isnt it.
Thanks for that
Sal x
1 - 4 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.