A Balancing act

448 Views 11 Replies 7 Participants Last post by Salopsally, Nov 16, 2008

Salopsally

Discussion Starter · Nov 2, 2008

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.
Well...
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.
So...
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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Clare.T

· #4 · Nov 3, 2008

Hello Sal

That man is a moron or let's say an apparent mix of arrogance and ignorance on an ego trip. Do you want your quality of life in the hands of such a person ? Surely you deserve better than this ? Yes, you deserve the best you can get! Your GP is on your side so use her good will to the max.
All you need is a prescription, for heaven's sake.
The hidden benefits of Plaquenil are quite amazing, an ever longer list and include slight blood thinning, of some interest to you I think?
Most of us are on a junior aspirin too.

There are virtually no long term risks to Plaquenil. Combined with the exercise programme which is brilliant it might be all you need most of the time.

Good Luck !

Clare

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Clare.T

· #11 · Nov 11, 2008

Well done Sally. As to why you think you have no right to be as well as possible, well I am no psychologist!
Bravo to your GP as well. There's plenty of info available about Plaquenil.

GP's can prescribe it but when they prescribe a medicine they are responsible for the patient's clinical welfare so they are reluctant to take that responsibility if they aren't fully educated in its use and all the rest. My GP has only two patients with lupus in his practice of 6000 multi-ethnic patients.
So I can understand why she wants a consultant's go ahead. Is there any chance of you popping down to the London Lupus Centre ?

Here is one resource

http://www.lupus.org.uk/information/information_informationforpatients_Antimalarials.htm

Cheers
Clare

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