Hello all
Just a quick line or so to let you know what happened at my rheumatology appointment.
I wrote a post questioning my diagnosis since my last letter from my consultant said my blood tests were more or less normal.
She spent a good while explaining everything to me. She said there was no mistake - that whilst my lupus was mild it was being monitored to keep it that way. She said the reason for my appointment yesterday was to find out how I was doing, that if I did not feel better on Plaquenil she might have prescribed other medication to help. She said the fact that I have had positive bloods is less important than the symptoms I presented with over a year ago.
She was very happy that I feel so much better. She said we could continue with the 400mg or drop down to half and see how I go. She said if I stopped it I might be fine for 3-6 months, but then flare and have to start again ... side-effects ... a long wait for it to work again.
In short she advised me to stay with the Plaquenil, and we have agreed she will write to my GP to say he should prescribe either 400mg or 200mg depending on how I feel and what I want to do about it.
I'm going to stay on 400mg for another month and if I stay well, reduce to 200mg.
Thank you for all your advice when I was feeling unsure.
I remain pain-free and well and link this very much to Plaquenil, so anybody worried about 'taking drugs' who is prescribed this medication - please take heart. It has really, really helped me. It has taken about 10 months, I think, but it is well worth it.
I remain forgetful, but have gained in stamina and I am not in pain. This is particularly important because I had not really found any analgesia that completely took the pain away so I put up with the feeble effects of anti-inflammatories that gave me unpleasant side-effects. \
I now rarely go to bed during the day, and I can swim 30 lengths or for 30 minutes with no problems 3 times a week. I even stay awake during my little horticulture course, which is all day twice a week. I am doing all the taxi driving for my family again, and intend to try to go to work part-time (doing what I do not know!) at the end of summer. I even do the yoga every week too.
Not that long ago I was tired when I woke up and could have slept 24 hours a day were it not for the fact that I was being kept awake most nights with pain. I was reduced to weary tears on many occassions, and wondered how I would ever adjust to such a miserable existence for the rest of my life.
I bounced between despair and too much trying (horse riding, for example ... !!!??? - I ask you).
With the help of people here and consistent support I feel ready to move forward again with illness in the background instead of to the fore.
I am wirting this to let you all know how very grateful I am.
Take good care everybody.

Just a quick line or so to let you know what happened at my rheumatology appointment.
I wrote a post questioning my diagnosis since my last letter from my consultant said my blood tests were more or less normal.
She spent a good while explaining everything to me. She said there was no mistake - that whilst my lupus was mild it was being monitored to keep it that way. She said the reason for my appointment yesterday was to find out how I was doing, that if I did not feel better on Plaquenil she might have prescribed other medication to help. She said the fact that I have had positive bloods is less important than the symptoms I presented with over a year ago.
She was very happy that I feel so much better. She said we could continue with the 400mg or drop down to half and see how I go. She said if I stopped it I might be fine for 3-6 months, but then flare and have to start again ... side-effects ... a long wait for it to work again.
In short she advised me to stay with the Plaquenil, and we have agreed she will write to my GP to say he should prescribe either 400mg or 200mg depending on how I feel and what I want to do about it.
I'm going to stay on 400mg for another month and if I stay well, reduce to 200mg.
Thank you for all your advice when I was feeling unsure.
I remain pain-free and well and link this very much to Plaquenil, so anybody worried about 'taking drugs' who is prescribed this medication - please take heart. It has really, really helped me. It has taken about 10 months, I think, but it is well worth it.
I remain forgetful, but have gained in stamina and I am not in pain. This is particularly important because I had not really found any analgesia that completely took the pain away so I put up with the feeble effects of anti-inflammatories that gave me unpleasant side-effects. \
I now rarely go to bed during the day, and I can swim 30 lengths or for 30 minutes with no problems 3 times a week. I even stay awake during my little horticulture course, which is all day twice a week. I am doing all the taxi driving for my family again, and intend to try to go to work part-time (doing what I do not know!) at the end of summer. I even do the yoga every week too.
Not that long ago I was tired when I woke up and could have slept 24 hours a day were it not for the fact that I was being kept awake most nights with pain. I was reduced to weary tears on many occassions, and wondered how I would ever adjust to such a miserable existence for the rest of my life.
I bounced between despair and too much trying (horse riding, for example ... !!!??? - I ask you).
With the help of people here and consistent support I feel ready to move forward again with illness in the background instead of to the fore.
I am wirting this to let you all know how very grateful I am.
Take good care everybody.