The Medicines & Effects
March 2012
I have just seen consultant who is pleased at the improvement on Steroids, still keep me on 40mg dose every other day. Diabetes is still all over the place, but not as high as when on 60mg - still high the evening of steroids and low the next morning. Can walk without looking at my feet on flatter surfaces, which is helping. Think I am about 50% of my old fitness, which is great!
I am now on Vitamin D as well as the rest so that is 5 different pill types, 3 to combat the steroid side-effects and to help with bones! I am supposed to see a consultant about my Sarcoidosis, waiting for appointment to come through. Neurologist wants to see me again in 2 months.
My feet and toes are starting to get severe pains. especially at night, but I am not wearing socks in bed for the first time, so I don't know if that has anything to do with it? However I had an itch on the top of my left foot (near my big toe) and didn't know whether to mutter about the itch or be really happy that I could feel something down there for the first time in nearly a year!
I have reduced the steroid dosage, to 30mg every other day, as a number of articles seem to indicate the less time you stay on steroids and the lower the dosage the better. I hope my consultant doesn't mind, but I wasn't going to wait until mid-May to ask and I don't like the £100+ fee every time I see/talk to him!
Still waiting for the Sarcoidosis consultant; have found out his name and will ring his administrator on Monday to see what is going on, but that will be another £100+ just to see him. I have to get this all approved by my medical insurance.
I have just seen consultant who is pleased at the improvement on Steroids, still keep me on 40mg dose every other day. Diabetes is still all over the place, but not as high as when on 60mg - still high the evening of steroids and low the next morning. Can walk without looking at my feet on flatter surfaces, which is helping. Think I am about 50% of my old fitness, which is great!
I am now on Vitamin D as well as the rest so that is 5 different pill types, 3 to combat the steroid side-effects and to help with bones! I am supposed to see a consultant about my Sarcoidosis, waiting for appointment to come through. Neurologist wants to see me again in 2 months.
My feet and toes are starting to get severe pains. especially at night, but I am not wearing socks in bed for the first time, so I don't know if that has anything to do with it? However I had an itch on the top of my left foot (near my big toe) and didn't know whether to mutter about the itch or be really happy that I could feel something down there for the first time in nearly a year!
I have reduced the steroid dosage, to 30mg every other day, as a number of articles seem to indicate the less time you stay on steroids and the lower the dosage the better. I hope my consultant doesn't mind, but I wasn't going to wait until mid-May to ask and I don't like the £100+ fee every time I see/talk to him!
Still waiting for the Sarcoidosis consultant; have found out his name and will ring his administrator on Monday to see what is going on, but that will be another £100+ just to see him. I have to get this all approved by my medical insurance.
April 2012
The steroids are still having a positive effect and I can now feel parts of my lower legs again (like when they get bitten by an insect), I am still getting migraine headaches and not feeling to great on a day when I take them, but they are working for me. It is now how long do I need to stay on them and what's next?
I saw a specialist on Sarcoidosis and spent nearly 2 hours having numerous breathing tests/scans etc, in a brand new device (cubicle) that measures just about everything to do with lung capacity and how you breath. This machine has a mouthpiece like in scuba equipment and they put a clip on your nose, forcing you to breath through your mouth. The tests were complex and I suppose thorough, what I learnt was your lung capacity is related to your height - the taller you are the greater the capacity. My capacity is 108% of what is expected - so that is good!
The good news is that my condition needs further monitoring but is not considered serious.
What I also fully understood following discussions was that with GBS or CIDP there is a chance it can effect your breathing, so thaty is why when I was admitted to hospital they were checking my breathing 4 times a day. As if it decreased they would have to put me on a ventilator. I am glad I didn't know at the time.
July 2012
I am still on Predisolone (30mg) every other day, plus Gliclazide (for my diabetes) Alendronic Acid and Vitamin D. They do still give me headaches, but nowhere near as bad as before. I feel so lucky that I am still improving and getting back towards "normal" whatever that may end up being. Especially as I see on Facebook etc. that other people suffer for years and years, with no/minimal improvement.
The steroids are still having a positive effect and I can now feel parts of my lower legs again (like when they get bitten by an insect), I am still getting migraine headaches and not feeling to great on a day when I take them, but they are working for me. It is now how long do I need to stay on them and what's next?
I saw a specialist on Sarcoidosis and spent nearly 2 hours having numerous breathing tests/scans etc, in a brand new device (cubicle) that measures just about everything to do with lung capacity and how you breath. This machine has a mouthpiece like in scuba equipment and they put a clip on your nose, forcing you to breath through your mouth. The tests were complex and I suppose thorough, what I learnt was your lung capacity is related to your height - the taller you are the greater the capacity. My capacity is 108% of what is expected - so that is good!
The good news is that my condition needs further monitoring but is not considered serious.
What I also fully understood following discussions was that with GBS or CIDP there is a chance it can effect your breathing, so thaty is why when I was admitted to hospital they were checking my breathing 4 times a day. As if it decreased they would have to put me on a ventilator. I am glad I didn't know at the time.
July 2012
I am still on Predisolone (30mg) every other day, plus Gliclazide (for my diabetes) Alendronic Acid and Vitamin D. They do still give me headaches, but nowhere near as bad as before. I feel so lucky that I am still improving and getting back towards "normal" whatever that may end up being. Especially as I see on Facebook etc. that other people suffer for years and years, with no/minimal improvement.