Hello all,
I thought it was about time I brought my little bit of positivity and encouragement to these boards.
There are a lot of new people here and a lot of people going through a hard time so I hope this helps a little.
As some of you know I haven't had an easy couple of years.
I have to say that I have thought a while before posting, almost scared to do so...must be the superstitious Irishness in me!
Earlier in the year I posted saying that things had been great for a couple of weeks. Unfortunately as many of you know I then had a pretty big setback and breathing problems linked to trying to reduce prednisolone.
Basically my disease has been difficult to control. I have been far luckier than many as I haven't been in hospital and I haven't had any major organ problems (we'll forget whatever is happening to my breathing here :lol
.
Anyway. For the last couple of months there has been a change. A subtle one which is quite different to what happened earlier in the year. I "feel" a kind of stability and I have a kind of endurance I didn't have before.
I no longer get severe muscle reactions from the slightest exercise and can now walk the dog at a relatively normal speed. The only thing that stops me there is the breathing but the dog is good and stops dead as soon as I need to, he's got used to it.
I have a feeling (and the rheumy agrees that it could be), the plaquenil has finally kicked in. Now this is 18 months on!! The disease is still well active and I have a lot of inflammation going on but it doesn't stop me feeling more human and it hasn't taken away that increased endurance. I can live again!
We even managed a week-end away which involved lots of driving and one day of about three hours walking. I was tired for a few days after, had to take it easy, but I did it!!
My brain was a big problem. You might all laugh but I used to be pretty bright :lol: and being on your toes was essential as an in-company trainer. Recently my cognitive issues got a lot worse. They were really worrying me and I lost over a month's work (I only work a few hours a week now as a translator). The cognitive issues were accompanied by daily headaches. I had had this before - lupus fog - and it had seemed to get better with better disease control but nothing was heping this time.
I phoned the neuro who said to try riboflavin. That did zilch unfortunately. I talked it over with the rheumy when I saw her but although she took it seriously she didn't want to change any meds as she wanted to try and confirm this "stability"...so there was me at a dead end.
Now, to be fair, neither of these docs knew me before I was ill, so maybe burbling pixie mode seemed fine to them but it wasn't to me...
I went to see my GP three weeks ago (for my son) and, of course, he asked how I was doing. I kind of said fine but said that the brain thing was deeply distressing for me etc etc...I explained some of the things that had happened and he literally sat up and looked shocked! You see, he has known me for years.
So, he said, we could try some piracetam (nootropil). He said that it should work both for APS related problems or if things were due to lupus vasculitis. Of course, I had never heard of it. Anyway, so far, touch wood....it has worked wonders. My brain is quite functional, doing a whole lot better - I still have some odd memory things occasionally - but really, I can work, I can think, my mind feels full of fresh air and I have NO headaches. For me the difference is nothing short of miraculous. And, the great thing is, it doesn't, in any way change or influence my basic lupus treatment.
All that really, just to say that, even for those who have trouble controlling their disease, things do get better. Manageable and quite liveable.
I'm hoping this will continue. Next week will be a HUGE test as we are taking an enormous step and we're going to Greece to see a friend. I'm really looking forward to it even if I'm slightly afraid it might have a bad effect...but hey, it might not and it's soooooo good to be able to consider it!!
love and hugs to all,
Katharine
