One thing is for sure, since doubling the dosage, my body seems to be screaming at me to stop taking the azathioprine. But, end of this March of 2014 I will be dropping the prednisolone from 20mg/day to 15/day, that’s a mighty 25% drop! The medics have said its quite important that we keep on top of the bloods and that I stay aware of what my body is telling me. Its telling me I feel a little fucked…
Is that orb something to do with the moon?
Ok and tend to lapse sometimes? but erm, anyway. Just an update on the sarcoidosis side of things. Photos say it all…
Yes the Prednisolone seems to have failed, even as high as 40mg/day. My body can not sustain that amount of chemical punishment. So, and as mentioned before, we are trying some Azathioprine, low dosage at 50mg/day, the idea is to drop the Pred and increase the Aza.
Airedale hospital have been great, as per that photo they are bringing appointments forward. I have plenty to ask but the idea of organ rejection drugs makes sense, my body rejects my healthy organs, so lets try?
Prefer to be better.
One thing is for sure, this last week I have never felt so tired, shattered, or exhausted? which ever word fits best, but I will know more on the 22nd January as an appointment has been brought forward. Had some bloods taken last Monday which is the first of the weekly checks?
It really isn’t a big mystery, rarest of sarcoid, a few drugs, getting used to organ transplant drugs and other stuff, and so my body is constantly fighting, and will arrive through in a better manner, erm, my manner is fine ha.
Its like, a cloud just above the field that can be touched, reach out and we can see what most others don’t…
No not an anal day, mind you, erm, right. Today I started on the Azathiprione, haven’t a clue why these meds get given such bonkers titles!? They have started me on 50mg/day while still taking the 20mg/day of Prednisolone. I have to have my bloods checked weekly to keep an eye on the white cell count and bone marrow and something or another?
This is the first time I have ever seen any meds advice papers actually say it is used to treat Sarcoidosis amongst other lung diseases, really impressed with that.
Here we can view that the moderation in alcohol consumption needs to be adhered to? I have also been advised that the fatigue can be somewhat crippling while they find a ‘status quo’ with the meds.
Just spoke with Airedale Hospital, they have the latest results in but can not give them over the phone. I have to carry on with the current meds and dosages and they will be contacting me. It does make one worry although I know the next stages, as we get closer it gets more unnerving. In absolute honesty I would really love the sarcoid to fuck off and leave me alone.
Work have arranged for an occupational health doctor to call me on Monday, its not a problem and they are very welcome to view my records, they might need at least a week to work them out as many of my medics struggle to work me out!?
I must get on with some of the mega ideas for post’s on here, absolutely loads, its that current buzz word ‘procrastination’ that seems to arrive at mind, and so I best carry on not making plans but stick to the agenda, plans can fail, agendas just need working through…
If you have a few spare moments it would be very much appreciated if you could check out the following link? Please do click here and learn about my condition – Sarcoidosis.
The last few week have somewhat been taken up with the sarcoid shit, but as my site says; living with sarcoidosis, the good the bad and lots of in-betweens! Went to Airedale hospital today, they gave me a thorough one hour slot with the main respiratory consultant. I feel very privileged. I feel we have a direction, could be bumpy though!? Anyway, I have loads of other good shit to post, keep lucking!
Got myself spinning too much yesterday, kind of dreading going back where I were middle of 2010, at least we know what I have, its just trying to work out what to do???
The last few posts have certainly been about the sarcoid, we know its active. On Friday the doctors not only wrote an initial sicknote for one month but have now started insisting that the main consultants get on with me best possible. This is the worse I have felt in over three years – jeez.
So comes Saturday, I felt absolutely dreadful, phoned 111 and they went through the tick list “you need to go to hostpital” and so the fast track responce car got to me and then ambulance. I told them not to send them both, I know what I have but need to see if they can help.
111 = you have what, fast responce vehicle = you have what, ambulance = you have what, hospital = you have what. At that point I discharged myself, not the hospitals fault but I did not want some junior doctor practicing some meds on me…
, read the Blues in Britain magazine review or listen to my BCB Radio interview.