Tag Archives: Sarcoid

Bit of an update

Ok and tend to lapse sometimes? but erm, anyway. Just an update on the sarcoidosis side of things. Photos say it all…
Steroids failed
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.

Appointment moved 2 jpg
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.

Its a mystery or not

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?

Appointment moved.

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 all a big mistery.

Its like, a cloud just above the field that can be touched, reach out and we can see what most others don’t…

A – Day

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?

Aza 1
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.

Aza 2
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.

Latest on the sarcoidosis

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.

The British Lung Foundation on Sarcoidosis

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.
Sarcoid 1

Too much worry

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???
Pred

Though it’s not all doom and gloom

Just been for the flu jab, managed to get an appointment with the doc, he has referred me to both, Airedale and Bradford hospitals, see who gets me first? Still awaiting my consultant’s secretary to call. The doc did say I should be in hospital, nope, ceratinly not at this time of year, where possible I need to avoid ill folks. My lady friend from Ssafa is visiting me this PM, be great to have some female company, just company actually.

Ambulance trip to Airedale hospital

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…

Back to the beginning

For the first time since I actually started being ill back in June 2010, I feel worse, absolutely dreadful. The doctors have issued me with a one month sick note, jeez I don’t want to go through all that again. For sure Atos got my assessment wrong in February 2011, as did all the appeals almost taking me to the parliamentary ombudsman, but I stopped as it was also bothering my health. Trying not to think too much. What is a sarcoid? this site tells everything about life before sarcoidosis, during, and obviously it seems to stay there.

Those Brufen – Retard meds seem to work

Tell you what, after starting the new meds on Friday evening, I felt ill Saturday and Sunday, thankfully this morning I was in a state to be able to commute to work, actually felt ok, mid morning I felt I could have run a marathon – erm, anyway, they worked well until about 15:46 and by 16:44 I started to feel like early signs of the flu – influenza.

So, come 17:30 I was ready for the off, took five minutes longer to walk to the station and thought I was going to pass out on the train, thankfully I got a seat, had to nip in the Coop for some bananas, Oxo cube and butter – no booze! Got to the bus stop in time, wobbled home, put fish into boiling water, then add sprouts and spinach, had that, then the meds and one hour later I am typing this and starting to feel o.k. Its just a little bit of a run down as to how the meds seem to work, hoping I do not need to double dose next week.

Today I also started some other stuff at work, well pleased, hope I can get to the end of the year without anymore time off and keep my paranoia under control!!! Its still a big thanks to Leeds Remploy and work, its simply my change in health and life over the past three years that is so frustrating. Apologies to those I insult.