diabetes and sarcoid treatment

About 2 and a half weeks ago I started treatment for Sarcoidosis. The decision to start followed my second brain MRI (this time with contrast), which confirmed neuro sarcoidosis. It does not seem “too bad”, but my doctor wanted to get a neuro consult and start treatment immediately.

I started on 20mg prednisone per day for the first 10 days, and then reduced to 10mg. The effects on my blood sugar set in about 5 hours after taking my first dose. I increased my basal rate up to 150% gradually over two days and things seemed to settle there. But then a couple days later I started experiencing some lows around midnight, and had to start adjusting. The weird thing was that I still needed to run my basal at 150% for most of the day, but not at night. I reduced my rates, and strangely ended up on LESS insulin between about 10:00 and 02:00 than before the prednisone. I know this sounds a bit impossible, but things have seemed to be a bit more stable since. After reducing my dose to 10mg there were no real changes.

I am also on 15mg methotrexate per week. I have not experienced anything too bad related too this. I had slight cramping now and then a day or so after taking it. I noticed after the second dose that I was losing a bit more hair than normal, but nothing too bad. It was decided to add the methotrexate in order to keep the prednisone dose as low as possible. My doctor does not like prescribing it to women of child bearing age, or women who still want to have kids because of the possible side effects on fertility. But because of our fertility history this was really not an issue for me. I am also taking 5mg folic acid per day, along with a multi vitamin.

I have a couple of bruises on my legs, which I think is possibly because of the meds. Headaches are infrequent now. My facial movement has mostly returned – my smile is still a bit skew, and then I also don’t have full movement back around my eye. I am still without my sense of smell – which sometimes I think is a blessing in disguise. But I do miss it a lot. My taste is also still a bit altered.

I saw the neurologist who was happy with everything. I will now just monitor the improvement in my facial movement, and if in about another 4 weeks (6 weeks from my visit with him) there has not been much changes, I will go for a lumbar puncture. This will be mainly to determine whether the dosages are sufficient. I have a blood test in about 3 weeks – recheck my SACE level , and some other tests to see the effects of the methotrexate on my blood levels and liver. A week later I will another lung x-ray and lung functions done and see my pulmonologist for an update.

To be honest it all probably sounds a lot scarier than it is. Most of the time I do not feel sick. I feel tired a lot, but that is about it. And most of the time I am just glad that I got diagnosed in the end, because I realise it could have taken a lot longer than it took.