Pesky Scumbag Steroids - Update

[xfieldok]

It has taken a good while, but I think I have beaten them into submission.

I didn't get a whole lot of help from the surgery re taking insulin. As a result, I did what they told me and kept increasing it until I was taking 10 units of novorapid 3 or 4 times a day. I told this to the Specialist Diabetes Nurse when I saw her a couple of weeks ago. After she stopped twitching and sqeaked "no" a couple of times, she became more coherent and we had a good informative conversation. Now reduced to 4 units every 3 hours, numbers dependent.

Started the second lot of immuno suppressants a couple of days ago. On the first lot, I was going for weekly blood tests because they could affect the liver, and they did. Unfortunately, the higher numbers were not picked up for several weeks and were astronomical by the time someone spotted them. The neurologist stopped the tablets immediately, reduced the steroids by one tablet and then I had to wait 5 weeks to see how/if the liver improved. BGL improved as soon as I reduced the steroids.

So, I was waiting for the battle when the steroids increased again. So far so good. I have to catch the rise. I am finding that if I inject as soon as I hit 7, I can keep it in range. Of course I miss it sometimes and shout at myself! I also have to be careful towards the evening, when the steroids are starting to wear off and sometimes I will let the numbers go up a bit rather than overdo the insulin.

Eyes are a tiny bit better. They have been awful, probably caused by the peaks and troughs and will probably take a few weeks before they are back to normal.

Still having to go for blood tests, but now I get a copy printed out for me and check them myself.

A lot happier now and I am sure that the stress levels have gone down which can only help.

Not been brave enough to try cake yet

 

[DCUKMod]

It has taken a good while, but I think I have beaten them into submission.

I didn't get a whole lot of help from the surgery re taking insulin. As a result, I did what they told me and kept increasing it until I was taking 10 units of novorapid 3 or 4 times a day. I told this to the Specialist Diabetes Nurse when I saw her a couple of weeks ago. After she stopped twitching and sqeaked "no" a couple of times, she became more coherent and we had a good informative conversation. Now reduced to 4 units every 3 hours, numbers dependent.

Started the second lot of immuno suppressants a couple of days ago. On the first lot, I was going for weekly blood tests because they could affect the liver, and they did. Unfortunately, the higher numbers were not picked up for several weeks and were astronomical by the time someone spotted them. The neurologist stopped the tablets immediately, reduced the steroids by one tablet and then I had to wait 5 weeks to see how/if the liver improved. BGL improved as soon as I reduced the steroids.

So, I was waiting for the battle when the steroids increased again. So far so good. I have to catch the rise. I am finding that if I inject as soon as I hit 7, I can keep it in range. Of course I miss it sometimes and shout at myself! I also have to be careful towards the evening, when the steroids are starting to wear off and sometimes I will let the numbers go up a bit rather than overdo the insulin.

Eyes are a tiny bit better. They have been awful, probably caused by the peaks and troughs and will probably take a few weeks before they are back to normal.

Still having to go for blood tests, but now I get a copy printed out for me and check them myself.

A lot happier now and I am sure that the stress levels have gone down which can only help.

Not been brave enough to try cake yet

Oh xfieldok, when I say I'm so happy for you, I mean that because you're finding a way to help you manage things against the uphill (yes, I know) struggle.

How are you in general? I was really pleased to see you rejoin us. It's really good to see you.

 

[xfieldok]

Good to be back. Eyes mean that I have to severely limit computer time. I have blurred and double vision which is the myasthenia. The horrible feeling that I have been crying for days is down to the high blood sugar and the peaks and troughs. It will sort itself out.

My sense of humour went for a holiday for a period of time. But then so did I! We took the dogs to the cottage in the lakes where they behaved themselves (apart from Charlie who found his bark and likes the sound of his own voice). I was OK for the first couple of days and then fatigued, but I didn't have to do anything and came home feeling much better. We are off again for two weeks October/November.

Came home with enough lamb and beef to fill the freezer (yah boo Brexit) and discovered that alpacas sound like birds. At the planning stage now for new carpets and decorating......

 

[Brunneria]

What a journey!
V glad to hear you are getting the tools together to manage it all. What hard work though.
How is the chewing/eating now?

I know the ‘finding the bark’ thing! Our no 3 discovered hers, and had a joyous week barking at EVERYTHING - leaves, moths, postwomen, cars, birds, creaking floorboards, the tv, the microwave...

It gradually eased off over time. Thank heavens.

 

[xfieldok]

Forgot to mention. Couldn't have done this without the Freestyle Libre. At one point it estimated my HbA1c at 58. Today it estimates it as 42. Big but. I get a lot of 3 readings, one morning about 5am it read 2.6. Emergency finger prick. Nearly always in the 4s. The 2.6 was 4.5 on the Tee2. So a lab test is going to give me a higher HbA1c. Anyway it is moving in the right direction so I am happy.

Talking of Big Buts, I have gone from 9 stone 5 (happy) to 11 stone and I am still doing keto

 

[xfieldok]

What a journey!
V glad to hear you are getting the tools together to manage it all. What hard work though.
How is the chewing/eating now?

I know the ‘finding the bark’ thing! Our no 3 discovered hers, and had a joyous week barking at EVERYTHING - leaves, moths, postwomen, cars, birds, creaking floorboards, the tv, the microwave...

It gradually eased off over time. Thank heavens.

Eating and chewing OK thank goodness. It has been hard work and would have been easier if the Specialist Diabetic Nurse had been available more than once a month! Never mind, it was her that authorised the Freestyle Libre (for the time I am on the steroids) and for that I will be eternally grateful.

Charlie will take exception to dogs/or a person on the TV. Flies on the wall. His/our reflection in the glass door. A plastic bag waving in the wind has his tail down and quivering, my brave boy! 8 months on 19 September so still babies.

 

[Goonergal]

Very good to see you back here @xfieldok and to hear that you’re starting to find a way to manage a very tricky situation. Really hope things continue to improve.