Update on Ingemlb

[ingemlb]

No I would hate to get shingles on top of everything else

[MikeG-2012]

There is big money to be had from the shingles vaccine. I think that is why you are seeing ads for it on TV.

[ingemlb]

After studying a lot of posts in the FB Wegener's group I made a decision to ring the doctor today and discuss what to do next. I am still in agony with the pain in the sides. Trying to reduce the Tramadol to just when needed but sticking with the Panadol Osteo round the clock.

Tomorrow I have blood tests. Rheumy agreed that after the tests I increase the pred again from 20 to 30 (which was where I was at the last visit and where I had been able to be pain free for a few days) and see what happens. I am seeing him on Monday we can then discuss what is next. He told me to keep up with pain meds and not to put up with too much pain.

It will be interesting to see if a few days after increasing the Pred the pain goes away and I feel much better again. Not that it will totally solve the mystery as to why despite good blood test results I end up in agony after reducing the pred Maybe I just need to reduce much slower. Stay on each level for 4 weeks instead of 2.

[windchime]

I just found out there is a muscle enzyme test they can do. I'm not sure what it shows as I just found out yesterday. Here are some web sites that talk about blood tests for muscle enzymes. I'm still not sure what other than to show muscle inflammation or damage. Thought this might be useful to you.

I woke up this morning feeling like someone took a baseball bat to my torso. That's what my muscles feel like at their worst and it starts when I roll out of bed. Might be an ibuprofen kind of day today.

Blood Tests - TMA - The Myositis Association

Enzyme & Protein Blood Tests

Creatine Kinase with Isoenzymes (Blood) - Online Medical Encyclopedia - University of Rochester Medical Center

[LisaT]

I think this is what the labs refer to as 'CPK'--this is one of the markers that was elevated when I had polymiositis which affects the muscles. I believe it indicates muscle breakdown due to inflammation.

[Alysia]

I just found out there is a muscle enzyme test they can do. I'm not sure what it shows as I just found out yesterday. Here are some web sites that talk about blood tests for muscle enzymes. I'm still not sure what other than to show muscle inflammation or damage. Thought this might be useful to you.

I woke up this morning feeling like someone took a baseball bat to my torso. That's what my muscles feel like at their worst and it starts when I roll out of bed. Might be an ibuprofen kind of day today.

Blood Tests - TMA - The Myositis Association

Enzyme & Protein Blood Tests

Creatine Kinase with Isoenzymes (Blood) - Online Medical Encyclopedia - University of Rochester Medical Center

Cindy, you are so amazing with your help around here. we are so blessed to have you
I hope your pains will go away, how dare they make you sore ?

[ingemlb]

Going to ask the Rheumy on Monday if they tested for muscle inflammation. If not then will ask could it be that? And let him come up with what tests he thinks would rule that out. But in my case it doesn't feel like it is in the muscles. But who knows. Pain seems to refer to all sorts of places in the body and the cause is not always at the place it hurts

[windchime]

I think this is what the labs refer to as 'CPK'--this is one of the markers that was elevated when I had polymiositis which affects the muscles. I believe it indicates muscle breakdown due to inflammation.

My doc requested an aldolase test. That shows inflammation, but not neuro damage. I assume that he'll request more if necessary. The creatine phosphokinase test or CPK tests for myositis or other neuro diseases. At least that's what it says on the web and we know they are never wrong.

[ingemlb]

Well by day 4 after going back to 30 mg of Pred I started to feel better. However the last few days also had a fever. That was gone by this morning. Pain started to reduce Saturday. Reduced the pain meds Sunday (yesterday). After increasing the pred to 30 I had trouble sleeping at night (but fatigued all day) so I started back on 4 mg of Melatonin and a Valium at 9pm before going to bed at night. That fixed the night sleeping and have managed a few good nights sleep which probably also helped with the healing.

Today saw my Rheumy. All blood tests and urine tests were ok. The A1C test showed diabetes management was a bit off (expected result under 7 actual was 7.5) so something to discuss with the endo tomorrow.

I asked the Rheumy why with all these great test results I was as miserable as I was on the reduced pred and he said it's the Wegener's and we can't always trust the test results. So I guess it's wait and see. Just need to be patient.

He suggested I stay on 30 mg another 2 weeks then try to go back down to 25. I may do that in 2.5 mg increments (as suggested by Michelle) and see how that works.

Hopefully my energy levels will improve now as well and I can get a bit more active again. Won't rush into things just yet. However unless I feel really great I will call my Rheumy suggest I stay on 30 mg another 2 weeks at least.

[Alysia]

I wonder about your fever, Inge. why is it ? maybe a flu ?
my labs don't always show the "state" of my wg. most of the time I had normal labs, during smoldering. only in acute state the labs were not normal.