C reactive protein

[Birdie]

A month ago I reduced pred from 5 mg to 4 mg. Kinda surprising that such a small change would make much difference but I've got far more energy now and still seem to be slowly improving. Some days I can go to the grocery store without a wheelchair. Using the store's scooter let's me get three bags of groceries so I only have to go twice a week instead of every other day. I'm likin this.

I got results from tuesday's blood test and "C REACTIVE PROTEIN" went from 3.8 last time up to 15.8 this time. Every other result was about the same. The reading has been stable for quite a while now which makes me think reducing pred could be the cause.

Reducing pred further would be nice but if this indicates a big issue, then I'm (expletive omitted).

So who know's all there is to know on the subject?
Or maybe even a little bit of something about it?

[MaxD]

It is puzzling that you feel more energy after reducing the prednisone. On average, the body naturally produces about 5mg worth of cortisol to fight inflammation - but the adrenal glands shut down when you're on a long term dose of prednisone. It can take several weeks/months for the adrenal glands to kick into action and start producing enough cortisol as you taper down. During this time, it isn't surprising for CRP levels to rise, and for various other symptoms (fatigue, aches and pains in joints and tendons) to show up. Of course, if there's another underlying inflammatory process that was masked by the prednisone, that will start showing up too.

I'd definitely talk to your doctor about it in case you have other complicating factors and he may monitor you closely as you taper down.

But hey, if you're feeling better, why worry about a blip in the CRP level - let your doc do the worrying!

Good luck!

[Birdie]

It is puzzling that you feel more energy after reducing the prednisone.

But hey, if you're feeling better, why worry about a blip in the CRP level - let your doc do the worrying!

I know what ya mean, every other time I've reduced pred it was a bummer, suddenly stop functioning. I got an adrenal test recently and it showed I was responding and producing cortisol quite well, almost normal levels.

My issues is... I don't actually have a doctor. I have VA medical "care". Primary care doctor has been assigned and I've been trying to get an appointment since April. In theory I'll see her for the first time in December, but that last "in theory" appointment was cancelled the day before, so who knows.

I'm on my own "worrying". I have a standing order for a monthly blood test and I get the result 3 days later online. I've got prescriptions for 1 mg pred tablets and 50 mg Azathioprine to last about six more months. I MUST get out of this stinkin wheelchair and find a job I can do just to buy food. So any shared knowledge is greatly appreciated.

[Debbie C]

Its great news that you are feeling better and able to get out of your chair for awhile. If your test showed that your adrenal test came back good then you really shouldn't have an issue by reducing. Are you doing this on your own then ? Are you trying to get off all together ? I wouldn't yet if I were you until you are able to talk to a dr. If I were you, since you have a standing order than why not wait a few days and have it rechecked since our numbers can change at any time. Have you eaten any red meat at all before the test. I know that can make a difference ( I am not sure about the effects on your crp though...I would have to google it.) In the mean time glad you are able to get out more...keep us posted. Soooorry not much help. Just a note,I had my bloodwork done last month and my sed rate was in the 30's and other #s were high so my dr at CC called and wanted me to have it down again because she was concerned about something . 2 days later sed rate was 12 and all other #s good.

[Birdie]

Are you doing this on your own then ? Are you trying to get off all together ? I wouldn't yet if I were you until you are able to talk to a dr. If I were you, since you have a standing order than why not wait a few days and have it rechecked since our numbers can change at any time.

Yes I'm doing this on my own since I have no actual health care, VA does not count as health care. No I'm not trying to stop prednisone. I can't get blood work done again until next month. It's a once a month order and they refused to do it any more often, took a bit of work to get this much.

I'm trying to find the lowest dose to reduce fatigue and have a chance of building muscle. I don't have any muscle right now, hence the wheelchair and at least 15 hours a day unable to even do dishes.

I'm a bit concerned because of the change in C Reactive Protein since last month, before I reduced pred. It was stable at 3.2 to 3.8 for many months. I'm really wondering if I should go back to 5 mg of prednisone. My plan was to reduce to 3 mg based on this month's blood work. That's out the window.

[Debbie C]

It probably wouldn't be a bad idea to go back to 5. I just googled what makes your crp raise and there were several things. One being excercise..MAYBE you getting out and about more has caused some inflammation since you are not used to it. Another was infection ????? But it said it should return to normal after treatment so maybe going back up may help.Sorry again for lack of info. Hoping it goes back down for you...Take care When you see the dr. maybe ask her if she can write the order for every month or as needed. That's how mine in written so I can go whenever I feel the need. Which ..knock on wood..I just go 1 time a month. Also do you try doing leg lifts and other stretches while in the chair. There is also some very easy yoga moves that might help !

[drz]

What is your sed rate, usually called ESR since that is another inflammation marker but it is supposed to give you a reading over a longer period of time. It is harder to do correctly I guess since my local lab seldom is able to do it accurately but it might be another check on what is going on as far as inflammation. Infections always raise my inflammations scores.

[Birdie]

What is your sed rate, usually called ESR since that is another inflammation marker but it is supposed to give you a reading over a longer period of time. It is harder to do correctly I guess since my local lab seldom is able to do it accurately but it might be another check on what is going on as far as inflammation. Infections always raise my inflammations scores.

ERYTHROCYTE SEDIMENTATION RATE = 10 mm/hr 0-35 range

It's always 9 or 10 but if you really want to know then click the link below.

http://www.garyrin.com/bloodtests.jpg

[Alysia]

I dont want to spoil the party.... but I suggest to wait a bit more with reducing the pred. I doubt the good changes are because of the reduction in the pred. sorry. pred mostly give one more energy, not less. can there be another explanation ? I might be very wrong. just sharing my point of view...
what that test "c reactive protein" is testing ?

[Dirty Don]

Reducing pred is a matter more of percentages than amounts when one gets to those lower numbers. Some peeps never get past 5, 4, 3, etc. A low dose isn't gonna kill one, but it may the life one lives for quite a while. This is inappropriate & invalid, but I have been known to take a 2.5mg to stop the aching hips & back so I can swing better! Yikes! Spoons to ya Bird!

[whatthewhat]

Alysia: I like this website for understanding tests. https://labtestsonline.org/understanding/analytes/crp/tab/test/

Birdie, I am so bummed that someone who qualifies for Veterans medical care has such a hard time getting it, but THAT line of thought will do no good for my blood pressure numbers! Anyway, my sympathies for your predicament, and I will weigh in (for what it's worth) because you don't have a doc to easily call or email.

CRP is def a number we watch for our daughter, but it is part of the bigger picture, much like ESR as said before. PR3, BUN / creatinine, HGB - for her those are the big dogs that we are very vigilant about. I think this is difficult too because it's different for every Weggie to some degree; for example, she has a blemish on her chin that makes me think yesterday's blood test will show increases over last month's, and yet "a blemish" seems to be an innocuous development, especially for a teen. But my point is that we know her & her numbers.

it seems entirely reasonable to think an increased CRP is no biggies if all else is stable and not doing an up-tick (even within normal ranges). And let me add good for you to be puzzling and tracking and asking. One reason I like this forum is that it seems to self-select Weggies who are empowered :-) Best wishes to you.

[Birdie]

I dont want to spoil the party.... but I suggest to wait a bit more with reducing the pred. I doubt the good changes are because of the reduction in the pred. sorry. pred mostly give one more energy, not less. can there be another explanation ? I might be very wrong. just sharing my point of view...
what that test "c reactive protein" is testing ?

Prednisone causes muscle loss, and many other things like earthquakes and tornados and sink holes and mud slides and melting ice cream. :)

It interrupts the chemical process that allows muscles to contract, and that's my main issue. From my ignorant non-doctor understanding...

[Birdie]

CRP is def a number we watch for our daughter

I wrote a program and enter the data each time I get test results.

I had a great two man team looking out for me until last march. I didn't have to learn about this subject. Now I'm trying but the interpretation web sites aren't much good without Wegs specific perspective.


So.... ANY COMMENTS are greatly appreciated, it's all helping me figure it out. And I'm capable of putting comments into proper perspective.

http://www.garyrin.com/bloodtests.jpg (http://www.garyrin.com/bloodtests.jpg)

Intenet Explorer displays that image in a fit to screen mode, can't read it unless you click on the pic once it's on screen.

[Debbie C]

This is inappropriate & invalid, but I have been known to take a 2.5mg to stop the aching hips & back so I can swing better! Yikes! Spoons to ya Bird!

Does it help the golf game,Don ?? If so Gary , I would stay at 5 just to kick his butt on the course !

[Birdie]

Does it help the golf game,Don ?? If so Gary , I would stay at 5 just to kick his butt on the course !

I think it would take more than 5 mg of pred since I've never even been on a golf field. Anyway, golf bats scare me.

[Dirty Don]

Does it help the golf game,Don ?? If so Gary , I would stay at 5 just to kick his butt on the course !

Not really, but it helps me think I'm young again and can make those kinds of swings!! LOL...but, just for kicks: I have Xanax as a backup for other 'brainy' issues...and have shot 75 on full doses...no one but me on the course when I did that!! LMAO! Practice is what makes me/us better, just as in anything else athletic...or otherwise.

[Christina32]

Hey Birdie! Here's my two cents! I'm not sure what your taper schedule looks like but if you're feeling good at 4 stay there and continue your taper. My doc hasn't been concerned when my crp is that high even if I am a little symptomatic . Crp numbers can fluctuate quickly and anything can really cause it to go up a little. When it rises to a problem you will probably feel it too. I get bloodwork monthly and have seen it creep up over a few months. At this time the symptoms were creeping up too. Maybe you'll want to stay at 4 mg until the next one - and if good drop to 3? Or by halfs... If you're feeling good keep going! Best wishes.

Christina

[Birdie]

Maybe you'll want to stay at 4 mg until the next one - and if good drop to 3?

Hey thanks for the input. I think that's my plan, stay at 4 until the next blood work unless something else tells me there's a problem. I'd have been far more surprised when a 1 mg reduction (20%) made a difference, if not for this group pointing out that reduction is a matter of percentage. Reducing from 5 to 4 seems to have an effect similar to reducing from 80 to 60.

[MaxD]

Birdie - elevated CRP can be indicative of issues other than GPA, such as inflammation related to cardiovascular problems. You should ask your doctor (when you do get to see one) about it, especially given your higher than normal triglycerides and cholesterol, and the fact that you have been confined to a wheelchair and exhausted - none of which helps. I don't mean to be an alarmist, and the fact that you're feeling more energetic would be contrary to a cardiovascular issue. I guess what I'm saying is you need a really thorough checkup, but you already know that.

[Birdie]

Birdie - elevated CRP can be indicative of issues other than GPA, such as inflammation related to cardiovascular problems. You should ask your doctor (when you do get to see one) about it, especially given your higher than normal triglycerides and cholesterol, and the fact that you have been confined to a wheelchair and exhausted - none of which helps. I don't mean to be an alarmist, and the fact that you're feeling more energetic would be contrary to a cardiovascular issue. I guess what I'm saying is you need a really thorough checkup, but you already know that.

Don't worry about being alarmist with me, gimme your best thoughts. Much appreciated.

[annekat]

Hey Birdie! Here's my two cents! I'm not sure what your taper schedule looks like but if you're feeling good at 4 stay there and continue your taper. My doc hasn't been concerned when my crp is that high even if I am a little symptomatic . Crp numbers can fluctuate quickly and anything can really cause it to go up a little. When it rises to a problem you will probably feel it too. I get bloodwork monthly and have seen it creep up over a few months. At this time the symptoms were creeping up too. Maybe you'll want to stay at 4 mg until the next one - and if good drop to 3? Or by halfs... If you're feeling good keep going! Best wishes.

Christina I tend to agree here... if you feel better, keep going, and your SED rate looks stable and low, a lot lower than mine right now. And your recent good adrenal test, and ability to get out of your wheelchair more, are both auspicious. Obviously, pred has done a huge number on your muscles and it will take awhile to build back the strength in them, so now's a good time to start. I see no problem with reducing the pred as much as you feel comfortable with, knowing that your adrenals are producing the way they are. I don't know much about the CRP, since I don't get that test, but will take others' word that it can fluctuate quickly for various reasons that might not be related to pred reduction. Best to see a doc, of course, but with your difficulty in doing so, you are doing a great job of managing things on your own. More power to you.

[Birdie]

Obviously, pred has done a huge number on your muscles and it will take awhile to build back the strength in them, so now's a good time to start.

It was actually "methylprednisolone" in addition to the normal pred which put me over the edge last March. Before that I was doing very well, even working a bit of overtime, slowly and fatigued but working.

My suggestion is to avoid methylprednisolone like the plague, if you get a prescription for it then question the doctor endlessly before agreeing to take it.

[annekat]

It was actually "methylprednisolone" in addition to the normal pred which put me over the edge last March. Before that I was doing very well, even working a bit of overtime, slowly and fatigued but working.

My suggestion is to avoid methylprednisolone like the plague, if you get a prescription for it then question the doctor endlessly before agreeing to take it. I didn't know the two were that different, and was under the impression that people in the UK and AU were routinely prescribed that. But I may have been wrongly thinking prednisolone (vs predbisone) and METHYLprednisolone were the same thing. Will require a bit of googling for me to discern the differences. I think we call it all "pred" on here and know that some respond differently and more negatively to it than others. I'm not denying or disbelieving what you say, that that particular form of it is or can be particularly damaging. I wonder why they put you on it when you were doing OK with "normal pred".

[Birdie]

I wonder why they put you on it when you were doing OK with "normal pred".

I had an infection that didn't respond to any of the other antibiotics. Methylprednisolone was required with Cefprozil at the dose I was given.

[Green Grass & High Tides]

Here is a study on steroids and c reactive protein. (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2833522/)
One Gram of Solu medrol aka methylprenisolone equates to 1250 mg of Prednisone. I'm told it's easier to use in liquid IV form.

Wegs is a marathon, eventually long term glucocorticoid use takes its toll.
Prednisone can easily cause a glucocorticoid / mineralocorticoid imbalance (http://qjmed.oxfordjournals.org/content/93/6/323).
The HPA Axis Endocrine system gets triggered, aggravating the immune system (http://press.endocrine.org/doi/abs/10.1210/endo.132.3.8382598).
Next thing you know, "Hey, my wegeners seems to be flaring again."
Glucocorticoids may perpetuate wegeners as well as help us survive it.

My current opinion is that, at any dose, steroid side effects should probably be treated. Even if the blood work looks good.
Some medications directly counteract the damage steroids do to the brain.
Propranolol and Alprazolam have some good studies proving efficacy for this.
Hydroxizine can also help. I hate all meds so to my own detriment have avoided these but when it gets bad enough or the pred dose is high enough, I eventually have to accept that it is necessary, sometimes...

Some lifestyle changes counteract the damage steroids do to the brain and other systems.
It takes a concerted effort with good doctors to find the right balance for each person.
I've never met a doctor who volunteered to really think things through with me at a deep level.
So walking in with a chart of daily symptoms always helps keep it concrete and directly related.

I'm now tapered down to 7mg. Subtherapeutic doses (<30mg for me) of glucocorticoids probably aggravate autoimmune disorders long term.
Like the old saying goes, "Beer!. The cause and solution to all my problems."
Pred is vital to wegs treatment but the side effects need to be treated if long term survival is desired.
Tons of people get off prednisone after an initial wegs treatment. but follow the story long enough and often pred shows up again or they die.

Some docs offer a serious regimen to counteract steroid side effects. Doing nothing to counteract the pred is fine for a year long bout with something curable but wegs is a marathon.
A lifetime battle usually. A long term steroid plan from the outset ought to be outlined, probably with a neuroendocrinologist, along with the rheumatologist.
Sometimes we start to recover from the first few rounds of meds and begin thinking, I got this thing licked! but later a flare up happens and bingo back on the meds.
That may just be the way this wegs thing goes but there are things we can do to increase quality of life for ourselves, those with us, and those we can be helpful to, while we can.

My basic long term steroid plan is reduced to 4 simple things I have printed near my computers. This covers all the main things but is a challenge for me to maintain.

1. Restorative Sleep
2. Nutrition
3. Raise Anabolism
4. Reduce Internal and External Stressors

Using toxic paint or eating crappy food are external stressors. Anxiety and depression are internal stressors.
The circadian rhythm is essential to the HPA Axis and how we heal. Restorative sleep at regular times balances the circadian rhythm naturally.
Nutrition is hard since everywhere we go factory farmed chemicals are masterfully marketed as food. But go veggie if you can since other than exercise it's the best lifestyle change we can make.
Raised anabolism means increasing the rate at which our cells replenish themselves. Prednisone is catabolic, cytoxan just sucks in every way, rituxan wipes out b cells. Raising the anabolism helps all of this. For me, this means doing things I don't want to do, when I don't want to do them. Sometimes it's lifting a leg or arm few times a day from a hospital bed but eventually it builds.

Sorry to ramble on. This is the shortened version. It must be a miracle not self restraint that kept me from including dozens of links.

I really think a cure is possible for wegeners and that the prednisone may help point that path out eventually.

[Birdie]

Here is a study on steroids and c reactive protein. (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2833522/)

Sorry to ramble on.

The more you ramble the better the chances of saying something helpful.

Thanks

[whatthewhat]

The more you ramble the better the chances of saying something helpful.

Thanks

o my gosh that made me laugh

[Birdie]

o my gosh that made me laugh

o my gosh are you an eighties girl or just pretending?