Assorted Questions

[Guest guest]

I learn something new from this wonderful group everyday, and I thank everyone

for posting and replying to the group. It is such a help to those of us like me

who are newer to PA and don't quite know what to expect still.

With that, I have a couple questions that I've not been able to find satisfying

answers to.

SED rate and CRP:

What are considered normal values for SED rate and C Reactive Protein, and can

someone explain how the two tests are differnt?

Bloodwork:

I am taking MTX 17.5mg and in 2 weeks hopping up to 20 mg. I also take Lodine

400 mg 2x a day for inflammation, and Prednisone 10mg a day (which I don't feel

the best on, but I'm still dealing with swelling...). I know that my rheumy will

draw bloodwork regularly to check on things. My question is, how often should I

expect to have bloodwork done? I just had it done at my visit last week, which

was about 8 weeks after beginning treatment. What bloodwork should I expect to

be pulled and what do these tests tell? I belive I had a CBC, metabolic panel,

SED rate, and CRP, and something else. I'm curious to know what the range of

normal on these labs should be.

Illness:

From what I have read, MTX and even Prednisone can lower your ability to fight

infection. Have you guys found this is the case? At what point during an illness

should you call your doctor and be checked out? Just at when there is fever, or

at the sign of any illness? The reason I ask is that right after starting the

MTX in November, I got a respiratory infection and did a round of antibiotics,

but it took a good 4 more weeks for the residual cough to clear. I'm well about

2 weeks and then pick up an awful cold with the stuffy and runny nose, aches,

and an even worse, looser, cough than I had with the respiratory infection.

Other than some intermittent body aches and fatigue (which could be due to the

MTX increase 2 days ago - which coincidentally, I came down with the cold

yesterday after the MTX increase, and the respiratory infection the day after

beginning MTX...) - - other than that, I don't feel that bad. Hope that makes

sense!

Thanks everyone!

[Guest guest]

Sed rate normal is 15 or below. Mine was 60 when I was first diagnosed, which I

was told was not all that terrible. Can't remember about C Reative Protein but

there is a great website on line that gives you all that information. I think

it's lab tests on-line or something like that; but I found it by just typiing in

the name of a test and it turned up. Tells you what the test measures and how

to interpret the results.

I cannot take any kind of NSAID because of gastro problems; and my doctor (who

seems to prefer going straight to the big gun meds) put me on Enbrel right away;

and my swelling went down considerably quite literally over night. I couldn't

believe the difference. However, it took 2-3 months for the pain to subside

noticeably. I don't think MTX works as quickly from what I read from everyone.

You should be getting relief soon, though, given the combination you're on.

While there is some controversy about it, CRP is thought to be a potential

indicator of heart disease because it may contribute to inflammation of the

blood vessels.

Joanna Hoelscher

630-833-7361

[Guest guest]

Are you going to a rheummy for the predisonne? I was on it via internist for

several years and it had bad effects for me- when I finally went to a rheummy I

was put on embrel- and am now on remicade along with the methotrexate, and mobic

and it has made a world of difference. I developed a buffalo hump from the

cortizonne and a weight gain, and it compromised my immune system. I am now

taking gamma gobulin iv's every three weeks because I do not have an immune

system-I wish I had gone to the rheummy first.

Hang in there, and cherish the great days which I am having many:)

[Guest guest]

Yes, my rheumy has prescribed the prednisone, along with the MTX and Lodine.

The goal is to get me off the prednisone as soon as possible. I actually

needed it really badly in the beginning and opted to take it, and even had

to up the dose twice. I've managed to get it back down to 10 mg a day, which

while not perfect for how I'd *like* to feel, this is as low as I can

manage it right now. I also got some samples of Actonel to help protect me

from prednisone-induced osteoporosis. My rheumy and I don't want to go

straight for the biologics right off the bat (I was just dx about 3 months

ago). I know that MTX has been around for about 40 years and that it is the

gold standard " to which all the new drugs are tested. Plus, I'm a huge

chicken on giving myself an injection. LOL. I can handle an infusion - that

just means I can take a nap while I'm there, but if I had to give myself a

shot... I'm a big needle weenie....

I know that sounds terrible!

[Guest guest]

, I'll leave your first questions for someone else and only

address the last, which is tricky at best.

First off, a particular concern with most immuno-suppressant drugs is

for lung infections. So the case you describe, in my opinion,

warrants at least a call to your rheumy pretty quickly, especially

since it started concurrently with your beginning MTX and again with

the increase in dose. Something might be going on there that the

rheumy should know about.

In general, the reason infections are a big concern is that we are

taking immuno-suppressant drugs, which lower our body's ability to

fight infection. An infection can run rampant very quickly in an

immune-compromised person. Within 24 hours you can have a life-

threatening situation.

That being said, you must remember that the problem is that our

bodies are a little TOO GOOD at fighting infections in the first

place and in fact mistake normal things for infection. That's what

makes our immune system attack our skin and joints, causing the kind

of inflammation in normal tissue that you would normally see only in

a wound being protected by the immune system or an infected organ

being protected by the immune system.

So, even with the immuno-suppressant drugs you MIGHT (I'm being

careful here) still have an overactive immune system and not find

yourself any more susceptible to infection than the average person

with a normal immune system. In the 18 months since my diagnosis,

I've had no colds, no flu, in spite of being around a bunch of small

children with snotty noses and various bugs all the time. I have had

fewer infections since I developed this disease than ever before,

even in spite of taking these drugs.

This, of course, will vary from person to person, depending on how

crazy-out-of-control your immune system is to begin with and what

drug you're taking and what dose of that drug and how effectively

it's working for you and what mechanism that drug uses to suppress

the immune system and what mechanism a particular infection or

disease uses to attack you.

The same MIGHT be true of your body's ability to fight off an

infection. You might still have an elevated immune response and

might be able to fight off the infection effectively, perhaps even

more effectively and more quickly than your non-PA family members.

The one illness I've had was a 24-hour bug that caused vomiting and

diarrhea in the rest of my family but only gave me a headache and

high fever for a few hours. I would have called the doctor once

morning came, but by then it was over. I was much less ill and for a

shorter time than everyone else - in my opinion because of

my " killer " immune system, which nothing seems to get past!

The safest course is to report any sign of infection to your doctor

immediately, particularly if you run a fever. That is, in fact, what

the doctor will TELL you to do, and what the drug warning label will

tell you to do. And, by the way, what I am myself advising everyone

to do!

In reality, though, I myself don't take the safest course. The

reason I don't is that I know that if I report an illness or

infection, my doctor is likely to take me off my Humira right away.

And then I am likely to have a big flare, and when I resume the

Humira it might not work for me as effectively as before, if at all.

So, when I get a little sinusitis, I don't call the doctor. I just

watch it very carefully. I know I am taking a risk. But it's a

calculated risk I feel comfortable with. I'm very cautious. When I

began to run the fever with that one bug I had, I told my husband to

watch for any signs on delirium or confusion and get me to an

emergency room right away if I began to get any sicker. I probably

wouldn't report what appeared to be a common cold, either. (I never

have chest colds, only head colds.)

We need to all be prudent and safe in making these decisions.

my best regards,

sherry z

[Guest guest]

Hello all,

Have been reading this group for a while now. Wrote to you all early on (last

summer 2007) but don't think it was received/processed on your end.

Was dx w/ PA August 2003. Had first symptoms after I broke my leg in Fall

1999. I am 56 yrs. old now, nothing except scalp Psor. before that time. Started

on Mtx 10/2003. Had pneumonia twice within the first year. Went off the Mtx,

then back on after the pneumonia was cleared up (bacterial both times).

The third time I got pneumonia while taking mtx (winter 2005), my lung doc ran

extra tests and discovered I had developed sarcoidoisis in the right lung. This

made it not possible for me to use mtx anylonger.

Have taken prednisone for most of the past 5 years. Doseage levels have

varied, have weaned off of it for 2-3 months at a time. Have now been informed

that a constant low level ( 5- 10 mg/day) will help keep the lung business under

control.

Embrel had no discernable positive effect. Tried it for 7 months, no relief.

Currently take a fairly high amount of vicodan each day, and have been injecting

Humira every two weeks since last August. Humira seems to be helping quite a

bit, when in conjunction with the prednisone low dose and the steady vicodan.

What else helps is swimming in a warm water pool 4-6 times a week for 1/2 hour

each time. At first I could hardly move in the water -- it has taken three

months to build up carefully. I am actually pain free for at least two hours

after each swimming session.

I also take fish oil capsules 3x day and 4000 units of vitamin C. Please check

your lungs with a pulmonologist if you keep getting bronchitis or pneumonia. The

folks who moniter my stuff at the U of Michigan Hospitals worked hard to figure

out what was going on with my lungs and those recurrent infections. I have heard

from my Rheumy that this cross-over between scarcoidosis and PA is not all that

unusual.

Hope this is helpful. Thank you so much for having this information board.

Hurwitz

[Guest guest]

, ask for the self-injecting pen. You never see the needle,

and if you ice the site down for about 3 minutes with the ice pack

they provide you will hardly feel it. It was not nearly so bad as I

had imagined it would be.

regards,

sherry z

[Guest guest]

: just don't be so scared of injections that you avoid taking a drug

that could really help you. It took me two hours to get up enough courage to do

the first one (enbrel) but thanks to advice from this group, I used ice for a

few minutes first and then gave it in the abdomen (no muscle there so it hurts

less.) As long as inject it slowly, it really does not hurt at all. I was

amazed . . . . . .

Joanna Hoelscher

630-833-7361

[Guest guest]

Sherry,

My doctor prescribed the self-injecting pen for me. Enbrel sent me 4

free to get me started, then I found out that my insurance would not

cover the pen, because it costs more than the syringe. I was so much

more nervous about using the syringe, but I have found (at least,

for me) that the pen hurts alot more than the syringe!

Take care,

[Guest guest]

- I'm a big needle weeny too but after watching my 10 yr

old inject himself with the mtx I think that I could do it too. The

needle is very small and the benefits are well worth it! (for us

anyways!)

and Grant/10,PsA/Uveitis

[Guest guest]

Yes, , that's what I've heard. I think it's because the pen

injects it quickly but with the syringe you can go more slowly. I'm

just assuming, though, that someone who has a needle phobia would do

better with the pen 'cause you can't see the needle - unless you

deliberately look for it, anyway.

best regards,

sherry z

[Guest guest]

Sherry, they should also have told you that it might help to let it

get to room temp before injecting and/or ice the injection site before

giving yourself your shot. Both are supposed to cause less discomfort.

I also found that it hurt more if I tried to put it in too fast -- esp

if cold!

Good Luck!

Cheryl M.