Re: PA, oregano oil, other management tips?

[Guest guest]

Bridie - I can understand your desire to use OTC treatments, but you

mention that your husband has " deformed toes " . The only thing that

can stop or slow down this irreversible damage is disease-modifying

anti-rheumatic drugs. The same thing that happened to his toes can

happen to his knees, hips, even his spine, if left improperly

treated. Once the damage is done, it cannot be fixed. Is your

husband under the care of a rheumatologist? If he is already

suffering joint damage, he really should be considering taking some

meds that can truly slow or stop such damage. Anti-inflammatory

medications and over-the-counter meds can help with pain and other

symptoms but cannot stop this kind of joint destruction.

best regards,

sherry z

[Guest guest]

Hi Birdie,

I'm all for ANY alternative approach, Herbal remedy or OTC med that

can help relieve symptoms, BUT you say, " my husband has PA, stubby,

deformed toes and nails, sausage fingers, psoriasis that has a couple

of permanent spots and other breakout sites, and joint pain that

moves around. " That seems to indicate that whatever he is using does

NOT completely resolve his symptoms and that he may already have some

joint damage. I strongly urge him yo use some conventional therapy

like Methotrexate to stop the progression of his disease. Other

approaches can be used in conjunction with it, but may not be

necessary. I know PA is not curable, and the thought of living life

with some drugs is quite daunting, but the the thought of living life

pain filled, with swollen joints and distorted fingers and toes is

much more un-palpable.

Stay Well,

[Guest guest]

Thanks, Sherry.

We are in the early stages of dealing with rheumatologists... so far

just Naproxen NSAID for the pain, first follow-up next month. It

takes time for the gears to engage, it seems. Your and the group's

collective experiences and wisdom are really helpful. We will prompt

the docs on medications to arrest joint damage if they don't bring it

up themselves next time.

Thanks again,

Bridie

[Guest guest]

Thanks Sherry for sending me the info on this group!

related to pain management-at this point my rheumatologist has told

me to take naproxen (500mg) for 12 weeks and chart how I feel. I took

it for two days, and while my pain and inflamation were reduced I

started to have horrible stomach cramps. Aleve doesn't bother my

stomach like that, do any of you just stick with Aleve or Ibruprofin?

Should I call the doctor? All he is offering at this point is a shot

in my knee which is the worst joint at this time but somehow that

doesn't seem like it will be helpful overall. Anyway, pleas let me

know what you think.

Thanks,

Cheryl aka FAB

[Guest guest]

Cheryl: It doesn't seem as though your doctor is treating this as an

auto-immune disease. Is he unsure of his diagnosis?

If you're having stomach cramps from naproxen, you should definitely call your

doctor. NSAIDs can cause ulcers and stomach pain is an indicator that you may

not be able to tolerate them - at least this particular one. Additionally, I

know many people who have gotten " shots " in various joints to help relieve pain

- usually it's cortisone. For some it helps for a time but for many there is

little if any relief. I myself have had them and they have not helped much at

all.

You need to figure out what's going on with this doctor and - if necessary -

seek another one. Ask around and get recommendations, if possible.

Joanna Hoelscher

[Guest guest]

Welcome, Cheryl! I also started out by trying just naproxen for a

couple of months. The doctors are ordered to do that by the insurance

companies, according to my rheumy. After that, she tried me on

methotrexate, which was working but it began to affect my liver so she

took me off it. Now I take Humira, which has helped both the P on my

palms and my joint pain very much. What a relief!

If the naproxen is giving you bad stomach cramps, call your rheumy, ask

to speak to the nurse and report that. Don't wait until your

appointment and don't just stop taking it without letting your rheumy

know. I find that if we will report things like this by phone, they

are able to speed up the process of satisfying the insurance companies

that they have tried the steps that lead to the drugs that will lead to

some real relief. Otherwise, you will waste months of pain just to get

to same meds you will eventually find to work for you.

Naproxen is the same drug as Aleve. All those NSAIDs, though, can be

hard on the stomach. But they are really helpful in reducing the

inflammation that causes our pain. And you will have to experiment

with various ones until you find one that doesn't tear up your

stomach. Again, it's best to call and not waste time waiting for your

next appointment. Your rheumy will likely try another NSAID for you.

And possibly go ahead and start you on one of the DMARDs.

best regards,

sherry z

[Guest guest]

Hi Joanna,

Thanks for the tip. He is sure of the diagnosis and I was on

Prednisone first, it worked great while I was taking it, but within

days of stopping I flared up again. He says he wants to try NSAIDs

before moving on to anything else, and he's hesitant to use

methotrexate because I won't go on the pill (it gives me severe

migraines). He doesn't want to try Enbrel or Humira before

methotrexate so we're at a stalemate.

Again, Thanks!

" parkeruk1 " <parkeruk1@...>

[Guest guest]

Sherry,

That's really helpful to know, I had no idea this might be an

insurance issue (duh I guess). I will call on Tuesday, I'm always

hesitant to get in touch-I don't know why, I suppose I'm stubborn!

The doctor is very nice, and he's supposed to be one of the best in

our area and I'm sure he won't mind if I make a pain of myself for a

while.

Again, thank you so much for introducing me to this group, I feel

better already knowing that other's experience the same things.

Cheryl

[Guest guest]

Cheryl, that's the way it is in the U.S. I think our friends in the UK

have a lot harder time getting the best drugs. Still, I would think

that the more honestly and persistently you report your pain and the

fact that the pain level is seriously interfering with your

functioning, the better your chances of getting some good treatment.

best regards,

sherry z

[Guest guest]

His decision about going on MTX first may be driven by his knowledge of

insurance company procedures. Most will require that you try MTX before going

on the biologics (because of the expense - MTX is cheap; the biologics are VERY

expensive.) A good doctor knows how to circumvent this, however, and make the

case, for the biologics; mine did - but it takes some extra work on their part

and I think it's easier just to try MTX first. If they want you on a biologic,

they have to make the case medically that you are bad enough to skip the MTX

(and there's nothing you can do - they have to do it all). In my instance, I

understand that when they sent in x-rays they'd taken, that did the trick. But

that was on the third appeal.

I just went thru this with another drug: my internist (and my rheumy) both

think I have fibromyalgia in addition to PA, though two physical therapists say

no because my nerve endings are not sensitive enough for me to have it.

None-the-less, my internist wanted me to try Lyrica and the insurance company

first said no (again, they want you to try something cheaper first). I let it

go since I'm not sure I have it - didn't even contact the doctor to see if she

was going to follow up; but lo and behold, about ten days later I got a call

from the pharmacy saying my rx was ready. So, I really don't think it's all

that hard.

Good luck with whatever you do. Enbrel has worked wonders for me (though all of

the DMARDs take a while) but, as I said, MTX has worked for many and the side

effects are not serious and are largely irreversible. Joanna Hoelscher