update

[Guest guest]

> ..... Chose Sulfasalazine over MTX because my wife and I

> > decided to have kids after 4 years of marriage.

>

> Sulfasalazine can cause infertility in men. Check this with your

> doctor, the information is in the standard drug reference books.

>

> Best regards , Greenly

>

>

> [Moderator's note: My 1998 PDR says that infertility has " been described in

men treated with sulfasalazine. " Note that it doesn't say what percentage of men

are affected or how much their sperm count was reduced. Your doctor should be

able to take a sperm count to see whether or not your sperm count is affected,

and if so by how much. In any case, the effect is only temporary and can be

reversed by stopping the medication. Ron]

Thanks, Ron- yes, I should have said the effect is definitely

reversible. I took sulfasalazine for about 5 years, then stopped it

and within six months we were on our way to a fine baby boy! --

[Guest guest]

Does everyone know what " bee stings " are? This is new to me.

I'm at that point now where my digestive system is having a really hard

time with the Biaxin/Flagyl/Plaquinel combo that I'm taking, so I've

taken a few days off and I too feel so much better I've moved into

existential crisis mode, which is my way of saying that I don't know

what to do next. I think I'll follow my LLMD's advice and go back on a

lower dose of the abx, and hope I won't need IV, but the really good

news is that I just got Kaiser to pay for a two week course of Biaxin,

even though they didn't prescribe. Is that the silver lining in my

cloud?

Hearing from all of you helps me so much, since these decisions are so

important. I feel so alone with these decisions, and then someone puts

up a story just like mine and I am buoyed up a bit. And many of you

have said YES there is life after Lyme (or during, I guess)

Leana

[Guest guest]

Thanx for the update . I plan to follow up on the sting

protocol, it's just hard to pin down the couple in NYC--10 blocks

from me--but they did email me--and I'll just have to really be

persistent. I hope they will try a sample sting on me. It seems

really variable who would respond but as you say it works for some

and at least helps some others.

[Guest guest]

Hi Mike: I remember you said that you don't take vitamin C because

it is lyme promoting or something. Being stung with bees depletes

the adrenals of vitamin C as shown in animal studies, so you might

consider taking at least a little. I take 2 to 3 grams a day. It is

necessary to make hormones. I haven't checked out your links on why

not to take vitamin C yet, but just thought that I'd mention that.

E.

>Hello Leana,

>Stung self last night X 12 stings(6 /deltoid); two days prior, stung

>back of head at occipital nuchal(neck) line. Live Honey Bees.

>Purpose: stung the Borrelia-tude outta me.

[Guest guest]

Yeah, well I got a few hours of functioning out of todays sting

session. Otherwise it would've been bad movies all day.

E.

>Thanx for the update . I plan to follow up on the sting

>protocol, it's just hard to pin down the couple in NYC--10 blocks

>from me--but they did email me--and I'll just have to really be

>persistent. I hope they will try a sample sting on me. It seems

>really variable who would respond but as you say it works for some

>and at least helps some others.

[Guest guest]

Well from my own personal expeience after being on combo for a month I

could care less if I even took a shower or washed my hair let alone if

it fell out. I got deathly sick on combo so I stopped treatment at 4

months. My hair started to fall out and it never grew back but that is

just me I am sure most people who lose some of their hair get it back. I

have very thin fine hair so what I lost stayed gone I keep my hair short

and don't style mine as it is fine and nothing I have ever done has made

it look any better *lol*. I also experienced bleeding gums and after a

couple years off combo my gums still bleed really bad I never had a

problem with that until I did the combo.

I now am going to go to a hepatoligst at the University of Chicago just

to see how my liver is. I don't plan on doing the combo ever again due

to the sides but then I don't need to worry about that anyway since the

only insurance I have is Medicare. I hope you do better then I did on

the treatment I suppose some of us just can't tolerate that stuff .

Pamm

[Guest guest]

What was it again Ron that she was having done... brain fog here....

[Ed. Note: Neurosurgery on her upper spine. This is very serious stuff - not

like a knee operation or something where the worst thing that can happen is that

you loose a leg. That's why I wanted to keep tabs on her. The nurse wouldn't

give me any details because I'm not family, but did say she was doing well.

described the problem in her post at:

/message/25279

I looked up the location of the C4-5 vertebrae, and it appears to be right at

the base of the neck where the spinal column attaches to the skull. If I

understand her description of the problem correctly (and maybe I don't), the

surgeons have been cutting and sawing away in and around her upper spinal column

with sharp instruments all afternoon (or however long the operation took). If

they screwed up, she could potentially be paralyzed from the neck down for the

rest of her life. I wanted to ask the nurse if could wiggle her toes

and fingers, but as I said they wouldn't give out any details to anyone except

family. Ron]

[ ] Update

> I just spoke with 's nurse (the nurse's name is " Candy " ). She

> said that is well and is doing fine. Apparently they have

> moved to a different room, because the previous room number

> I was given was 8151, but Candy said is now in room 8125 Bed

> 1, and that she doesn't know what her telephone number in that room

> is as yet. The full address if anyone wants to send flowers, etc.,

> would be:

>

> Presbyterian Hospital

> 8 Hudson North, Room 125, Bed 1

> 177 Fort Washington Avenue

> New York, NY 10032

>

> The main telephone number there is: (212) 305-2500, Options 2->1

>

> -- Ron

>

>

>

> P.S.

> This is the third time I've tried posting this message, because

seems to

> be having problems this evening, so please excuse me if you get duplicates

of it.

>

[Guest guest]

Ron,

That worries me. I sure hope she is OK. It's unbelievable that you can't get

through. Hopefully, someone is near who can check on her.

Robin

" ron_s_dotson <PA@...> " <PA@...> wrote:Yesterday I called the

main telephone number of the New York

Presbyterian Hospital at (212) 305-2500 and was given yet another

telephone number for

If anyone lives in or near telephone area code " 212 " , would you mind

calling the main number of the New York Presbyterian Hospital at

(212) 305-2500 and see if you can get a straight answer from them

about 's status or telephone extension? Her full name

is " A. Stack " and the last I heard, she was in " 8 Hudson

North, Room 125, Bed 1 "

-- Ron

[Guest guest]

> I asked him about Remicade and he said that it has more

> side effects than Enbrel and I would still have to take mtx.

B.S. I didn't have any side effects whatsoever during the three or

four months I was on Remicade, and I took Arava (which also didn't

have any adverse side effects on me except for some tinnitus) along

with the Remicade.

> So, I asked him about Humira, since Ron is doing so well on it.

> He told me that it isn't approved for PA. Is this true?

Yes, it's true.

See http://www.spondylitis.org/press_detail.asp?beta=177

*HOWEVER*, any rheumatologist worth his or her salt can get it

approved for you if he/she wants to. The only thing my rheumy needed

to do was to put down on the prior authorization form to my health

insurance company that all other treatments had failed. If that had

failed, she told me she would tell them I have RA. I should point out

that the problem isn't with obtaining Humira because " Off-label "

prescriptions for drugs are very common and your doctor could write

you a prescription for Humira for a hangnail if he wanted to and the

pharmacy would fill the prescription. The only problem is with

getting your medical insurer to pay for it, and for that you need

prior authorization. Whether or not you need prior authorization for

a drug is strictly up to your medical insurance company. For example,

Blue Cross requires prior authorization for virtually ALL expensive

drugs, including Enbrel - even though Enbrel is FDA approved for PA.

In my opinion, it's EXTREMELY important that you have a rheumy who

is " on your side " and isn't concerned about the details of what it

takes to get you the treatment you need. I pay a high premium for the

most expensive health insurance plan I can get, but it's well worth

it to me because among other things, I can take charge of my own

condition and see any doctor I want without any referral whatsoever.

It's too bad you aren't moving to Southern California , because

I could give you the name of an excellent rheumy.

>

> I asked my doctor about working and he said that he doesn't

> think I can work full time but he will not put me on disability.

Absolutely DISGUSTING!!! Do yourself a favor , and try your

very best to find a rheumatologist who will work with you rather than

against you.

-- Ron

[Guest guest]

I suggest you change your rhemmie. Regards .

[Guest guest]

Ron,

I had asked about Arava rather than MTX (since I already know that MTX didn't

work on me and only made me feel worse) and he told me that Arava has more side

effects and is harder on the body.

Do you know if they plan to approve Humira for PA? Would I have to try the

MTX/Enbrel combo first to show that all other treatments had failed or would the

fact that I tried mtx alone and enbrel alone be sufficient? I really don't

think this doc is willing to jump hoops to get me on Humira though. I know for

sure he won't lie. He is more concerned about his license. I really hate to

change docs again since I just changed to this one 2 months ago.

I had asked him if he thought I might have something else wrong with me since I

have some other symptoms and he said that he didn't want to add another

diagnosis to my list. I just feel like they are missing something. Even the

labs he just ordered are of my SED rate only. I think he should check to make

sure everything else is okay. The only reason I am getting the bone density

scan is because I asked for it and the MRI because my GP asked for it.

I just don't understand why I am having such a hard time finding a doctor that

will work with me. This doc is better than the other 3 I had but I feel like he

is pushing the Enbrel/mtx thing too hard and not giving me any other options. I

think I have a say in what meds I take since it is my body. If I have physical

proof that the Enbrel isn't working then why stay on it? I also don't

understand why I have to wait another month before changing my treatment plan.

This last visit all he did was tell me I had bone erosion and for me to come in

a month and well add mtx if I am not doing better. If I have damage we should

do something now instead of waiting for more damage. And, he keeps pushing the

steroid injections issue when my GP say's not to get anymore.

I am assuming you have a POP type of ins. plan where you can pick whichever doc

you want to see (in your plan). We had one of those before we got this stupid

HMO. The only problem with that is the all the percentages you have to pay add

up (and sometimes they have pre-existing clauses).

I have always wanted to move to S. Cal. I had a friend from San Diego and he

used to tell me how cool it was. I know you get really great weather (here it

is constantly changing). Maybe I can convince my husband to move. I am so

bored with Texas now...

thanks,

[ ] Re: Update

> I asked him about Remicade and he said that it has more

> side effects than Enbrel and I would still have to take mtx.

B.S. I didn't have any side effects whatsoever during the three or

four months I was on Remicade, and I took Arava (which also didn't

have any adverse side effects on me except for some tinnitus) along

with the Remicade.

> So, I asked him about Humira, since Ron is doing so well on it.

> He told me that it isn't approved for PA. Is this true?

Yes, it's true.

See http://www.spondylitis.org/press_detail.asp?beta=177

*HOWEVER*, any rheumatologist worth his or her salt can get it

approved for you if he/she wants to. The only thing my rheumy needed

to do was to put down on the prior authorization form to my health

insurance company that all other treatments had failed. If that had

failed, she told me she would tell them I have RA. I should point out

that the problem isn't with obtaining Humira because " Off-label "

prescriptions for drugs are very common and your doctor could write

you a prescription for Humira for a hangnail if he wanted to and the

pharmacy would fill the prescription. The only problem is with

getting your medical insurer to pay for it, and for that you need

prior authorization. Whether or not you need prior authorization for

a drug is strictly up to your medical insurance company. For example,

Blue Cross requires prior authorization for virtually ALL expensive

drugs, including Enbrel - even though Enbrel is FDA approved for PA.

In my opinion, it's EXTREMELY important that you have a rheumy who

is " on your side " and isn't concerned about the details of what it

takes to get you the treatment you need. I pay a high premium for the

most expensive health insurance plan I can get, but it's well worth

it to me because among other things, I can take charge of my own

condition and see any doctor I want without any referral whatsoever.

It's too bad you aren't moving to Southern California , because

I could give you the name of an excellent rheumy.

>

> I asked my doctor about working and he said that he doesn't

> think I can work full time but he will not put me on disability.

Absolutely DISGUSTING!!! Do yourself a favor , and try your

very best to find a rheumatologist who will work with you rather than

against you.

-- Ron

[Guest guest]

> Ron,

>

> I had asked about Arava rather than MTX (since I already know

> that MTX didn't work on me and only made me feel worse) and he

> told me that Arava has more side effects and is harder on the

> body.

Totally FALSE - in my case at least. MTX caused hair loss, nausea,

and excessive fatigue, but the only side effect I've noticed from

Arava is tinnitus. Arava has gotten some bad press because 11 people

who were on it died, and in fact there is a group of people who

obviously don't have arthritis and who don't need Arava that are

trying to get Arava banned. I did a little research on it myself

however, and found that more than 1.5 MILLION people have used (or

are using) Arava with no problems whatsoever, so I'm not concerned in

the least. The percentage of people who die from lightening strikes

is far greater than those who die from Arava. I still have to get a

blood text every six weeks for liver enzymes just like I did on MTX,

but there haven't been any problems in the year or so I've been

taking Arava.

>

> Do you know if they plan to approve Humira for PA?

>

Yes, they are. Abbott labs are in Phase III trials for both psoriasis

and psoriatic-arthritis. Please see:

http://snurl.com/1bxr

and

http://snurl.com/1bxq

> Would I have

> to try the MTX/Enbrel combo first to show that all other

> treatments had failed or would the fact that I tried mtx alone

> and enbrel alone be sufficient?

That really depends upon your health insurance. Arava is quite a bit

more expensive than MTX. It's all the same $25 co-pay for me, but the

first time I filled a prescription for Arava, the pharmacist said I

was very lucky because the cost (to Blue-Cross) of the one month

prescription was $400!

> I just don't understand why I am having such a hard time finding

> a doctor that will work with me. This doc is better than the

> other 3 I had but I feel like he is pushing the Enbrel/mtx thing

> too hard and not giving me any other options. I think I have a

> say in what meds I take since it is my body. If I have physical

> proof that the Enbrel isn't working then why stay on it? I also

> don't understand why I have to wait another month before

> changing my treatment plan. This last visit all he did was tell

> me I had bone erosion and for me to come in a month and well add

> mtx if I am not doing better. If I have damage we should do

> something now instead of waiting for more damage. And, he keeps

> pushing the steroid injections issue when my GP say's not to get

> anymore.

Once you've escalated to Enbrel/MTX, I personally don't know of too

many options that are left. If I recall correctly, my rheumy told me

that Methotrexate in particular takes at least six-weeks to have any

noticeable effect, and Arava has such a long half-life that it's

necessary to start on a " loading-dose " and then drastically decrease

the amount taken following the loading dose (ie; if you continued on

the dosage prescribed for the first three weeks of the loading-dose

period, you would overdose because the body eliminates Arava from the

system very slowly). Without starting on a loading-dose, it would

take about six months to build up enough Arava in the body to do any

good. Enbrel usually works pretty quickly in most cases (according to

my dermatologist) as does Remicade, but in long standing recalcitrant

cases, it too can take time to have an effect. In my case, I was on

Remicade and then Humira for several months (total) before my

psoriasis finally cleared and my PA symptoms decreased noticeably. My

point is that the doctor may think you need more time to see whether

or not the Enbrel/MTX is going to work for you, and he may be right

(I've forgotten how long you said you had been on that combination).

The on-line PDR at

http://www.rxlist.com/cgi/generic/etanercept_cp.htm says: " Among

patients receiving ENBREL, the clinical responses generally appeared

within 1 to 2 weeks after initiation of therapy and nearly always

occurred by 3 months. "

By the way, I noticed an interesting contradiction with respect to

Enbrel. Although the Enbrel web site says that Enbrel is the " Only

anti-TNF treatment in its class that can be used alone " (ie; without

MTX to prevent the formation of antibodies against it),

http://www.rxlist.com/cgi/generic/etanercept_wcp.htm says under

the " Autoantibody Formation " paragraph that: " Treatment with ENBREL

may result in the formation of autoimmune antibodies. "

>

> I am assuming you have a POP type of ins. plan where you can

> pick whichever doc you want to see (in your plan). We had one

> of those before we got this stupid HMO. The only problem with

> that is the all the percentages you have to pay add up (and

> sometimes they have pre-existing clauses).

Yes, I have what Blue-Cross calls a " Participating Provider

Organization " (PPO) plan. They pay 80% of medical fees for doctors

who participate in my particular Blue-Cross plan, but only 50% of the

charges for doctors who aren't " Participating Providers. " Only rarely

do I run across a doctor who is not a " Blue-Cross Participating

Provider. " Those who are participating providers are contractually

restricted by what they can charge for various procedures to what

Blue-Cross deems acceptable, so although my co-pay of 20% may seem

like a lot, in fact it's usually around $10 for a regular office

visit. What happens is that around 30% of the doctor's charges are

disallowed by Blue-Cross, and then Blue-Cross pays 80% of the

remaining " allowable " fees and I am only obligated to pay 20% of the

allowed fees, so it usually doesn't amount to much.

As luck would have it, my present rheumy is NOT a Blue-Cross

Participating Provider, and in fact I admire her for having the

courage to stand up against a behemoth like Blue-Cross. To make

things easier for me financially, she provides a substantial discount

to me on her net (after Blue-Cross payment) charges which reduces my

actual out-of-pocket expenses to roughly what it would cost me if she

*were* a Blue-Cross provider (or even less in some cases). I've had

only two doctors who weren't Blue-Cross providers, and they both

offered " courtesy " discounts to Blue-Cross patients. If it weren't

for their discounts I couldn't afford to go to non Blue-Cross

doctors.

>

> I have always wanted to move to S. Cal. I had a friend from San

> Diego and he used to tell me how cool it was. I know you get

> really great weather (here it is constantly changing). Maybe I

> can convince my husband to move. I am so bored with Texas

> now...

Actually, I think I'd love it if the weather were a little more

unpredictable. Except for some rain in the wintertime, every day is

pretty much like every other day, so the weather is very boring here.

San Diego is nice, but unfortunately I live North-West of Los Angeles

(in the foothills above Glendale), and Los Angeles doesn't have much

to recommend it (traffic, smog, congestion). I enjoyed living near

the beach in Orange County when I was younger and renting, but homes

near the beach are prohibitively expensive to buy. I've always

thought I would love to live further North where it rains enough to

keep everything green, but I'm afraid my PA wouldn't like it. :-(

-- Ron

[Guest guest]

In a message dated 5/11/2003 12:35:04 AM Eastern Daylight Time,

leslieiansa@... writes:

> I just don't understand why I am having such a hard time finding a doctor

> that will work with me. This doc is better than the other 3 I had but I

> feel like he is pushing the Enbrel/mtx thing too hard and not giving me any

> other options.

Hi ,

My computer crashed on Thursday and just got back online now. I know you

have an HMO but you can still choose what GP you would like to keep as

primary, can't you? It is really hard to find a doctor that will be

compassionate, listen to what you are saying and be well-knowledged as well.

Believe, me I am in the medical profession and a few credits away from my RN

and have met many doctors that I thought were idiots. When I feel I know

more then the doctor, then that is a problem on the doctor's end. What

happened with your cat scan. Have you found out anything? Also, about what

you said about your mother not understanding, I have found that out with a

lot of people in my family. Hang in there.

Janet

[Guest guest]

Good news, I saw my rheumy yesterday. I told him that I couldn't wait a month

to figure out what we were going to do in my treatment plan b/c I was in too

much pain. He gave me a depo-medrol pack and insisted that we should wait until

I get the results from my MRI b/c that will show if it is the PA that is active

(and where) or if most of my pain is associated with all my trigger points and

fibro (which I still need phys. therapy for when I get the money). I did tell

him that I will not try the MTX/Enbrel combo b/c all of my damage occurred while

on Enbrel and I have never been pain free on Enbrel. I don't see how MTX can

help since I was on that prior to Enbrel (got up to 15mg) and it never helped.

All it did was make me sick more often, nauseas and of course added to the

fatigue (for a narcoleptic very bad). He mentioned Humira (gee, I mentioned it

my last visit and he changed the subject) but said he doubted my insurance co.

would approve it. He had also doubted they would approve the MRI, which they

did with no problem. I told him about it being used off label and he said we

will give it a try. He still wants to wait for the results of the MRI and said

that he will send me to a pain clinic to see about getting the steroid

injections in the SI joint. How long can the injections be expected to last?

How long do the nerve blocks last?

On the work thing - I found a part time job working only 4.5 hrs a day (sitting

at a computer). I am going to give it a try since my husband told me that I

either need to work or get on disability. Since my doc won't help me get on

disability I really don't have a choice. I figure if I give it a try and I do

fine then great. If I get worse then my doc might be willing to help. I am

keeping my fingers crossed that the Humira will help. Ron, do you mind telling

me how long it took for you to start noticing an improvement? I know it took me

3 months to start feeling better on the Enbrel and even then I wasn't that

great.

Thanks,

[Guest guest]

> Ron, do you mind telling me how long it took for you

> to start noticing an improvement? I know it took me

> 3 months to start feeling better on the Enbrel and even

> then I wasn't that great.

>

> Thanks,

>

>

Hi ,

Good for you for being more assertive with your rheumy! As I

mentioned before, I first started on Remicade and then switched to

Humira later because of costs (Humira is much cheaper for me because

of my particular medical insurance plan). When I was on Remicade, I

would feel better immediately following the Remicade infusions, but

it would wear off after only a few days and long before my next

scheduled Remicade infusion. With Humira I tend to sleep a lot for

the first couple of days after an injection, but it's a " good " kind

of tiredness rather than the normal fatigue caused by arthritis

inflammation.

In any case, to answer your question I first started noticing

improvements to my psoriasis fairly soon after starting Remicade but

as it turns out I was thwarting the improvement by continually

scraping off the psoriasis scales (I posted a message about this

previously). It took probably around four or five months before I

noticed any distinct and undeniable changes to my Ps and PA. It's

something that sort of " crept up " on me rather than bringing instant

relief - although I've read that it does bring instant relief in some

cases. The first thing I noticed was that the new growth on my

fingernails and toenails wasn't coming out pitted and the nail bed

stopped getting reddish underneath due to inflammation. At about that

same time I also realized that my left wrist was no longer aching and

that I had more flexibility and less pain in my other joints. My left

wrist has always ached to some extent as far back as I can remember,

but it isn't normally severe so I've always taken it for granted and

gotten used to it as being " normal. " For that reason it's the only

reliable indicator of PA inflammation - because other symptoms come

and go. I still have some pain in my hands (thumb joints in

particular) whenever I try to grip anything, and of course I'll

always have the permanent joint damage from previous flare-ups, but

apart from that I feel better than I have in ages. I guess the acid-

test will be in whether or not I get any more flare-ups while on

Humira.

From your's and other's posts, I would guess that the efficacy of the

new TNF-inhibitors (Enbrel, Humira, Remicade, Amevive) depend upon

the severity of the existing disease. In severe cases of PA, it may

be that in the customary dosages in which these drugs are prescribed

they can't eliminate the TNF molecules as fast as the body's immune

system can produce them. It's seems logical to me that people with

very severe PA should either take larger or more frequent doses of

the TNF inhibitors than others do. In fact, the Humira brochure says

that it can be injected weekly rather than bi-weekly if needed, and

I've seen at least one post from someone who says she (I forget who

it was) was injecting Enbrel more frequently than is normally

prescribed to good effect. With the astronomical cost of these drugs,

the insurance companies balk at paying for them even at the standard

dosage frequency, but *hopefully* as competition among the drug

manufacturers increases, prices will drop enough that people who need

larger or more frequent doses of these new biological drugs can get

them.

Best wishes,

-- Ron

[Guest guest]

In a message dated 5/15/2003 1:46:18 AM Eastern Daylight Time, PA@...

writes:

> In severe cases of PA, it may

> be that in the customary dosages in which these drugs are prescribed

> they can't eliminate the TNF molecules as fast as the body's immune

> system can produce them. It's seems logical to me that people with

> very severe PA should either take larger or more frequent doses of

> the TNF inhibitors than others do. In fact, the Humira brochure says

> that it can be injected weekly rather than bi-weekly if needed, and

> I've seen at least one post from someone who says she (I forget who

> it was) was injecting Enbrel more frequently than is normally

> prescribed to good effect.

Hi Ron,

I wonder if that is the case with myself because Enbrel is just minimally

working and does not seem to be effective. I am going to give it another

week or two since my rheumy said to do so. It is almost 6 weeks. Do you

think there is a difference between Enbrel and Humira? Perhaps I need a

stronger dose like you mentioned. I really hope I do not need to add mtx to

it. I know some of you do that but I would like to try alternatives first.

Janet

[Ed. Note: As far as I know, there is no significant difference between Enbrel

and Humira other than the dosing schedule (ie; they are both TNF inhibitors). If

your doctor wants you to take MTX, why don't you ask him if you could substitute

Arava instead? They both do similar things, but unlike MTX, Arava has no side

effects for me at all except for some tinnitus. Ron]

[Guest guest]

Janet,

My GP is wonderful. The problem is all these specialists. Do you think you will

have a hard time being a RN with P/A? I always wanted to be a RN but I know now

that I am not physically capable........

I got the results from my CAT scan.. I was put on another round of antibiotics

and we'll take it from there. I do have an infection in my left sinus but the

dr. doesn't want to do surgery on me b/c I am a " bad candidate " I just hope

these antibiotics kill off all the bacteria but I don't think it is going to

help. I still cannot breathe.

take care,

Re: [ ] Re: Update

In a message dated 5/11/2003 12:35:04 AM Eastern Daylight Time,

leslieiansa@... writes:

> I just don't understand why I am having such a hard time finding a doctor

> that will work with me. This doc is better than the other 3 I had but I

> feel like he is pushing the Enbrel/mtx thing too hard and not giving me any

> other options.

Hi ,

My computer crashed on Thursday and just got back online now. I know you

have an HMO but you can still choose what GP you would like to keep as

primary, can't you? It is really hard to find a doctor that will be

compassionate, listen to what you are saying and be well-knowledged as well.

Believe, me I am in the medical profession and a few credits away from my RN

and have met many doctors that I thought were idiots. When I feel I know

more then the doctor, then that is a problem on the doctor's end. What

happened with your cat scan. Have you found out anything? Also, about what

you said about your mother not understanding, I have found that out with a

lot of people in my family. Hang in there.

Janet

[Guest guest]

In a message dated 5/16/2003 2:14:16 PM Eastern Daylight Time,

leslieiansa@... writes:

> My GP is wonderful. The problem is all these specialists. Do you think you

> will have a hard time being a RN with P/A? I always wanted to be a RN but

> I know now that I am not physically capable........

,

I never made it to finish nursing school. I was going to nursing school and

was almost finished when I had a bad flare of PA and tore the meniscus in my

knee while in training. Every time I wanted to finish school somthing else

happended to me. It has been 10 years now and I feel too sore and fatigued

to finish. It's a real shame because I think I would have been a darn good

nurse. I have been a medical assistant for 25 years.

Janet

[Guest guest]

At 11:34 AM 5/16/2003 -0500, you wrote:

>Janet,

>

>My GP is wonderful. The problem is all these specialists. Do you think

>you will have a hard time being a RN with P/A? I always wanted to be a RN

>but I know now that I am not physically capable........

There are a bunch of us in the PA group I believe are nurses.....I've

scaled back my hours(no pun intended) but still practice and there are many

ways to practice nursing now , some way less physically demanding than

others.......with such a shortage the choices/opportunities are abundant.

Gee, do I sound like a recruiting agent?....Mo

> Re: [ ] Re: Update

>

>

> In a message dated 5/11/2003 12:35:04 AM Eastern Daylight Time,

> leslieiansa@... writes:

>

> > I just don't understand why I am having such a hard time finding a

> doctor

> > that will work with me. This doc is better than the other 3 I had but I

> > feel like he is pushing the Enbrel/mtx thing too hard and not giving

> me any

> > other options.

>

> Hi ,

> My computer crashed on Thursday and just got back online now. I know you

> have an HMO but you can still choose what GP you would like to keep as

> primary, can't you? It is really hard to find a doctor that will be

> compassionate, listen to what you are saying and be well-knowledged as

> well.

> Believe, me I am in the medical profession and a few credits away from

> my RN

> and have met many doctors that I thought were idiots. When I feel I know

> more then the doctor, then that is a problem on the doctor's end. What

> happened with your cat scan. Have you found out anything? Also, about

> what

> you said about your mother not understanding, I have found that out

> with a

> lot of people in my family. Hang in there.

> Janet

>

>

>

[Guest guest]

Ron,

MTX did not cause hair loss in me but it did cause breakage. My hair dresser

said I have very weak hair. He said that certain medications can cause that.

Well, Humira (at $400) is cheaper than Enbrel ($1600) then. Do you think it

would be best to try Arava or MTX with Enbrel before I move on to Humira? I

guess that would be limiting my choices. It seems they are always coming out

with new drugs though. I know the Enbrel isn't preventing damage in me so my

feelings are to move on. The rheumy said he would try to prescribe Humira off

label like you said. I already tried MTX prior to Enbrel (5-6 months up to 15mg

and I never noticed ANY improvement) so I don't know why it would work with

Enbrel (it took me the full 3 months to notice limited improvement) which also

doesn't work. I never took the combo. Is it possible that the combo might work

when neither drugs alone did?

The constantly changing weather seems to do my PA in. Last night we had hail

the size of quarters. Today it is in the 90's. Tonight and tomorrow morning it

is supposed to be in the 60's and then get up into the 90's again. Not good for

the arthritis at all! It's so hot I don't want to leave the house.

LA is also one of the cities I want to visit. Alot of fun stuff to do there

too. Houston has horrible traffic too. We also have the worst pollution in the

United States. Something to do with all of the chemical and petrol plants I am

sure. I sometimes wonder if we moved away from the city if my sinus/breathing

problems would get better. However, I am a big city girl and I could never be

stuck out in the country. I am still hopeful that one day I can convince my

husband to move back to London. For me that has been the only place I have ever

called home! Maybe if I could ever get the PA under control....

take care,

[Guest guest]

In a message dated 5/17/2003 8:50:16 PM Eastern Daylight Time,

leslieiansa@... writes:

> I sometimes wonder if we moved away from the city if my sinus/breathing

> problems would get better.

,

It sounds like it to me that you should go to an allergist/immunologist. I

had horrible sinus problems at one time that would not quit. I have been

taking allergy injections for the past few years and my sinus problems are so

much better since that.

Janet

[Guest guest]

Ron,

Sorry if I ask things repetitive, I am behind in my emails.

I really don't have a psoriasis problem. I don't have psoriasis at all. I am

just concerned about the arthritis, mainly the prevention of permanent damage

more so than the pain control. If I have to take pain meds I will. I just

don't want to have irreversible damage. I don't want to wind up disabled. I am

too young and too active (or at least I used to be).

As far as swelling goes I think I am okay but I have alot of pain and the bone

erosion. I am not sure if that will constitute a severe case. In my book it

does. I have had PA for 5 years now. I could handle the pain in my hands but

not the pain in my back. Maybe I should see if I can increase the frequency of

my Enbrel before changing meds.

thanks,

leslie

-

[Guest guest]

-- It's a real shame because I think I would have been a darn good

> nurse. I have been a medical assistant for 25 years.

> Janet

>

> Hi Janet,

I think you would be a darn good nurse too. Hardests parts of PA for

me have been giving up dreams and dealing with constant fatique.. I

want you to know how much I appreciate the medical assistants at my

doc's offices. I have a very sweet one now who also has had some

nursing school and is just as helpful as some of the nurses.

Best Wishes,

Marti

>

[Guest guest]

> Ron,

>

> Well, Humira (at $400) is cheaper than Enbrel ($1600) then.

> Do you think it would be best to try Arava or MTX

> with Enbrel before I move on to Humira?

If I were you, that's what I would do. Although it's not necessary to

take MTX along with Enbrel or Humira, MTX in itself helps alleviate

PA so perhaps you need to take a " double-barreled " approach (ie; a

biologic + MTX). Personally, I prefer Arava over MTX very much,

because the side effects from MTX were terrible, but I have no side

effects from Arava at all except for some tinnitus in my ears. It's

just my personal opinion but since all the biologics are TNF

inhibitors, I assume they all work pretty much the same and that if

one doesn't help another probably won't either. If you do switch to

Humira, I would definitely try to get my rheumy to prescribe weekly

injections rather than bi-weekly injections if I were you (or maybe

you could increase the frequency of the Enbrel injections?).

> LA is also one of the cities I want to visit.

> A lot of fun stuff to do there too.

Be sure and stop by to visit if you're ever in the area. I live in La

Crescenta. It's just North of Glendale and West of Pasadena. :-)

>

> take care,

>

>

You too,

-- Ron

[Guest guest]

In a message dated 5/18/2003 4:04:40 AM Eastern Daylight Time, mlw402@...

writes:

> I

> want you to know how much I appreciate the medical assistants at my

> doc's offices. I have a very sweet one now who also has had some

> nursing school and is just as helpful as some of the nurses.

Thanks Marti,

That makes me feel good. I wish I could have finished up with my nursing

degree. I actually started finishing at home with a home college course and

took 3 computer exams. I only have 4 more exams and then would have to do a

whole weekend of clinical evaluations in Albany. I can't seem to pick up the

books to study. Too much brain fog. Also I'm an old fart turning 50 in

September.

Janet