Re: Fears of Meds

[Guest guest]

I dont know that I would categorize declining to use a prescribed and paid

for medication as a lack of thankfulness, perhaps the disease isnt serious or

the person has an abundance of effective options. I have thought many times

that there are more than a few that would love to have that batch of Enbrel

that is rapidly approaching its expiration date in the refrigerator and may

not be used at all but I held my tongue on commenting because of the

reprimand a while back over my whining about a discussion of 60 bucks for a

prescription that retails for $1200.

Even though you may get a med for only the copay we all pay for it indirectly

in higher insurance premiums and to let such an expensive med go to waste is

a shame. I would post my address and pay the shipping too but I wouldnt want

anyone to get in trouble for trafficking a controlled substance. If you do

have one of these expensive biologics, or any drug for that matter, and dont

intend to use it you could take it to your rheumy or to a charity clinic so

they can legally prescribe it and dispense it as a sample to someone who

might benefit from it but cant afford it. I read a peice a while back about

the percentage of prescription drugs that were destroyed because the person

they were prescribed to didnt want to take them or no longer required them so

instead of getting them into the hands of someone who could still use them

they were disposed of. This is particularly true in nursing homes. Billions

of dollars of wasted medications, a lot of which are paid for by medicare go

in the can. I can see why it wouldnt be such a good idea to put a med that

has left a professional setting back into inventory but in a case where the

med has only been handled by health care professionals I dont see any reason

why 20 leftover vioxx from Mrs 's prescription, she now uses arava, cant

be given to Mrs who does well on vioxx and still uses them. Orin

[Ed. Note: I tried that once Orin. I tried to give back a three month supply of

*unopened* Sulfasalazine (with the tamper proof seals intact no less!) both to

my pharmacy and to my doctor who had written the prescription for me herself not

too much earlier, and was refused by both. I wasn't asking for any money in

return, I just hated to see all those drugs go to waste because I couldn't take

the sulfasalazine anymore after I started Arava (the combination caused

excessive tinnitus in my ears). Sulfasalazine is a pretty inexpensive drug, so I

guess it wasn't too much of a loss, but even so nowadays I don't refill a

prescription unless I'm running very low on it instead of ordering it far ahead

of when I'm going to need it. Hadn't thought of the nursing home angle though -

I'll keep that in mind. Ron]

[Guest guest]

Hi Michele,

This all started when I was 23 (1997). I was diagnosed at 25 (1999). (only a few

fingers were involved then, and it was all soft tissue sausage digits, that were

basically not working... I couldn't bend them at all) My Dr. (PCP) then put me

on Naprosyn (NSAID) just to stop the inflammation... it didn't work. My legs

were very heavy then and I had occasional back aches, but I didn't associate it

with the PA for some reason. I thought it was just lack of activity. A Rheum in

TN told me to go on MTX, I researched it and chose not to. At that time my SED

rate was only about 30-50 when it was checked, so I was not alarmed (normal is

20). My other bloodwork was perfect, so I knew the disease was not very active.

When I moved to NC (July of 2001) I went on Celebrex daily. My feet were in so

much pain that I had no choice. My new Rheum at that time kept telling me that

MTX was the only way to go, and if it didn't work he would put me on Remicade. I

let him write the prescription just to appease him, but I never had it filled.

When I think back on it, he NEVER checked my bloodwork. I started at the lowest

dose of Celebrex (200 mgs a day) and moved up to 400 mgs a day. This kept my PA

at bay for almost a year. For the summer of 2001, I didn't even know I had PA. I

felt like I was in a full remission. March of 2002 things changed, the leg

fatigue started again, I had problems getting off the floor when I sat on it,

and my sausage digits returned, though not as bad. My big toe was inflamed as

was the soft tissue on the bottom of my feet, and my ankle was swollen. I knew I

probably needed to start taking something. I also found out that my White and

Red blood cell counts were out of whack for the first time ever, and my SED rate

was up to about 135!!! YIKES! The disease was very active, and that scared me. I

found all of this out at a yearly physical exam with a PCP. God only knows how

long my bloodwork had been screwed up, since my Rheum was not checking it. (I

hadn't had it checked in well over 2 years) So, I asked for a new Rheum, and my

PCP in NC set up the appt. for me. The new Rheum did not do any bloodwork, since

the PCP had just completed it, but he did put me on a VERY low does of

Prednisone to try to bring everything back into check. He also did X-rays that

showed no joint damage as of yet. I was so scared that I took it, even though I

KNEW how dangerous it could be. For 10 days I took 5mg of Prednisone. Then I

only took it when I felt I needed it over the next 3 months. (30 tablets in

total I believe over 90 days) I finally realized it was doing NOTHING but making

me feel like crap, and I was constantly scared of the side effects, so I went

off of it, and told my Dr. during the next visit to never put me on it again.

Through reading, I also found out that Prednisone does not work for most PA

patients, but tends to work well for RA. I took this information to him. The one

thing the Pred. did do was bring my SED rate down, but the cell counts were

still up. When I went to that first appt. with the new Dr. I was placed on the

waiting list for Enbrel, and he agreed that MTX was not a good option for me at

this point in life. (First Dr. to ever say that!) By Sept. of 2002, there was

still no relief in site for the Enbrel wait. So, I was still on 400mgs of

Celebrex a day, and still refused to use MTX. My bloodwork was still a little

whacko! In Sept. of 2002 my shoulder started hurting for the first time and it

was BAD! I couldn't sleep at night. All of the other pain had been bearable, but

this was not. I started looking for other meds that I had not been made aware of

by Dr.'s, and I found some. After reading, and knowing I wasn't allergic to

Sulfa drugs, I decided that Sulfasalazine (Azulfidine) was the option for me at

that point. I went to my Dr. and asked his opinion on this drug, and he said " I

think it's a wonderful drug, if it works " . This reassured me that my research

had paid off, and I have been on Sulfa since Sept. of 2002. It did cause a

little more P to surface, but otherwise I have had NO side effects. Within a

month my bloodwork was all perfect again, so I have to feel that it was a good

option for me. I only take 2 pills a day, one in the morning and one at night.

My legs feel great, my toes and foot still hurt occasionally, as does my

shoulder. My fingers are fully working with no damage of the joints. I am NOT

pain free, but I just feel better knowing I might be preventing the joint

damage. There are plenty of days that I feel really good, and my bloodwork being

normal again puts me at ease.

So, sorry to make this so long, but there's what I has happened to me with this

disease. No, I am not as lucky as you are with only taking one Vioxx a week, but

I am able to live my life pretty comfortably right now. Enbrel became available

to me in January, and you know the story there. I am currently on 1-2 Celebrex a

day for inflammation, and 2 Sulfasalazine tabs a day as a DMARD. How much pain

are you in? Obviously you can funtion fairly well, or you would be using VIOXX

more often. I say if you don't feel damage is currently being done, then keep up

what you are doing. Make sure your bloodwork is normal, and your X-rays continue

to look good. (I like this done every 6 months, but most Dr.'s seem to be OK

with once a year, as long as all you are taking is Vioxx).

In a message dated 2/7/2003 2:43:36 AM Eastern Standard Time,

degsy@... writes:

>

>

> So what, if anything, do you take at the moment? I was wondering because you

sound just like me. I have said so many times that I will start my MTX but

still haven't got the script filled yet. I really don't think that I have a

severe case of PA and until I do then I don't think that I need to take anything

as yet. At the moment I only take Vioxx as I need it, which at the moment has

been about once a week....yes I know I am lucky. I take a variety of vitamins

and go to Reiki once a week, maybe this works.

>

> I am worried that by not taking any meds, I am doing myself harm by not

stopping the disease in its tracks, but I cant help but think that by taking

medication that messes with your immune system may cause more problems down the

track. (Ducks

> for cover - lol). That's just my belief.

>

> Sorry if I offended anyone.

>

> Michele

[Guest guest]

In a message dated 2/7/2003 2:43:36 AM Eastern Standard Time,

degsy@... writes:

> I take a variety of vitamins and go to Reiki once a week,

> maybe this works.

P.S. What is a Reiki?

[Guest guest]

In a message dated 2/7/2003 12:15:49 AM Eastern Standard Time,

pookiegut@... writes:

> Please no my Enbrel will not go to waste. If I haven't used it by June, I

> will give it to someone I know who uses Enbrel. I did pay $500 for this, so

>

> it was not pain free in the pocket. I would NEVER let such an expensive

> drug

> go to waste.

>

>

>

Hi ,

I am expected to get my Embrel in a week. I am also afraid to try it but I'm

afraind not to try it. I cannot deal with this pain anymore and two finger

have small bone spurs on them. The bone on my ankle looks weird because it

is sticking out. It's on top of my foot. I am going to start it when it

comes and give it a try. Do you know anyone who has had a problem with it.

Janet

[Guest guest]

In a message dated 2/7/2003 4:31:31 PM Eastern Standard Time, web63@...

writes:

> I really think this will be my miracle drug, but I am

> not going to hold my self to it :-)

> There is my story. I turn 40 Febuary 25th.

> Thanks,

>

I hope it will be my miracle drug. It is coming in about a week. I am so

afraid that I will be one of the people that it doesn't help.

Janet

[Guest guest]

Hi ,

We are all at different places with this. I am 28, and I am still living pretty

normally, but not as good as some with PA. Just like it probably frustrates you

to have to be on all of this, it is a little sad to me to see that other people

take nothing, and I have to take something. I have a friend who went into full

remission after taking MTX for 2 months, went off of it after the 2 months, and

has NEVER taken any other meds, and has had this for a little over a year. She

has not pain right now, and hasn't since her 2 months of MTX. Yes, I sometimes

wish it was that easy for me, but I chose not to take MTX and still choose to do

so. (and I am sure these results are not common) This disease is so different

for each of us, and I am so sorry you are having to go through all of this, and

still searching for something that works. I am 28, so I can only hope that at 40

I can still be maintaining the life I live right now.

In a message dated 2/7/2003 2:29:54 PM Eastern Standard Time, web63@...

writes:

> Azulfadine..... Hmmmmm.... I have been on 1500 mg (3

> pills a day all in the morning) for over 2 years, I do

> not think it has done a thing. But, my Rheumy says it

> helps builds, or slow down the loss of cartilage in

> the joints.

> Wether this is true or not, I have never quit taking

> it.

> Me, well I have been on MTX for about 14 months.

> Celebrex, Vioxx etc... was like candy.

> Methlypednislone<-ms: 1 pill 4 or 5 mg daily.

> Folic Acid: 1 mg daily

> Lipitor: 10 mg daily (High Colesterol) (Just found out

> I have to go to 20 mg :-(

> Cardiazem: 120 mg daily

> MTX: 7.5 once per week (Shot)

> Enbrel: Regular dose twice weekly.

> All of 2002 I was on Remicade last half of the year

> was double doses every 6 weeks ($6300.00 each

> infusion).

> I may have got 3 weeks of no limping out of the entire

> year. The best I ever felt in 2002 was from the end of

> Aug. 2002 - the middle of Oct. 2002. That is because

> my Rheumy gpt me 9 weeks off of work FMLA (Family

> Medical Leave Act). I did hurt, but not near as much,

> and I got to spend 10 days in " Sunny " Florida. That is

> when I felt the best.

> I have a computer job, so I sit at my desk most of the

> day.

> My hips hurt so bad that after sitting for about 45

> minutes, I would have tears in my eye I hurt so bad. I

> would have to get up walk around for about 5 - 10

> minutes, and I could sit for another 45 minutes.

> Needless to say my boss did not like that at all. That

> was when the FMLA, ADA etc... got thrown around. That

> is another story.

> Any way, at the beginning of January 2003 I got

> Enbrel. I can now sit at my desk for over an hour. I

> feel as though it is working, but there again I have

> only been on it for about 4 - 5 weeks.

> I really think this will be my miracle drug, but I am

> not going to hold my self to it :-)

> There is my story. I turn 40 Febuary 25th.

> Thanks,

[Guest guest]

Reiki (pronounced ray-key) is a laying-on of hands energy healing technique.

http://reiki.7gen.com/

http://www.ramsjb.com/talamasca/avatar/reiki.html

I have included a couple of links to read more on the subject. My dad has had RA

for more than 25 years and has avoided all drugs apart from the odd pain med now

and again. I have found a Reiki master who is also a Naturopath and he is slowly

changing my diet also.

I really believe in this and therefore believe that strong medication just

screws you up more. I have pain in my knees, left ankle, left wrist, I used to

also have pain in my jaw, some toes, some knuckles, spine and neck, they have

all but gone. My knees are pretty bad, I have difficulty getting up off my seat

sometimes, and although I can sit on the floor with my kids, I need a crane to

get me back up...lol. I haven't been to my Rheumy for a while as all they seem

to do is push drugs at me and make me feel bad for not taking them, I know my

own body and I'm not saying that I will never consider taking MTX or other meds,

I will, if the time comes when I have no other options. My Reiki Practitioner

agrees with me and does not believe in just one way, he believes that they can

both work together. Before going to see him I was on 50mg of Vioxx per day and

was in a lot of pain,

I have not looked back. I went to Reiki almost as soon as I found out I have PA,

I will never know whether I have a mild case or the Reiki works, I choose to

believe the latter, but time will tell

I say what have you got to lose by trying this.....the answer is nothing, but

you have a great deal to gain.

Love to all.

Michele

> I take a variety of vitamins and go to Reiki once a week,

> maybe this works.

P.S. What is a Reiki?