(No subject)

[Guest guest]

Dear , Well I guess I true that I hope there always is an answer and I

think to most medical problems there are, but our scientific community

hasn't discovered them all yet. I also feel like if I " accept " that this is

the best I will ever be...my family will be really let down. I don't want

them to give up. I don't know if I told you I have a daughter with severe

fibromyalgia and she has been ill since the age of 13. Ever since she got

sick I feel like I need to set an example than life does go on and you can

get better. Her case has been so bad she had to drop out of high school and

get her GED. She now is almost through with the first 2 years of college

and I'm pretty proud of her seeing how she did most of it on her own. So

it's hard to accept things as good as they can be when I still want her to

fight every day to get the most out of life she can.

I know there may be no answer for me. In fact I'm pretty sure I'm staying

away from the new group of injectables. I just don't think my body accept

them or is just allergic to them. In the meantime, I'll try and hope that

some of the others work. My rheumatologist is just all about the new drugs

since he thinks my case is really severe. But getting heart problems from

the drugs is pretty severe too. Either way, I'm trying to keep a positive

spirit and deal with the pain. I don't want to increase my pain meds much

more or I feel like if I ever have an emergency they would never put me

out..

Thanks for writing . I've noticed that you are about the only one who

ever responds. Is it because I am new or people are just too busy or have

their own little clicks. Either way, I love the information you give out.

Have a great holiday, Love, Fran

[Ed.Note: Hi Fran; thank you very much for your kind words. Please see the post,

Thanks For Being There to All, which you inspired.

D.]

[ ]

>

>

> Concerned about Enbrel, Humira, and being allergic to new drugs.

>

>

> Hi, I was hoping someone could give me some advice. I'm in the

middle of

> making up my mind about trying Humira. So far the only thing

that is

> helping my incredible PA is prednisone. I currently am taking

15mg a day

> and recently had to increase it after trying unsuccessfully again

to get

> off

> the drug. I was on 20 mg and at one point got down to 7.5mg, but

the

> flares

> at that point became unbearable.

>

> Here's my problem, or at least one of them..Every time I've taken

> Mexotrextrate or Enbrel I had severe allergic reactions. I had

difficulty

> breathing, extreme edema developed in my legs and feet and face,

and my

> lymph nodes were swollen and sore beyond belief. The reactions

were

> almost

> identical but Enbrel of course was worse since I had injected 5

times

> before

> I realized just how bad the side effects were. The other serious

area of

> concern is before I went on Enbrel I had a chest X-ray and was

told it was

> normal. After I developed all the side effects a 2nd X-ray, only

6 weeks

> apart, showed I had pulmonary edema and congestive heart failure

with a

> slight enlarging of my heart.

>

> When I sent away for all the literature on Humira I'm very

concerned

> because

> it states in the warnings it can cause Congestive heart failure,

even

> though

> the chances are very rare. I personally think my heart problems

were from

> the Enbrel, but don't know how I can prove it. From what I

understand,

> Enbrel is now being tested for treatment of congestive heart

failure.

> Which

> makes no sense to me... The other possibility is the heart

problems are

> the

> result of being on 20mg of prednisone for a year, but my doctors

have told

> me that is very unlikely. But they tend to say everything is very

> unlikely

> when it comes to bad reactions.

>

> So far everything I've tried for PA hasn't helped. I've tried

Plaquinel,

> Sulfasuldine, Nalfon, Vioxx, and Celebrex. I feel like I'm

running out of

> options and my bones and joints are degrading as fast as we

speak. I can

> hardly walk now and have to use a wheelchair whenever I leave the

house.

> Life has definitely gone down hill in the last 5 years. I'm only

48 and

> would like a few more years of a somewhat normal life and I

realize that

> is

> being selfish with everyone who suffers out there.

>

> If anyone has any advice, I see my doctor after Christmas and I

know he

> wants an answer on the Humira. I know it works wonders for some

people

> and

> I sure wish it would be the case as well for me, but it is only

taken once

> every two weeks, so it will take longer for it to leave my system

if I do

> have a bad reaction.

>

> Any words of wisdom?

>

> Fran in Florida

>

>

> [Editor's Note: Fran, I am sorry to hear things have progressed

to the

> degree they have, and that the PA is being so aggressive. Perhaps

(let us

> hope) you are just setting a record for the length of a flare, and

it will

> soon subside.

>

> Toward that end: Can you think of anything--and I mean ANYthing

(med(s),

> people, conditions, events, animals, climate, habits, eats & drinks,

> emotional, etc., etc.--that has been co-extant (i.e., coincident

with the

> approximate length), OR absent for that period,, with the increased

> aggressiveness of the PA?

>

> SOMEthing has likely changed--and that would include at any

level, all the

> way 'round to the ordinarily undetectable, biochemically molecular

(and

> therefore extremely difficult to ferret out) level. That is, at

least, the

> one knowable (even if not detectable) thing: SOMEthing changed.

>

> Sorry to have to go that far " back " in the process; I can't think

of

> where/what else to start (with). And what conclusion can we come up

with,

> assuming that is the case? Change something (although we don't know

what,

> specifically), again. {There are the " non-traditional " treatments,

too (not

> that I advocate them--just that I wouldn't rule anything out right

now):

> hypnosis, acupuncture, etc.} I'd work out a list--starting with the

most

> likely culprits--and, " shotgun " method, change as many as I could,

until

> something worked.

>

> And that's what you & your doc are doing. Will Humira be the

answer?

> That's not knowable, without trying it. The likelihood it will be

the answer

> is somewhat lessened by your response to Enbrel (another biologic).

You

> didn't mention Remicade; has that been considered? (Of course, it's

a

> biologic too...)

>

> What dose(s) of methotrexate have you tried?

>

> How about the psychotropic drugs (SSRI antidepresssants, etc.)?

If you're

> not on any, it is surely worth a try. If you haven't, you might

discuss

> these drugs with your doc.

>

> Tell us more about your situation; maybe something will give

someone a

> helpful idea. Especially, let us know how the doc visit goes, and

what

> direction you're planning on taking.

>

> D.]

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