Sue

[Guest guest]

Hi Sue,

I'm glad you're feeling much better these days. What drugs are you

on for your condition, if you don't mind me asking ? It's

interesting you are taking the mino and DMARDs.

best,

Leonie

>

> I am so sorry Vicki, I can certainly relate to all your pain and

not sleeping issues. AP worked some for me but at the 1 1/2 year

mark, and while I was grateful for the improvement (however small)

all I was able to do was muster thru the day. I had to re-think

things as I am/was missing precious time with my boys 10 and 12, so

after much thought and weighing the situation I had to go on

traditional meds, while I know the side effects are awful I had to

decide how much more time with my boys, at these fun ages, was I

willing to miss and the answer was if I could feel " normal " ...well

consequences be damned. Anyway I am feeling much, much better and

feel like I am living again. With pain improvement I am sleeping

again too so that was just another good benefit. Everything has its

risks and I am not advocating one or the other I am just saying

sometimes you have to re-evaluate things and make adjustments that

you feel would be best for you. I still take my mino too and and

hoping with my inflammation finally under control that it may work

also. Praying for guidance.

>

> Sue

> rheumatic AP hasn't worked for me, Long story

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> I have been on AP for a full year and I feel zero changes. I

realize it takes time, but ...shouldn't I have *some* improvement at

least? I can't imagine that at the 2 year mark I would just wake up

so much better. It seems logical to me it would be gradual...if at

all.

>

> I feel like AP really only helps RA and Scleroderma. It seems the

Sjogrens cases like mine, Lupus and other rheumatic auto immune

illnesses don't respond so well to AP. Even doctors who use AP give

no hope for Sjogrens specifically, including the big names listed

here. I have either seen or talked with various such doctors. Whitman

even tried to steer me towards Plaquenil and seemed doubtful of Doxy

or Mino but put it on the table, just because I asked so much.

>

> There is a tiny handful of people with Sjogrens who claim they

are better. Now it is not my job to doubt patients that have

suffered. But I cannot ignore the facts. There aren't many SS

patients on here or stories posted on the other board, but here is

the breakdown. A few NO change. A few claim they are improved, but

then you ask the Q's, and they aren't really that much better. One

such person takes Evoxac and says that now makes her close to normal

as far as saliva, whereas before didn't do anything. It didn''t do

anything for me either but even if it did post AP like it does for

her, I can't take that junk again with its ridiculous side effects.

Another girl said her eyes are better, but her eyes weren't bad

enough for her to get plugs like me. And she doesn't wear contacts

and that's the true test as your eyes have to be completely healthy

to be able to withstand the added moisture loss from contact lens

wear.

>

> To add to the problem, I not only dealing with Sjogrens but

constant nausea, light headedness, dizziness and peripheral

neuropathy. My eyes are still dry and painful, no way can I stick my

contacts back in, my vision is frequently so blurry, my mouth is

still a nasty cotton mouth and i wake to drink all night, my throat

is still dry and hard to talk, nose still dry and hard to breath,

feminine dryness, arm pits no longer sweat but that is more related

to the neuropathy I assume. Stomach still bloated all the time, I am

little and eat little but can't get back to my normal weight no

matter what, despite a relatively normal thyroid (and yes I have had

much more than TSH done tons of times). My face and body is full of

pimples like I never before had, worse than teenage acne some get. I

have to take stuff to be able to go to the bathroom my system is so

sluggish. The neuropathy feels like my hands, feet, legs are

constantly being electrocuted. Other times

> my legs feel like heavy tree trunks and sometimes my hands are so

numb I drop things. All this stuff combined and I cannot sleep as I

am too busy putting in eye drops, drinking water all night long,

putting in saline wash inside the nose so I can breath just a little,

waking up in neuropathy pain. Body tired from fighting the pain,

tired from not sleeping. How can AP not help with a single symptom?

>

> I have done the cleanses, all natural raw food diets, gluten

free, diet, LDN, taken TONS of recommended supplements, taken the

Doxy, everything. No relief. I hate living like this and the ONLY

thing that gave me hope was AP. Yet I am completely and totally

disappointed like I never imagined. There is nothing worse in life

than losing your health. Losing your job, being left by a significant

other, and all sorts of other troubles are nothing. There's a way out

with most other negative experiences. I have been through so much in

life and this takes the cake.

>

> I just wanted to say that while AP can do miracles for some, and

yet does nothing for others, even damage is possible, it's not

completely without risks. I'd love to think there is still hope, but

honestly I don't know where I would derive it from. I wish AP worked

for me, I even added Zithromax to no avail. I don't know if there is

a point in continuing to take it along with all the supplements.

>

> I'd appreciate if a certain someone doesn't reply to this. She's

caused me nothing but heartache. While I have her on my spam filter

and never see her group emails anymore, if she replies, then anyone

who replies after her, because her name is in the body of the mail

from before, those too will go in the junk folder so I will miss it

all. She knows who she is. Everyone else here has been so kind and

supportive. I appreciate that much more than needless criticism.

There's enough to be depressed about as it is.

>

> Thanks.

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