thank you

[Guest guest]

Cheryl, I was originally diagnosed as JRA at age 8 which was changed to PA in my

early 30s.  My rheumy has often said that I have aggressive PA that is RA like. 

My ortho keeps forgetting it's PA and writes RA often as my dx.  This year I've

had one hip and two knees done.  I need a foot fusion and AR next.  PA can be

aggressive and RA can be mild too.  And, I can relate to " painful sheets. "   That

has happened to me on a few occasions.  Pain is not fun.  Feel better!

Gilchrist <gilchrist414@...>

[Guest guest]

Cheryl,

Thanks for the reply to my message. I was on MTX for a short time but my liver

studies came back bad so they took me off. I did Humira for several months but

am currently without insurance. Honestly I felt no difference on the Humira. I

get SS disability,small monthly disability payments through my former employer

and will get Medicare next July. I don't qualify for Medicaid. My SS was

approved in only four months so I guess the PA did do damage (along with the

OA). The paperwork from my doctor to the SS admin said I have Cervical and

lumber radiculopathy, bil. carpal tunnel,ulnar and peripheral neuropathy.

Cervical spondylosis, clavicular spurring, OA bil. knees. Degenerative lumbar

spondylosis. Thoracic and hip arthritis. PA in the ankles and hands. (Oh, and

the P started for me in the hands and EARS. The ear thing is miserable.) Since

they didn't take xrays of every single joint in my body that is what they have

so far but I can assure you that I have it in many other joints if not all of

them. My nephew lives in Grand Rapids so I was thinking of going over there and

trying a rheumy when the Medicare kicks in. Do you or anyone else know of any?

I'm currently in a " holding pattern " which is also quite frustrating. I am

currently getting my drugs for high blood pressure and inflammation from WalMart

under the $4.00 program. I could only get Mobic which doesn't work as well as

the Lodine I was on but I'm getting by. The fact that I'm not working is the

ONLY way I am able to hang on. Trying to go to work every day had taken me down

to a low I never want to see again. Between the paralyzing fatigue and the

depression I don't know how I did it as long as I did. I am fifty years old and

had worked for thirty years.

I thought about sending you an answer to your posting privately. I get so much

comfort in knowing that I'm not alone in my symptoms I sent it to the group in

hopes someone can use some of the info.

Bless you all!

Deanna

[Guest guest]

Deanna:  from August until next July is a long time to go without treatment for

your disease, particularly given the amount of damage you already have.  I don't

know about Humira but there are programs available to help you get Enbrel at low

or no cost until you are on Medicare.  (Free for the first six months, a $75/mo

co-pay for the next six.)  I would assume that the other biologics have similar

programs.  Please remember that - powerful as they are - everyone reacts to the

biologics differently and it often takes time for them to work.

Also, from personal experience, I can also tell you that even when you're on

Medicare, your drugs can still be expensive, particularly if you end up on one

of the biologics.  My Enbrel cost me $414 for each of the first two months of

this year (35% co-pay); then it when to $1400 (full-price) while I was in the

" donut hole " .  Finally, after I went to the " catastrophic coverage category " on

the 5th month, it went down to $70 and will remain there for the rest of the

year.   

 Joanna Hoelscher

[Guest guest]

Joanna is absolutely correct and I know for a fact that both Enbrel

and Remicade have programs. Since Remicade is an infusion therapy,

they can provide the drug but then you still have to deal with the

hospital infusion cost. Enbrel has a foundation that will provide

everything free of charge until you have coverage. Most of the

companies out there have similar programs. You just have to get on the

internet and look for the manufacturer's website.

I spent 11 mos wtg for SS to kick in at a time when all rehab was

delayed. So much deterioration can happen within that time period that

anything you can find to stop gap will help even if it's not perfect.

As for the doughnut hole, I have discovered that Humira has a program for low

income that saves some people from the doughnut hole experience and really takes

better care of people than some of the horror stories I

have heard, so you might want to check them out for Part D.

Take care and good luck!

Cheryl M.

[Guest guest]

Hi Ed,

I just sent you what I have saved from the group in regards to spasms. I hope they help. If I already sent them before this, I am sorry for the tremendous number of e-mails.

Aletha

[Guest guest]

Carmen ~

I am so happy you are saving your life from potential harm !

This is wonderful news ! These devices are devastating so

many lives on the pretense they are safe, and that very

few people get ill from them.

I hope you have a happy healthy life for years and years

to come !

Hugs

Dede**************Great Deals on Dell 15" Laptops - Starting at $479 (http://pr.atwola.com/promoclk/100126575x1220433363x1201394532/aol?redir=http:%2F%2Fad.doubleclick.net%2Fclk%3B212935224%3B34245239%3Bb)

[Guest guest]

Carmen,

This is FANTASTIC news! I am thrilled to hear that you've made a wise decision

that will save you, your health and your future from myriad of problems and

complications that are inherent with breast implants over time. You are a very

smart woman!

I'm glad to know that your research and the help from our website has been a

contributor to making this decision. I am just so happy to hear of this...THANK

YOU for sharing, and making my day!

There is no doubt in my mind that the other sick women on this group feel the

same way I do...our goal in sharing our stories is to help other women not make

the same mistake we did, and we are grateful when women like you write it to

tell us of your wise decision!

God bless you!

Patty

>

> I want to thank you all for this wonderful website. I " ve been contemplating

getting breast augmentation. I stumbled upon this website last week and with my

other research, I made the decision to not go through with the procedure. I

cancelled my appt. yesterday and feel great about my decision. THANK YOU -

>

> Carmen

>

[Guest guest]

I am really glad that there is a site like this for people like me who were

unsure. One of my friends had them done last month. Originally we both were

going to do it together but she did without me. She likes the results but when

I asked her about everything that I had found out about it, she didn't know what

to say. Almost as if she never did much research on it. She told me last week

that upon thinking about it, it was the biggiest mistake of her life. I am 30.

Granted my breast shrunk alot after I breastfed my son and lost all my weight,

but I do have some and I should be thankful for what i have. I tell myself,

ther's always victoria secret bras to push those babies up..lol.

But just reading and hearing these stories def. made me think about my health &

financially, what will I be able to afford long term wise.

Honestly, I never imagined breast implants being such a hassle and causing such

harm to your body. I didn[t even know the shell is made of toxic chemicals.

The doctor made it sound like it was the safest thing on earth. I am thankful

I read the stories, I came to this group site, read more, found what I

needed to know to make a smart decision.

Thank you again,

Carmen

>

> Carmen ~

> I am so happy you are saving your life from potential harm !

> This is wonderful news ! These devices are devastating so

> many lives on the pretense they are safe, and that very

> few people get ill from them.

> I hope you have a happy healthy life for years and years

> to come !

> Hugs

> Dede

>

>

> **************

> Great Deals on Dell 15 " Laptops - Starting at $479

>

(http://pr.atwola.com/promoclk/100126575x1220433363x1201394532/aol?redir=http:%2\

F%2Fad.

> doubleclick.net%2Fclk%3B212935224%3B34245239%3Bb)

>

[Guest guest]

keep in touch on how you do with the D susie. i am very curious re this

issue if you look at the marshall protocol website there is a whole

group of ppl with autoimmune diseases who avoid D saying that it makes

their disease worse since it is a seco-steroid not a vitamin. some of

them with RA have done very well on the protocol. they said low 25-D is

a symptoms of the disease not the other way around. if you measure 1-25D

as well they say you will find it is very high. i took D for a few mos

and during that time my disease got a lot worse so am wondering about this?

monique

I totally agree. I KNOW that something spontaneous is happening to my

joints. I have had it in just about every joint on my body! And all my

tests say " normal " . Even the nurse said everything is " normal " . then she

called me back about the vitamin D issue. I do have great hopes that the

vitamin D will help the RA if that is what it is. And I think it is. My

next appointment is on 29th and I am going to INSIST that he refer me to

a rheumatologist who specialized in these things and would know better

than him. God Bless you and thanks for your information. I have been so

scared lately! Susie

[Guest guest]

,

Yes, nobody is sure whether vitamin D status is a cause or effect of

various diseases.

Not an MD

On Thu, Apr 2, 2009 at 5:18 PM, Sauve <moniquesauve@...> wrote:

> keep in touch on how you do with the D susie. i am very curious re this

> issue if you look at the marshall protocol website there is a whole

> group of ppl with autoimmune diseases who avoid D saying that it makes

> their disease worse since it is a seco-steroid not a vitamin. some of

> them with RA have done very well on the protocol. they said low 25-D is

> a symptoms of the disease not the other way around. if you measure 1-25D

> as well they say you will find it is very high. i took D for a few mos

> and during that time my disease got a lot worse so am wondering about this?

>

> monique

[Guest guest]

Oh it's horrible all right, you just get used to the " new " you.

Sue

---- jeepgadget <vonda3d@...> wrote:

> So far all of you have been wonderful in your responses. Thank you so much!

Hopefully this disease won't be so horrible after all.

>

[Guest guest]

Hi ,

If you feel that way, I would try the helmet. I think moms are

instinctively more sensitive to these things. So, just because it

doesn't bother your husband and other people say they barely notice, it

does not mean it is not there and that it does not bother you. Maybe,

the helmet will help enough that it no longer bothers you so much.

Personally, I'm trying not to feel bad about starting late, although it

is difficult. I keep reminding myself that no head is perfectly

symmetrical and maybe my son's head can get down to normal range. It

sounds like your son's head is not that far off now either. My son

will be in the helmet longer than if he started younger. However, my

son does not mind the helmet at all and he looks cute in it. He rubs

his head a little when we take it off and that is all. Then after a

short break he sometimes attempts to put the helmet back on.

Good luck!

Kathy

lauralulei wrote:

Thank you and Kathy. I guess it does depend on how much it

bothers me. Every time I look at him from the top which is most of the

time I can't help but see this big flat spot on the back and even more

when there are other kids around him. My husband is so over it that I

often think i'm overreacting but it just feels like I should do all I

can. When I ask other people they all quickly say they can barely

notice and how lucky we are he's fine considering he was born at 26

wks. I feel they're just not really paying attention, it's different

when it's your kid. Of course from the specialist and orthotist they

see worse and often 5mm is often the awesome end result they can get

to. But I only see mine right now. I guess because I know it could have

been corrected had i not trusted the ped I just don't want to give up

and am trying to turn back the clock. Thank you again. I'll keep you

updated.

[Guest guest]

Hi ,

You perfectly described how I feel about my son. Most people say it's not that

bad and sometimes I feel the same but when we are around a lot of other babies,

I know his head is not quite right. We are starting late too, but I felt like at

least this way I can say I tried and if it doesn't correct much, I guess it's

not too bad. But I didn't want to live with regret of not trying.

mom to Olsen, 11 months

> >

> >

> > Thank you and Kathy. I guess it does depend on how much it

> > bothers me. Every time I look at him from the top which is most of the

> > time I can't help but see this big flat spot on the back and even more

> > when there are other kids around him. My husband is so over it that I

> > often think i'm overreacting but it just feels like I should do all I

> > can. When I ask other people they all quickly say they can barely

> > notice and how lucky we are he's fine considering he was born at 26

> > wks. I feel they're just not really paying attention, it's different

> > when it's your kid. Of course from the specialist and orthotist they

> > see worse and often 5mm is often the awesome end result they can get

> > to. But I only see mine right now. I guess because I know it could

> > have been corrected had i not trusted the ped I just don't want to

> > give up and am trying to turn back the clock. Thank you again. I'll

> > keep you updated.

> >

> >

> >

>

[Guest guest]

I made the mistake after being sick four weeks ago listened to my primary

said i could take the z pack antibiotics with my methotrexate. I was still

sick after one antibiotic.. Went back to primary and got another antibiotic

stronger.. Decided to call my rheumatologist who told me no way take metho

and antibiotics that i am to wait three days after my script to start back

up. Hope this helps

Jolene

In a message dated 11/9/2009 12:43:50 P.M. Eastern Standard Time,

twoshaw@... writes:

I am glad that I joined this list because this is where I read that if you

are taking antiobiotics you shouldn't take Methotrexate. Then there was the

thread about mouth sores and Methotrexate.

Last week, my mom had a foot wound and she was prescribed antibiotics by

her

primary care and a podiatrist (who is also a surgeon). She complained to

her primary care (again) about this sore she had on her lip and mouth.

She was to start Orencia this morning but I starting questioning the RN

about the antibiotics, the Metotrexate and the mouth sore. He told us no

infusion today, do not take Methotrexate until 10 days after her last dose

of antibiotics and that the sore on her mouth was probably related to

Methotrexate. We are waiting for the doctor to call so we can get a

prescription for the Nyastatin (?) mouthwash.

Thank you to the people (I can't remember the names) who were discussing

all

of the above this weekend. If I hadn't read it here I wouldn't known what

questions to ask.

Sue

[Guest guest]

Nope my doctor said no methotrexate with any antibiotics maybe some other

rheumys are different im not sure. Yes when i take my methotrexate im

tired the next day most of us as i think ....

Jolene

In a message dated 11/14/2009 7:08:27 P.M. Eastern Standard Time,

Alannakitty@... writes:

You can't take z pack antibiotics with methotrexate?

Also does anyone else find they can't focus and are somewhat fatigued on

the day they take their methotrexate. I feel like I'm just fuzzy today

~

Re: [ ] Thank You

I made the mistake after being sick four weeks ago listened to my primary

said i could take the z pack antibiotics with my methotrexate. I was still

sick after one antibiotic.. Went back to primary and got another

antibiotic

stronger.. Decided to call my rheumatologist who told me no way take metho

and antibiotics that i am to wait three days after my script to start back

up. Hope this helps

Jolene

[Guest guest]

You can't take z pack antibiotics with methotrexate?

Also does anyone else find they can't focus and are somewhat fatigued on the day

they take their methotrexate. I feel like I'm just fuzzy today

~

Re: [ ] Thank You

I made the mistake after being sick four weeks ago listened to my primary

said i could take the z pack antibiotics with my methotrexate. I was still

sick after one antibiotic.. Went back to primary and got another antibiotic

stronger.. Decided to call my rheumatologist who told me no way take metho

and antibiotics that i am to wait three days after my script to start back

up. Hope this helps

Jolene

[Guest guest]

Jolene,

Thanks for the reply. I hadn't heard that about the antibiotics. I had been on

z-pack twice in the past six months and the Patient First doctor acted like he

played one one T.V. (a doctor that is). My Rheumy hasn't said anything one way

or another. I will ask him at my next appointment. Just was surprised. I know

you have to be careful with what we take b/c of the meds. I also know that it

can reduce the effects of our meds and definitely can affect birth control.

I've been on Methotrexate I think for... a year now? Hardly seems possible.

When I first started that I was tired a lot and had really bad headaches. I was

taking naps and having headaches that wouldn't quit. Now I don't have headaches

but now and again with the weekly dose. I did noticed I was really just...

lethargic today. I have energy to do manual things as I feel o.k. but mentally

I'm a fog and not able to use brain power. I guess this is normal and if I

thought about it probably something I have noticed before. I never had any

stomach issues (nausa and vomiting) with the dosage even without food. I was so

nervous about that.

Glad to know I'm not alone. Not that I would wish RA or FMS or any of my

problems on anyone.

Thanks again!

~

Re: [ ] Thank You

Nope my doctor said no methotrexate with any antibiotics maybe some other

rheumys are different im not sure. Yes when i take my methotrexate im

tired the next day most of us as i think ....

Jolene

[Guest guest]

I'm not sure about antibiotics since I haven't had to take any yet.

As for how I feel after I take my methotrexate, well, I take it at night and the

following day I don't drive at all because I feel like I can't concentrate

enough to be behind the wheel. I feel more tired and more out of it. I have

figured that it was normal so I just stay home and take it easy the day after

taking it.

Maty

>

> You can't take z pack antibiotics with methotrexate?

>

> Also does anyone else find they can't focus and are somewhat fatigued on the

day they take their methotrexate. I feel like I'm just fuzzy today

>

> ~

[Guest guest]

there was a comment that Birth Control could be affected with " our meds " . What

med can effect birth control?

Thanks,

Cheli

[Guest guest]

The RA nurse called and said to up the folic acid and the mouth sores are gone.

My mom says she doesn't want take Methotrexate again as it made her feel tired.

What hacks me off is that her primary care and the podistrist (who is a surgeon)

didn't mention not taking MTX.

Sue

[Guest guest]

The RN who does the Orencia infusion said that my mom would have to wait 10 days

after she took her last dose of antibiotics.

I guess it just depends on what your RA thinks.

Is there a RA in Austin, TX that anyone would recommend?

Sue

[Guest guest]

My mom is a zombie on methotrexate. Since she stopped taking it she is much

more alert. If something else will work she doesn't want to go back on it.

Actually, I don't think she is willing to try it again.

Sue

[Guest guest]

I feel like i have a hangover the day i take the mtx- sometimes for a couple of

days but it subsides

beth

>

> You can't take z pack antibiotics with methotrexate?

>

> Also does anyone else find they can't focus and are somewhat fatigued on the

day they take their methotrexate. I feel like I'm just fuzzy today

>

> ~

[Guest guest]

, you have done "LDN Friends" proud, all of the work you have put it, we are all so proud of you!!! Well done!! What next I wonder?:-))))

Celia

x

-----

[Guest guest]

This response came to me offlist but it's supposed to go to the list.

Taking it every other night isn't really a good way to ease into it,

imo. Do you have the capsules already made up?

Can someone help her know how she can break down her capsules to a smaller

dose?

Yes, my pain and depression went away for the large part, and when I overdo

I don't suffer for weeks. I have fibro.

--

At 03:58 PM 11/4/2010, you wrote:

>thank you for your responses. i have been on the ldn for three days and

>am exhausted and depressed, due to the exhaustion i think. i am on the

>lowest dose, but think i will take every other night for a week, to ease

>into it for better results. for those with fibro, are you feeling less pain???

~~~ There is no way to peace; peace is the way ~~~~

--A.J. Muste