flare

June 3, 2008

Lets start with friday, i noticed my joints in my hands were getting a bit red

but didn't pay much attention to it. I was fine saturday morning. Sunday

morning I was doing ok, I went to work and by the time I got home I was very

achy and my joints in my hands were red again along with my feet. I got myself

in to the house and sat down for a few hours. I then found myself unable to

even move to get comfortable. I was in so much pain when my boyfriend got home

I went to the hospital. All they could do was send me home with pain meds

(naproxyn) and (medrol). At the hospital they gave me a dose of the medrol and

oxycontin. I thankfully last night had 1 percocet left and had to take that to

get any relief from the burning pain I had in my upper legs, it felt like

someone jack hammered the bones then set whatever was left on fire.

I don't have any insurance until July 1st. So I called the rheumy today and

I've been scheduled to see them on July 14th. I let them know about the flare I

am having and there is nothing they can do until they see me then. Meanwhile

I'm working between 40 to 60 hours a week.

May 2, 2009

Bonnie,

Sorry to hear your in a flare. Have you thought about trying another RA

med? I would sure have a chat about changing meds. There are a lot of

different meds, and I hope your on some type of pain med. I was in a

horrible flare, and I'm feeling better after a steroid shot. My rheumy

told me it last about 2-3 months. The very next day, I started feeling

better. I still hurt of course, but not like before.

Its so hard to keep going when you can't hardly go. We can only do so

much, and then its all left up to the doctor. I hope he understands

your pain, and can figure something out for you.

Take care, and feel better soon, Tawny

PS:Do you live in CA? I use to write Bonnie in CA, but lost email addy

>

> Hello all! Its been awhile, I know... I am having a hard time

remaining positive during this most recent flare. All I want to do is

cry and curl up into a little ball.. My feet, ankles, wrists, hands

fingers, and toes are all swollen. the joint pain is terrible and there

doesn't seem to be anything that can be done. My doc recently gave me

anti-inflammation shots in my ankles, wrists and knuckle joints with

little success... I went back for a follow up and he once again gave me

four additional shots in my knuckle joints... The shots make the pain

worse for the first 3-4 days (as if that's possible)and then the pain is

only relieved for only a short period (ie couple days to a week..) He

says that my rituxin infusion is wearing off and that I can't get more

until June! What?! That means I will be swelling and in pain for another

month and a half... I can't take this anymore...

> I think I've hit a blank spot and I just can't seem to find my normal

optimistic attitude. I work full time and luckily the office I work in

is very understanding... But for how long? I'm sick of myself, I can

only imagine how they feel...

> Thanks for listening

> Bonnie

>

May 2, 2009

Bonnie,

You may have to wait for an infusion (you can ask your rheumy for an increase in

dose), but you should be able to get pain meds or a medrol dose pak at the very

least. You shouldn't have to be miserable until June.

If your rheumy can't help, I would ty your pcp. Granted flareup's are part of

life for us, but we shouldn't have to wait in severe pain and swelling between

appointments. We are here for you, even if it's ear to listen and a shoulder to

cry on. I hope you feel better.

>

> Hello all! Its been awhile, I know... I am having a hard time remaining

positive during this most recent flare. All I want to do is cry and curl up

into a little ball.. My feet, ankles, wrists, hands fingers, and toes are all

swollen. the joint pain is terrible and there doesn't seem to be anything that

can be done. My doc recently gave me anti-inflammation shots in my ankles,

wrists and knuckle joints with little success... I went back for a follow up

and he once again gave me four additional shots in my knuckle joints... The

shots make the pain worse for the first 3-4 days (as if that's possible)and then

the pain is only relieved for only a short period (ie couple days to a week..)

He says that my rituxin infusion is wearing off and that I can't get more until

June! What?! That means I will be swelling and in pain for another month and a

half... I can't take this anymore...

> I think I've hit a blank spot and I just can't seem to find my normal

optimistic attitude. I work full time and luckily the office I work in is very

understanding... But for how long? I'm sick of myself, I can only imagine how

they feel...

> Thanks for listening

> Bonnie

>

May 3, 2009

Tawny and ,

Thank you both for the kind words... I'm really struggling this time around..

My Rheum gave me Tylenol 3 for the pain (tramadol didn't work at all), it just

doesn't seem to help enough... not to mention the groggy feeling that comes with

it. You constantly feel that your only half here and that's the half that's in

pain... I'm also taking medrol twice daily, methelytrexate (20 milagrams

weekly), planqunile and folic acid.

He sent me for more blood work, and if it comes back alright, then he said he

would try Remicade the next time around, but he says he doesn't really want to

go that route. I am pushing for more options and different meds but I also need

to believe that he knows what is best and I'm trying to trust him..

Apparently, where I've been diagnosed with Undifferentiated Connective Tissue

Disease, I have a lot of Lupus type issues along with RA... and apparently

Remicade and Lupus shouldn't mix... I have however been having more RA type

symptoms over the past 3-4 months, and the doctor thinks I might be changing

diagnosis... I've already tried Enbrel with only a little success, the Rituxin

(when working) was really great, I really began to become " normal " again, but

now that its stopped working, I'm wondering if the three months of feeling

better is worth the three months of feeling crappy... I'm thinking not!

This crap is way too confusing... especially when you add pain, and luppiness

due to all the meds... If only I could find my brain in all of this... I can

still remember being smart once (they were the days)

P.S Tawny... I'm pretty sure we've chatted on here before, but I'm not the

Bonnie your referring too... I live in Cape May County, NJ...

Thanks again Ladies for your support... My hubby tries, but he really isn't

capable of truly understanding.

May 3, 2009

>New member: Flares suck! Mine seem to be getteng longer and londer.

I am on Humira, Celebrex and Onycodone,all pain or Biologicals (suppose to slow

the progression). Not happening. I told my Doctor that he could give me all the

pain killers he wants but they do not address the inflamation and swelling of

joints. I take 10mg. of Predisone which treats the inflamationm but I need it

upped to 15mg. He said if I do that it will increase my blood sugar

(pre-diabeties)

and I will have skin and bone problems. My bones are excellent. I told Him

living in pain everyday also causes problems. It has been at least 6 yrs. now

and the pain issue is still not resolved. What is the answer?

Thank you, K in hurt.

> Tawny and ,

> Thank you both for the kind words... I'm really struggling this time around..

My Rheum gave me Tylenol 3 for the pain (tramadol didn't work at all), it just

doesn't seem to help enough... not to mention the groggy feeling that comes with

it. You constantly feel that your only half here and that's the half that's in

pain... I'm also taking medrol twice daily, methelytrexate (20 milagrams

weekly), planqunile and folic acid.

> He sent me for more blood work, and if it comes back alright, then he said he

would try Remicade the next time around, but he says he doesn't really want to

go that route. I am pushing for more options and different meds but I also need

to believe that he knows what is best and I'm trying to trust him..

> Apparently, where I've been diagnosed with Undifferentiated Connective Tissue

Disease, I have a lot of Lupus type issues along with RA... and apparently

Remicade and Lupus shouldn't mix... I have however been having more RA type

symptoms over the past 3-4 months, and the doctor thinks I might be changing

diagnosis... I've already tried Enbrel with only a little success, the Rituxin

(when working) was really great, I really began to become " normal " again, but

now that its stopped working, I'm wondering if the three months of feeling

better is worth the three months of feeling crappy... I'm thinking not!

> This crap is way too confusing... especially when you add pain, and luppiness

due to all the meds... If only I could find my brain in all of this... I can

still remember being smart once (they were the days)

> P.S Tawny... I'm pretty sure we've chatted on here before, but I'm not the

Bonnie your referring too... I live in Cape May County, NJ...

> Thanks again Ladies for your support... My hubby tries, but he really isn't

capable of truly understanding.

>

May 3, 2009

(((Bonnie))),

I do remember chatting, its hard to keep track sometimes. I'm sorry

your having so much problem right now. It seems like your doc should

put you on a pain med, that will truly help you.

It is so hard to live with this disease, and without the proper meds,

impossible. So, your doctor hasn't ruled out between the two diseases,

Lupus or RA. I hope he can figure out your dx soon.

If your not happy with your rheumy, there is always another one. You

need one that is very aggressive to deal with your disease. That is my

honest opinion, and I know its not for everyone.

I was on plaquenil for a short time. It didn't work, it caused a lot of

problems with my eyes. I am on methotrexate and humira right now. It

keeps me moving, and that is all I'm hoping for. I'm never going to be

how I use to be, but as long as I can keep moving on my own, that is all

I need, and no pain.

I hope the day brings calmness to your pain. It is very hard for

others to know what your going through, but we all know here. If you

ever need to chat, I'm always here. You can email me anytime.

Have a bless day, Tawny

>

> Tawny and ,

> Thank you both for the kind words... I'm really struggling this time

around.. My Rheum gave me Tylenol 3 for the pain (tramadol didn't work

at all), it just doesn't seem to help enough... not to mention the

groggy feeling that comes with it. You constantly feel that your only

half here and that's the half that's in pain... I'm also taking medrol

twice daily, methelytrexate (20 milagrams weekly), planqunile and folic

acid.

> He sent me for more blood work, and if it comes back alright, then he

said he would try Remicade the next time around, but he says he doesn't

really want to go that route. I am pushing for more options and

different meds but I also need to believe that he knows what is best and

I'm trying to trust him..

> Apparently, where I've been diagnosed with Undifferentiated Connective

Tissue Disease, I have a lot of Lupus type issues along with RA... and

apparently Remicade and Lupus shouldn't mix... I have however been

having more RA type symptoms over the past 3-4 months, and the doctor

thinks I might be changing diagnosis... I've already tried Enbrel with

only a little success, the Rituxin (when working) was really great, I

really began to become " normal " again, but now that its stopped working,

I'm wondering if the three months of feeling better is worth the three

months of feeling crappy... I'm thinking not!

> This crap is way too confusing... especially when you add pain, and

luppiness due to all the meds... If only I could find my brain in all of

this... I can still remember being smart once (they were the days)

> P.S Tawny... I'm pretty sure we've chatted on here before, but I'm not

the Bonnie your referring too... I live in Cape May County, NJ...

> Thanks again Ladies for your support... My hubby tries, but he really

isn't capable of truly understanding.

>

May 3, 2009

Tawny,

Unfortunately or fortunately (depending on how your looking at it)I am already

seeing the top doc for my area... He's one of the best for the tri-county area

(Delaware, Pennsylvania and NJ) As he puts it, I'm just a " difficult case " ...

I have already gotten 2nd, third and forth opinions including from the Good

Samaritan Hospital and the Mayo Clinic... Top hospitals around my area... They

agreed with my Rhuem and told me he had all the right idea's and that I should

stick with him as they believe he'll do everything possible... So, all I can do

is trust him...

Thanks for the offer of the e-mail... I may take you up on that sometime...

Please feel free to do the same with me!

Bonnie

> >

> > Tawny and ,

> > Thank you both for the kind words... I'm really struggling this time

> around.. My Rheum gave me Tylenol 3 for the pain (tramadol didn't work

> at all), it just doesn't seem to help enough... not to mention the

> groggy feeling that comes with it. You constantly feel that your only

> half here and that's the half that's in pain... I'm also taking medrol

> twice daily, methelytrexate (20 milagrams weekly), planqunile and folic

> acid.

> > He sent me for more blood work, and if it comes back alright, then he

> said he would try Remicade the next time around, but he says he doesn't

> really want to go that route. I am pushing for more options and

> different meds but I also need to believe that he knows what is best and

> I'm trying to trust him..

> > Apparently, where I've been diagnosed with Undifferentiated Connective

> Tissue Disease, I have a lot of Lupus type issues along with RA... and

> apparently Remicade and Lupus shouldn't mix... I have however been

> having more RA type symptoms over the past 3-4 months, and the doctor

> thinks I might be changing diagnosis... I've already tried Enbrel with

> only a little success, the Rituxin (when working) was really great, I

> really began to become " normal " again, but now that its stopped working,

> I'm wondering if the three months of feeling better is worth the three

> months of feeling crappy... I'm thinking not!

> > This crap is way too confusing... especially when you add pain, and

> luppiness due to all the meds... If only I could find my brain in all of

> this... I can still remember being smart once (they were the days)

> > P.S Tawny... I'm pretty sure we've chatted on here before, but I'm not

> the Bonnie your referring too... I live in Cape May County, NJ...

> > Thanks again Ladies for your support... My hubby tries, but he really

> isn't capable of truly understanding.

> >

>

May 4, 2009

Bonnie,

do you mind if I ask who your Doctor is, if he's a top doc in the tri-state area

I'm be interested in keeping that on file for maybe future need as I am also in

that area.

Thanks,

in PA

[ ] Re: flare

Tawny,

Unfortunately or fortunately (depending on how your looking at it)I am already

seeing the top doc for my area... He's one of the best for the tri-county area

(Delaware, Pennsylvania and NJ) As he puts it, I'm just a " difficult case " ... I

have already gotten 2nd, third and forth opinions including from the Good