Re: Couldn't walk even with crutches! Bad Bad Flare Up..

[Guest guest]

Prior to Prednisone use, at one point I was in a wheel chair for about four days. I was at Mayo Clinic and the Hematologist recommended 60 mg. of Pred. Within 24 hrs I was feeling substantially better. Last week I had a serious attack and had difficulty walking but was able to get around at work. I don't recall having any more than six or eight at a time. I did have new ones showing up every couple of days while other were dissipating.I am currently on 19 mg of Pred amd 400 mgs of Placquenil. I also take 400mg of Acyclovir. The Dr.s just took me off of Bactyrim, but I was taking that every other day for quite a while.I am able to work, but

admittedly I am not as sharp and feel pretty depressed. I am able to hang in there for 9 to 10 hrs though when needed.I guess I'm one of the lucky ones as I don't have a dead tissue issue. I hope my comments have helped. I see my Rhuematologist tomorrow at Northwestern. I hope he has a game plan to find some answers. At this point I have not heard any answers from any medical professional. Stay up and be well.. ..Lou Couldn't walk even

with crutches! Bad Bad Flare Up.. Have a few questions: 1. Has anyone had a bad flare up so bad that they couldn't walk before? (I did, and have them quite frequently. I have to roll on a computer chair to the bathroom! I've bought canes and crutches to help assist, but its terrible when it gets that bad). 2. Have you ever counted how many bumps you have on your body when it's gotten bad? Last time I had over 34. Varying from the size of a penny to the size of a toilet paper roll width. They usually occur on my legs and thighs, but also on my arms. 3. What are your current medications to help treat EN? I was on Steroids straight for 6

months! Along with Azathroprine, Cultrazine and antibiotics. *note antibiotics made it worse* *note was on birth control and antidepressants (Wellbutrin Xl) b/4 being diagnosed with EN* *note currently taking Dapsone, + Prednasone when bumps start arising* *note been really tired, have B12 defiency did possess to high levels of vit D* 4.Are you able to work, having Erythema Nodosum? I'm having a really hard time trying to work. The bumps come and go, but even after the nodules have calmed down and start to bruise, the actual bumps don't go away. I wonder if there is to much tissue damage. I can't be on my feet anymore, not sure what type of job I should get now. 5.Does anyone know of a therapy or testing that helps to dissolve the dead tissue cells? Acupuncture? I know if I lay in bed with hot/cold compresses it helps, but I'm talking long term. Currently I'm seeing a

rhematologist, but I'm the most severe that he's ever seen. I'm scared of getting pregnant b/c apparently it arises more frequently then. Any tips on living with this headache. My body feels like it's dying, even after the ER resolves! Email me if you want. Thanks for any tips in advance __________________________________________________

[Guest guest]

Lou, I hope you are satisified with your appointment today. I met with my Rheumatologist yesterday. I am back up to 15 of Prednisone and took 8 of MTX today. I am very frustrated as is the Rheumatologist. May just be that I need high doses of MTX. We are going to do a GI workup to make sure there is no colitis/crohn's. I Thought I would be feeling better by now. I have panniculitis (per biopsy), not EN. I am involved on arms, bilat. axillary upper back, back of head, face and jaw. My "nodules" have changed, not so nodular but more diffuse now. I may have to have another biopsy if the bump in prednisone does not help (I'm concerned that it is vasculitis) I am also getting worried about work. I tire so easily. I work at a large level 1 trauma hospital and have a very heavy workload. I pray that I can get this under control and

not have to cut back on my hours. , RE: Valium. I'm sure your MD will say the same. Valium is very addictive. You may want to try ativan as an alternative, if you haven't tried already. Just a suggestion. Glitter lips, Sorry you are having such a bad flare up. Thanks all, ChrisLou Pasquesi wrote: Prior to Prednisone use, at one point I was in a wheel chair for about four days. I was at Mayo Clinic and the Hematologist recommended 60 mg. of Pred. Within 24 hrs I was feeling substantially better. Last week I had a serious attack and had difficulty walking but was able to get around at work. I don't recall having any more than six or eight at a time. I did have new ones showing up every couple of days while other were dissipating.I am currently on 19 mg of Pred amd 400 mgs of Placquenil. I also take 400mg of Acyclovir. The Dr.s just took me off of Bactyrim, but I was taking that every other day for quite a while.I am able to work, but admittedly I am not as sharp and feel pretty depressed. I am able to hang in there for 9 to 10 hrs though when needed.I guess I'm one of the lucky ones as I don't have a dead

tissue issue. I hope my comments have helped. I see my Rhuematologist tomorrow at Northwestern. I hope he has a game plan to find some answers. At this point I have not heard any answers from any medical professional. Stay up and be well.. ..Lou Couldn't walk even with crutches! Bad Bad Flare Up.. Have a few questions:1. Has anyone had a bad flare up so bad that they couldn't walkbefore? (I did, and have them quite frequently. I have to roll

on acomputer chair to the bathroom! I've bought canes and crutches to helpassist, but its terrible when it gets that bad).2. Have you ever counted how many bumps you have on your body whenit's gotten bad? Last time I had over 34. Varying from the size of apenny to the size of a toilet paper roll width. They usually occur onmy legs and thighs, but also on my arms.3. What are your current medications to help treat EN? I was onSteroids straight for 6 months! Along with Azathroprine, Cultrazineand antibiotics. *note antibiotics made it worse**note was on birth control and antidepressants (Wellbutrin Xl) b/4being diagnosed with EN**note currently taking Dapsone, + Prednasone when bumps start arising**note been really tired, have B12 defiency did possess to high levelsof vit D*4.Are you able to work, having Erythema Nodosum? I'm having a reallyhard time trying to work. The bumps come and go, but

even after thenodules have calmed down and start to bruise, the actual bumps don'tgo away. I wonder if there is to much tissue damage. I can't be on myfeet anymore, not sure what type of job I should get now.5.Does anyone know of a therapy or testing that helps to dissolve thedead tissue cells? Acupuncture? I know if I lay in bed with hot/coldcompresses it helps, but I'm talking long term. Currently I'm seeing arhematologist, but I'm the most severe that he's ever seen. I'm scaredof getting pregnant b/c apparently it arises more frequently then.Any tips on living with this headache. My body feels like it's dying,even after the ER resolves!Email me if you want. Thanks for any tips in advance__________________________________________________

[Guest guest]

Glitter-Lip-Gloss,

I am so sorry to hear that you are having a bad flare up. I have had

EN for the past 7 years. I have had flareups that were so bad, I

couldn't walk. Rest sometimes helped, but the more I was off my

legs, the more it hurt when I stood up. I have tried ibuprofen and

have been on Predisone treatments which have helped.

I was also worried about being pregnant knowing that EN is common

during pregnancy (usually during the 2nd trimester). With my first

pregnancy, I did get EN, during the 2nd trimester. I didn't take any

medication, so it just ran it's course. But it was gone before the

3rd trimester. During my second pregnancy, I didn't get it at all.

Hope this helps.

Best,

>

> Have a few questions:

>

> 1. Has anyone had a bad flare up so bad that they couldn't walk

> before? (I did, and have them quite frequently. I have to roll on a

> computer chair to the bathroom! I've bought canes and crutches to

help

> assist, but its terrible when it gets that bad).

>

> 2. Have you ever counted how many bumps you have on your body when

> it's gotten bad? Last time I had over 34. Varying from the size of a

> penny to the size of a toilet paper roll width. They usually occur

on

> my legs and thighs, but also on my arms.

>

> 3. What are your current medications to help treat EN? I was on

> Steroids straight for 6 months! Along with Azathroprine, Cultrazine

> and antibiotics.

>

> *note antibiotics made it worse*

> *note was on birth control and antidepressants (Wellbutrin Xl) b/4

> being diagnosed with EN*

> *note currently taking Dapsone, + Prednasone when bumps start

arising*

> *note been really tired, have B12 defiency did possess to high

levels

> of vit D*

>

> 4.Are you able to work, having Erythema Nodosum? I'm having a really

> hard time trying to work. The bumps come and go, but even after the

> nodules have calmed down and start to bruise, the actual bumps don't

> go away. I wonder if there is to much tissue damage. I can't be on

my

> feet anymore, not sure what type of job I should get now.

>

> 5.Does anyone know of a therapy or testing that helps to dissolve

the

> dead tissue cells? Acupuncture? I know if I lay in bed with hot/cold

> compresses it helps, but I'm talking long term. Currently I'm

seeing a

> rhematologist, but I'm the most severe that he's ever seen. I'm

scared

> of getting pregnant b/c apparently it arises more frequently then.

>

> Any tips on living with this headache. My body feels like it's

dying,

> even after the ER resolves!

>

> Email me if you want. Thanks for any tips in advance

>

[Guest guest]

Hi from B Omaha, NE

Yes I have found it very diff to walk. and also

hard to walk w/crutches too. Hurts the armpits.

I have found it also hard to work I have to keep

my legs up and down all while I work. My feet

get cold tingling and painful. I am on pain meds

Tylox 1 tab 3x aday and Xanax 0.25 mg 3x aday.

I'm on steriods Predisone 10mg aday and have been

on antibotics and I have nodules all over both legs

from the knees down. And on my forarms and above the

elbows too.

I have been through dr's and finally I'm on FLMA

through my work. I am tired all the time bed rest

is the best I work at a dispatcher at ADT. Miagraines

are my worst part of EN. I get them all the time for

stress to the pain and discomfort. (so much fun) plz

check the other articles that we have about are

disease and they are very helpful. I hope been to a

RA dr and he is stumped. My dr is worried about my

diabetis too beening on Predisone for so long.

Good Luck mary b huskbear147@...

--- glitter_lip_gloss

wrote:

> Have a few questions:

>

> 1. Has anyone had a bad flare up so bad that they

> couldn't walk

> before? (I did, and have them quite frequently. I

> have to roll on a

> computer chair to the bathroom! I've bought canes

> and crutches to help

> assist, but its terrible when it gets that bad).

>

> 2. Have you ever counted how many bumps you have on

> your body when

> it's gotten bad? Last time I had over 34. Varying

> from the size of a

> penny to the size of a toilet paper roll width. They

> usually occur on

> my legs and thighs, but also on my arms.

>

> 3. What are your current medications to help treat

> EN? I was on

> Steroids straight for 6 months! Along with

> Azathroprine, Cultrazine

> and antibiotics.

>

> *note antibiotics made it worse*

> *note was on birth control and antidepressants

> (Wellbutrin Xl) b/4

> being diagnosed with EN*

> *note currently taking Dapsone, + Prednasone when

> bumps start arising*

> *note been really tired, have B12 defiency did

> possess to high levels

> of vit D*

>

> 4.Are you able to work, having Erythema Nodosum? I'm

> having a really

> hard time trying to work. The bumps come and go, but

> even after the

> nodules have calmed down and start to bruise, the

> actual bumps don't

> go away. I wonder if there is to much tissue damage.

> I can't be on my

> feet anymore, not sure what type of job I should get

> now.

>

> 5.Does anyone know of a therapy or testing that

> helps to dissolve the

> dead tissue cells? Acupuncture? I know if I lay in

> bed with hot/cold

> compresses it helps, but I'm talking long term.

> Currently I'm seeing a

> rhematologist, but I'm the most severe that he's

> ever seen. I'm scared

> of getting pregnant b/c apparently it arises more

> frequently then.

>

> Any tips on living with this headache. My body feels

> like it's dying,

> even after the ER resolves!

>

> Email me if you want. Thanks for any tips in advance

>

>

__________________________________________________

[Guest guest]

the appointment was a disappointment. I didn't get any answers just more blood tests. The dostor was talking about trying another heavy duty medication which I can't remember right now. I just don't want to feel like their experiment. I have tried Methotrexate, Cyclosporine and now Hydroxychloroquin in addition to Prednisone and Acyclovir. I can't say that any of them has worked, except Prednisone does help. I did speak to someone recently that told me that the Hydroxychloroquin did work after taking it for about a year. He was then able to tapper off the Prednisone. Most of the biopsies indicated that the tissue sample resembled EN or Vasculitis and

Panniculitis. The nodules I had recently were long and tube shaped so I asked about arterial thrombosis. That was not comfirmed either. Anyway, I wish you the best in finding out what condition you have. I've had just about every test known to science and I still don't have a definitive answer. Best of health to you and stay well...Lou [erythema_nodosum_ Group] Couldn't walk even with crutches! Bad Bad Flare Up.. Have a few questions:1. Has anyone had a bad flare up so bad that they couldn't walkbefore? (I did, and have them quite frequently. I have to roll

on acomputer chair to the bathroom! I've bought canes and crutches to helpassist, but its terrible when it gets that bad).2. Have you ever counted how many bumps you have on your body whenit's gotten bad? Last time I had over 34. Varying from the size of apenny to the size of a toilet paper roll width. They usually occur onmy legs and thighs, but also on my arms.3. What are your current medications to help treat EN? I was onSteroids straight for 6 months! Along with Azathroprine, Cultrazineand antibiotics. *note antibiotics made it worse**note was on birth control and antidepressants (Wellbutrin Xl) b/4being diagnosed with EN**note currently taking Dapsone, + Prednasone when bumps start arising**note been really tired, have B12 defiency did possess to high levelsof vit D*4.Are you able to work, having Erythema Nodosum? I'm having a reallyhard time trying to work. The

bumps come and go, but

even after thenodules have calmed down and start to bruise, the actual bumps don'tgo away. I wonder if there is to much tissue damage. I can't be on myfeet anymore, not sure what type of job I should get now.5.Does anyone know of a therapy or testing that helps to dissolve thedead tissue cells? Acupuncture? I know if I lay in bed with hot/coldcompresses it helps, but I'm talking long term. Currently I'm seeing arhematologist, but I'm the most severe that he's ever seen. I'm scaredof getting pregnant b/c apparently it arises more frequently then.Any tips on living with this headache. My body feels like it's dying,even after the ER resolves!Email me if you want. Thanks for any tips in advance____________ _________ _________ _________ _________ __

[Guest guest]

Hi Jon,

Tylox is the same as Percet an pain medication.

Well so far I am going to an RA dr he is stumped

and I changed to an diff gen pract dr.

I have learned more from this support group than

anywhere else. I also have Sarcoidosis too.

Most dr think i am out of my mind been to UNMC

they have no idea what Erythema Nodosum is. I am

thinking about going to mayo's clinic just think about

it. Thank you for your email mary

--- jon colby wrote:

> hey there mary i know omaha has incredible doctors

> and research going on......maybe you need to check

> around with other docs?? and what is tylox??

> colby (Omaha and New Orleans)

>

> mary baker wrote:

> Hi from B Omaha, NE

> Yes I have found it very diff to walk. and also

> hard to walk w/crutches too. Hurts the armpits.

> I have found it also hard to work I have to keep

> my legs up and down all while I work. My feet

> get cold tingling and painful. I am on pain meds

> Tylox 1 tab 3x aday and Xanax 0.25 mg 3x aday.

> I'm on steriods Predisone 10mg aday and have been

> on antibotics and I have nodules all over both legs

> from the knees down. And on my forarms and above the

> elbows too.

> I have been through dr's and finally I'm on FLMA

> through my work. I am tired all the time bed rest

> is the best I work at a dispatcher at ADT.

> Miagraines

> are my worst part of EN. I get them all the time for

> stress to the pain and discomfort. (so much fun) plz

> check the other articles that we have about are

> disease and they are very helpful. I hope been to a

> RA dr and he is stumped. My dr is worried about my

> diabetis too beening on Predisone for so long.

> Good Luck mary b huskbear147@...

>

> --- glitter_lip_gloss

> wrote:

>

> > Have a few questions:

> >

> > 1. Has anyone had a bad flare up so bad that they

> > couldn't walk

> > before? (I did, and have them quite frequently. I

> > have to roll on a

> > computer chair to the bathroom! I've bought canes

> > and crutches to help

> > assist, but its terrible when it gets that bad).

> >

> > 2. Have you ever counted how many bumps you have

> on

> > your body when

> > it's gotten bad? Last time I had over 34. Varying

> > from the size of a

> > penny to the size of a toilet paper roll width.

> They

> > usually occur on

> > my legs and thighs, but also on my arms.

> >

> > 3. What are your current medications to help treat

> > EN? I was on

> > Steroids straight for 6 months! Along with

> > Azathroprine, Cultrazine

> > and antibiotics.

> >

> > *note antibiotics made it worse*

> > *note was on birth control and antidepressants

> > (Wellbutrin Xl) b/4

> > being diagnosed with EN*

> > *note currently taking Dapsone, + Prednasone when

> > bumps start arising*

> > *note been really tired, have B12 defiency did

> > possess to high levels

> > of vit D*

> >

> > 4.Are you able to work, having Erythema Nodosum?

> I'm

> > having a really

> > hard time trying to work. The bumps come and go,

> but

> > even after the

> > nodules have calmed down and start to bruise, the

> > actual bumps don't

> > go away. I wonder if there is to much tissue

> damage.

> > I can't be on my

> > feet anymore, not sure what type of job I should

> get

> > now.

> >

> > 5.Does anyone know of a therapy or testing that

> > helps to dissolve the

> > dead tissue cells? Acupuncture? I know if I lay in

> > bed with hot/cold

> > compresses it helps, but I'm talking long term.

> > Currently I'm seeing a

> > rhematologist, but I'm the most severe that he's

> > ever seen. I'm scared

> > of getting pregnant b/c apparently it arises more

> > frequently then.

> >

> > Any tips on living with this headache. My body

> feels

> > like it's dying,

> > even after the ER resolves!

> >

> > Email me if you want. Thanks for any tips in

> advance

> >

> >

>

> __________________________________________________

>

[Guest guest]

>

> Just read your message and thought i'd answer your questions I've

only had EN since the start of the year so still in process of blood

tests, swabs, x-rays and specialists but was left to 'see if it goes

away' for 8 weeks by my doctor and without knowing about EN found it

very painfull and very scary, so glad i found this site to read other

people sugestions and coping skills,

1. Has anyone had a bad flare up so bad that they couldn't walk

> before? I got to the point where it was taking me a hour before i

could get down the stairs in the morning, a few days i couldn't get

back up the stairs so my partner had to make up a bed on the sofa for

me.

>

> 2. Have you ever counted how many bumps you have on your body when

> it's gotten bad? i've only had the lumps on my legs but i have had

joint pain terrible in my elbows and wrists as well as my legs and

feet. I did get bruises on my elbows but no lumps. I uploaded some

pic of my legs so you can see how the lumps changed through the weeks

same as the joint pain.

3. What are your current medications to help treat EN? I was on

> Steroids straight for 6 months! I got 30mg prednisolone to be taken

every day late on in my flare up but my doctor didn't want me to take

them as he wanted me to wait out seen as it was my first flare up so

he can see how it progresses and so that the specialist that i got

refered to could see what its like so got by on strong painkillers

and taking life slowly.

4.Are you able to work, having Erythema Nodosum?

Yes i was still able to work, I'm a designer so once i'm at work I'm

seated and can put my feet up, also no stairs to cope with i can take

the lift!

5.Does anyone know of a therapy or testing that helps to dissolve the

> dead tissue cells? Acupuncture?

Been new to EN I'm still finding new things out.

Any tips on living with this headache. My body feels like it's

dying, even after the ER resolves!?

I'm still taking pain killers for my legs so this also helps with my

headache, I also suffer with headaches and never have done before,

even went for my eyes testing to see if i needed my lenses up dateing

but told my eyes hadnt changed so it must just be another EN

benifit!! Great!

Take care and hope your coping alright, take things slowly, rest

plenty and pamper yourself!!

Kim.x.x

[Guest guest]

hey kim,

Just curious as to what kind of specialist you were referred to and what kind of pain meds are you on?? Can you not walk because of the nodules or your joints?

Dawn

Re: Couldn't walk even with crutches! Bad Bad Flare Up..

>> Just read your message and thought i'd answer your questions I've only had EN since the start of the year so still in process of blood tests, swabs, x-rays and specialists but was left to 'see if it goes away' for 8 weeks by my doctor and without knowing about EN found it very painfull and very scary, so glad i found this site to read other people sugestions and coping skills,1. Has anyone had a bad flare up so bad that they couldn't walk> before? I got to the point where it was taking me a hour before i could get down the stairs in the morning, a few days i couldn't get back up the stairs so my partner had to make up a bed on the sofa

for me.> > 2. Have you ever counted how many bumps you have on your body when> it's gotten bad? i've only had the lumps on my legs but i have had joint pain terrible in my elbows and wrists as well as my legs and feet. I did get bruises on my elbows but no lumps. I uploaded some pic of my legs so you can see how the lumps changed through the weeks same as the joint pain.3. What are your current medications to help treat EN? I was on> Steroids straight for 6 months! I got 30mg prednisolone to be taken every day late on in my flare up but my doctor didn't want me to take them as he wanted me to wait out seen as it was my first flare up so he can see how it progresses and so that the specialist that i got refered to could see what its like so got by on strong painkillers and taking life slowly.4.Are you able to work, having Erythema Nodosum?Yes i was still able to work,

I'm a designer so once i'm at work I'm seated and can put my feet up, also no stairs to cope with i can take the lift!5.Does anyone know of a therapy or testing that helps to dissolve the> dead tissue cells? Acupuncture? Been new to EN I'm still finding new things out.Any tips on living with this headache. My body feels like it's dying, even after the ER resolves!?I'm still taking pain killers for my legs so this also helps with my headache, I also suffer with headaches and never have done before, even went for my eyes testing to see if i needed my lenses up dateing but told my eyes hadnt changed so it must just be another EN benifit!! Great!Take care and hope your coping alright, take things slowly, rest plenty and pamper yourself!!Kim.x.x

__________________________________________________

[Guest guest]

Hi Dawn

I've been sent to the hospital for blood tests, swabs and chest Xray, I've also been refered to a Rheumatology Specialist and also a Dermatology Specialist. When my flare up was bad it wasn't the lumps that made walking hard, my legs were very hot and swollen but it was the pain in my feet and ankles that was the problem. I have been taking strong ibuprofen before bed time also first thing in the morning an throughout the day as well as taking life easy and keeping my legs elevated when ever i can. At the moment I have bruising to both legs but the past couple of days i've started getting the crap like pains on a morning in my right ankle and have noticed tiny red marks on my other leg under the bruising so it loos like i might be off again!!

Kim.x.x

[erythema_nodosum_ Group] Re: Couldn't walk even with crutches! Bad Bad Flare Up..

>> Just read your message and thought i'd answer your questions I've only had EN since the start of the year so still in process of blood tests, swabs, x-rays and specialists but was left to 'see if it goes away' for 8 weeks by my doctor and without knowing about EN found it very painfull and very scary, so glad i found this site to read other people sugestions and coping skills,1. Has anyone had a bad flare up so bad that they couldn't walk> before? I got to the point where it was taking me a hour before i could get down the stairs in the morning, a few days i couldn't get back up the stairs so my partner had to make up a bed on the sofa

for me.> > 2. Have you ever counted how many bumps you have on your body when> it's gotten bad? i've only had the lumps on my legs but i have had joint pain terrible in my elbows and wrists as well as my legs and feet. I did get bruises on my elbows but no lumps. I uploaded some pic of my legs so you can see how the lumps changed through the weeks same as the joint pain.3. What are your current medications to help treat EN? I was on> Steroids straight for 6 months! I got 30mg prednisolone to be taken every day late on in my flare up but my doctor didn't want me to take them as he wanted me to wait out seen as it was my first flare up so he can see how it progresses and so that the specialist that i got refered to could see what its like so got by on strong painkillers and taking life slowly.4.Are you able to work, having Erythema Nodosum?Yes i was still able to work,

I'm a designer so once i'm at work I'm seated and can put my feet up, also no stairs to cope with i can take the lift!5.Does anyone know of a therapy or testing that helps to dissolve the> dead tissue cells? Acupuncture? Been new to EN I'm still finding new things out.Any tips on living with this headache. My body feels like it's dying, even after the ER resolves!?I'm still taking pain killers for my legs so this also helps with my headache, I also suffer with headaches and never have done before, even went for my eyes testing to see if i needed my lenses up dateing but told my eyes hadnt changed so it must just be another EN benifit!! Great!Take care and hope your coping alright, take things slowly, rest plenty and pamper yourself!!Kim.x.x

____________ _________ _________ _________ _________ __