Re: enteropathic symtoms getting worse

[Guest guest]

Jeff,

It sounds like you are really in pain. You might run a couple of pain-management strategies by your doc, as I haven't followed your case (nor have I studied up on your conditions) to know any contraindications to certain modalities. I am a physical therapist, and I know that one modality that people suffering with arthritis really seem to get some relief from is paraffin wax. I am pretty sure you can get a home unit, heat up the wax, dip a hand in and wrap it up to keep the warmth confined around your hand for awhile (10-15 minutes or so), then repeat with the other side. It feels really nice, and although it just offers temporary relief, some people swear by it. Again, please check with your doc, as I don't know if there are any reasons why you should not try this.

Also, when you speak about the pain in your achilles tendons... Have you tried any sort of a night splint to hold your ankle at 90 degrees? During the night, we all sleep with our ankles extended, or at least somewhat pointed. Miniscule adhesions form along the tendon in this tightened state; then, when you wake up and weightbear, you are tearing these little adhesions, and it is, as you know, very painful. The inflammation from the arthritis only exacerbates this process. You can get ahold of (at a medical supply store, online, and probably even on ebay) a splint to hold your foot so that, if you were lying on your back, your toes would point straight up (90 degrees). Some of these splints are as simple as a tube-sock with a strap from the tip of the toe to your knee; some can be pretty bulky and involved. You would definitely have to find one that wouldn't negatively affect your EN, which may be close to impossible, but this is also something you might wish to ask a rheumatologist or even just your PCP.

I hope that these suggestions might help alleviate some of your pain.

God bless,

Sara

enteropathic symtoms getting worse

hi rebecca and group,since there are so many memebers here and some with similarconditions, i have a question to ask of you.most of you know my situation. cd with enteropathic symtoms, skin,eye and joint.my enterpathic arthritis has been getting worse. bad enough that ihad to put a lidocaine patch on my elbow today. i haven't used thesein 3 years! most of my joint/tendon pain is in my elbows, achilliestendons and end joints of my fingers.i had my elbow in a heating pad last nite. when i woke up thismorning, if i moved it, it hurt like all get out.my doc told me to take my lodine every day. i used to just take it asneeded. i have been taking my lodine every day for 2 weeks and itdoes not seem to be helping. after my last remicade treatment, i waspretty good for 3 weeks, then it went down hill. i also takemethotrexate.my thought was to go see a rheumatologist. i know of one that alsospecializes in pain management. any other thoughts?love,jeff

[Guest guest]

Jeff,

It sounds like you are really in pain. You might run a couple of pain-management strategies by your doc, as I haven't followed your case (nor have I studied up on your conditions) to know any contraindications to certain modalities. I am a physical therapist, and I know that one modality that people suffering with arthritis really seem to get some relief from is paraffin wax. I am pretty sure you can get a home unit, heat up the wax, dip a hand in and wrap it up to keep the warmth confined around your hand for awhile (10-15 minutes or so), then repeat with the other side. It feels really nice, and although it just offers temporary relief, some people swear by it. Again, please check with your doc, as I don't know if there are any reasons why you should not try this.

Also, when you speak about the pain in your achilles tendons... Have you tried any sort of a night splint to hold your ankle at 90 degrees? During the night, we all sleep with our ankles extended, or at least somewhat pointed. Miniscule adhesions form along the tendon in this tightened state; then, when you wake up and weightbear, you are tearing these little adhesions, and it is, as you know, very painful. The inflammation from the arthritis only exacerbates this process. You can get ahold of (at a medical supply store, online, and probably even on ebay) a splint to hold your foot so that, if you were lying on your back, your toes would point straight up (90 degrees). Some of these splints are as simple as a tube-sock with a strap from the tip of the toe to your knee; some can be pretty bulky and involved. You would definitely have to find one that wouldn't negatively affect your EN, which may be close to impossible, but this is also something you might wish to ask a rheumatologist or even just your PCP.

I hope that these suggestions might help alleviate some of your pain.

God bless,

Sara

enteropathic symtoms getting worse

hi rebecca and group,since there are so many memebers here and some with similarconditions, i have a question to ask of you.most of you know my situation. cd with enteropathic symtoms, skin,eye and joint.my enterpathic arthritis has been getting worse. bad enough that ihad to put a lidocaine patch on my elbow today. i haven't used thesein 3 years! most of my joint/tendon pain is in my elbows, achilliestendons and end joints of my fingers.i had my elbow in a heating pad last nite. when i woke up thismorning, if i moved it, it hurt like all get out.my doc told me to take my lodine every day. i used to just take it asneeded. i have been taking my lodine every day for 2 weeks and itdoes not seem to be helping. after my last remicade treatment, i waspretty good for 3 weeks, then it went down hill. i also takemethotrexate.my thought was to go see a rheumatologist. i know of one that alsospecializes in pain management. any other thoughts?love,jeff

[Guest guest]

Hi Jeff,

Sorry to hear that you are in so much pain.

You might ask one of the online doctor sites for their advice:

http://health.groups.yahoo.com/group/erythema_nodosum_Group/links/Doctors_001140\

979371/

I hope you can get this pain handled soon.

Love,

[Guest guest]

Hi Jeff,

Sorry to hear that you are in so much pain.

You might ask one of the online doctor sites for their advice:

http://health.groups.yahoo.com/group/erythema_nodosum_Group/links/Doctors_001140\

979371/

I hope you can get this pain handled soon.

Love,

[Guest guest]

hi sara,

thanks for your response. can i use this wax on my elbows? lol. when

i used the heating pad the other nite, i woke up with my elbow feeling

much worse. is there a trick to the wax or is it just a method of

heat? my fingers are the least of my issues. i was just noting the

principle places the enteropathic arthritis tends to fall. my elbows

are worst now. i " normally " don't have much issue with the achillies

in the morning. and i have heard about those adhesions, sometimes

they are an issue. but, it is usually when i have some active period,

walking, etc., then sit, let's say at my desk for a while then i try

to stand up and walk again. once i get beyond that, it is okay until

the next time i sit for a period and try to stand up and walk again.

i am an engineer, so i have pretty much equal periods of desk work and

then activity. i tend to be real hands-on type person, so i end up

doing a fair amount of physical work, walking, stooping, lifting and

then have periods of inactivity, working at my pc in the office.

print something off, get up to walk across the room to the " community "

printer, etc.

i have written up my medical history, rebecca has it in her archives.

it isn't too long, but basically is cd, pg, enteropathic arthritis

and episcleritis. i take remicade, methotrexate and lodine as

principle meds.

i appreciate you taking the time to make suggestions for me. i am

thinking maybe i need someone to look at this with me more closely to

see exactly what is going on in these joints or with these tendons.

maybe me and the doc need to then experiment somemore. it is great

that my cd, pg and eye problem is under control, but to get up and go

to work everyday and live with the same cronic pain is getting really old.

take care,

jeff

>

> Jeff,

>

> It sounds like you are really in pain. You might run a couple of

pain-management strategies by your doc, as I haven't followed your

case (nor have I studied up on your conditions) to know any

contraindications to certain modalities. I am a physical therapist,

and I know that one modality that people suffering with arthritis

really seem to get some relief from is paraffin wax. I am pretty sure

you can get a home unit, heat up the wax, dip a hand in and wrap it up

to keep the warmth confined around your hand for awhile (10-15 minutes

or so), then repeat with the other side. It feels really nice, and

although it just offers temporary relief, some people swear by it.

Again, please check with your doc, as I don't know if there are any

reasons why you should not try this.

>

> Also, when you speak about the pain in your achilles tendons...

Have you tried any sort of a night splint to hold your ankle at 90

degrees? During the night, we all sleep with our ankles extended, or

at least somewhat pointed. Miniscule adhesions form along the tendon

in this tightened state; then, when you wake up and weightbear, you

are tearing these little adhesions, and it is, as you know, very

painful. The inflammation from the arthritis only exacerbates this

process. You can get ahold of (at a medical supply store, online, and

probably even on ebay) a splint to hold your foot so that, if you were

lying on your back, your toes would point straight up (90 degrees).

Some of these splints are as simple as a tube-sock with a strap from

the tip of the toe to your knee; some can be pretty bulky and

involved. You would definitely have to find one that wouldn't

negatively affect your EN, which may be close to impossible, but this

is also something you might wish to ask a rheumatologist or even just

your PCP.

>

> I hope that these suggestions might help alleviate some of your pain.

>

> God bless,

> Sara

[Guest guest]

hi sara,

thanks for your response. can i use this wax on my elbows? lol. when

i used the heating pad the other nite, i woke up with my elbow feeling

much worse. is there a trick to the wax or is it just a method of

heat? my fingers are the least of my issues. i was just noting the

principle places the enteropathic arthritis tends to fall. my elbows

are worst now. i " normally " don't have much issue with the achillies

in the morning. and i have heard about those adhesions, sometimes

they are an issue. but, it is usually when i have some active period,

walking, etc., then sit, let's say at my desk for a while then i try

to stand up and walk again. once i get beyond that, it is okay until

the next time i sit for a period and try to stand up and walk again.

i am an engineer, so i have pretty much equal periods of desk work and

then activity. i tend to be real hands-on type person, so i end up

doing a fair amount of physical work, walking, stooping, lifting and

then have periods of inactivity, working at my pc in the office.

print something off, get up to walk across the room to the " community "

printer, etc.

i have written up my medical history, rebecca has it in her archives.

it isn't too long, but basically is cd, pg, enteropathic arthritis

and episcleritis. i take remicade, methotrexate and lodine as

principle meds.

i appreciate you taking the time to make suggestions for me. i am

thinking maybe i need someone to look at this with me more closely to

see exactly what is going on in these joints or with these tendons.

maybe me and the doc need to then experiment somemore. it is great

that my cd, pg and eye problem is under control, but to get up and go

to work everyday and live with the same cronic pain is getting really old.

take care,

jeff

>

> Jeff,

>

> It sounds like you are really in pain. You might run a couple of

pain-management strategies by your doc, as I haven't followed your

case (nor have I studied up on your conditions) to know any

contraindications to certain modalities. I am a physical therapist,

and I know that one modality that people suffering with arthritis

really seem to get some relief from is paraffin wax. I am pretty sure

you can get a home unit, heat up the wax, dip a hand in and wrap it up

to keep the warmth confined around your hand for awhile (10-15 minutes

or so), then repeat with the other side. It feels really nice, and

although it just offers temporary relief, some people swear by it.

Again, please check with your doc, as I don't know if there are any

reasons why you should not try this.

>

> Also, when you speak about the pain in your achilles tendons...

Have you tried any sort of a night splint to hold your ankle at 90

degrees? During the night, we all sleep with our ankles extended, or

at least somewhat pointed. Miniscule adhesions form along the tendon

in this tightened state; then, when you wake up and weightbear, you

are tearing these little adhesions, and it is, as you know, very

painful. The inflammation from the arthritis only exacerbates this

process. You can get ahold of (at a medical supply store, online, and

probably even on ebay) a splint to hold your foot so that, if you were

lying on your back, your toes would point straight up (90 degrees).

Some of these splints are as simple as a tube-sock with a strap from

the tip of the toe to your knee; some can be pretty bulky and

involved. You would definitely have to find one that wouldn't

negatively affect your EN, which may be close to impossible, but this

is also something you might wish to ask a rheumatologist or even just

your PCP.

>

> I hope that these suggestions might help alleviate some of your pain.

>

> God bless,

> Sara

[Guest guest]

hi sara,

thanks for your response. can i use this wax on my elbows? lol. when

i used the heating pad the other nite, i woke up with my elbow feeling

much worse. is there a trick to the wax or is it just a method of

heat? my fingers are the least of my issues. i was just noting the

principle places the enteropathic arthritis tends to fall. my elbows

are worst now. i " normally " don't have much issue with the achillies

in the morning. and i have heard about those adhesions, sometimes

they are an issue. but, it is usually when i have some active period,

walking, etc., then sit, let's say at my desk for a while then i try

to stand up and walk again. once i get beyond that, it is okay until

the next time i sit for a period and try to stand up and walk again.

i am an engineer, so i have pretty much equal periods of desk work and

then activity. i tend to be real hands-on type person, so i end up

doing a fair amount of physical work, walking, stooping, lifting and

then have periods of inactivity, working at my pc in the office.

print something off, get up to walk across the room to the " community "

printer, etc.

i have written up my medical history, rebecca has it in her archives.

it isn't too long, but basically is cd, pg, enteropathic arthritis

and episcleritis. i take remicade, methotrexate and lodine as

principle meds.

i appreciate you taking the time to make suggestions for me. i am

thinking maybe i need someone to look at this with me more closely to

see exactly what is going on in these joints or with these tendons.

maybe me and the doc need to then experiment somemore. it is great

that my cd, pg and eye problem is under control, but to get up and go

to work everyday and live with the same cronic pain is getting really old.

take care,

jeff

>

> Jeff,

>

> It sounds like you are really in pain. You might run a couple of

pain-management strategies by your doc, as I haven't followed your

case (nor have I studied up on your conditions) to know any

contraindications to certain modalities. I am a physical therapist,

and I know that one modality that people suffering with arthritis

really seem to get some relief from is paraffin wax. I am pretty sure

you can get a home unit, heat up the wax, dip a hand in and wrap it up

to keep the warmth confined around your hand for awhile (10-15 minutes

or so), then repeat with the other side. It feels really nice, and

although it just offers temporary relief, some people swear by it.

Again, please check with your doc, as I don't know if there are any

reasons why you should not try this.

>

> Also, when you speak about the pain in your achilles tendons...

Have you tried any sort of a night splint to hold your ankle at 90

degrees? During the night, we all sleep with our ankles extended, or

at least somewhat pointed. Miniscule adhesions form along the tendon

in this tightened state; then, when you wake up and weightbear, you

are tearing these little adhesions, and it is, as you know, very

painful. The inflammation from the arthritis only exacerbates this

process. You can get ahold of (at a medical supply store, online, and

probably even on ebay) a splint to hold your foot so that, if you were

lying on your back, your toes would point straight up (90 degrees).

Some of these splints are as simple as a tube-sock with a strap from

the tip of the toe to your knee; some can be pretty bulky and

involved. You would definitely have to find one that wouldn't

negatively affect your EN, which may be close to impossible, but this

is also something you might wish to ask a rheumatologist or even just

your PCP.

>

> I hope that these suggestions might help alleviate some of your pain.

>

> God bless,

> Sara

[Guest guest]

thanks rebecca,

i will consider doing that.

jeff

>

> Hi Jeff,

> Sorry to hear that you are in so much pain.

>

> You might ask one of the online doctor sites for their advice:

>

>

http://health.groups.yahoo.com/group/erythema_nodosum_Group/links/Doctors_001140\

979371/

>

> I hope you can get this pain handled soon.

>

> Love,

>

>

[Guest guest]

thanks rebecca,

i will consider doing that.

jeff

>

> Hi Jeff,

> Sorry to hear that you are in so much pain.

>

> You might ask one of the online doctor sites for their advice:

>

>

http://health.groups.yahoo.com/group/erythema_nodosum_Group/links/Doctors_001140\

979371/

>

> I hope you can get this pain handled soon.

>

> Love,

>

>

[Guest guest]

thanks rebecca,

i will consider doing that.

jeff

>

> Hi Jeff,

> Sorry to hear that you are in so much pain.

>

> You might ask one of the online doctor sites for their advice:

>

>

http://health.groups.yahoo.com/group/erythema_nodosum_Group/links/Doctors_001140\

979371/

>

> I hope you can get this pain handled soon.

>

> Love,

>

>

[Guest guest]

Hi Jeff,

Just by way of encouragement, I want to mention that my rheumatologist recently mentioned that there are even newer treatments than TNF inhibitors (remicade and enbrel) now so that those who stop benefitting from them can be offered the newer treatments.

I just got done, last week, with a surgical biopsy (left breast) because cancer was suspected. Just this afternoon I got the news that it was benign--not cancer!! I'm continuing to take my RA drugs which, as you know, can slow healing but I seem to be really doing good on recovery--thank heavens! Now let's hear some good news from you! Do go see a rheumatologist, please! Get better! Well, and also go to a pain specialist if that's what it takes to improve your quality of life--leave no stone unturned!

lie

[Guest guest]

thanks rosalie,

you're a doll! what newer treatments? rebecca, research time! and i

thought i knew all about this too. my lodine is not working so i

think i will likely have to reach beyond my current meds.

jeff

>

> Hi Jeff,

>

> Just by way of encouragement, I want to mention that my rheumatologist

> recently mentioned that there are even newer treatments than TNF

inhibitors

> (remicade and enbrel) now so that those who stop benefitting from

them can be

> offered the newer treatments.

>

> I just got done, last week, with a surgical biopsy (left breast)

because

> cancer was suspected. Just this afternoon I got the news that it was

> benign--not cancer!! I'm continuing to take my RA drugs which, as

you know, can slow

> healing but I seem to be really doing good on recovery--thank

heavens! Now

> let's hear some good news from you! Do go see a rheumatologist,

please! Get

> better! Well, and also go to a pain specialist if that's what it

takes to

> improve your quality of life--leave no stone unturned!

>

> lie

>

[Guest guest]

thanks rosalie,

you're a doll! what newer treatments? rebecca, research time! and i

thought i knew all about this too. my lodine is not working so i

think i will likely have to reach beyond my current meds.

jeff

>

> Hi Jeff,

>

> Just by way of encouragement, I want to mention that my rheumatologist

> recently mentioned that there are even newer treatments than TNF

inhibitors

> (remicade and enbrel) now so that those who stop benefitting from

them can be

> offered the newer treatments.

>

> I just got done, last week, with a surgical biopsy (left breast)

because

> cancer was suspected. Just this afternoon I got the news that it was

> benign--not cancer!! I'm continuing to take my RA drugs which, as

you know, can slow

> healing but I seem to be really doing good on recovery--thank

heavens! Now

> let's hear some good news from you! Do go see a rheumatologist,

please! Get

> better! Well, and also go to a pain specialist if that's what it

takes to

> improve your quality of life--leave no stone unturned!

>

> lie

>

[Guest guest]

thanks rosalie,

you're a doll! what newer treatments? rebecca, research time! and i

thought i knew all about this too. my lodine is not working so i

think i will likely have to reach beyond my current meds.

jeff

>

> Hi Jeff,

>

> Just by way of encouragement, I want to mention that my rheumatologist

> recently mentioned that there are even newer treatments than TNF

inhibitors

> (remicade and enbrel) now so that those who stop benefitting from

them can be

> offered the newer treatments.

>

> I just got done, last week, with a surgical biopsy (left breast)

because

> cancer was suspected. Just this afternoon I got the news that it was

> benign--not cancer!! I'm continuing to take my RA drugs which, as

you know, can slow

> healing but I seem to be really doing good on recovery--thank

heavens! Now

> let's hear some good news from you! Do go see a rheumatologist,

please! Get

> better! Well, and also go to a pain specialist if that's what it

takes to

> improve your quality of life--leave no stone unturned!

>

> lie

>

[Guest guest]

Hi Jeff and lie,

First off, Congrats on the test results, ie! I'm sure you are so

relieved!

I did find this link:

http://patients.uptodate.com/topic.asp?file=arth_rhe/7229

Seems pretty up to date. Are these the newer treatments you were

referring to, lie?

Love,

[Guest guest]

Jeff, I don't know what specifically the new drugs are, it's just what my rheumy told me when I was asking about what happens to people when the TNF inhibitors fail. I get the Medscape Rehumatology newsletter weekly, but haven't seen anything specific there, yet, or I don't remember it. On top of it all, I've recently changed rheumatologists so it would be kind of hard to ask the one who told me that. He has moved on to his own practice so I may be able to catch up with him later. If you can find a good rheumy, I'll bet they'll know. Rheumatology seems to be a fast moving field right now, in terms of lots of new developments--wish they'd find some cures!!!

lie

[Guest guest]

Jeff, I don't know what specifically the new drugs are, it's just what my rheumy told me when I was asking about what happens to people when the TNF inhibitors fail. I get the Medscape Rehumatology newsletter weekly, but haven't seen anything specific there, yet, or I don't remember it. On top of it all, I've recently changed rheumatologists so it would be kind of hard to ask the one who told me that. He has moved on to his own practice so I may be able to catch up with him later. If you can find a good rheumy, I'll bet they'll know. Rheumatology seems to be a fast moving field right now, in terms of lots of new developments--wish they'd find some cures!!!

lie

[Guest guest]

Jeff, I don't know what specifically the new drugs are, it's just what my rheumy told me when I was asking about what happens to people when the TNF inhibitors fail. I get the Medscape Rehumatology newsletter weekly, but haven't seen anything specific there, yet, or I don't remember it. On top of it all, I've recently changed rheumatologists so it would be kind of hard to ask the one who told me that. He has moved on to his own practice so I may be able to catch up with him later. If you can find a good rheumy, I'll bet they'll know. Rheumatology seems to be a fast moving field right now, in terms of lots of new developments--wish they'd find some cures!!!

lie