Not taking MTX question

[Guest guest]

Hi all,

I stopped my MTX after severe hair loss. Been six weeks now. My

Rheumy also switched me to Humira from Enbrel a month ago because I

had been on Enbrel for over a year (was in the TEAR Study) and it was

not really working well for me. I take 5 mg of Pred a day along

w/the bi-weekly Humira. I want to reduce the Pred also, but am

giving the Humira more time so am not considering a reduction of the

Pred yet.

While my fingers are still swollen (but not horribly) and I still am

very stiff in the legs when I get up from my desk at work (have to

work about 30 ft to feel ok), I am feeling pretty good most of the

time. I rarely take anything for pain unless I have overdone yard

work, etc. I have had no real issues since starting the Humira

except a bit of hand/feet pain when we had severe thunderstorms and

weather changes.

I really prefer to take less drugs than more so I really do not want

to consider going back on the MTX unless I have to.

Are there those of you who do not take MTX and are on a biologic and

do well? What about reducing or eliminating the Pred on a biologic?

I am of course waiting for the other shoe to drop

Thanks in advance,

[Guest guest]

Hi - I took Remicade for YEARS without MTX. Then when I thought it wasnt working for me anymore, I broke down and started taking it because the RD insisted. I started off on 6 pills a week and gradually decreased that on my own to two pills once a week. I get by fine that way. I took a mega multi vitamin with everything but the kitchen sink in it, but found I cant swallow them anymore so I rely on flinstones or other chewables. I make sure it includes folic acid, biotin and pantholinic acid as well as other things. I use a keratin and green tea spray to add strength to the hair. It does seem to help. I also use biolage volumizing shampoo without conditioner and add some biolage shine spray for conditioner. I also highly recommend a hair straightener. I like conair 3/4 ceramic coated. It conditions hair and seals the cuticle which is important. My hair on top is very very thin so I let it grow and style it to the side to cover the thinness. It helps. I had to let my hair dry naturally for a while so it wouldnt break. Not using a brush can be a good thing, or using a coated brush helps prevent breakage. Wet hair tends to break the most when styling. Goodluck, Deborah

On 6/22/06, pretty24355 <kfonseca@...> wrote:

Hi all,I stopped my MTX after severe hair loss. Been six weeks now. My Rheumy also switched me to Humira from Enbrel a month ago because I had been on Enbrel for over a year (was in the TEAR Study) and it was not really working well for me. I take 5 mg of Pred a day along w/the bi-weekly Humira. I want to reduce the Pred also, but am giving the Humira more time so am not considering a reduction of the Pred yet. While my fingers are still swollen (but not horribly) and I still am very stiff in the legs when I get up from my desk at work (have to work about 30 ft to feel ok), I am feeling pretty good most of the

time. I rarely take anything for pain unless I have overdone yard work, etc. I have had no real issues since starting the Humira except a bit of hand/feet pain when we had severe thunderstorms and weather changes.

I really prefer to take less drugs than more so I really do not want to consider going back on the MTX unless I have to. Are there those of you who do not take MTX and are on a biologic and do well? What about reducing or eliminating the Pred on a biologic? I am of course waiting for the other shoe to drop :)Thanks in advance,

[Guest guest]

I stopped my MTX after I just couldn't handle the side effects anymore. I had two days of nausea, exhaustion, headaches, etc. When I stopped the MTX my doctor switched me to sulfasalizine. I've been taking Humira for about 6 months but had to stop the Humira a few times because I got colds which lasted for weeks.

I'm having a lot more pain since I stopped the MTX and have considered going back on it. I'm not waking up stiff but I'm having a lot more pain and swelling throughout the day.

Last appointment my doc sent me for x-rays of my feet and hands to see if there have been any changes. Next appointment we're probably going to switch to one of the other biologics/TNFs and we'll probably stop the sulfasalizine. I'm not sure what else we're going to change (I'm also on plaquinil and voltarin and folic acid) but he is trying to find a way to keep me off the MTX. He's never given me steroids.

Next appointment is July 6th so we'll see what happens then.

On 6/22/06, pretty24355 <kfonseca@...> wrote:

Hi all,I stopped my MTX after severe hair loss. Been six weeks now. My Rheumy also switched me to Humira from Enbrel a month ago because I had been on Enbrel for over a year (was in the TEAR Study) and it was not really working well for me. I take 5 mg of Pred a day along w/the bi-weekly Humira. I want to reduce the Pred also, but am giving the Humira more time so am not considering a reduction of the Pred yet. While my fingers are still swollen (but not horribly) and I still am very stiff in the legs when I get up from my desk at work (have to work about 30 ft to feel ok), I am feeling pretty good most of the

time. I rarely take anything for pain unless I have overdone yard work, etc. I have had no real issues since starting the Humira except a bit of hand/feet pain when we had severe thunderstorms and weather changes.

I really prefer to take less drugs than more so I really do not want to consider going back on the MTX unless I have to. Are there those of you who do not take MTX and are on a biologic and do well? What about reducing or eliminating the Pred on a biologic? I am of course waiting for the other shoe to drop :)Thanks in advance,

[Guest guest]

I’ve had no trouble with

Methotrexate but I have read of many others who do have trouble. Some of them

report that by reducing the dose of Methotrexate they still get appreciable

benefit with much less side effects. If you decide to go back on Methotrexate

you might consider using a lower dose at least to begin with to see if that

works better as a compromise. I hope you get good relief. God bless.

From: Rheumatoid Arthritis [mailto:Rheumatoid Arthritis ] On Behalf Of Krauss

Sent: Friday, June 23, 2006 8:53

AM

Rheumatoid Arthritis

Subject: Re:

Not taking MTX question

I stopped my MTX after I just couldn't handle the side effects

anymore. I had two days of nausea, exhaustion, headaches, etc. When

I stopped the MTX my doctor switched me to sulfasalizine. I've been

taking Humira for about 6 months but had to stop the Humira a few times because

I got colds which lasted for weeks.

I'm having a lot more pain since I stopped the MTX and have considered

going back on it. I'm not waking up stiff but I'm having a lot more pain

and swelling throughout the day.

Last appointment my doc sent me for x-rays of my feet and hands to see

if there have been any changes. Next appointment we're probably going to

switch to one of the other biologics/TNFs and we'll probably stop the

sulfasalizine. I'm not sure what else we're going to change (I'm also on

plaquinil and voltarin and folic acid) but he is trying to find a way to keep

me off the MTX. He's never given me steroids.

Next appointment is July 6th so we'll see what happens then.

_._,___

[Guest guest]

I stopped the MTX because my side effects never stopped. I was told that after awhile my body would adjust.... not mine! I was sick for 2-3 days out of the week and that isn't possible with 3 girls to care for. Not to forget the hair loss. I am Italian and have THICK hair and after a few months of MTX I felt like a bald baby.

I went to the doctor yesterday and will start a 14 day course of the dreaded prednisone and if I see a difference then he said he will have me inject the Humira every 7 days and add another med, he didn't say what.

Just as I was started to lose a few pounds, I get prescribed this. Oh joy!

.._.-'¯(_._.-'¯(_ ._.-'¯(_._.-'¯(_Enjoying the Dog Days of Summer!....¢¢¢,...¢¢¢, ..¢¢¢,....((*"*)) §*"*§.((*"*)).(¯D.C¯)(¯D.C¯)(¯D-C¯)~~~~~(¯¯¯¯¯)(¯¯¯¯¯)(¯¯¯¯¯)~~~~~sesm..|-I-|..|-I-|..|¯I¯|.›‹3"‹`-"-'..`-"-'..`-"-' © © Alli_)¯'-._._)¯'-._._)¯'-._._)¯'-._._)¯'-._._)¯'-._.

[Guest guest]

If you were never on steroids, that might be just the thing. Just a few milligrams can make all the difference. Add Ibuprofen to your routine to help with pain also. I take MTX 2 pills one night a week. No side effects as long as I drink lots of fluids. If you decide to change to Remicade which is only once every 8 weeks be sure to drink a ton of fluids while you are infusing, including gatorade. Steriod I take in the day when I am active and just 1 milligram at night along with plaquenil and ibuprofen. It does help. Start off on steriod SLOW. Doctors like to throw a ton of it at you. You will experience metabolic side effects but can counteract those or not have them at all if you start with 1 mg working up to 3- 5mg AM and 1 mg PM. My doctor started me on 1 mg to start and then added another 1 mg a week until I was up to six. There are alot of things doctors dont tell you when on steriod. Your body should be able to metabolize the drug as long as you eat healthy, force fluids and stay active to burn it off. I slept 12 hours today and some days I just do that. Hot Humid weather I guess. Google search on prednisone and see what research you can find. Feel free to email me for any additional information. Hugs, Deborah P.S. Have you tried Arava? Discuss that with your Doctor if sulfa isnt doing anything. It works well for some people. On 6/23/06, Krauss <

sekrauss@...> wrote:

I stopped my MTX after I just couldn't handle the side effects anymore. I had two days of nausea, exhaustion, headaches, etc. When I stopped the MTX my doctor switched me to sulfasalizine. I've been taking Humira for about 6 months but had to stop the Humira a few times because I got colds which lasted for weeks.

I'm having a lot more pain since I stopped the MTX and have considered going back on it. I'm not waking up stiff but I'm having a lot more pain and swelling throughout the day.

Last appointment my doc sent me for x-rays of my feet and hands to see if there have been any changes. Next appointment we're probably going to switch to one of the other biologics/TNFs and we'll probably stop the sulfasalizine. I'm not sure what else we're going to change (I'm also on plaquinil and voltarin and folic acid) but he is trying to find a way to keep me off the MTX. He's never given me steroids.

Next appointment is July 6th so we'll see what happens then.

On 6/22/06, pretty24355 <

kfonseca@...> wrote:

Hi all,I stopped my MTX after severe hair loss. Been six weeks now. My Rheumy also switched me to Humira from Enbrel a month ago because I had been on Enbrel for over a year (was in the TEAR Study) and it was not really working well for me. I take 5 mg of Pred a day along w/the bi-weekly Humira. I want to reduce the Pred also, but am giving the Humira more time so am not considering a reduction of the Pred yet. While my fingers are still swollen (but not horribly) and I still am very stiff in the legs when I get up from my desk at work (have to work about 30 ft to feel ok), I am feeling pretty good most of the

time. I rarely take anything for pain unless I have overdone yard work, etc. I have had no real issues since starting the Humira except a bit of hand/feet pain when we had severe thunderstorms and weather changes.

I really prefer to take less drugs than more so I really do not want to consider going back on the MTX unless I have to. Are there those of you who do not take MTX and are on a biologic and do well? What about reducing or eliminating the Pred on a biologic? I am of course waiting for the other shoe to drop :)Thanks in advance,

[Guest guest]

I cringe every time I hear of a Prednisone Medrol pack being given out. Manipulating your metabolism like this is dangerous. Its an outdated method to ease inflammation and pain. Why cant they start you off slowly. If the humira isnt working, try remicade or the b cell injectible. Being on a steady maintenance dose of prednisone as I stated in another email is an option but apparently your RD thinks otherwise. If the Dr. prescribed MTX in a high dose, it means that the Humira isnt doing its job. Find another biologic and use a different immunosuppressant such as arava or imuran. Also discuss cyclosporine with him. It worked for me for many years before I started on Remicade. I hope you feel better soon. Hugs, Deborah

On 6/23/06, nic77727@... <nic77727@...> wrote:

I stopped the MTX because my side effects never stopped. I was told that after awhile my body would adjust.... not mine! I was sick for 2-3 days out of the week and that isn't possible with 3 girls to care for. Not to forget the hair loss. I am Italian and have THICK hair and after a few months of MTX I felt like a bald baby.

I went to the doctor yesterday and will start a 14 day course of the dreaded prednisone and if I see a difference then he said he will have me inject the Humira every 7 days and add another med, he didn't say what.

Just as I was started to lose a few pounds, I get prescribed this. Oh joy!

.._.-'

¯(_._.-'

¯(_ N

icol

e ._.-'¯

(_._.-'¯

(_Enjoying the Dog Days of Summer!

.....¢¢¢,...¢¢¢

, ..¢¢¢,....

((* " *

)) §*

" *§.

((* " *

)).(¯D.

C¯)(¯D.C¯)

(¯D-C¯)~~~~~

(¯¯¯¯¯)(¯¯¯¯¯)(¯¯¯¯¯)~~~~~

sesm..|-I-|..

|-I-|..|

¯I¯|

..›‹3 " ‹

`- " -'..`- " -'

...`- " -' ©

© Alli

_)¯'-

.._._)¯'-

.._._)¯'-

.._._)¯'-

.._._)¯'-

.._._)¯'-

.._.

[Guest guest]

Everyone is different and some people need

Prednisone so they can function. I agree with Deborah if the medication is

given just to feel better but I disagree if it is needed so the people can

function as they need to. God bless.

From: Rheumatoid Arthritis [mailto:Rheumatoid Arthritis ] On Behalf Of Deborah Bargad

Sent: Saturday, June 24, 2006 1:18

AM

Rheumatoid Arthritis

Subject: Re:

Not taking MTX question

I cringe every time I hear of a Prednisone Medrol pack being given

out. Manipulating your metabolism like this is dangerous. Its an

outdated method to ease inflammation and pain. Why cant they

start you off slowly. If the humira isnt working, try remicade or the b

cell injectible. Being on a steady maintenance dose of prednisone as I

stated in another email is an option but apparently your RD thinks

otherwise. If the Dr. prescribed MTX in a high dose, it means that the

Humira isnt doing its job. Find another biologic and use a different

immunosuppressant such as arava or imuran. Also discuss cyclosporine with

him. It worked for me for many years before I started on

Remicade. I hope you feel better soon. Hugs, Deborah

_,_._,___

[Guest guest]

Hi , I have been on Remicade for 6 years. After 3 months on Remicade way back in 2000 I was able to reduce the Prednisone. I had been on 80 mg for the 1st month after I was dx'd. Remicade allowed me to reduce to 10 mg. It took along time to get below 10mg. My rheumy at the time didn't want to reduce the pred. if I was in a high stress time. For awhile I had a family death every 6 months plus a job loss, a broken heart and a bunch of other insanity. Below 5 mg I have reduced by .5 mg each step down. I've been on 2mg for 6 months. I wanted to be completely off the Pred by my wedding, which was May 27th, but then my rheumy died & I spiraled down into a fit of depression that I'm slowly coming out of. I'll probably be off pred at the end of the summer (I still have 100+ thank you notes to write! Take care, Steph in VApretty24355

<kfonseca@...> wrote: Hi all,I really prefer to take less drugs than more so I really do not want to consider going back on the MTX unless I have to. Are there those of you who do not take MTX and are on a biologic and do well? What about reducing or eliminating the Pred on a biologic? I am of course waiting for the other shoe to drop :)Thanks in advance,

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

"Never underestimate the power of a small, dedicated group of people to change the world -- indeed, it's the only thing that ever has." (Margaret Mead)

AmeriCorps Alums -- We're Still Getting Things Done

Ring'em or ping'em. Make PC-to-phone calls as low as 1¢/min with Messenger with Voice.

[Guest guest]

In a message dated 6/24/2006 4:18:43 A.M. Eastern Standard Time, dbargad@... writes:

If the Dr. prescribed MTX in a high dose, it means that the Humira isnt doing its job. Find another biologic and use a different immunosuppressant such as arava or imuran. Also discuss cyclosporine with him. It worked for me for many years before I started on Remicade. I hope you feel better soon. Hugs, Deborah

Thanks for the advice Deborah. I am not on MTX anymore. I stopped it myself. I was with another rheumy then and he was against it but I just couldn't handle the side effects anymore.

I have no idea what other med he is thinking of adding to the Humira if the pred helps. I refuse to go on it for long periods of time. And he said he will probably have me inject the humira either every 7 or 10 days.

.=........_(_O_)_....dwh/'_"_'\.......(_(_Y_)_)..''.../'w'\...(__)(,'ww',)('|||')_(__|__)__/__\__Some days you're the dogSome days you're the hydrant:-*-:._._.:-*-:._._.:-*-:check me out on My Spacecheck me out on Charlotte-ParentsCheck out NCarolinaMoms

[Guest guest]

Dear - I love the addage about the dog and the hydrant. Even when you are in pain and can keep your sense of humor it can lift you out of the worst mood. Please go to the library and ask the research desk to find you the latest articles on current arthritis research. I have gone to the library or online and read in depth about each medication I have ever been on. I went in with my eyes wide open except for one time and that is the one I regretted. I didnt take Remicade when it first came out because it was getting nothing but negative feedback on the research boards and clinical trials. When the cyclosporine stopped working for me then I had no choice. I hate needles more than anything and went in for my first infusion alone. This was a life transforming experience and because of my fear, I let myself stay ignorant about the options. I have been on Remicade since 2000 and could have saved myself a huge amount of pain if I hadnt been afraid and done my usual research. Google cyclosprorine for RA and read more about it. I was on that and MTX together and it worked four years for me and a blessing I cant tell you. I was taking prednisone from early in my illness 10/94 and have been on low dosage since. Hugs, Deborah

On 6/27/06, nic77727@... <nic77727@...> wrote:

In a message dated 6/24/2006 4:18:43 A.M. Eastern Standard Time, dbargad@... writes:

If the Dr. prescribed MTX in a high dose, it means that the Humira isnt doing its job. Find another biologic and use a different immunosuppressant such as arava or imuran. Also discuss cyclosporine with him. It worked for me for many years before I started on Remicade. I hope you feel better soon. Hugs, Deborah

Thanks for the advice Deborah. I am not on MTX anymore. I stopped it myself. I was with another rheumy then and he was against it but I just couldn't handle the side effects anymore.

I have no idea what other med he is thinking of adding to the Humira if the pred helps. I refuse to go on it for long periods of time. And he said he will probably have me inject the humira either every 7 or 10 days.

.=.

........_(_O_)_

.....dwh/'

_ " _'\.......(_

(_Y_)

_)..''...

/'w'\...

(__)(,'ww',)

('|||')

_(__|__)__/__\

__Some days you're the dog

Some days you're the hydrant:-*

-:._._.:-*

-:._._.:-

*-:check me out on My Space

check me out on Charlotte-Parents

Check out NCarolinaMoms

[Guest guest]

P.S. You only hear about the BAD side of a drug, not the good side or all the people it helped because their lives were aided so much by it that they went back to leading a pretty normal existence.

On 6/28/06, Deborah Bargad <dbargad@...> wrote:

Dear - I love the addage about the dog and the hydrant. Even when you are in pain and can keep your sense of humor it can lift you out of the worst mood. Please go to the library and ask the research desk to find you the latest articles on current arthritis research. I have gone to the library or online and read in depth about each medication I have ever been on. I went in with my eyes wide open except for one time and that is the one I regretted. I didnt take Remicade when it first came out because it was getting nothing but negative feedback on the research boards and clinical trials. When the cyclosporine stopped working for me then I had no choice. I hate needles more than anything and went in for my first infusion alone. This was a life transforming experience and because of my fear, I let myself stay ignorant about the options. I have been on Remicade since 2000 and could have saved myself a huge amount of pain if I hadnt been afraid and done my usual research. Google cyclosprorine for RA and read more about it. I was on that and MTX together and it worked four years for me and a blessing I cant tell you. I was taking prednisone from early in my illness 10/94 and have been on low dosage since. Hugs, Deborah

On 6/27/06, nic77727@... <

nic77727@...> wrote:

In a message dated 6/24/2006 4:18:43 A.M. Eastern Standard Time, dbargad@... writes:

If the Dr. prescribed MTX in a high dose, it means that the Humira isnt doing its job. Find another biologic and use a different immunosuppressant such as arava or imuran. Also discuss cyclosporine with him. It worked for me for many years before I started on Remicade. I hope you feel better soon. Hugs, Deborah

Thanks for the advice Deborah. I am not on MTX anymore. I stopped it myself. I was with another rheumy then and he was against it but I just couldn't handle the side effects anymore.

I have no idea what other med he is thinking of adding to the Humira if the pred helps. I refuse to go on it for long periods of time. And he said he will probably have me inject the humira either every 7 or 10 days.

.=.

........_(_O_)_

.....dwh/'

_ " _'\.......(_ (_Y_)

_)..''...

/'w'\...

(__)(,'ww',)

('|||')

_(__|__)__/__\

__Some days you're the dog Some days you're the hydrant:-*

-:._._.:-*

-:._._.:-

*-:check me out on My Space check me out on Charlotte-Parents Check out NCarolinaMoms

[Guest guest]

In a message dated 6/28/2006 2:53:14 A.M. Eastern Standard Time, dbargad@... writes:

Google cyclosprorine for RA and read more about it. I was on that and MTX together and it worked four years for me and a blessing I cant tell you. I was taking prednisone from early in my illness 10/94 and have been on low dosage since. Hugs, Deborah

Thanks again Deborah. I was on the prednisone for about 2 years before the started the MTX. Then they added the Humira. I got weaned off the pred and still no difference. Then I stopped the MTX.

I love having this group because it helps inform me about meds and treatments that I had no clue about.

Thanks for the comment on my signature. I love changing them around for my moods.

.=........_(_O_)_....dwh/'_"_'\.......(_(_Y_)_)..''.../'w'\...(__)(,'ww',)('|||')_(__|__)__/__\__Some days you're the dogSome days you're the hydrant:-*-:._._.:-*-:._._.:-*-:check me out on My Spacecheck me out on Charlotte-ParentsCheck out NCarolinaMoms

[Guest guest]

In a message dated 6/28/2006 2:54:49 A.M. Eastern Standard Time, dbargad@... writes:

P.S. You only hear about the BAD side of a drug, not the good side or all the people it helped because their lives were aided so much by it that they went back to leading a pretty normal existence.

Yes, I know what you mean about that. When my youngest was a baby she was very sick with reflux, it was one of the most severe cases they had seen down at Emory. They wanted to do a nissen fundoplication and no one I knew had a child who had one. So I went to the internet and did research and all I found were horror stories. We ended up having the surgery anyways and it was the best decision I have ever made for her.

.=........_(_O_)_....dwh/'_"_'\.......(_(_Y_)_)..''.../'w'\...(__)(,'ww',)('|||')_(__|__)__/__\__Some days you're the dogSome days you're the hydrant:-*-:._._.:-*-:._._.:-*-:check me out on My Spacecheck me out on Charlotte-ParentsCheck out NCarolinaMoms