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Ethel,

I haven't posted on this group for a while (although I read pretty much

everything that comes through) but you are obviously in contact with the

marshall protocol forum. Is anyone in the group who has been on AP for a

while with no sustained remission trying the Marshall Protocol?

(14) was diagnosed with RA nearly 4 years ago and AP has been our only

course of action for her and while we initially had good results giving us

two great years, the major flare she experienced just on a year ago has been

difficult to rein in with abx. She seemed to be doing okay but in October

this year went downhill again prompting us to start the Marshall Protocol

just recently. It's early days yet but to me it seems to be a logical

extension of Dr. Brown's work and when I read about the Remicade it just

makes me realise yet again that we have no other option but to forge ahead

.... I would welcome any comments about Marshall Protocol.

Caroline Stronge.

rheumatic Remicade

>

> http://www.marshallprotocol.com/forum27/

>

> Meg Mangin, RN, has posted some excellent information on Remicade. After

> you click on this link, scroll down to Remicade for her post.

>

> Ethel

>

>

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Hello Ethel!

I no doubt have candida, metal toxicity, fungal infections, emotional

" issues " and need to keep detoxing. I feel like my whole system is so messed up

which is why I have been trying to decide what to do next. I get so tired

of all the juggling that I end up throwing all of it up in the air! I guess I

was hoping Dr. Sentef would help me get tweaked...but I really just need more

self disicipline and to get at myself. A doc here in town did a mineral

analysis on me well over a year ago and I had very high mercury levels...which

is

why I was considering having the amalgms removed by a dentist who uses the

approved " safe " procedure. He also found some food sensitivities...You know

that

I have never really been followed by an AP doc for any length of time. Ive

seen Whitman once, then Dr. Wirostko once...but have not had consistent

followup. Well...as always, I appreciate your input, as well as Geoff and

Martha. I

will stop whining now and do some more deliberating and praying about these

suggestions. God bless all...

susan.

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Hi ! Geoff here.

> Two things I am considering but can't do both due to cost.

> Either have 3 mercury amalgams removed and detoxed or

> go see Dr. Sentef.

Go to Dr. Sentef.

The amalgams are already in place. The greatest leaching of Hg from

amalgams takes place when they are installed, and **WHEN THEY ARE REMOVED**.

Thus removing them will release more Hg into your system at one time than

you are currently being subjected to. Over the long run, removing them will

lower the Hg load, but initially there will be an increase in it.

Considering the potential complications of the removals, it would seem

Sentef will be the better investment for you at this time since you can't

afford to do both. Remember also, subjecting your self to a Doctor's

examination is not the end of the costs, it is the beginning. Sentef will

doubtless have many more things for you to spend money on, and that laundry

list may have removal of those amalgams sometime down the road.

HTH

Geoff

soli Deo gloria

www.HealingYou.org

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,

I'm not so sure more antibiotics in the form of IVs is what you need. It

may only compound your problem. In my opinion, it's time to look at other

options. For instance, have you thoroughly detoxed your body? For some

people this needs to be repeated over and over again until the desired

results are achieved. I know of two cases where it took over a year. What

about your diet? Have you considered metabolic typing? What about hormonal

imbalance? Vitamin/mineral imbalances? Are you taking essential fatty

acids? What about metal toxicity? What about co-infections such as

candida, leaky gut, or even Lyme Disease? Any emotional problems that need

clearing up?

I agree with Geoff's advice in regard to the amalgams. You could do Dr.

' metal detox very cheaply. You just blend -

1 clove garlic

1/2 cup almonds

1 cup packed fresh cilantro leaves

2 tablespoons fresh lemon juice

6 tablespoons cold pressed virgin olive oil.

Take 2 teaspoons a day for three weeks. This freezes well so make several

batches.

You can use a touch of hot water to scrape the blender.

After all this, then I'd look at using a frequency generator device of some

sort, or if you want to continue using antibiotics, then look into the

Marshall protocol. Trevor Marshall's protocol is based in large part on Dr.

Brown's protocol but goes beyond it. There appears to be a steep learning

curve, but it is getting results where others have failed. The protocol was

designed originally for sarcoidosis patients, but has been expanded to

include auto-immune diseases. Even people with Lyme Disease are using it

successfully. The protocol has only been used for a few years, but it

wouldn't surprise me if eventually it is proven more effective than Dr.

Brown's protocol.

Ethel

Re: rheumatic Remicade

>

> In a message dated 12/6/2004 8:37:48 AM Central Standard Time,

> emsnooks@... writes:

>

> http://www.marshallprotocol.com/forum27/

> Hi Ethel and group

> I hope you are doing well. I haven't posted in awhile so here goes...

> I was taking Remicade for about 6months until the info came out about

> lymphoma, which incidentally, my doc never mentioned. I am taking Enbrel,

> but am

> very anxious to stop it.

> I have now had 6 surgeries on my eyes because of Uveitis. I am at a

> crossroads again...

> Two things I am considering but can't do both due to cost . Either have 3

> mercury amalgams removed and detoxed or go see Dr. Sentef. I have an app.

> with

> him next week but don't have a peace about what direction to take. I had

> thought that I might have IBD

> but that doesn't seem to be the case. Suggestions are appreciated!

> susan conaway

> Reactive Arthritis for 30 years. AP 15 years

>

>

>

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,

You can do most of the detox for little or no money, hot baths, sleeping hot,

drinking plenty of water, dietary modifications, etc. Having amalgams replaced

is expensive, time consuming and not without some degree of angst. Having the

teeth removed is even worse. Leaving the amalgams in place is at this time, I

think, the lesser of the evils currently facing you.

Geoff

Re: rheumatic Re: Remicade

hi geoff

you are right about the cost...and I don't know if it will help anyway. maybe

i just need to take the detox route and get my system cleaned up.

God bless

susan

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wrote:

You know that I have never really been followed by an AP doc for any length of

time. Ive seen Whitman once, then Dr. Wirostko once...but have not had

consistent followup.

Join the crowd, . I'd bet most of the people on this list could tell you

the same story - including me. That's why the list is so important. We're here

to help you walk through the therapy.

Ethel

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  • 6 months later...
Guest guest

Congratulations, Trudy, on quitting smoking. That is such an important thing

to do, especially if you have RA.

It is true that if you've been off of the Remicade for an extended period

that you might have trouble resuming it. How long has it been? Did you take

methotrexate, too?

Not an MD

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] Remicade

>I have a qestion I was on Remicde for 1 and 1/2 years and did great. I

> lost my Ins scince I cant work any more. I now have Medicade through

> the state. My Doctor's office has made me an appointment to start

> again, but the said I might have severe reactions to the drug the

> second time arround. I never had any problems with it except being

> tired afterwards. So what am i looking for I go Thursday at 9am. Also

> Today is 2 months scince I have Quit smoking and Yesterday was very

> very very hard for me I wanted a smoke so bad I could taste it. It was

> the worst day in a long time. But I made it thru. Please keep me in

> your prayers thats how i made it yesterday by Prayer I finally Just

> Prayed God, give me the strenghth to not have a ciggarette. I dont

> want one but I know my body does. I leave this in your hands.Amen Then

> i popped a nicoten lozenger. I made it.

>

> Trudy

>

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Guest guest

I went off all meds in Feb. Last Remicade was feb 4th and i do take methtrexate

now that i have ins again. Trudy

<Matsumura_Clan@...> wrote:Congratulations, Trudy, on quitting

smoking. That is such an important thing

to do, especially if you have RA.

It is true that if you've been off of the Remicade for an extended period

that you might have trouble resuming it. How long has it been? Did you take

methotrexate, too?

Not an MD

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] Remicade

>I have a qestion I was on Remicde for 1 and 1/2 years and did great. I

> lost my Ins scince I cant work any more. I now have Medicade through

> the state. My Doctor's office has made me an appointment to start

> again, but the said I might have severe reactions to the drug the

> second time arround. I never had any problems with it except being

> tired afterwards. So what am i looking for I go Thursday at 9am. Also

> Today is 2 months scince I have Quit smoking and Yesterday was very

> very very hard for me I wanted a smoke so bad I could taste it. It was

> the worst day in a long time. But I made it thru. Please keep me in

> your prayers thats how i made it yesterday by Prayer I finally Just

> Prayed God, give me the strenghth to not have a ciggarette. I dont

> want one but I know my body does. I leave this in your hands.Amen Then

> i popped a nicoten lozenger. I made it.

>

> Trudy

>

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Guest guest

I didn't really ask the right question, Trudy. Did you take MTX (or another

DMARD) while you were taking Remicade?

Not an MD

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

Re: [ ] Remicade

>I went off all meds in Feb. Last Remicade was feb 4th and i do take

>methtrexate now that i have ins again. Trudy

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Guest guest

yes I took 20 md of mtx.

<Matsumura_Clan@...> wrote:I didn't really ask the right

question, Trudy. Did you take MTX (or another

DMARD) while you were taking Remicade?

Not an MD

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

Re: [ ] Remicade

>I went off all meds in Feb. Last Remicade was feb 4th and i do take

>methtrexate now that i have ins again. Trudy

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  • 4 weeks later...
Guest guest

Hi,

I used remicade for 2 years with excellent results for my skin and

good results for my pa. I did need to increase the dose and

frequencey of infusions to keep it effective. however, I was not

taking the MTX along with it as many peple do.

I did get numbness, diagnosed as neuropathy and had to discontinue

the treatments. the neurological effects cleared very quickly when i

stopped the drug. i think a key would just be aware of it and tell

the doc if you get these side effects. My rheum said she had had

only one other patient get the neuro effects. this person developed

a drug induced MS but it also reversed after stopping the remicade.

i can't tell you what to do but I know it was worth it for me.

good luck!

marti

> Hi. I have been a member of this group for a while. I basically

just

> read the posts. However, I have a question that I would like to put

> out to anyone that is currently using or has used Remicade for

> psoriatic arthritis.

>

> I gave up on Enbrel after a year. Not because it didn't work...it

> did! I just could not continue injecting myself. It literally made

me

> sick at the thought and site of putting that needle in my body. My

> hubby couldn't do it for me either. So, I went back to methotrexate

> alone. Started @ 5.5 mg and had to increase 12.5 mg. I have

recently

> had a major flare in my right hand and arm that was so painful and

> swollen (I started calling it my " man hand " for all you Seinfeld

> fans). Just imagine a surgical glove completely blown up - that's

> what my hand looked like. Got a shot of cortisone to alleviate the

> pain and swelling, and got very nauseus was on the verge of passing

> out from the intensity of the pain of that shot.

>

> Long story short, went to the rheumy and discussed options. He

said I

> could try Remicade. I did some research and decided I would go for

> it. I recently read some posts from a Remicade group on that

is

> scaring me. These people are talking about MS related symptoms,

> numbness, nervous system problems...you name it all from the

Remicade

> infusions.

>

> I had very high hopes for this treatment, and am now reconsidering

my

> decision. I don't want to trade one problem for a host of others

due

> to this drug. I don't go for my first infusion until July 20. I'm

> going to the carribean for vacation three days later and am scared

> that I will be a medical mess due to the treatment.

>

> Can anyone PLEASE tell me of their experiences with this with regard

> to side effects during and after their infusions.

>

> Thank you so much!

>

> Barb

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Guest guest

--- bdoll17590 <bdoll17590@...> wrote:

> Can anyone PLEASE tell me of their experiences with

> this [Remicade] with regard

> to side effects during and after their infusions.

Remicade has worked like a dream for me. No side

effects thus far -- six months and counting. I have

only good things to say.

I had my doubts about the drug before I started, but I

literally walked out of the doc's office after the

first infusion without limping for the first time in

ages!

After six months, I have fine motor control in my

hands again, and my feet are much better, but I'm

still struggling with PA in my spine. I have more

energy. I've lost weight (which I think was related to

inflammation in my intestines, which is a compication

of spondylitis). I still flare a little as the date of

my next infusion approaches or when under stress, but

it's nowhere near as bad as it once was.

I did battle a recurring sinus infection that finally

seems under control, and a long-standing problem with

my gallbladder flared up and required surgery. BUT the

doc says these are totally unrelated to the Remicade.

As with any treatment, your mileage may vary. I hope

Remicade is as good to you as it has been for me.

--

=====================================================

Stein

http://www.noblefusion.com/astein

http://www.livejournal.com/users/astein142/

http://darkart42.deviantart.com/

-----------------------------------------------------

" Do or do not. There is no try. " - Yoda

-----------------------------------------------------

" If you're tired of fighting battles with yourself

If you want to be somebody else, change your mind... "

-- Sister Hazel

=====================================================

____________________________________________________

Sell on Auctions – no fees. Bid on great items.

http://auctions./

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  • 2 months later...

Hi Alison,

Just a quick note on side effects from Remicade. For

me, sometimes after a treatment I feel extremely

exhusted like one does with the flu; I mean where I

can literally sleep the entire rest of the day and the

entire following day. No upset stomach though. The

key is 'sometimes'... Other times I am fine and

notice very little. The great thing is after the

inital beginning, the treatments are only every 8

weeks (give or take) ~ I've moved from 6 to 12 now, so

I can put up with a couple of exhusting days if need

be...

All this said, it is probably something you would want

to mention to your doctor as a precautionary measure.

Best Wishes,

(Idaho)

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  • 4 weeks later...

Dear ,

I have been on Remicade for over a year. At first I did fantastic, then I had

an infusion this spring that did not seem like there was any medication in it at

all, even I know it did. Then this summer I had a problem, which I cannot get

resolved and if it is " drug induced Lupus " , then I will have no choice but to

come off the Remicade. Like Gilda said " it's always something.

I hope your most recent infusion helps, because when it works, it works great,

like day and night. It was the first time since developing spondyloarthopathy

that I felt normal again.

I just got remicade last week and normally I feel great, but this feels like

another dud. I don't know why that happens.

Why did you stop Remicade?? Was it due to side effects??

daisy in land

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  • 1 month later...

I was on remi-mtx for 4-5 years.. along with mobic. then just on mobic and

mxt and then the dr said mobic was doing something bad to me so he

switched me to just aleeve and mtx.... now i am going through some joint

destruction and dislocation in my right arm especially.... so i 'm going

to be starting remi again. i don't want to do it but i have no choice--the

pain isnt my major problem--the destruction is.

remi wasn't not a big problem for me as far as side effects.....

On Sun, 4 Dec 2005, farrell wrote:

> I think I am about to switch from Enbrel to Remicade. Is anyone out there on

Remicade alone or is everyone also taking MTX? How is your insurance paying on

the Remicade? Do you feel bad after the infusion?

> Thanks,

> Rae

Kilpatrick

~~~~~~

" People will forget what you said, people will forget what you did, but

people will never forget how you made them feel. " ~~~~~~~ Maya Angelou

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

EMAIL: juliette@...

PERSONAL HOMEPAGE PAGE http://members.tripod.com/~LizK

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

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  • 2 weeks later...

I've been on Remicade for about a year and a half. Also on

methotrexate. I've got pretty much 100% relief off all symptoms. My

arthritis was pretty bad, PA mostly on scalp but bad there.

I'm on United Health Care, no HMO. Doctor wrote to insurance

company and it's 100% covered. Your mileage and plan will vary. I

happen to be on the most expensive plan we had to choose from.

Sometimes I'm a bit tired after the infusion. But lately haven't

even felt that. At leastin my case, it's been a blessing. Once in a

while just before a infusion is due I might get a few random aches

that last just a couple hours. But really compared to where I was I

have complete relief from PA, Arthritis, and all the fatigue etc

that came with it.

>

> I think I am about to switch from Enbrel to Remicade. Is anyone

out there on Remicade alone or is everyone also taking MTX? How is

your insurance paying on the Remicade? Do you feel bad after the

infusion?

> Thanks,

> Rae

>

>

>

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  • 3 weeks later...

Hi Kathleen,

I had remicade for a couple of years and was definitely more fatigued

after an infusion. The fatigue usually wore off after several days.

When I added MTX to it I was definitely more tired all the time. It

took a good 6 months for me to notice joint improvement and then it

was obvious how much it helped. The thing that kept me going with it

was it cleared up my psoriasis quickly and that was wonderful. I

don't know about the muscle pain. I do know that when a rheum says

you are doing well sometimes it is because there is less swelling

and/or a lowered sed rate. But if your husband's pain is worse than

before and he feels his overall quality of life has not improved than

that should be the final judgement. It might be good to give it a

little more time and see how he does with it. Was he already on the

MTX? That one more typically causes side effects.

Hope some of this helps..

marti

>

> This is my first time to post. My husband has PA for 2 years this

> month. He started on Remicade in Oct. can not tell real improvement

> yet. But all of his joints POP now and he has more muscle pain

now.

> He seems more fatigued. Rheum Dr. said he is doing good. He is on

> methotrexate injections 1cc a week, and mobic. Is there anyone

else

> that has any experience with Remicade. Are these symptoms normal?

> Kathleen

>

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Marti,

Thank you for responding. Yes my husband has been on MTX since Dec.03.

with no visible side effects. He was tired most of the time before Remicade.

But after starting Remicade he feels worse alot more fatiqued the Dr. has

ordered a sleep study saying he shouldn't be so tired and run down. It gives me

hope that you saw an improvement after 6 months, maybe it will take a little

more time. Depression has became a problem for him. He is so angry and depressed

about having PA. unable to work hard like he always has. The poping in his

joints worries him and causes pain. Sometimes he rebels and stops taking his

meds for a few days and says he feels better for a few days then the pain comes

back hard. He is unaware on the extent of damage that PA can cause and he

doesn't want to know. I on the other hand want to be prepared and know what

might be coming. This site has given me hope and encouragement for several

months although I only observed in silence. I am so thankful to the Lord for

this site, the compassion and encouragement from others going

thru the same struggles. We have been married for 30 years and I would do

anything the make life easier for him. I do try to be joyful and give God the

praise and glory for the 30 wonderful years we have had. Thanks for allowing me

to vent, and thanks for your response.

Kathleeen

snowbound22003 <mlw402@...> wrote:

Hi Kathleen,

I had remicade for a couple of years and was definitely more fatigued

after an infusion. The fatigue usually wore off after several days.

When I added MTX to it I was definitely more tired all the time. It

took a good 6 months for me to notice joint improvement and then it

was obvious how much it helped. The thing that kept me going with it

was it cleared up my psoriasis quickly and that was wonderful. I

don't know about the muscle pain. I do know that when a rheum says

you are doing well sometimes it is because there is less swelling

and/or a lowered sed rate. But if your husband's pain is worse than

before and he feels his overall quality of life has not improved than

that should be the final judgement. It might be good to give it a

little more time and see how he does with it. Was he already on the

MTX? That one more typically causes side effects.

Hope some of this helps..

marti

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Thanks for allowing me to vent, and thanks for your response.

> Kathleeen

>

Hi Kathleen,

You are very welcome. This group has also helped me a lot. It does

get complicated and hard to tell what the meds are doing sometimes.I,

personally, will put up with a little more fatigue and fogginess to

feel less pain(and in my case avoiding damage if possible is

essential) but I understand your husband's rebeliousness. I feel

better in some ways off of the meds until I flare..ew..not a fun

choice.

Glad they will do a sleep study..some of us develop a secondery

illness of fibromyalgia, which is muscle pain, and a sleep

disturbance can be a major cause of it. also..just thought I'd

mention that MTX makes me teary and down...some of the meds can

affect our moods as well. Not to downplay the affect the disease

itself can have and the grief process we go through with

it..sometimes again and again.

As far as what pa might bring....it seems to vary from person to

person with some being fortunate to have a mild case and others, such

as myself, getting 2 of the more destructive subsets. I have

sustained a great deal of bone damamge over the 38 years I've had pa

but am told that I am at the extreme end for it. still....good to be

aware that pa is nothing to mess around with and can be disabling.

best,

marti

> snowbound22003 <mlw402@a...> wrote:

> Hi Kathleen,

>

> I had remicade for a couple of years and was definitely more

fatigued

> after an infusion. The fatigue usually wore off after several

days.

> When I added MTX to it I was definitely more tired all the time. It

> took a good 6 months for me to notice joint improvement and then it

> was obvious how much it helped. The thing that kept me going with

it

> was it cleared up my psoriasis quickly and that was wonderful. I

> don't know about the muscle pain. I do know that when a rheum says

> you are doing well sometimes it is because there is less swelling

> and/or a lowered sed rate. But if your husband's pain is worse than

> before and he feels his overall quality of life has not improved

than

> that should be the final judgement. It might be good to give it a

> little more time and see how he does with it. Was he already on the

> MTX? That one more typically causes side effects.

>

> Hope some of this helps..

>

> marti

>

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  • 2 weeks later...

In a message dated 30/12/2005 11:07:53 GMT Standard Time,

gods_mercy2u@... writes:

This is my first time to post. My husband has PA for 2 years this

month. He started on Remicade in Oct. can not tell real improvement

yet. But all of his joints POP now and he has more muscle pain now.

He seems more fatigued. Rheum Dr. said he is doing good. He is on

methotrexate injections 1cc a week, and mobic. Is there anyone else

that has any experience with Remicade. Are these symptoms normal?

Kathleen

Hi Kathleen,

A belated welcome to the group. I must have missed you too. I'm sorry that I

can't help you with your question on Remicade. I am on Enbrel. I also take MTX

but in pill form. I hope someone was able to help you.

Again, welcome.

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Hi Katheleen,

I have been on Remicaide for just over a year and a

half ~ combined with Methotrexate for most of that

time ~ and for me, it has been a miracle drug! From

the very beginning, I went from being in a severe

flare to almost returning to normal within a day or

two of the initial treatements...

They say it sometimes takes awhile to " kick in " , but

that wasn't my expierence.

The disease itself makes me tired and often after the

remicaide treatment I am so exhusted for a day or two,

but then I return to my normal " tiredness " , not like

before PsA... Also, I do think the Methotrexate makes

me tired and that's a weekly thing ~ I've just gone

back on it and it does seem to cause mild symptoms in

me.

Best of luck to you and your husband.

We know only too well what it's like!

(idaho)

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My experience with remicade has been the same as s. I am two

years into my treatment. Methotrexate, or any of the others just did

not work for me. The Remicade/MTX combo has been a miracle for me

too. It totally cleared up my psoriasis, and keeps the arthritis in

check. It works really fast. I did have one instance where i missed

my treatment by 2 weeks, and the pain and inflamation took no time in

returning. That is the scarey part. But, meanwhile, I am doing great

on the Remicade. without it, I wouldnt be able to work.

Best wishes to all

Robbi

>

> Hi Katheleen,

>

> I have been on Remicaide for just over a year and a

> half ~

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  • 4 weeks later...

Jim, I'm on enbrel for 9 weeks now. It helps me a lot but, it only lasts for

about 4 or 5 days. I've (Uspa) & (Psa). I'm also on a cocktail of other

drugs. If I can be of assistance to you e-mail me privately. Not on the group.

Marty

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