Enbrel neuropathy

[Guest guest]

I am 50, female, and a teacher with psoriatic arthritis. I have

been on methotrexate, folic acid, and mobic for 2-3 years with no

real side effects. I have just finished 6 months of Enbrel and

have just developed neuropathy (numbness or commonly called

dropsy) in my right foot. Has anyone else had this side effect

from Enbrel, and if so, how long did it take to get usage of the

foot or other limb back?

Thanks,

SShep

[Guest guest]

I have it in both my feet and what helped was my chiropractor had me

stand on this oval item that raised my toes or front part of my foot

and then I would lunge and bend one leg at a time in a forwrd stance

on this board and it helped the area that was getting numb

I am not sure if it is the same thing

What I do know is that with PA the feet and hands seem at times to be

more effected with inflammation and that cuts off the circulation to

the parts of the feet and hands. I spend time at night massaging all

with lotion before bed but that doesnt help the numbness it helps the

pain.

I will see on Wednesday if ther is a name to that foot exercise and

post it for you to try because I know it is hard to describe

I am fortunate to have a chiropractor thats specialty is all types of

arthritis and he also does Physical therapy along with manipulations

To help with the stiffness and pain

I wasnt aware that it could be the enbrel( I have been on it for over

3 years and havent had any side effects except i got most of my life

back. I am going to ask my rheumy on my next visit so I can clear that

up..

June

>

> I am 50, female, and a teacher with psoriatic arthritis. I have

> been on methotrexate, folic acid, and mobic for 2-3 years with no

> real side effects. I have just finished 6 months of Enbrel and

> have just developed neuropathy (numbness or commonly called

> dropsy) in my right foot. Has anyone else had this side effect

> from Enbrel, and if so, how long did it take to get usage of the

> foot or other limb back?

>

> Thanks,

>

> SShep

>

[Guest guest]

After my thrid dose of Enbrel, my entire right leg expereinced

shooting pain and then went numb all the way down to my foot. That

went away after a week. Then the next day after the shot, both my

hands and feet had numbing and tingling sensations. That took at

least two weeks to go away. My left pinky never fully recovered.

Months after the episode, I still have periodic numbness in that digit

that comes and goes. I told my Rhumey two days after the episode and

she had me get of Enbrel and follow up not only with an appt with her,

but I had to go to a Neuro to rule out MS. That was the most

interesting script I have every had...even the Neuro commented on it!

He was great, throrough. They wanted MRIs before my Neuro appt but my

Rheumey was so convinced that I was fine, she told them I didn't need

it. After 5 secs with the Neuro, he ordered 3 MRIs...after those came

back clear, he ordered blood tests for B12 deficinciy (which btw can

cause MS like symtoms). That came up all clear. So he convinced me

NOT to go back on Enbrel due to the lack of visiable evidence and the

fact that my pinky was numb still. Only becasue he has personally

seen several young people with PsA on Enbrel eventually with MS or

other Demylianating Disorders...and weekly he recieved messages from

teh Pharma themselved detailing new cases.

I don't understand why a drug that suppresses the immune system to

control inflamation can cause these problems, but if you google Enbrel

Neuropathy, you might be surprised at the results. Also, just look at

all the responses in this group. I hope the Drs and Pharmas finally

decide to research why this is an issue - since Enbrel and other like

medications seems to do wonders for our disorder. !!

>

> I am 50, female, and a teacher with psoriatic arthritis. I have

> been on methotrexate, folic acid, and mobic for 2-3 years with no

> real side effects. I have just finished 6 months of Enbrel and

> have just developed neuropathy (numbness or commonly called

> dropsy) in my right foot. Has anyone else had this side effect

> from Enbrel, and if so, how long did it take to get usage of the

> foot or other limb back?

>

> Thanks,

>

> SShep

>

[Guest guest]

Kat,

That is exactly why my PCP and I decided that I would

not use any of the drugs in the Enbrel group, there

are too many side effects and from what I have read on

this group so many people have gotten worse from

Enbrel, like poor Betz she is in the hospital right

now as far as I know I haven't seen an update on her,

and what do they think she has??? MS. My PCP said that

to weigh out the pros and cons, knowing that your

immune system has already gone haywire, then try to

suppress it??? Like my PCP said every drug is poison

that you are putting into your body in some shape or

form, knowing that and knowing that your immune system

isn't working right why take something that will cause

other diseases??? Yes PA is a progressive disease, I

have had arthritis since I was 5 in my hands, I am now

43 Dx with PA at the age of 39, my hands, hips and

back all have the signs of the destruction of joints.

From age 5 to age 39 before they found any damage???

Why put something in my body that could cause me more

diseases than the ones I have????? I have had cancer 3

times, I KNOW my immune system is not the same all the

shots that you get as a child I no longer have in my

blood system because chemo took it all out, with PA I

can not take those shots over again. TOO BIG OF A

RISK. I don't want to end up in the hospital because

of another drug I took to try to slow down what I have

I would rather live with it and see my youngest son

graduate high school and I would rather be here

playing with my grandchildren, with only 1 disease

instead of several because of taking meds that

supposedly slow down the progress, and in the end give

you more health problems. I have enough on my plate

now WHY add more???? My PCP gives me drugs for the

pain and for the fatigue, to me that is good enough

why take the chance of making myself worse off than I

already am? I tend to agree with you on questioning

taking Enbrel, like you wrote look at how many it has

affected right here in this group think of how many

others out there that are not in this group and how it

may be doing the same for them. My 2 cents worth, take

it or leave it, just saw the opportunity to make

myself heard and took it. I want you to know that in

no way was I trying to make you feel bad or degraded,

just saw the doubt and picked up on it.If I offended

you in any way I apologize right now, that was not

what I intended to do.

[Editor's Note: As far as I know, the doctors have not come up with a

definitive diagnosis yet, but I believe they have ruled out MS. One word of

balance here: Enbrel has helped thousands more than it has hurt and that should

be weighed heavily by those who continue to suffer. The reason for taking a

biologic is to stem the progression of the disease and pain killers will NOT do

that. It's a personal decision. Kathy F.]

[Guest guest]

Hi!

I agree...it is totally a personal decision. Enbrel has helped many

and has hurt many. So if someone is sensitive (like me), then

Enbrel is not a good route.

I am just glad I don't have MS...it was the second scare I have

had...but on the flip side, I have been on Sulfalsazine for a couple

of months and I am not really seeing any progress. My Rheumy and I

have decided that if nothing else works, I very well may just go

back on Enbrel and take the risk. Enbrel was working so well with

me in a short period of time that I was almost back to normal -

before I started having " other " issues. Of course now i also have

forgotten all the side effects I had like severe fatigue and

dizziness from hell.

But now I have hands that hurt all the time and finding it harder

and harder to get back into physical fitness...which will lead me

down a slippery slope.

I hope you can find the right solution for yourself!

Kat

>

> Kat,

> That is exactly why my PCP and I decided that I would

> not use any of the drugs in the Enbrel group, there

> are too many side effects and from what I have read on

> this group so many people have gotten worse from

> Enbrel, like poor Betz she is in the hospital right

> now as far as I know I haven't seen an update on her,

> and what do they think she has??? MS. My PCP said that

> to weigh out the pros and cons, knowing that your

> immune system has already gone haywire, then try to

> suppress it??? Like my PCP said every drug is poison

> that you are putting into your body in some shape or

> form, knowing that and knowing that your immune system

> isn't working right why take something that will cause

> other diseases??? Yes PA is a progressive disease, I

> have had arthritis since I was 5 in my hands, I am now

> 43 Dx with PA at the age of 39, my hands, hips and

> back all have the signs of the destruction of joints.

> From age 5 to age 39 before they found any damage???

> Why put something in my body that could cause me more

> diseases than the ones I have????? I have had cancer 3

> times, I KNOW my immune system is not the same all the

> shots that you get as a child I no longer have in my

> blood system because chemo took it all out, with PA I

> can not take those shots over again. TOO BIG OF A

> RISK. I don't want to end up in the hospital because

> of another drug I took to try to slow down what I have

> I would rather live with it and see my youngest son

> graduate high school and I would rather be here

> playing with my grandchildren, with only 1 disease

> instead of several because of taking meds that

> supposedly slow down the progress, and in the end give

> you more health problems. I have enough on my plate

> now WHY add more???? My PCP gives me drugs for the

> pain and for the fatigue, to me that is good enough

> why take the chance of making myself worse off than I

> already am? I tend to agree with you on questioning

> taking Enbrel, like you wrote look at how many it has

> affected right here in this group think of how many

> others out there that are not in this group and how it

> may be doing the same for them. My 2 cents worth, take

> it or leave it, just saw the opportunity to make

> myself heard and took it. I want you to know that in

> no way was I trying to make you feel bad or degraded,

> just saw the doubt and picked up on it.If I offended

> you in any way I apologize right now, that was not

> what I intended to do.

>

> [Editor's Note: As far as I know, the doctors have not come up

with a definitive diagnosis yet, but I believe they have ruled out

MS. One word of balance here: Enbrel has helped thousands more than

it has hurt and that should be weighed heavily by those who continue

to suffer. The reason for taking a biologic is to stem the

progression of the disease and pain killers will NOT do that. It's

a personal decision. Kathy F.]

>

[Guest guest]

betz ...did you know thatenbrel lowers your blood pressure?

[Guest guest]

Hey Sharon. I'm home and starting to recover. I have to tell you

that even though I may have reacted to Enbrel, (we can't prove it of

course) I am still an Enbrel fan because of the countless people it

has helped and I have no regrets. I was educated when I started

taking it and I knew the risks but CHOSE to do it so that I could

have a shot at a better quality of life. I also chose to drive my

car on the Taconic Parkway despite the high number of accidents that

occur there because riding a bike or walking would lower my quality

of life. Driving a car is a risk. Eating out is a risk. Life is full

of risks. I was ready to try Humira now but my Rheumy is leary and

wants to step outside of the TNF blocker group of medications and

she is going to try me on Orencia which is approved for RA. I am

researching it now and I'll know more when I start it. My symptoms

were much like MS but frankly, I've had reason for doctors to think

I might have MS before so I would not have said that Enbrel CAUSED

me to have MS if I DID have it but rather would have felt that I had

it all along. The incidences of MS and cancers is not higher in

Enbrel patients than it is for the general population. When a drug

is tested they are required to list all other diagnosis that occur

during the testing. There is no proof that the Enbrel CAUSED these

things. Sad things is, as you more than most of us know, Cancer can

strike at any time even if you already have PA or MS or are

paralized or blind. There is no " disease quota " . Stinks. It really

does. So I'm ready to move onto the next drug because I got a taste

of how it could be without symptoms and I want that. For you, it is

different with your health history. I think it is different for each

of us though and we have to consider all of our options and factor

in our medical history and lifestyle as well before we chose a

treatment course. And then be willing to alter it as certain drugs

fail or loose their potency for us. Just like life...accept and

adjust...accept and adjust. Sigh. I, for one, am NOT giving up.

The other thing that landed me in the hospital is my blood

pressure. One night it got as low as 82 over 37 so I am now taking

something to help raise it as well as increasing my sodium content.

Can you believe that? I had to buy salt! The medication will not

work as well without salt according to my neurologist. That should

be better in about a week. Then it's back to Social Services for

help with the bills and food and rent. Here we go again. At least I

know what to do this time. Thanks for thinking of me. Sending good

thoughts back at cha. Only 95 more emails to go now! Love, Betz

>

> Kat,

> That is exactly why my PCP and I decided that I would

> not use any of the drugs in the Enbrel group, there

> are too many side effects and from what I have read on

> this group so many people have gotten worse from

> Enbrel, like poor Betz she is in the hospital right

> now as far as I know I haven't seen an update on her,

> and what do they think she has??? MS. My PCP said that

> to weigh out the pros and cons, knowing that your

> immune system has already gone haywire, then try to

> suppress it??? Like my PCP said every drug is poison

> that you are putting into your body in some shape or

> form, knowing that and knowing that your immune system

> isn't working right why take something that will cause

> other diseases??? Yes PA is a progressive disease, I

> have had arthritis since I was 5 in my hands, I am now

> 43 Dx with PA at the age of 39, my hands, hips and

> back all have the signs of the destruction of joints.

> From age 5 to age 39 before they found any damage???

> Why put something in my body that could cause me more

> diseases than the ones I have????? I have had cancer 3

> times, I KNOW my immune system is not the same all the

> shots that you get as a child I no longer have in my

> blood system because chemo took it all out, with PA I

> can not take those shots over again. TOO BIG OF A

> RISK. I don't want to end up in the hospital because

> of another drug I took to try to slow down what I have

> I would rather live with it and see my youngest son

> graduate high school and I would rather be here

> playing with my grandchildren, with only 1 disease

> instead of several because of taking meds that

> supposedly slow down the progress, and in the end give

> you more health problems. I have enough on my plate

> now WHY add more???? My PCP gives me drugs for the

> pain and for the fatigue, to me that is good enough

> why take the chance of making myself worse off than I

> already am? I tend to agree with you on questioning

> taking Enbrel, like you wrote look at how many it has

> affected right here in this group think of how many

> others out there that are not in this group and how it

> may be doing the same for them. My 2 cents worth, take

> it or leave it, just saw the opportunity to make

> myself heard and took it. I want you to know that in

> no way was I trying to make you feel bad or degraded,

> just saw the doubt and picked up on it.If I offended

> you in any way I apologize right now, that was not

> what I intended to do.

>

> [Editor's Note: As far as I know, the doctors have not come up

with a definitive diagnosis yet, but I believe they have ruled out

MS. One word of balance here: Enbrel has helped thousands more than

it has hurt and that should be weighed heavily by those who continue

to suffer. The reason for taking a biologic is to stem the

progression of the disease and pain killers will NOT do that. It's

a personal decision. Kathy F.]

>

[Guest guest]

Are you kidding me? We went over and over the literature and saw

Nothing...nada...zip on blood pressure. Where did you see that?

>

> betz ...did you know thatenbrel lowers your blood pressure?

>

>

>

[Guest guest]

Enbrel contains mannitol . Mannitol is a diuretic and causes the kidney to

push more liquid through kidneys and bladder. It increases the amount of

urine thru kidneys and the body loses more water and salt . This is

especially a problem for people with kidney infections and you should stop

enbrel

when you have an infection as it concentrates urine more. I have been on enbrel

for 7 years and take my blood pressure everyday . It always goes down on the

day I take enbrel and since i am now on 50 mg twice a week my blood pressure

takes a dive the day after . I have to drink a lot of fluids and be careful

because I am on a beta blocker which also lowers my blood pressure . if you

have low blood pressure anyway you have to be extra careful . cathy from ma

[Guest guest]

I developeneuropathy while on Enbrel - quite severe actually. I haven't been on

the stuff for years. Others from this site have also developed neuropathies of

varying degrees over the years.

[Guest guest]

if you type neuropathy into the search function of this group, I am sure you ll

get many hits, Becca.

[Guest guest]

Thanks to everyone for their responses. I am currently waiting for a call back

from my rheumatologist about the neuropathy. I will let you know what the

verdict is.

Job-

As far as the twitching on Humira...it was a year ago..I had been on it for 6

months. I was having minor muscle twitching - usually in my hands and arms. I

saw my neurologist who stated it was common with biologics, and unless it

bothered me not to worry about it. (it DID bother me as it would happen while i

was spaying pets) As soon as they took me off the humira- they stopped within a

few weeks and have not come back. As I recall (which isn't always reliable as I

had a head injury a few years ago), I was also having bruising and pain was

worsening. I think the combination of all of those had my rheumatologist switch

me to Enbrel. Enbrel has been MUCH better for me than Humira - but we all

respond differently to medications. I think Parkinson like tremors are listed

as a side effect of Enbrel (but so is just about everything else under the sun).

I am having the bruising problems again - everywhere a pet jumps up on me, I get

a bruise. I currently have close to 20 on my legs and arms. We will see what the

Dr says, but I suspect it is related to the Enbrel. Those don't bother me enough

to come off Enbrel, however!

Someone else asked about pregnancy on Enbrel. (sorry, I don't remember who).

There is a rheumatologist nearby who keeps her RA patients on Enbrel throughout

the pregnancy and has not had any issues. I am skeptical about this, and hold

off on taking my Enbrel until I am sure I am not pregnant each month (I miss one

injection a month). And if I am blessed with a child, I will NOT take the Enbrel

while pregnant (only while trying to conceive as this can take months to years).

Thanks for all the advice...Job, I hope that helps you somewhat. I am sorry you

are having twitching bad enough to fall down - that sounds horrible! I hope you

get relief soon!

Thanks,

Becca

[Guest guest]

Foot problems are very common with PA. I used Enbrel for 3 yrs and developed

neuropathy in my feet. It is so severe that I can not stand longer than 30 mins.

I take Lyrica and it helps with the burning/(walking on hot coals). It takes

away some of the pain but I am left with break-through pain. I was on Neurotin

for several years and it did nothing for the neuropathy.

I asked my rheumatologist if the Enbrel caused my neuropathy. She said that

arthritis can also cause it too, so the jury is out as to how I got it. I have

gotten used to the pain. The Lyrica really stops the burning, which at times was

unbearable. I hate to say this, but I am glad that i have the neuropathy. I have

filed for SSDI and hopefully it will help with my approval. It took me years to

be diagnosed. With PA you will never know what organ or body system will go

haywire. Expect the unexpected! If an increased dose of Neurotin does not help,

ask about Lyrica.

Beth