Re: Help pain unbearable, arteries, neck and back bad too - ra?

[Guest guest]

Hello LAZYDOG;i don't know your true Medical condition:Question;can you be

active,if so

i suggest you start being so ,before you loose all of your Muscle mass.Check

with your

Family Physician first before any activities.And try to get away from

Pharmaceutical

drug's ASAP.Good luck..

[Guest guest]

, It's just my personal opinion here but I think you are way off line

by advising anyone to " get away from pharmaceutical drugs ASAP " . Yes, there

are alot of things people can do to help their situation but it's a known

fact that if you have RA, you must be on a DMARD to stop progression of this

disease, and the earlier the better. There are many people who come to this

site who are new to this disease and your advice can only hurt and confuse

them.

You are off base, please refrain from this line of " advice " .

in PA

On Fri, Aug 27, 2010 at 10:09 AM, robert tennent <thetennentcompany2@...

> wrote:

>

>

> Hello LAZYDOG;i don't know your true Medical condition:Question;can you be

> active,if so

> i suggest you start being so ,before you loose all of your Muscle

> mass.Check with your

> Family Physician first before any activities.And try to get away from

> Pharmaceutical

> drug's ASAP.Good luck..

>

>

>

[Guest guest]

I disagree also. I would be bedridden if it wasn't for the meds I am

taking now. My quality of life would have been in the toilet.

a

In a message dated 8/27/2010 10:35:13 A.M. Eastern Daylight Time,

mhm423@... writes:

, It's just my personal opinion here but I think you are way off line

by advising anyone to " get away from pharmaceutical drugs ASAP " . Yes,

there

are alot of things people can do to help their situation but it's a known

fact that if you have RA, you must be on a DMARD to stop progression of

this

disease, and the earlier the better. There are many people who come to

this

site who are new to this disease and your advice can only hurt and confuse

them.

You are off base, please refrain from this line of " advice " .

in PA

On Fri, Aug 27, 2010 at 10:09 AM, robert tennent

<thetennentcompany2@...

> wrote:

>

>

> Hello LAZYDOG;i don't know your true Medical condition:Question;can you

be

> active,if so

> i suggest you start being so ,before you loose all of your Muscle

> mass.Check with your

> Family Physician first before any activities.And try to get away from

> Pharmaceutical

> drug's ASAP.Good luck..

>

>

>

[Non-text portions of this message have been removed]

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[Guest guest]

Can't do so:I need to voice my opinion,just like you do,it's all for a

reason.Good luck.

From: McNally <mhm423@...>

Subject: Re: [ ] Help pain unbearable, arteries, neck and back bad too

- ra?

Date: Friday, August 27, 2010, 10:34 AM

, It's just my personal opinion here but I think you are way off line

by advising anyone to " get away from pharmaceutical drugs ASAP " .  Yes, there

are alot of things people can do to help their situation but it's a known

fact that if you have RA, you must be on a DMARD to stop progression of this

disease, and the earlier the better.  There are many people who come to this

site who are new to this disease and your advice can only hurt and confuse

them.

You are off base, please refrain from this line of " advice " .

in PA

[Guest guest]

Hi . I totally agree with you and a. I would be in a wheelchair and

bedridden without all my RA meds. I have a life now, I didn't before.

Your letter was rigt on.

Hugs,

Barbara

>

> >

> > 

> >

>

>

>

[Guest guest]

Thanks Barbara.

in PA

On Fri, Aug 27, 2010 at 12:12 PM, Barbara Creedon <bcreedon@...>wrote:

>

>

> Hi . I totally agree with you and a. I would be in a wheelchair and

> bedridden without all my RA meds. I have a life now, I didn't before.

>

> Your letter was rigt on.

>

> Hugs,

>

> Barbara

>

> >

> > >

> > >

> > >

> >

> >

> >

[Guest guest]

I agree with y'all, too. I am really thankful for the advances they

have made in medications for RA.

Sue

On Aug 27, 2010, at 12:12 PM, Barbara Creedon wrote:

> Hi . I totally agree with you and a. I would be in a

> wheelchair and bedridden without all my RA meds. I have a life now,

> I didn't before.

>

> Your letter was rigt on.

>

[Guest guest]

Hi

Sorry to hear you're in so much pain, it's tiring and distressing.

Sounds like you should go back to your Rheumy and or your primary care doctor.

Have you been diagnosed with problems with your arteries - from the RA or

something else?

Back pain when you breath can be heart or lung related so I would be getting it

checked out if it's new, and doctors aren't already aware of it.

Do you have a pre existing heart condition?

I would expect if you reacted to the prednisone a cortisone drip would give you

palpitations of some sort also - being a steroid, although at least you could be

monitored in hospital while it was administered and maybe they'd give you a beta

blocker or something to bring your heart back to a normal sinus rythm -i'm no

expert at all, just a patient who has had AF etc also before. What dose did they

start you on with the prednisone? Maybe if you spoke to your doctor about it you

could discuss starting on a low low dose and building up to the dose they wanted

you on? I know even something as simple as ventolin makes my heart tachycardic,

but the predisone is something that I need to help give me some control over my

RA

Take care.

>

> hi. i'm not sure what to do. painkillers don;'t work. tried them all. this

morning took 3 paracetomol/codeine and it actually made pain in my arteries

worse.

>

> is this ra.

>

> they weren't sure. sudden onset in april and every joint, incl jaw and now my

back when i breathe kills.

>

> i taking methetrexate (twice only so far) and plaquenil for pain but nothing

changed.

>

> i have lost about 7 kilos in 2 weeks and muscles in my hands and arms have all

but gone. my legs are now going the same way.

>

> was thinking i'd book myself into rehab to try and retain muscles and also

worried coz now i can't lift my arms at all.

>

> prednisone gave me atrial fibrilation, antiinflamatories didn't work and gav

me chest pain. i have got panadeine forte too which i take usually at night.

>

> do you think this is ra or something else?

>

> i thinking of ringing my rheumy but they dont seem to care about my pain.

>

> i have heard that a cortisone drip could help.

>

> ...julia

>

[Guest guest]

, You surely must realize some new members and some new people who have

just got

diagnosed with RA, might take your advice and not take the meds. they really

need to  try and treat their RA agressively.   The only way a person can be

sure about any meds. is to try it first.

I personally think you gave very poor advice today.  If you don;t want to take

any meds. because or fear or whatever, that is your choce.  Some people can be

swayed with the wrong advice not to take any RX meds.   None of us want to

take strong drugs, but to beat this ugly beast of a disease, we must so we can

have a life.  I am sure each person discusses the course that their Rheumy

wants to take them.  I know you think you can just give your advice, no matter

what it is. 

 

Advice is fine if it is constructive, not detrimental to a members well being. 

Matters of taking RA drugs should take place with the patient and their

Rheumy.  I feel you are very wrong to suggest that members should not take RX

meds. for their RA.  You have made a choice to forgo these meds.  That is your

right.  I feel very strongly on these issues.

 

Barbara  

 

From: McNally <mhm423@...>

Subject: Re: [ ] Help pain unbearable, arteries, neck and back bad too

- ra?

Date: Friday, August 27, 2010, 10:34 AM

, It's just my personal opinion here but I think you are way off line

by advising anyone to " get away from pharmaceutical drugs ASAP " .  Yes, there

are alot of things people can do to help their situation but it's a known

fact that if you have RA, you must be on a DMARD to stop progression of this

disease, and the earlier the better.  There are many people who come to this

site who are new to this disease and your advice can only hurt and confuse

them.

You are off base, please refrain from this line of " advice " .

in PA

[Guest guest]

Hi - I'm sorry you are feeling so miserable. I would definitely call your

Rheumy right away and work towards getting a definitive diagnosis of your

condition. If you aren't getting the results you need quickly, find another

Rheumy. Have you considered a pain management doctor in the meantime? He would

be the best one to work with to get the pain under control while your Rheumy is

getting the disease process into remission. Best of luck to you. I feel your

pain..... Doreen

hi. i'm not sure what to do. painkillers don;'t work. tried them all. this

morning took 3 paracetomol/codeine and it actually made pain in my arteries

worse.

is this ra.

they weren't sure. sudden onset in april and every joint, incl jaw and now my

back when i breathe kills.

i taking methetrexate (twice only so far) and plaquenil for pain but nothing

changed.

i have lost about 7 kilos in 2 weeks and muscles in my hands and arms have all

but gone. my legs are now going the same way.

was thinking i'd book myself into rehab to try and retain muscles and also

worried coz now i can't lift my arms at all.

prednisone gave me atrial fibrilation, antiinflamatories didn't work and gav me

chest pain. i have got panadeine forte too which i take usually at night.

do you think this is ra or something else?

i thinking of ringing my rheumy but they dont seem to care about my pain.

i have heard that a cortisone drip could help.

....julia

[Guest guest]

, I agree with the group that you should be seen in the office asap by

either your GP or your rheum. When I've been miserable as you've described I've

done dose packs of steroids that make me squrirely, but help a lot. It sounds

like they're still unsure of your diagnosis, so to me that means you need to be

followed closely. I'd want to be seen weekly if I were acutely ill and the dx

was unknown. The best rheum consult I had was when the rheumatologist went thru

each datum point to explain why they pointed firmly to RA. So

It's fair when they start to use a dx, you ask, well, what do you see that

supports that? Feel better and keep

Us posted, Kate f

Sent from my iPhone

On Aug 26, 2010, at 10:21 PM, " Lazydog " <lazydog124@...> wrote:

> hi. i'm not sure what to do. painkillers don;'t work. tried them all. this

morning took 3 paracetomol/codeine and it actually made pain in my arteries

worse.

>

> is this ra.

>

> they weren't sure. sudden onset in april and every joint, incl jaw and now my

back when i breathe kills.

>

> i taking methetrexate (twice only so far) and plaquenil for pain but nothing

changed.

>

> i have lost about 7 kilos in 2 weeks and muscles in my hands and arms have all

but gone. my legs are now going the same way.

>

> was thinking i'd book myself into rehab to try and retain muscles and also

worried coz now i can't lift my arms at all.

>

> prednisone gave me atrial fibrilation, antiinflamatories didn't work and gav

me chest pain. i have got panadeine forte too which i take usually at night.

>

> do you think this is ra or something else?

>

> i thinking of ringing my rheumy but they dont seem to care about my pain.

>

> i have heard that a cortisone drip could help.

>

> ...julia

>

>

[Guest guest]

My Rheumy's first choice of aggressive treatment was the combo Methotrexate and

Prednisone. I had an adverse reaction (shortness of breath, chest pain) to the

MTX. But what happened to me doesn't happen to everyone. I agree with the

group--aggressive treatment is NECESSARY to insure quality of life. If one

treatment doesn't work, try another. Hopefully you will find the treatment that

works best for you. Good luck . And best wishes to you all.

Shanyka

Sent from my HTC on the Now Network from Sprint!

Sent from my HTC on the Now Network from Sprint!

[Guest guest]

Hi shanyka

that was my rheumy's first choice also but as soon as i took the prednisone the

atrial fibrillation started again - for which i'd a few weeks earlier spent a

week in hospital for - and they blamed over replacement of thyroid meds

(probably coz i take Natural Thyroid Hormone and none of the doctors there had

heard of it). None of them assumed the prednisone was to blame.

I also had severe chest pain for which they did every heart test available - i

wonder if that was due to the prednisone too because it stopped shortly after i

stopped the prednisone. it was so severe i thought it must have been a heart

attack.

The methetrexate last week gave me bad diarhea (spell?) and i lost about 1.5 kg

in a day. i am assuming it was that because i have barely been eating anything

unusual as i can't get out of the house.

i was told last appt if methetrexate doesn't work then they will try biolitix or

whatever it is. i did ask him that last time because he told me first visit

they have good new drugs these days for ra and then i googled and found mtx been

around for years so wondered why i wasn't getting " new " drugs.

....julia

--- In , " shanyka_else@... " <shanyka_else@...>

wrote:

>

> My Rheumy's first choice of aggressive treatment was the combo Methotrexate

and Prednisone. I had an adverse reaction (shortness of breath, chest pain) to

the MTX. But what happened to me doesn't happen to everyone. I agree with the

group--aggressive treatment is NECESSARY to insure quality of life. If one

treatment doesn't work, try another. Hopefully you will find the treatment that

works best for you. Good luck . And best wishes to you all.

>

> Shanyka

>

> Sent from my HTC on the Now Network from Sprint!

>

> Sent from my HTC on the Now Network from Sprint!

>

>

[Guest guest]

Hi ,

To tell you the truth, most of these meds have side effects. But you have to

remember, the doctors treating us feel that the benefits of our aggressive

treatment out weigh the risk. It may take a while but hopefully they will find

something that will not make you so sick. I know it's probably been scary for

you. Gosh, Afib? Are you taking any anticoags? (Coumadin, Warfarin).

Sometimes these different drugs can cause arrythmias. I'm not an expert, but it

could possibly be the pred. According to my doctor, the pred is why I have

frequent palpitations and new hypertension.

Yeah, MTX gave me diarrhea too. I also had nosebleeds. Not sure if it was

related but I haven't had any since I've been off of it.

I really hope they can find the right combo of treatment for you. There's

nothing worst than not being able to treat this beast.

Take care of yourself and smile in the face of adversity.

Shanyka

Sent from my HTC on the Now Network from Sprint!

[Guest guest]

Hi. Do you need to continue taking mtx for years or can you stop?

Also what are the side effects? Doc mentioned hair loss and possible liver

problems (but he'd never seen any, but he seems young to me - hope i'm not his

first!)..

....julia