Re: Re: Re; In the muscles - from Ky

[Guest guest]

Hi Kathi,

This is very interesting....I have thyroid disease also. The swelling I have is

not the joint, but the tissue to the top and bottom of the joint. The joint is

rarely sore, but it did turn red twice. RA doc discovered the sore places were

where the tendons hooked on the joint. X-rays showed no deterioration or loss of

mass. The muscles are excruciating painful. Steroids as high as 40 mg per day x2

have been prescribed. Am on 20 per day unless muscle paralysis starts, then goes

up to 30 until the flare up ceases. I have extreme difficulty swallowing at

lower doses of prednisone and choke frequently. The muscle will not take the

food down and I have to struggle to try to swallow and not die. To be honest

with you, I lean more to scleroderma because of the symptoms but the tests

results are a bit confusing to me. All I know is that right now, steroids are

helping me to be able to move around, but the RA doc says that I cannot stay on

them. Off them and I want to find a way to end the pain. Can't stand it,

especially when I lose bodily function control and have the paralysis. I want to

do more in life and the thought of being limited is extremely frustrating. I am

walking more, exercising more and keeping my mind active....but difficult to do

with being morbidly obese.

Still is depressing tho...

[ ] Re: Re; " In the muscles " - from Ky

: I found your post quite interesting. And if you don't mind

me asking...do you know what tests were done? In these diseases it

is not uncommon for many blood test to be done, but alot of them can

be misleading. You can have a positive RF and have scleroderma and

not RA at all. Scleroderma starts out resembling both lupus and RA

and is quite difficult to diagnose. You said you had no joint

involvement and that would be quite unusual in both RA and

scleroderma, but especially in RA, and one of the criteria for

diagnosing RA is swollen joints, usually several. Scleroderma does

not always start with joint inflammation but most of the time it

will show up, and even at times cause joint erosion. All these

diseases can eventually cause organ damage, but not always and it

was good for your doctor to give you the brochure, but please

realize that internal involvement is not a given. Usually with

scleroderma there is always gastro problems, mine started with a

feeling of not being able to swallow....it use to be that a

scleroderma diagnosis was gloom and doom, because they did'nt know

alot about it, but only in the WORST cases is that true, and with

todays medical science they can treat the symptoms better than they

used to. If you don't mind me asking do you have skin thickening?

Because that is the number 1 criteria for scleroderma...I am sorry

all that you have been through, as I know what you have been through

it took me many years for a firm diagnosis, and I also started with

a mixed diagnosis....lupus and scleroderma, I still to this day have

lupus like symptoms to include the butterfly rash, but as it has

gone along the scleroderma has singled itself out. I was glad to

see your doc is doing regular blood testing with you taking

methotrexate as they have to watch your liver function, also the

amount that are given for rheumatic disease is usually not at chemo

level....how much metho are you taking? I would also suggest that

you get some SD info...I have alot I could send you if you would

like....also muscle problems would be alot more common with SD than

RA...I wish you days of feeling better and commiserate knowing what

you are going through.....Kathi in OK

Muscle Involvement

Muscle involvement is common in scleroderma.

The weakness and wasting of muscle commonly found in scleroderma is

a result of disuse owing to joint contractures as a result of the

skin involvement.

About 20% of patients with scleroderma develop a bland non-

progressive muscle disorder (myopathy). Weakness is not usually

noticed by the patient, but it can be detected on physical

examination by the physician and the tests of muscle inflammation

are either normal or only minimally elevated. The muscle biopsy

shows areas of replacement of muscle fibres with collagen tissue

without evidence of inflammation. This muscle involvement does not

usually require treatment.

A very small minority of patients develop acute inflammation of

their muscles with severe muscle pain and weakness especially around

the shoulders and hips causing problems in arising from chairs and

elevating the arms. This may occur in patients who have an overlap

syndrome with features of scleroderma, polymyositis and S.L.E.

(Mixed connective tissue disease). This form of muscle inflammation

requires high dose Prednisone (Cortisone) for control.

Tendon Involvement

http://www.haps.nsw.gov.au/patrsrcs/patsclero/msclsclero.htm<http://www.haps.nsw\

..gov.au/patrsrcs/patsclero/msclsclero.htm>

> I am also on steriods twice a day. My muscles

> > paralyze off the steriods. Mine is in the muscles...bypassed

the

> joints

> > already....intermediate stage....

>

> I'm not sure what you mean, here. Could you say more?

>

> Sierra

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