Re: Sausage Foot?

July 9, 2002

Hello Ron,

I've had a " fluffy " ankle (as the podiatrist called it) for several

years now. Most of the time it doesn't hurt, but when I start walking

around it starts hurting very quickly and painfully. As long as I

stay off it, it's still puffy but not painful. An MRI showed massive

inflammation in the tendon sheaths. So far I have gotten no

resolution from any drugs I'm on, none of my doctors have any good

opinion. I'm starting Remicade next week and sincerely hope that this

does the trick. I have tried ice/heat, months and months of physical

therapy. I have run the full gamut on my ankle to no useful purpose.

However, you're talking about wrapping in saran wrap and that could

in fact cause some edema (fluffy swelling). I definitely advise you

to hit the ice for both knee and ankle and keep the knee and ankle

elevated while icing. About 15 minutes is good. Also elevate after

you've been on your feet a while. Those 2 things can help a lot.

Best wishes,

Meghan

> Greetings all,

>

> Having had PA for several years and reading most of the messages on

> this forum, I thought I knew just about everything there was to

know

> about PA, but this past weekend I experienced a new phenomena that

I

> would like to ask the rest of the group about (ie; have any others

> experienced this, and if so what was the cause and eventual

outcome?)

>

> My right ankle has swollen up to the point where I can barely put

my

> right shoe on, and yet there is very little pain associated with

it.

> The swelling covers a large enough area that even my foot looks

like

> a balloon and I can't see the tendons and veins in it like I can in

> my left foot. The really strange thing however, is that if I press

> hard on the main part of the swelling with a finger, the

indentation

> made (1/4 inch deep or so) takes two or three minutes to go away!

>

> I've had swelling in the past in my fingers and other joints, and I

> assume that's what everyone means by the term " Sausage Digits " , but

> in those cases the inflamed joints were not only swollen, but were

> also red and throbbing with pain. Has anyone ever had a " Sausage "

> digit or joint that didn't ache and wasn't excruciatingly painful

to

> touch?

>

> My right knee is also puffy and swollen but the swollen part is

very

> resilient when pressed, like swollen joints normally are. I've had

> knee problems in both knees on and off for ages, so the swollen

knee

> is nothing new and just means it's time to have it aspirated and

> injected with cortisone again, but the ankle thing really has me

> puzzled. The only thing I've done out of the ordinary, is that for

> the past couple of nights I've been applying Dovonex ointment to

the

> Psoriasis on my ankle (which is pretty much covered with it) and

> wrapped it in Saran wrap. I've done this in the past without any

> unusual effects, and it makes it possible to scrape off most of the

> dead skin in the morning so that when I reapply the Dovonex it's

> being applied directly to the inflamed tissue rather than to a

layer

> of dead scales (Yes, I know this is a yucky topic, but P and PA are

> yucky diseases). Last week at work was also pretty stressful,

because

> although the project manager of the project I work on is usually

> pretty mellow and jovial, last week it was as though he had PMS!

> (Note: I don't mean any offense to the ladies in the group, and was

> just using " PMS " as a figure of speech. Perhaps I should have just

> said he was " cranky " , but sometimes I almost wonder if it's

possible

> for men to have the equivalent of the symptoms that are normally

> referred to as " PMS " symptoms in women).

>

> I tried to make an appointment with my rheumy today, and found out

> that she is out of the country for an entire month and won't return

> until August 8th! The office staff didn't know if she has anyone

> covering for her or not, but they promised to ask when she calls

into

> the office tomorrow to check for messages. I think she's a great

> rheumatologist, but it's very bad form to leave the country without

> setting up some type of backup for her patients. The last time I

> looked for a new rheumatologist, they were all booked up for months

> in advance, so I may be on my own with this. I have an excellent

> internist, but he himself has said that he's clueless about most

> Psoriatic Arthritis symptoms. He would however probably be willing

to

> prescribe most anything I asked for, and perhaps might even be able

> to aspirate my knee, but I have no idea what to think of the ankle

> swelling. Should I ask for a Prednisone dose-pack to get me through

> until my rheumy returns, or just leave it alone and not worry about

> it. The only problem with leaving it alone, is that between the

ankle

> and knee swelling and associated stiffness, it's difficult to walk.

> Fortunately, neither one of the effected joints is in great pain -

at

> least at the moment. Maybe its time to haul out my old crutch, but

> I'm loath to do that because it brings back so many bad memories.

>

> Well, that's my sob story for now. If anyone has ever had the

strange

> type of swelling that I described about my ankle, I really would

> appreciate it you'd let me know what the prognosis was, either on

the

> forum or via private email.

>

> Regards,

>

> -- Ron

July 9, 2002

In a message dated 07/09/2002 1:54:16 AM Eastern Daylight Time, PA@...

writes:

> The really strange thing however, is that if I press

> hard on the main part of the swelling with a finger, the indentation

> made (1/4 inch deep or so) takes two or three minutes to go away!

>

Ron - I have terrible edema in both feet and legs. They always check for

" pitting " which is how long it takes for the indent to go away. Mine go away

right away which is fine, but I think if your " indents " are lasting that

long, it could be a problem. In my opinion, you should at least call your

primary and let him/her know about this.

Take care,

July 9, 2002

I have noticed a lot of swelling in my feet and ankles also. I have

not brought this up to my Rhumy yet but I have an appointment

tomorrow and I will ask him about it. My feet look as though I have

been standing in water for three days and they have gotten bloated.

I am in the Army and can no longer wear boots and my PCM has me only

wearing soft shoes (i.e. sneakers). I have had problems with my

knees also but I always thought that it was due to the amount of

running that the Army makes one do. I am just waiting for my medical

evaluation board to be completed to find out if the Army is going to

seperate me or retire me early with a medical retirement. It is

really nerve racking because I am stuck in limbo. I can not apply

for jobs because I do not know when I will be getting out. Thank God

that I at least have a place to live when I get back to

Massachusetts.

One other general question for all those out there. I have heard

many times that PA is a hereditary disease. Is this true? The

reason that I ask is that after hearing about all of the symptoms

that I have my mother has noticed some of the same with her. Is it

possible for a son/daughter to develop this before a parent does?

She is going to see her doctor and she has told me that she is going

to discuss this with him.

Tom

> Greetings all,

>

> Having had PA for several years and reading most of the messages on

> this forum, I thought I knew just about everything there was to

know

> about PA, but this past weekend I experienced a new phenomena that

I

> would like to ask the rest of the group about (ie; have any others

> experienced this, and if so what was the cause and eventual

outcome?)

>

> My right ankle has swollen up to the point where I can barely put

my

> right shoe on, and yet there is very little pain associated with

it.

> The swelling covers a large enough area that even my foot looks

like

> a balloon and I can't see the tendons and veins in it like I can in

> my left foot. The really strange thing however, is that if I press

> hard on the main part of the swelling with a finger, the

indentation

> made (1/4 inch deep or so) takes two or three minutes to go away!

>

> I've had swelling in the past in my fingers and other joints, and I

> assume that's what everyone means by the term " Sausage Digits " , but

> in those cases the inflamed joints were not only swollen, but were

> also red and throbbing with pain. Has anyone ever had a " Sausage "

> digit or joint that didn't ache and wasn't excruciatingly painful

to

> touch?

>

> My right knee is also puffy and swollen but the swollen part is

very

> resilient when pressed, like swollen joints normally are. I've had

> knee problems in both knees on and off for ages, so the swollen

knee

> is nothing new and just means it's time to have it aspirated and

> injected with cortisone again, but the ankle thing really has me

> puzzled. The only thing I've done out of the ordinary, is that for

> the past couple of nights I've been applying Dovonex ointment to

the

> Psoriasis on my ankle (which is pretty much covered with it) and

> wrapped it in Saran wrap. I've done this in the past without any

> unusual effects, and it makes it possible to scrape off most of the

> dead skin in the morning so that when I reapply the Dovonex it's

> being applied directly to the inflamed tissue rather than to a

layer

> of dead scales (Yes, I know this is a yucky topic, but P and PA are

> yucky diseases). Last week at work was also pretty stressful,

because

> although the project manager of the project I work on is usually

> pretty mellow and jovial, last week it was as though he had PMS!

> (Note: I don't mean any offense to the ladies in the group, and was

> just using " PMS " as a figure of speech. Perhaps I should have just

> said he was " cranky " , but sometimes I almost wonder if it's

possible

> for men to have the equivalent of the symptoms that are normally

> referred to as " PMS " symptoms in women).

>

> I tried to make an appointment with my rheumy today, and found out

> that she is out of the country for an entire month and won't return

> until August 8th! The office staff didn't know if she has anyone

> covering for her or not, but they promised to ask when she calls

into

> the office tomorrow to check for messages. I think she's a great

> rheumatologist, but it's very bad form to leave the country without

> setting up some type of backup for her patients. The last time I

> looked for a new rheumatologist, they were all booked up for months

> in advance, so I may be on my own with this. I have an excellent

> internist, but he himself has said that he's clueless about most

> Psoriatic Arthritis symptoms. He would however probably be willing

to

> prescribe most anything I asked for, and perhaps might even be able

> to aspirate my knee, but I have no idea what to think of the ankle

> swelling. Should I ask for a Prednisone dose-pack to get me through

> until my rheumy returns, or just leave it alone and not worry about

> it. The only problem with leaving it alone, is that between the

ankle

> and knee swelling and associated stiffness, it's difficult to walk.

> Fortunately, neither one of the effected joints is in great pain -

at

> least at the moment. Maybe its time to haul out my old crutch, but

> I'm loath to do that because it brings back so many bad memories.

>

> Well, that's my sob story for now. If anyone has ever had the

strange

> type of swelling that I described about my ankle, I really would

> appreciate it you'd let me know what the prognosis was, either on

the

> forum or via private email.

>

> Regards,

>

> -- Ron

July 9, 2002

Thanks very much Meghan for your insight into my ankle/foot problem.

Fortunately it sounds as though it's not something I should be too

concerned about, especially since there's nothing much that can be

done about it anyway apparently. I was just concerned that it might

be the precursor to something very unpleasant. I will try your ice

treatment. At least now I know what it's called - edema. I had no

idea what that term meant before now. Looks like I may have to buy

two pairs of shoes, one in size 11 and the other in size 15 or so,

and wear one of each. Har! ;-)

I kind of mis-stated the Saran wrap thing. The Psoriasis is actually

above the ankle joint on what I've now learned (I just looked it up)

is actually called the " Tibia " (It's the bone just above the ankle

joint), or perhaps I should have said " Shin bone. " The swelling

however is in my ankle joint and foot below the area I wrapped in

plastic wrap to occlude the Dovonex application, and that part of my

leg (the tissue surrounding the shin bone and lower leg) isn't

swollen at all. I thought maybe I'd cut off circulation to my foot or

something and that was what caused the swelling. I'll ask my rheumy

about it when she returns from vacation. It's a really curious

condition, and I'd never seen or heard of anything like it that I

recall reading about.

Sorry I haven't gotten over to your EzBoard PA Book Team forum at

http://pub12.ezboard.com/bpabookteam to contribute anything yet. I

fully intend to do so, but there always seems to be more to do then

there is time in the day to do it.

Regards,

-- Ron

> Hello Ron,

>

> I've had a " fluffy " ankle (as the podiatrist called it) for several

> years now. Most of the time it doesn't hurt, but when I start

walking

> around it starts hurting very quickly and painfully. As long as I

> stay off it, it's still puffy but not painful. An MRI showed

massive

> inflammation in the tendon sheaths. So far I have gotten no

> resolution from any drugs I'm on, none of my doctors have any good

> opinion. I'm starting Remicade next week and sincerely hope that

this

> does the trick. I have tried ice/heat, months and months of

physical

> therapy. I have run the full gamut on my ankle to no useful purpose.

>

> However, you're talking about wrapping in saran wrap and that could

> in fact cause some edema (fluffy swelling). I definitely advise you

> to hit the ice for both knee and ankle and keep the knee and ankle

> elevated while icing. About 15 minutes is good. Also elevate after

> you've been on your feet a while. Those 2 things can help a lot.

>

> Best wishes,

> Meghan

>

July 9, 2002

Tom,

I would be very interested to hear what your Rheumy has to say about

the swelling in your feet and ankles. If possible, could you

summarize his comments on this forum, or send them to me privately if

you prefer?

From everything I'd read, P and PA are both hereditary, in that if

you inherit the right gene (or perhaps " wrong " gene would be the

proper description), you are " predisposed " to get P or PA if you're

then subsequently exposed to certain environmental trigger mechanisms

that are as yet unknown, though stress or physical trauma are thought

to be common trigger mechanisms. Since both P and PA can strike at

any age (some young children even have it), it seems reasonable to me

that a child could be stricken with it before it manifests itself in

the parent (if ever).

-- Ron

> I have noticed a lot of swelling in my feet and ankles also. I

> have not brought this up to my Rhumy yet but I have an

> appointment tomorrow and I will ask him about it. My feet look

> as though I have been standing in water for three days and they

> have gotten bloated. I am in the Army and can no longer wear

> boots and my PCM has me only wearing soft shoes (i.e.

> sneakers). I have had problems with my knees also but I always

> thought that it was due to the amount of running that the Army

> makes one do. I am just waiting for my medical evaluation

> board to be completed to find out if the Army is going to

> seperate me or retire me early with a medical retirement. It is

> really nerve racking because I am stuck in limbo. I can not

> apply for jobs because I do not know when I will be getting

> out. Thank God that I at least have a place to live when I get

> back to Massachusetts.

>

> One other general question for all those out there. I have

> heard many times that PA is a hereditary disease. Is this

> true? The reason that I ask is that after hearing about all of

> the symptoms that I have my mother has noticed some of the same

> with her. Is it possible for a son/daughter to develop this

> before a parent does? She is going to see her doctor and she

> has told me that she is going to discuss this with him.

>

> Tom

July 9, 2002

I had the ankle thing. I went to the podiatrist since it didn't seem like a

sausage digit. He put me on the prednisone taper and I recovered by the end

of the medication. Mine did hurt--but not like the sausage digit--just

ached.

I can't imagine a doctor leaving patients w/o a back up. Definitely

something to discuss at your next appointment.

Ks Di

July 9, 2002

ron_s_dotson wrote:

>My right ankle has swollen up to the point where I can barely put my

>right shoe on, and yet there is very little pain associated with it.

>The swelling covers a large enough area that even my foot looks like

>a balloon and I can't see the tendons and veins in it like I can in

>my left foot. The really strange thing however, is that if I press

>hard on the main part of the swelling with a finger, the indentation

>made (1/4 inch deep or so) takes two or three minutes to go away!

>

Ron, what a coincidence! I've recently just noticed some edema on most

of the top of my right foot that never used to be there, either, and

which doesn't let me see the tendons/veins. And it doesn't hurt, and

when I press on it, like you say, the indentations stay there for a

little bit. I haven't done anything at all to the top of my foot so,

like you, I'm flummoxed as to what this could be. (I also have a huge

patch of P on that ankle :-( ...) Although I suspect maybe a

relationship to possible tendon or ligament involvement along the side

of my foot -- then again, I also vaguely recall stubbing my toes on some

rocks last week -- but I don't know why either of those things would

affect the _top_ of my foot .... isn't PA a grand ailment??

Your situation sounds more involved, though, if your ankle and foot are

so swollen you're having trouble getting your shoe on. Maybe you wrapped

the Saran wrap tighter than usual? Or left it on longer? Or maybe you're

having a reaction to the Dovonex/Saran wrap combo (that wouldn't be

unheard of, I don't think, even if you've done it before with no

problems) .... what I would do, considering that your rheumy's out of

reach for a month (and you're absolutely right; it's a potentially

serious mistake on her part not to have someone covering for her in case

of medical necessity -- geez!) is to prop my foot up at any and all

opportunities. I'd get a small footstool (or a closed-up box, even, the

kind that copy paper comes in is good) to put under your desk at work

and prop that foot up. I'd stop using the Saran wrap at night. Then at

night, try icing your ankle/foot for 20 minutes at a time, a couple

times an hour for a couple hours. If there's no improvement after a

couple days or it gets worse, then I'd definitely seek some medical

attention.

Let us know how it goes!

--Louise

July 10, 2002

Ron, Regarding your sausage foot. I had something quite similar to

your story, but mine was limited to my left foot. This major flare

up was what finally got me diagnosed with PA. I was living in SE

Asia, and I was traveling in India. Although I was trying to be very

careful, I got sick anyway. It is bad enough having diarrhea,

especially when traveling, but especially when traveling in India

with a real shortage of restroom facilities. So, I got out my

immodium and took that for a few days. Bad decision there also. I

started retaining water and both my feet got swollen. But, having

the intestinal bug apparently set the PA off on a grand scale, and my

left foot was even more affected. I finally returned home (that trip

seemed sooo long), and after about 3 days felt so much better, but my

left foot was still swollen. Then, in a couple of weeks, I got a

sausage toe. They are called sausage toes/fingers, because they look

like little red, overstuffed sausages with tight skin. Not a pretty

sight, plus mine raised up. My foot hurt when I walked on it, but

also the skin was pretty tight. I can't really say it hurt that much

when sitting, but I just wanted to hold it and I guess put warm

pressure on it. It just felt very warm to the touch. After going to

2 orthopedic drs, I finally found a Malaysian rheumy, who diagnosed

it immediately. I think the sausage toe was a real giveaway. But,

she was very cautious and put me on sulfasalzine (low dosage) and

maybe Voltaren (low dosage). After 3 months of this, I returned to

the States for a visit, with the main intent of seeing a dr. In

fact, while I was enroute and at the airport in Singapore, I could

feel something happening to another toe, and within hours, I had

another sausage toe. It happened that quickly. And those toes never

went back to normal toes again.

But, I think my problems escalated quickly because of the slow and

cautious treatment I received. Don't delay!!

Right now, I have had to be taken off my MTX because of problems with

my liver levels(although I am on Enbrel). My dr told me that if I

needed some temporary relief, to pull out the prednisone to take. He

said to think of it as my American Express Card--use it in

emergencies and don't leave home without it!! So you might check on

that for an emergency.

Let us know how you are doing!!

Sandy

July 10, 2002

Ks Di,

Thanks for the info. As a matter of fact, I called my regular doctor

(internist) today, and he called in a prescription for a " Medrol 4mg

Dosepak " which is the Prednisone taper you mentioned. This one lasts

six days (6 pills the first day, 5 the next, etc.)

Yes, my rheumy's disappearance without backup will definitely get

discussed during my next visit. Unless this was some dire emergency

in which she didn't have time to arrange for backup (or maybe even if

it was), I think I'll go visit another rheumy and get on his patient

list just so I can see him quickly if this ever happens again.

Usually rheumatologists (like most doctors) have a much longer

waiting period for new patients than for patients they've seen before.

-- Ron

> Hi and Ron,

>

> So far, a prednisone taper was more effective for my ankle than a

> direct injection. But that's just me. The puffiness or bogginess does

> recede when I'm on steroids. That ankle injection was SO frellin

> painful, I will NEVER have one again. I don't care what's going on

> there!

>

> Ron, when you do get in to see your rheumy ask for something. You

> might be able to get the swelling to go away if you address it as

> soon as possible. My ankle went untreated for a long time cuz one

> rheumy I had was of the belief it's " just part of the arthritis " .

> That is one completely unacceptable attitude.

>

> Some time really soon, let one of your doctor's know about it.

> It's always good to have these things documented at the very least.

>

> Anyway, hope it gets better soon!

> -Meghan

July 10, 2002

,

I'll do that, probably tomorrow. Until yesterday while reading the

responses to my post on this forum, I'd only vaguely heard of Edema

and certainly didn't know the difference between " Pitting " Edema

and " Non-Pitting " Edma. A Medline lookup for Edma at:

http://www.nlm.nih.gov/medlineplus/ency/article/003103.htm

says this about it:

" INTERVENTION: Treatment may include fluid and sodium restriction,

diuretics, digoxin, and (rarely) intravenous albumin administration.

In some cases corticosteroids such as prednisone or immunosuppressive

medications may be given. Fluid intake and output should be monitored

and the patient should be weighed daily. "

Fluid restriction obviously isn't an option because I need to drink

lots of water just to wash down all the medications I take for PA.

The weird thing is that on the same Medline page where it

says " prednisone or immunosuppressive medications may be given " for

treatment, it also lists two of the many common causes for it as:

1. Corticosteroids such as prednisone (causes sodium retention)

2. Anti-inflammatory drugs (see NSAIDs)

I'm surprised the subject hasn't come up in this forum before (or

maybe it did and I missed it), since it must be pretty common among

those of us who take so many NSAIDS, prednisone, etc., but I suppose

most people consider it hardly worth mentioning when compared to the

seriously damaging effects of PA. Unfortunately I couldn't find

anything on the adverse effects of Edema on health, so I " assume "

they are minor - but I will mention it to my doctor nonetheless.

Maybe I should try to find a forum for people with Edema!? ;-)

Thanks,

-- Ron

> In a message dated 07/09/2002 1:54:16 AM EDT, PA@s... writes:

>

> > The really strange thing however, is that if I press

> > hard on the main part of the swelling with a finger,

> > the indentation made (1/4 inch deep or so) takes two or

> > three minutes to go away!

> >

>

> Ron - I have terrible edema in both feet and legs. They

> always check for " pitting " which is how long it takes for the

> indent to go away. Mine go away right away which is fine, but

> I think if your " indents " are lasting that long, it could be

> a problem. In my opinion, you should at least call your primary

> and let him/her know about this.

> Take care,

>

July 10, 2002

Sandy,

Thank you for a very interesting and informative story. I've learned

more about Edema and it's relationship to PA more in these past two

days from reading the replies to my post than I ever imagined existed.

If your swollen foot felt warm to the touch, then it must have been

inflamed (presumably with a PA flare-up). Perhaps it was a

combination of what I've since learned is called Edema, complicated

with PA inflammation? From your message, it sounds like the PA may

have actually been caused by (or may have been the result of) the

Edema swelling(?) I've had joints (fingers, wrist, knees, and hip)

swell up and feel warm to the touch, and with the two finger joint

flare-ups I've had the inflamed joint actually turned reddish in

color, but I've never had a situation where the " entire " finger or

toe became all swollen because of the PA. In my case, only the

inflamed joints themselves became swollen.

I've been on 1500 mg/day of Sulfasalazine and usually around 1000 mg

of Naprosyn or some other NSAID for many years, and even though we

all know those won't prevent flare-ups, at least it's not as though I

haven't been taking preventative measures. Also, as I mentioned in an

earlier post, my primary doc prescribed a Medrol Dosepak for me

today, so hopefully that will take down the PA inflammation in my

knee, but I have no idea if it will have any effect on the swelling

in my right foot/ankle joint (which is apparently Edema, since it's

relatively painless and " Pits " easily).

The inflammation in my right knee is definitely caused by PA (it

hurts and is warm to the touch) and has occurred many times in the

past, though not since I had what's called a couple of " P32 "

injections about eight years ago into it. Since the swelling in my

right foot/ankle doesn't hurt, I might not have even noticed it

except for the difficulty of putting my shoes on. When I did notice

it however, and put both feet side by side I was amazed at the

difference - my right foot/ankle was about twice the size of the

left! Maybe it's just coincidence that I happened to notice it about

the same time I started having a flare-up in my right knee - who

knows?

I once had what turned out to be a severe inflammation of the

Sacroiliac joint go from being mild back pain in the early afternoon,

to pain so excruciating three or four hours later that I could not

walk at all, and almost called for an ambulance because at the time I

didn't have any pain pills on hand that could handle it (ie; nothing

stronger than Darvocet), so yes - I'm fully aware how quickly a flare

up can sometimes occur. It's pretty amazing that all the

physiological changes that must happen for a flare up to occur, can

happen in such a short time! Now if we could just make them go away

as quickly, Har, Har! ;-)

By the way, a " P32 " injection is an excellent treatment for chronic

knee inflammations. It's the radiological equivalent to a surgical

synovectomy. A radioactive isotope of Chromium Phosphate (ie;

Radioactive phosphorus with a nuclear mass of 32 and a half-life of

two weeks, unlike the stable form of phosphorus which contains 31

protons) is injected into the synovial cavity of the knee. It

emits " soft " Beta rays (electrons) that can only penetrate a few

millimeters of human tissue (equivalent to one millimeter of

aluminum). This is enough to destroy the inflamed tissue inside the

synovial lining, and after 6 to 8 weeks the isotope has decayed away

into harmless Sulphur so that it doesn't have to be removed

surgically. It took two of these P32 injections into my right knee

several years ago to do the trick, but I haven't had any inflammation

of the right knee since then (up until a couple of days ago that is).

This P32 treatment is vastly superior to a synovectomy using

arthroscopic surgery because with surgery, the surgeon invariably

misses some small portion of the inflamed tissue, which then starts

the inflammation cycle anew - usually within a couple of years. The

P32 injection however, is much more likely to destroy ALL of the

inflamed tissue because it radiates equally in all directions, and

has apparently lasted me around eight years since that's

approximately how long ago I had the procedure done. Unfortunately

though, the doctor who did the injection has since retired because of

health problems of his own (two heart attacks), and I doubt that I'll

be able to find another who is familiar with the procedure. It's

really a pity this P32 procedure isn't used by more rheumatologists.

It does require quite a bit of coordination among patients and isn't

cheap (about $2,500/patient), because the isotope has to be

manufactured in a particle accelerator and shipped immediately after

manufacture by air courier before it has started to decay very much,

and is consequently very expensive - thus the need to line up several

patients who can share the cost. In my case, my rheumatologist had

about six of us in the waiting room of the hospital's radiological

lab for the procedure (law requires that the injection be done in a

lead lined room, which is kind of silly since the patients are sent

home immediately afterwards - but that's government rules and

regulations for you). At least I never have to worry about

inflammation of my left knee anymore, because there's nothing more in

it to become inflamed. Everything " inflammable " in it has already

been destroyed, including all cartilage and probably even the

synovial lining. Ah well, there's a bright side to everything I

suppose. ;-)

-- Ron

> Ron, Regarding your sausage foot. I had something quite similar

> to your story, but mine was limited to my left foot. This

> major flare up was what finally got me diagnosed with PA. I

> was living in SE Asia, and I was traveling in India. Although

> I was trying to be very careful, I got sick anyway. It is bad

> enough having diarrhea, especially when traveling, but

> especially when traveling in India with a real shortage of

> restroom facilities. So, I got out my immodium and took that

> for a few days. Bad decision there also. I started retaining

> water and both my feet got swollen. But, having the intestinal

> bug apparently set the PA off on a grand scale, and my left

> foot was even more affected. I finally returned home (that trip

> seemed sooo long), and after about 3 days felt so much better,

> but my left foot was still swollen. Then, in a couple of

> weeks, I got a sausage toe. They are called sausage

> toes/fingers, because they look like little red, overstuffed

> sausages with tight skin. Not a pretty sight, plus mine raised

> up. My foot hurt when I walked on it, but also the skin was

> pretty tight. I can't really say it hurt that much when

> sitting, but I just wanted to hold it and I guess put warm

> pressure on it. It just felt very warm to the touch. After

> going to 2 orthopedic drs, I finally found a Malaysian rheumy,

> who diagnosed it immediately. I think the sausage toe was a

> real giveaway. But, she was very cautious and put me on

> sulfasalzine (low dosage) and maybe Voltaren (low dosage).

> After 3 months of this, I returned to the States for a visit,

> with the main intent of seeing a dr. In fact, while I was

> enroute and at the airport in Singapore, I could feel something

> happening to another toe, and within hours, I had another

> sausage toe. It happened that quickly. And those toes never

> went back to normal toes again.

>

> But, I think my problems escalated quickly because of the slow

> and cautious treatment I received. Don't delay!!

>

> Right now, I have had to be taken off my MTX because of problems

> with my liver levels(although I am on Enbrel). My dr told me

> that if I needed some temporary relief, to pull out the

> prednisone to take. He said to think of it as my American

> Express Card--use it in emergencies and don't leave home

> without it!! So you might check on that for an emergency.

>

> Let us know how you are doing!!

>

> Sandy

July 10, 2002

Ron,

This sounds to me like fluid retention which is often associated with

such problems as high blood pressure. I have previously had to be placed on

a diuretic to relieve the problem. At the moment, I take my blood pressure

medication but not a diuretic, although I still get swelling of the ankles

and feet towards the end of most days. My doctor is monitoring it but does

not want to reintroduce a diuretic at this stage because of the potassium

loss it causes.

Regards, Gordon

July 10, 2002

Regarding edema and fluid restriction - please don't restrict fluids unless your

doctor says to. I know it sounds weird, but you will actually retain fluid if

you don't drink enough (I guess your body is conserving the water??) - If you

increase your fluid comsumption, especially water, the body tends to let go of

some fluid it is retaining. Sounds contradictory, but I know it is true. Also,

with the heat of the summer, it could be dangerous to restrict your fluid intake

- so again, please don't do so unless ordered by your doctor.

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

The medicines we take usually include anti-inflammatories. For the meds to work

properly the body needs enough water intake to flush the system. Restricting

fluids will increase pain levels. Same thing with pain meds...if you take pain

meds and not enough water you will actually hurt MORE. PatB

July 10, 2002

Ron

Are you taking Celebrex? I was told that it causes fluid retention in the legs

and feet.

The mistake I made was my grandaughter came down on vacation. She wanted to go

to the beach. I was not thinking and put my temovate on my legs. A steroid. Not

to be in sun while useing. Well I never gave it a thought until my legs got beet

red and broke out in blisters. That is when I got the swelling in my legs and

feet. The legs look good now but is still swollen. Expensive salve has helped

the redness but is a battle getting it cleared up. This happened to me over 3

months ago and I am still trying to get rid of it. I guess when the ps gets

irritated real bad it causes other problems. Like the swelling of legs and feet.

I was put on a diaretic but it did no good for me but that does not mean it will

not work for you. Maybe your doctor can come up with an answer and if not then

find a different one. If you can.

Verna

gordon eliott <geliott@...> wrote: Ron,

This sounds to me like fluid retention which is often associated with

such problems as high blood pressure. I have previously had to be placed on

a diuretic to relieve the problem. At the moment, I take my blood pressure

medication but not a diuretic, although I still get swelling of the ankles

and feet towards the end of most days. My doctor is monitoring it but does

not want to reintroduce a diuretic at this stage because of the potassium

loss it causes.

Regards, Gordon

July 11, 2002

When I had my foot/feet so swollen, it was a combination of two

things. I was retaining so much fluid because of the immodium I had

taken (because of my intestinal problems), and then discovered that

hidden under that was my first MAJOR flare of PA. I later found out

that an intestinal bug can really get a major flare going for PA. I

worked really hard at keeping that " bug " in my body for about 10

days, just to be sure that I was giving the PA a chance!! Ha!! The

moral of this story is to try to get any intestinal bugs out of your

body and treated quickly.

I do agree that prednisone causes water retention also. I was taking

that for about 3 years and am finally off--hopefully to stay off. I

think most of my prednisone water retention was in my stomach!!

> By the way, a " P32 " injection is an excellent treatment for chronic

> knee inflammations.

This is a really interesting treatment. People in this group have

had so many different treatments--quite an education in just reading

our posts.

Sandy

July 11, 2002

Gosh Ron, That clear plastic wrap reference really took me back...back about

43 years... My mother used to dunk me in a coal tar bath (yuk), cover my

many, many spots with a variety of cortisone creams (they varied from year to

year) and then cover it all in saran wrap and adhesive tape. She'd cut

patches for all over my stomach and back...gross! I remember this process

took hours each night and then I tried to sleep and crinkle all night long.

We did this for years until I was old enough to win the protest. I still

can't stand to use cling wrap

July 11, 2002

I've been battling edema for almost a year now. It will clear up for a few

weeks and then return. Right now I am on 80mg of Lasix plus Spironolactone.

Lasix robs the body of potassium so you must take a supplement along with

it. Spiro is a potassium sparing diuretic.... thankfully as the potassium

supplements are HUGE pills! blech You need to drink plenty of water while

on a diuretic.... not a huge amount, but more than most people drink. If

you drink too much water you overtax the kidneys which are already working

hard with the fluid the diuretic is removing.... and it has to be water...

not coffee, tea, pop or anything else, even if it is made with water I

probably drink around 2 qts a day... give or take. A big plus is that the

water keeps me full and I don't eat as much!

Thankfully no high blood pressure... my cholesterol's a bit high, but my

heart and arteries are okay. My old PCP, before she quit, had a ultrasound

and color doppler done of my heart. Now that was totally fascinating to watch!

oh... and if you do go on a diuretic.... prepare to spend a good deal of

time in the john