Re: Stills and endometriosis???

[Guest guest]

-

quite a bit of my pain did go away - but not all of it. Every few weeks I get

pretty bad pelvic pain.

 ~Keilia~

www.mdjunction.com

" Being deeply loved by someone gives you strength, while loving someone deeply

gives you courage. " - Lao Tzu

________________________________

To: Stillsdisease

Sent: Thu, January 7, 2010 7:59:14 PM

Subject: Stills and endometriosis???

 

Hi everyone!

I've noticed an inordinate number of women on this list complaining of

endometriosis. I was diagnosed with it too, was on Lupron and then had an

laparoscopy with fulgaration. Anyway, I was reading the long article by Dr. Cush

on the Stills site and something struck me. But let me explain my thinking

systematically.

1. I used to work in OB/GYN at UCLA Medical Center. I know from my work there

that in many cases (like mine) the amount of pain is not related to how bad your

endometriosis is. There are women with huge amounts of it in no pain and other

women with small amounts with huge amounts of pain. When my doc opened me up,

she found very little endometriosis. Still, she cleaned me out. The pain did not

go away.

2. The article by Dr. Cush talks about abdominal pain of unknown original with

Stills.

I am wondering if many of us (including me) were misdiagnosed with endometriosis

when the pain was really part of the Stills? So my question to the women in the

group: if you were treated for endometriosis, did your abdominal pain go away?

And if it didn't go away with that treatment, how has it been since you've been

on Stills medications?

I suppose the fact that I was misdiagnosed with lupus prior to the Stills

diagnosis makes me look at all diagnoses with skepticism. If they were wrong

about the lupus, were they wrong about the endometriois too?

What do you all think?

[Guest guest]

well I sure hope he was talking about some thing other then endometriosis! If he

was not then my mom got things mixed up or I had an operation some were down the

line I did not know about or I am going to be rich and just have not found out

about it yet  

the redneck

Marty G.

To learn about Stills Disease http://www.stillsdisease.org/stills_info

Experience: that most brutal of teachers. But you learn, my God do you learn.---

C.S.

[Guest guest]

greetings tracy,

 

i got the endo diagnosis very early, as a teen. mine got diagnosed during a

laoproscapy for something else. ob/gyn removed the endo build up while he was in

there anyway.  the second time the endo build up was removed was mid 20s when

they, again, were in there anyway (had tubes tied).

 

i've had lower abdominal pain on and off my whole life. i know the endo

diagnosis is valid in my case, but it is consided mild.  treatment of the endo

has never seemed to matter one way or the other for the pain.  i don't think

the diagnosis or the build up removal would have happened if not for other

things going on anyway. 

 

and, since i'm mid 30s and going thru menopause, i'm hoping i will see an end to

the endo along with the end of my cycles

 

blessings

elizabeth

Subject: Stills and endometriosis???

To: Stillsdisease

Date: Thursday, January 7, 2010, 9:59 PM

 

Hi everyone!

I've noticed an inordinate number of women on this list complaining of

endometriosis. I was diagnosed with it too, was on Lupron and then had an

laparoscopy with fulgaration. Anyway, I was reading the long article by Dr. Cush

on the Stills site and something struck me. But let me explain my thinking

systematically.

1. I used to work in OB/GYN at UCLA Medical Center. I know from my work there

that in many cases (like mine) the amount of pain is not related to how bad your

endometriosis is. There are women with huge amounts of it in no pain and other

women with small amounts with huge amounts of pain. When my doc opened me up,

she found very little endometriosis. Still, she cleaned me out. The pain did not

go away.

2. The article by Dr. Cush talks about abdominal pain of unknown original with

Stills.

I am wondering if many of us (including me) were misdiagnosed with endometriosis

when the pain was really part of the Stills? So my question to the women in the

group: if you were treated for endometriosis, did your abdominal pain go away?

And if it didn't go away with that treatment, how has it been since you've been

on Stills medications?

I suppose the fact that I was misdiagnosed with lupus prior to the Stills

diagnosis makes me look at all diagnoses with skepticism. If they were wrong

about the lupus, were they wrong about the endometriois too?

What do you all think?

[Guest guest]

Well there's no way to prove this one way or the other, but I suspect that

endometriosis is the diagnosis given when the docs can't find anything wrong AND

the patient is a woman of childbearing years.

Ironically, now that I'm feeling better with the Kineret, my periods are back

and I'm out of menopause at just shy of 50. And I must be putting out

pheromones because I'm more popular now then I was at 29! A strange change of

circumstances....

[Guest guest]

Hello all I just got through reading your post. I have to comment since I had a

partial hysterectomy due to endometrosis. I am 27 years old and this operation

done last year because it was discovered when I was having a cysts removed from

my ovaries.

I have a had rheumatoid and stills since I was 18. Diagnosed when I was 21. I

suffered with horrible periods to the point where I could barely walk. I tried

medication but it didn't work. I went to my RA for guidance on the situation and

we decided that I couldn't bear children because it would be too harsh on my

body and I didn't want to continue have three week periods. So I went through

with it. I feel so much better now and I am glad I went through with it. I do

hope you begin to feel better.

Hugs and blessings

P

Corpus Christi Tx

[Guest guest]

I'm glad you're feeling better. It's pretty rare " these days " to get a

hysterectomy that young for anything other than cancer. May I ask you how old

your doctor was/is who did the hysterectomy? Older doctors are much more likely

to do hysterectomies. When you say partial, do you mean that your ovaries were

left in? That's important for people like us because of the bone loss we

already face due to steroids; it's not good to increase the likelihood of

osteoporosis by removing ovaries from a very young woman and leaving her for

2/3s of her life without the proper hormones. I'm sure it is a relief to no

longer have periods (Sorry about all the girltalk Marty), but I want to mention

to make sure you take calcium and Vitamin D and do exercises (if you can like

swimming) to keep your muscle mass up. Have you had a bone density test done to

see what your density is as a baseline? It's not something the docs usually

think of for young women, but for us (young women who are sick) it's important.

Although I'm not so young any more, I WAS young when I was first diagnosed with

lupus, in my 20s, but I started having joint pain when I was a little girl and

was examined by rheumies back then. But Stills was pretty much unknown then in

the '70s; not so well known either in the 80s when I was diagosed with the wrong

disease.

Anyway, I just wanted to add that reminder because we don't need any EXTRA

problems....

[Guest guest]

Hi ,

I had been wondering the same thing. I was diagnosed with Endometriosis at the

age of 22 after much pain. I had a few laperoscopys and two with laser but the

pain always came back. After my first child at age of 30 it was easier for a

couple of years then after my 2nd at age of 32 it got really bad again and in

the end I had an hysterectomy by a specialist who also 'dug' out all remaining

endometriosis. Since then I have had virtually not pain, but it did escalate the

stills and the joints etc have caused me more trouble since.

I dont know whether there is any connection, or if if made our bodies more

susceptable to the stills, but it does seem to be a coincindence that a few of

us have had the endo first!!!

Love and warm hugs to all my fellow stilligans, lets keep warm and smile from

the inside.

Ruth xx UK

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[Guest guest]

Interesting thought . Most of my abdominal pain went away with my

hysterectomy. I did find that when I did still have pain afterwards that it

seemed to be more bowel related. I noticed that a lot of what I thought were my

severe menstrual cramps felt the same as my bowel pains. I've been diagnosed

with irritable bowel syndrome also, and that was years ago, but now I'm

wondering as you, whether these were maybe early Still's symptoms.

I saw Dr. Cush on Wednesday and now he's not sure that I have Still's. I don't

meet all of the criteria. My internal organs, spleen, liver and such seem to be

fine. But then when I read some of the radiological reports, they sounded

different. He also noted that my bone marrow biopsy that supposedly ruled out a

couple of things, that there were a couple of things on the report that didn't

sound right they were abnormal and out of range and weren't explained, so now he

wants me to see an Oncologist regarding them. Oh goody! He also said that I

have Fibromyalgia also. He switched around some of my meds and is taking me off

Prednisone slowly (which hopefully means that I will get rid of this distended

belly or what looks like a baby I'm going to give birth to anyday now, budda

belly). He did take some blood and is putting me in a research study. I guess

they are trying to devise a test for Still's, to check for certain markers and

such. He said the results may not be back for 4 months or so, there's just no

telling. In the meantime, I just wonder what I have and what to do next.

He did put me on some new meds and for the first time last night, I slept the

whole night! It was so odd. I woke up, looked at the clock and almost jumped

out of bed and did a little dance.

Stills and endometriosis???

Hi everyone!

I've noticed an inordinate number of women on this list complaining of

endometriosis. I was diagnosed with it too, was on Lupron and then had an

laparoscopy with fulgaration. Anyway, I was reading the long article by Dr. Cush

on the Stills site and something struck me. But let me explain my thinking

systematically.

1. I used to work in OB/GYN at UCLA Medical Center. I know from my work there

that in many cases (like mine) the amount of pain is not related to how bad your

endometriosis is. There are women with huge amounts of it in no pain and other

women with small amounts with huge amounts of pain. When my doc opened me up,

she found very little endometriosis. Still, she cleaned me out. The pain did not

go away.

2. The article by Dr. Cush talks about abdominal pain of unknown original with

Stills.

I am wondering if many of us (including me) were misdiagnosed with endometriosis

when the pain was really part of the Stills? So my question to the women in the

group: if you were treated for endometriosis, did your abdominal pain go away?

And if it didn't go away with that treatment, how has it been since you've been

on Stills medications?

I suppose the fact that I was misdiagnosed with lupus prior to the Stills

diagnosis makes me look at all diagnoses with skepticism. If they were wrong

about the lupus, were they wrong about the endometriois too?

What do you all think?

[Guest guest]

,

What meds did Dr. Cush put you on? Did he do the " fibro cocktail " ? My lovely

soon-to-be-ex-husband is trying to use info about me taking those meds as a

reason to have me lose custody. His theory is that with those meds I would not

be able to respond if anything happened during the night. Except that my other

daughter is 22 y.o. and I have a 44 y.o. roommate too. And there's 911. So

stupid. But back to your issues.

So Dr. Cush is questioning your diagnosis? That's interesting because I've had

a feeling that patients are getting OVER diagnosed these days with Stills. (Not

you in particular.) I have just seen too many people lately who have been told

they have Stills when it makes no sense. I think that EVERYONE should be wary

if they get a diagnosis of Stills from anyone BUT a rheumy. I truly do not

think that an ER doc or internist has the specialized knowledge to run all the

tests to rule out other rheumy diseases.

Now back to your case: what was abnormal in your bone marrow? (And wasn't the

biopsy horrible?? I personally think that's the MOST painful of all the tests

I've ever had.) But just remember that Stills is a diagnosis of EXCLUSION and

simply because Dr. Cush saw an abnormality he needs now to rule out other

possible causes of that abnormallity before he can give you a Stills diagnosis.

That's another reason I question some of the diagnoses of Stills, that the

people simply have not had time to have all the tests run to rule out other

things. And how you are treated medically depends on what you have.

Speaking of which, have you ever gone through a steroid taper before? If you

haven't, go as slowly as possible. Why exactly IS he tapering you? What's the

goal here? Is he tapering you because he thinks it's harmful to what's going on

with your bone marrow? Or does he want to start you on a new medication? I've

also seen way too many docs push patients to wean off steroids too soon causing

them to flare. It's better to start a new med, get it working, and THEN taper

the steroids. Then you're only dealing with the taper pain and not disease pain

too. Once you get below 10 mg, only drop by .5 mg every few days. Our bodies

make approx. 10 mg normally. When you take steroids long term, your body stops

making them. As long as you're taking more than 10 mg, it's " extra " , but below

that level, your body has to start making steroids again and sometimes that's a

struggle. Most patients have joint pain that can be confused with flares from

tapering steroids. Just know that you'll be extra-achey during your taper.

Good luck.

[Guest guest]

Hi all,

I feel I must send out a reminder that we cannot and must not give medical

advise about medications, dosages and treatments. That is something that is left

to our doctors. Everyone is different and it could be very dangerous to give

advise without knowing everything about a persons particular case. You may share

your experiences from your past, just not what someone else should do.

Thank you,

Re: Stills and endometriosis???

Speaking of which, have you ever gone through a steroid taper before? If you

haven't, go as slowly as possible. Why exactly IS he tapering you? What's the

goal here? Is he tapering you because he thinks it's harmful to what's going on

with your bone marrow? Or does he want to start you on a new medication? I've

also seen way too many docs push patients to wean off steroids too soon causing

them to flare. It's better to start a new med, get it working, and THEN taper

the steroids. Then you're only dealing with the taper pain and not disease pain

too. Once you get below 10 mg, only drop by .5 mg every few days. Our bodies

make approx. 10 mg normally. When you take steroids long term, your body stops

making them. As long as you're taking more than 10 mg, it's " extra " , but below

that level, your body has to start making steroids again and sometimes that's a

struggle. Most patients have joint pain that can be confused with flares from

tapering steroids. Just know that you'll be extra-achey during your taper.

____________________________________________________________

Nutrition

Improve your career health. Click now to study nutrition!

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[Guest guest]

Amen sister could not have said it better my self and is so few of words toLOL!

 the redneck

Marty G.

________________________________

From: mellymelt

Sent: Sat, January 9, 2010 6:22:31 PM

Subject: Re: Re: Stills and endometriosis???

Hi all,

I feel I must send out a reminder that we cannot and must not give medical

advise about medications, dosages and treatments. That is something that is left

to our doctors. Everyone is different and it could be very dangerous to give

advise without knowing everything about a persons particular case. You may share

your experiences from your past, just not what someone else should do..

Thank you,

[Guest guest]

Hi ,

As far as the steroids, he's reducing me slowly, but he has also put me on

Plaquenil. I'm down to 15mg of prednisone and that's for 2 weeks and then I see

him again. Let's see my night meds...Lunesta, Clonazapam, Mobic,

Hydrocodone-APAP. First night had a great night' sleep, but that was the only

one. I've been having major hip, side and back pain and I think that is

probably keeping me up as well. I don't see what difference it makes what

you're taking if there's a 22 and 44 year old on the house with you. That just

seems cruel to me.

My diagnosis in the hospital was actually made by a rhumy. I just don't think

he has that much experience with it. As far as Dr. Cush goes, I just wonder if

since I'm at the early stages, that maybe I just have been fortunate enough not

to have the internal damage yet. He actually used a chart of sorts on the

computer, adding points and so forth as we went along. It definitely felt like

a research situation. I find it odd that the Rheumatologists don't really seem

to exam you. Or at least not in my case. I've remained clothed the whole time.

Dr. Cush said something about... " well you don't have a rash " which I replied

" yes, I do, and lifted my shirt to show him, pulled down my shirt to show him

and took off my sock. Didn't bother showing him the one on my leg and

obvioiusly he didn't notice the one on my face. It's just frustrating, I'm

afraid I'm going to scream at the next doctor DON'T YOU WANT TO SEE ME NAKED?

LOL. Otherwise how do they properly examine you. But, I did like Dr. Cush, he

seemed to know more and spoke to me when he wasn't typing. He also gave me a

full print out of our consultation, which was nice to have in my hands when I

left. Although I will say after reading it I did find some inaccuracies in how

I answered. He's also determined that I have fibromyalgia and a couple of other

things.

As far as the bone marrow, it shows abnormal BM Karyotypic studies, showing 46,

XX, add (12) (p11.2[18]/46,XX[2]. W/deletion of 12p - sometimes associated with

neoplasias (myelodysplasia, etc.). I have no idea what that means. White blood

cells: slight increase in number and include granlulocytes with mild toxic

features. That's the one I believe he's curious about. Granulocytes and

precursors: progressive maturation and toxic change. Diagnosis: Bone Marrow:

(peripheral blood, aspirate smear, core biopsy and clot section): normocellular

bone marrow with trilineage hematopoiesis and no morphologic evidence of

hematolymphoid malignancy. Negative for acid fast bacilli and fungi (afb and

gms stains). granulocytes with toxic change. Peripheral blood: normocytic

anemia, mile leukocytosis including granulocytes with toxic features, mild

thrombocytosis. I guess maybe there's some genetic flaw or something. I have

no idea. When I go and see the oncologist hopefully he will explain it to me

better.

It's so frustrating when you get a diagnosis, but then someone else says

something else. You get this horrible diagnosis and it seems to match, but then

again maybe not totally, but they've tested for everything else and ruled them

out. I'm afraid the next doctor I see I will just be a total b____. I'm tired

of feeling so intimidated by them. It's like they hold your future in their

hands. And if they tell me don't do something because it'll make you worse,

then I believe them. But if they can't get a correct diagnosis how do I know

that what they say is actually right?

I'm getting wound up, better settle down. Right now I'm trying to get all of my

social security stuff taken care of also and trying to figure out what else is

out there to help me. I had just started a new job when this Still's started,

so I'm in pretty sad shape right now. I'll figure it out, it just gets tough

living alone and my parents live in California and my friends are in other

cities with their families...you know...husband...2.4 kids. I hate to bother

people so I just try to take care of everything myself, which probably tires me

more than anything.

Good luck with the to be ex. I hope you get to keep your child(dren).

Try to have a sunny day.

Re: Stills and endometriosis???

,

What meds did Dr. Cush put you on? Did he do the " fibro cocktail " ? My lovely

soon-to-be-ex-husband is trying to use info about me taking those meds as a

reason to have me lose custody. His theory is that with those meds I would not

be able to respond if anything happened during the night. Except that my other

daughter is 22 y.o. and I have a 44 y.o. roommate too. And there's 911. So

stupid. But back to your issues.

So Dr. Cush is questioning your diagnosis? That's interesting because I've had a

feeling that patients are getting OVER diagnosed these days with Stills. (Not

you in particular.) I have just seen too many people lately who have been told

they have Stills when it makes no sense. I think that EVERYONE should be wary if

they get a diagnosis of Stills from anyone BUT a rheumy. I truly do not think

that an ER doc or internist has the specialized knowledge to run all the tests

to rule out other rheumy diseases.

Now back to your case: what was abnormal in your bone marrow? (And wasn't the

biopsy horrible?? I personally think that's the MOST painful of all the tests

I've ever had.) But just remember that Stills is a diagnosis of EXCLUSION and

simply because Dr. Cush saw an abnormality he needs now to rule out other

possible causes of that abnormallity before he can give you a Stills diagnosis.

That's another reason I question some of the diagnoses of Stills, that the

people simply have not had time to have all the tests run to rule out other

things. And how you are treated medically depends on what you have.

Speaking of which, have you ever gone through a steroid taper before? If you

haven't, go as slowly as possible. Why exactly IS he tapering you? What's the

goal here? Is he tapering you because he thinks it's harmful to what's going on

with your bone marrow? Or does he want to start you on a new medication? I've

also seen way too many docs push patients to wean off steroids too soon causing

them to flare. It's better to start a new med, get it working, and THEN taper

the steroids. Then you're only dealing with the taper pain and not disease pain

too. Once you get below 10 mg, only drop by .5 mg every few days. Our bodies

make approx. 10 mg normally. When you take steroids long term, your body stops

making them. As long as you're taking more than 10 mg, it's " extra " , but below

that level, your body has to start making steroids again and sometimes that's a

struggle. Most patients have joint pain that can be confused with flares from

tapering steroids. Just know that you'll be extra-achey during your taper.

Good luck.

[Guest guest]

I hear ya!

Re: Re: Stills and endometriosis???

Hi all,

I feel I must send out a reminder that we cannot and must not give medical

advise about medications, dosages and treatments. That is something that is left

to our doctors. Everyone is different and it could be very dangerous to give

advise without knowing everything about a persons particular case. You may share

your experiences from your past, just not what someone else should do..

Thank you,

[Guest guest]

,

I feel your pain. [g] It's so frustrating. I was told for 20 years I had

lupus, then suddenly I was told, " Oops, it never was lupus, it was Stills. "

Docs make mistakes, but for us part of our identity is tied up in our disease,

it's part of what makes us who we are, regardless of how much I preach that we

aren't our diseases.

I do have a question though; how can he decide you don't have Stills because you

don't have internal organ damage (yet)?

My next thing is that frankly I'm SHOCKED that Dr. Cush didn't examine you.

I've had many rheumies over the years and the GOOD ONES always examine you. I

realize that times are changing and everything is computerized, but typing

during the consultation? It sounds like he's more interested in his study than

his patients. A good rheumy will move your joints, check for extension, check

for strength (which really is difficult to do without TOUCHING a patient), look

for rashes. Also difficult to do if the patient is clothed. My rheumy

discovered that I had a large RA cyst on my elbow that I hadn't noticed. That's

why it's called an EXAMINATION. If he's going to spend all the time staring at

the keyboard, he could do the whole thing OVER THE PHONE. Those of you who know

me know that I would have TOLD the doc to step away from the keyboard (please)

and deal with ME.

Now for information for you concerning what he said about " myelodysplastia "

here's some info from wikipedia about what MDS means.

The myelodysplastic syndromes (MDS, formerly known as " preleukemia " ) are a

diverse collection of hematological conditions united by ineffective production

(or dysplasia) of myeloid blood cells and risk of transformation to acute

myelogenous leukemia (AML).[1] MDS has been found in humans, cats and dogs.

Anemia requiring chronic blood transfusion is frequently present.

Me again: finding this in your marrow means you have a propensity towards it.

But having a propensity does NOT mean you will necessarily ever get it.

Probably the hemotologist will have you come in at yearly intervals to check

your blood. Or he'll speak to your rheumy about staying on top of your drugs.

The last things is that if you are continuing to have chronic pain, you might

want to see a pain management doctor. Often older docs are not trained in the

management of patients in chronic pain and I've seen my share of patients given

inappropriate treatment by docs for pain because a) they don't know better,

they are afraid of getting in trouble with the DEA and don't want to prescribe

controlled substances, c) they underestimate the amount of pain you are in. A

study done a few years ago showed that the vast majority of patients in pain are

undermedicated for an assortment of reasons. So go see a PM doc. They have a

whole bag of tricks to help you feel better, everything from simple meds to

spinal injections to morphine pumps.

And please, please please, do not WAIT to take your pain meds until the pain is

horrible. I don't know where people get the idea that it's somehow BETTER to

hold off. By the time the decide to take the med, the pain is often so bad that

the meds won't work on it. Pain medication for chronic pain patients should be

taken (as prescribed by the doc) on a SCHEDULE.