first post

[Guest guest]

Hi ,

MTX has worked, he was on crutches when we started. He's walking now but

having some bad days. I imagine the unusually cold winter here is not

helping. The MTX didn't heal him completely at least not yet.

His x-rays over the last 30 days looked worse. (either got worse or it was a

better angle IMO) That's why we are looking towards Enbrel.

He started in Oct-Nov. with MTX. How long before your son was feeling no

pain?

Thanks.

--

R-)

[Guest guest]

Has your son been on any prednisone? It is not a long term solution but can be

used very successfully to bring down the inflammation until the other drugs can

kick in. If he is having damage aggressive treatment will help halt progression

of the disease. Also, I have had great benefits from modifying my diet. I don't

think diet alone will control my disease but it certainly has helped. If you

would like info on what I have done feel free to reply. Otherwise, there is a

lot of info on the internet about dietary triggers and inflammation being caused

by foods that we are either allergic to or sensitive to.  God bless, Patty

[Guest guest]

I have heard that it takes up to 12 weeks for MTX to work fully. Grant has been

lucky, he never has had much pain with his PsA just swelling. So his swelling

went down immediately within a couple weeks on MTX. Sorry I am not much help

there. We have been trying to slowly taper the MTX for the last 18 months. In

the last few months though he has been having a lot more stiffness. We may need

to stop the taper pretty soon.

Being able to get off crutches is awesome!! I hope the Enbrel works quickly for

him to take away the rest of his pain.

[Guest guest]

He tried prednisone last February and it worked like a miracle. At that

time he had swelling of both knees which was misdiagnosed as JRA. He played

hard the entire Tennis season with little pain. He also put on some much

needed weight as he had grown like 7 inches right before he started with the

swollen knees so he was never able to fill out.

Pretty much as soon as he quit taking the prednisone his left hip started

hurting

really really bad until he could no longer stand on it and had to use

crutches around July.

We didn't get him correctly diagnosed until Oct then he started MTX

injections. It got him off crutches but he is still in pain and he has some

destruction of the left hip. He's up to .8 mg right now. His doc says

that's the highest dose he can take. His doc is also totally anti steroids

and said he would never have given them in the first place.

Pressley, Shriners in Shreveport

We are planning on all starting the " Phase One " diet on Monday.

http://www.knowthecause.com

*I would be very interested in what you have found to be triggers though.*

--

R-)

[Guest guest]

Hello all,

My name is I'm 38 and I have been diagnosed with PsA. I have been

reading many posts on this forum and have learned a lot of info about PsA.

Everyone on here is wonderful and we will all be stronger for connecting through

this wonderful forum. One thing I would like to recommend is that everyone state

their age when they post. What might work for some won't work well for others

because of age differences i.e. exercise or medications.

My doctor put me on MTX and I have been on it for 10 weeks now. The only thing

it has done for me is make me sick. I get severe headaches and nausea, and I

feel very fatigued. It hasn't helped with the pain one bit and I am ready to

stop it all together. I was prescribed Humira by my doctor but my insurance wont

cover it. Anyone have any suggestions on how to get it? And how long before

people on MTX started seeing the effects?

Since being diagnosed I have changed my diet completely. I've cut out red meat

and eat very healthy. Lots of fruits and vegetables.Brown rice and flax seed.

Granola and yogurt as well as buffered vitamin C to help my immune system. Most

over the counter vitamins don't absorb into your system but buffered vitamins

do. I got a book called " How to  Eat Away Arthritis " by Laurie M. Aesoph N.D.

While all of her techniques aren't for me it does have some great diet tips and

cleanses for your body.It also tells you which foods are triggers for arthritis.

I've also started hitting the gym regularly. I use an orbital machine because it

is low impact and I also swim laps in the pool. I'm up to 25 per session. I've

noticed that my pain hasn't necessarily gone away but it has made my other

muscles stronger to help me compensate for my damaged joints.

I also started smoking marijuana. In California it's legal if you have a

license. My doctor prescribed me Vicodin for the pain but all it does is

literally make me stupid. It takes the pain away but it takes away my life too.

I become a zombie, sleep all day, forget things and really just become

depressed. On Vicodin I am a PsA sufferer who can't do anything at all. I found

smoking pot relaxes my muscles and calms me down when I am in pain. it doesn't

take the pain away but it makes it more manageable and I am still able to

function a s a normal person, instead of being like a zombie all day. I was

skeptical at first but a person I met who had cancer recommended it. I am a

believer now. If you haven't tried smoking marijuana, it might be an option for

you. Some people say pot is bad because it's an illegal drug. Not in California.

Personally I would much rather smoke some pot and be able to function than take

a pain killer that destroys my perception

of reality, destroys my liver and knocks me out. Plus I don't want to become

addicted to prescription drugs.

If anyone has some info on the MTX I would appreciate it

Thanks for reading and hopefully everyone has a pain free day!

C. Costa Mesa Ca. Age 38

[Guest guest]

I am glad you found something to ease your suffering.

--

R-)

On Fri, Feb 26 <avenueofthesun@...> wrote:

Since being diagnosed I have changed my diet completely . . .

I've also started hitting the gym regularly . . . I also started smoking

marijuana.

[Guest guest]

To the girl in Cal.

Wow. Can I come over. Can you imagine holding a get together

with other license pot smokers. Geez.. the fun we all might have .LOL.

But really we probably with our luck get arrested. I am 43 and I take,

Cymbalta, Celebrex, Humira, Provigil,lets see stuff for antacid.(

forgot the name of it) and. Asmanex.. I do have a emergency narcotic

just in case. I have not had to use it. I use a Nustep , but have not

this week. I have a slight cold , The first in 4 years. I just started

the Humira 3 weeks ago. My skin, is not as reactive and is feeling

better. Looking forward to it helping my joint pain and stiffness.

Hoping to come off the Celebrex. I have had my PsA for about 18 years

but was not formal diagnosed until 4 years ago. I had other health

problems, was active with the pain, it started as heal spurs in both

feet. I had low back pain and fevers and hives when I got married. Had

my Psoriasis start around then two. But chalked it up to dermatitis. I

had shingles and reoccurring fevers at the same time. Shingles came

after. Fever subsided after 6 months or so. It was terrible. In fact

that was the worse for me. The hives lasted 5 years off on on and was

very itchy and of course then we did not know what that was. Its know a

autoimmune urticaria. You have a antibody that they now can test for. I

actually had my first bout with that at age 17. and fevers, joint pain,

and pericarditis. They removed the pericardium. Again, the fevers were

the worst. Yes the intermittent pain of arthritis can be excruciating. I

did have that pattern of yucky pain back in October that affected my

hips. But the medicine is helping me. The other problem that comes in

3rd to pain, fever, pain, (could be a tie their) is FATIGUE. ITS

UNRELENTING. Few days that I can say I AM THE ENERGIZER BUNNY. A GOOD

THOUGHT TO THINK. THINK I AM THINK I AM... CHUCKLE. Also, The

pericarditis was thought to be a virus. that contributed to its demise.

[Guest guest]

greetings....and yes, I also was 38 when I was first started to get PsA. this

the normal age to get it....try to take folate, a pill form of a vitamin. keep

on taking MTX, for some people, it will take longer to help you. hang in

there....blessed be....bob

[Guest guest]

I am confused by your statement that he was mis diagnosed with JRA so you didn't

start MTX until Oct when you got the correct diagnosis. JRA is treated pretty

much the same as PsA. Especially when first starting out. In fact our rheumy

wasn't even all that concerned with the type of JRA Grant has because it is all

treated the same.

-

[Guest guest]

1. But to be honest all my research has been PsA related. His rheumy says there

is no way he has/had JRA since the arthritis is only happening on one side of

his body whereas JRA always happens symmetrically.

2. I wasn't aware that methotrexate was used for JRA.

3. Hah. Yea, eat every meal at Mcs and take fish oil daily and you'll do

just fine. I couldn't disagree more.

--

R-)

[Guest guest]

Hey ,

I'm 38 also. My mom actually called and read she had heard about the same

herbal remedy you mention. I also hate pain killers so tried the alternative

approach ( i had some prior experience)

i am a believer.

on the primary meds, I still use Nabumentone and lots of sulfazine as my primary

meds and have avoided mtx to date.

cheers

[Guest guest]

my son is 14 and it took them 13years to figure out he had aspergers. What i

dont understand is his dishonesty about how everything is okay then i get calls

from the school aout his emotional break downs and he has been saying

nonchalantly how he wishes he was dead but then takes it back. He is on abilify

and prozac and is receiving counceling once a week. he just doesnt open up about

what is going on. I try to help by talking to him alot and things seem to get

better than he will have a crisis without coming to me. I dont know what to do

[Guest guest]

I can relate to your feelings. This is hard stuff. I would recommend any books

by Tony Attwood about Asperger's to help you understand him and help you with

anything else you can do for him. I don't know any titles of his books offhand,

but I think he has a website and probably newer books than I'm aware of.

Leah

>

> my son is 14 and it took them 13years to figure out he had aspergers. What i

dont understand is his dishonesty about how everything is okay then i get calls

from the school aout his emotional break downs and he has been saying

nonchalantly how he wishes he was dead but then takes it back. He is on abilify

and prozac and is receiving counceling once a week. he just doesnt open up about

what is going on. I try to help by talking to him alot and things seem to get

better than he will have a crisis without coming to me. I dont know what to do

>

[Guest guest]

I have the same issue with my 15 yr old son. Every day the conversation goes

like this: 'How was school?' 'Fine.' The only exception is when he thinks that

the school has contacted me about something. Sometimes he hasn't realized that

the school has contacted me and I will ask him 'What about xxx?' Then he will

usually talk to me about it. I don't think it's dishonesty so much as a

reluctance to tell us everything that is going on in his life (a typical teenage

attitude.) I do keep in close touch with the school but sometimes they don't

notify me about something until some time has passed since the incident. I do

have a lot of conversations with my son so he does talk about some stuff

eventually but it's usually long past the time of the original incident.

We're trying to help my son develop the necessary skills to deal with a crisis

on his own. The school has helped with providing more intensive counseling in

social skills along with reviewing any incidents that happen with the counselor.

Beyond making sure that the school is providing enough support for your son I

don't think that there is much more that you can do but keep in close contact

with the school so that you know about any incidents then that you can discuss

with your son.

My son started threatening suicide in 6th grade. Soon after he started seeing a

counselor outside of school 2x/m. Seeing the counselor has helped keep the

suicide threats to a minimum but we still get the occasional threat. Any suicide

threat concerns me but his counselor thinks it's more of getting attention

rather than a serious threat. My son is not on any meds.

Caroline

>

> my son is 14 and it took them 13years to figure out he had aspergers. What i

dont understand is his dishonesty about how everything is okay then i get calls

from the school aout his emotional break downs and he has been saying

nonchalantly how he wishes he was dead but then takes it back. He is on abilify

and prozac and is receiving counceling once a week. he just doesnt open up about

what is going on. I try to help by talking to him alot and things seem to get

better than he will have a crisis without coming to me. I dont know what to do

>

[Guest guest]

I don't think it is dishonesty. I see the same thing in my son and in

the others who also are on the spectrum. This same thing is what

causes it to be hard for them to carry learned responses/experience

from one situation to another setting. They really don't connect the

two settings. The theory of mind thing gets in the way too. They

assume that what they know, you know. It is not hiding things, just

assuming that you already have the information. The same thing

results in going out in hot weather with a jacket on or going out in

cold weather in shorts and short sleeve shirt. They don't always make

the same connections between events and choices.

Sometimes when there is a flareup or meltdown, they don't remember all

of it. In the same way some epileptics don't remember the seizure.

On 1/1/11, ennisdanielle75 <ennisdanielle75@...> wrote:

> my son is 14 and it took them 13years to figure out he had aspergers. What i

> dont understand is his dishonesty about how everything is okay then i get

> calls from the school aout his emotional break downs and he has been saying

> nonchalantly how he wishes he was dead but then takes it back. He is on

> abilify and prozac and is receiving counceling once a week. he just doesnt

> open up about what is going on. I try to help by talking to him alot and

> things seem to get better than he will have a crisis without coming to me. I

> dont know what to do

>

>

[Guest guest]

Sounds like you have some docs who've done their homework so far. Good luck and welcome. Keep us posted.

From: ian_burdon <offwithyourspam@...>Subject: First posthyperaldosteronism Date: Monday, June 11, 2012, 10:44 AM

Hello, I've just joined and thought I'd introduce myself. I'm Ian, 52 and live in Edinburgh, Scotland. We're pretty sure that I have hyperaldosteronism - I have a saline suppression test lined up for next week as final confirmation by which time some DNA checks on my bloods will also be completed.I was diagnosed with High BP shortly after I ran a half marathon in 2009 and fainted a couple of hours afterwards. I had low potassium and it was assumed that I had got my nutrition wrong for the run. Last year my doctor referred me to the metabolic unit at our local Hospital and the specialist there noticed persistent low potassium and had a hunch which seems to be proved correct.More as we get it!

[Guest guest]

Thanks

I should have added, a week after the half marathon they noticed very high blood

pressure which was brought under control but was persistently at the high end of

the normal range. It was the BP which eventually led my doctor to refer me to

the Metabolic Unit.

The way we operate here, the hospital was able to call up the results of all of

my BP measurements and blood tests for the period 2009 - 2011 that my doctor had

arranged to monitor renal functions because of the BP medication. Similarly my

doctor can see on screen everything that the hospital does - the joys of an

integrated health system.

Ian

>

>

> From: ian_burdon <offwithyourspam@...>

> Subject: First post

> hyperaldosteronism

> Date: Monday, June 11, 2012, 10:44 AM

>

>

>

>  

>

>

>

> Hello, I've just joined and thought I'd introduce myself. I'm Ian, 52 and live

in Edinburgh, Scotland. We're pretty sure that I have hyperaldosteronism - I

have a saline suppression test lined up for next week as final confirmation by

which time some DNA checks on my bloods will also be completed.

>

> I was diagnosed with High BP shortly after I ran a half marathon in 2009 and

fainted a couple of hours afterwards. I had low potassium and it was assumed

that I had got my nutrition wrong for the run. Last year my doctor referred me

to the metabolic unit at our local Hospital and the specialist there noticed

persistent low potassium and had a hunch which seems to be proved correct.

>

> More as we get it!

>

[Guest guest]

Recommend you read my Evolution of PA article. Tell you team I trained with Dr. Conn and have prob done more saline testing than most. Indeed we were the ones who popularized it. Grim and Weinberger. I attach our welcome in case you did not get it. Welcome to the exciting world of Hyperaldosteronism You are in the right place! I am Dr. CE Grim a retired (well semi-retired) Professor of Medicine and Endocrinology. I have had a long standing interest is Primary Aldosteronism since medical school days when I saw my first patient with Primary Aldosteronism in 1963 as a 4th year medical student. I did a Nephrology Fellowship at Duke and an Endocrinology and Metabolism Fellowship with Dr. Conn (1969-70). I have been on the faculty of the University of MO, Indiana Univ, UCLA/ R. Drew, and the Medical College of Wisconsin in Divisions of Nephrology, Endocrinology, Hypertension, Cardiology and Epidemiology. I have published over 240 papers and book chapters in most areas of the broad discipline of High Blood Pressure. My CV is in our files for details. The GOAL of our group is to teach you and your health care team about the ins and outs of the causes, diagnosis and control of the many forms of hyperaldosteronism. The steps below will introduce you into the fascinating world of high blood pressure, salt and potassium and the role of the adrenal hormone aldosterone in health and disease. Doing these in sequence will save you time and effort in getting up to speed in taking control of you health and educating your own health care team. While we can’t make you a doctor we will make you into a pretty good BP doctor-a skill that you will have for life. 1. Overview: Read my article in our files on the evolution of PA (Evolution_of_PA-Grim.pdf ) and take to all members of health care team. Tell us what stage you believe you are in. This is a brief review of most causes of hyperaldosteronism, high blood pressure, and low potassium (K). Be certain that you and your health care team understand the key role of excess diet salt in HTN and especially in PA. Without excess salt in the diet, aldosterone cannot do most of its damage. Go to: http://www.worldactiononsalt.com/evidence/treatment_trials.htm For a state of the art and science discussion of salt and health. 2. Conn's Stories. Other patients with hyperaldosteronism (Conn’s syndrome). Read our Conn's stories in our files and then give us your own in as much detail as you can. Dr. Conn was the first to describe this disease process and the syndrome is named after him. I trained with him and his team in Ann Arbor, MI in 1969-70. To see others' stories on the Hyperaldosteronism home page, go to Files/Conn’s Stories. You'll find instructions in "A - How to put your story here.doc "Then send us your story in an email and then we will likely ask more questions and make suggestions before you upload it to our files. 3. Hyperaldosteronism and Salt: The Deadly Duo. In oder for aldosterone to cause its damage one must also eat excess salt in the diet. Thus much of the damage can be controlled/reversed by lowering salt (sodium) intake and increasing potassium intake. This is the essence of the low sodium DASH eating plan. Eating Plan to control high blood pressure due to hyperaldosteronism and most others with high blood pressure. This will reduce your need for medications and in many will get your BP and K to goal without meds.. Get the DASH diet book by T. et al, read it and use it: $8 in paperback at your local bookstore. If they don’t have it ask them to order it for you. Learning to eat the DASH way will play a major role in your road to good BP and K control and, in many of our folks here, will revolutionize your life. Go to chapter 9 and do the 14 day challenge. Tell your Dr you are doing this as your BP may plummet if you are on other meds in only 2-3 days. or go to http://www.nhlbi.nih.gov/health/public/heart/hbp/dash/new_dash.pdf download this 64 page booklet free and do the Week on the DASH Diet for 2 weeks. If you are on BP meds be prepared for a large fall in BP and let your Dr. know you are doing this. Or go to (but costs money) DASH Diet for Health ProgramThe DASH Diet for Health Program is designed to help you improve your eating and exercise habits. Twice each week we will provide you with information on our website about food, food preparation, eating out, losing weight, getting fit and much more. In addition to providing new information each week on our website, we create a web page specially for you where you can track progress in areas such as your weight, blood pressure, and exercise.http://www.dashforhealth.com/ I strongly recommend you get the book and read it now! 4. Measure your own BP and insist that your health care team always measures BP correctly with an recently calibrated device: Measure your BP daily so you can see if it is getting better. If you are taking meds be sure to tell your health care team you are doing this as your BP may plummet to normal quickly. We recommend you use a device you listen to and will help you learn how to do this. If this is not something you want to do we can teach a significant other how to do it. See sharedcareinc.com or email to sharedcare@... to order a video on how to do this. If you already have one we will teach you how to teach your health care team how to validate your device. Your life and health depends on accurate BP measurements. Go to the amricanheart.org and download the Guidelines for Human Blood Pressure Measurement. Insist the your health care team do BP the AHA way. Your life is in the hands of those who measure your BP. Never trust your life to an automatic BP machine unless you know it is accurate on YOU. Most devices will read at least 25 mm Hg too high or too low is some people. The only way to know if you are one is to have your and any other automatic devices checked for accuracy in you. Instructions for doing this are in our files. 5. Genetics and your BP: Go to familyhistory.hhs.gov and do your detailed family medical history so we can review with you to help Dx familial causes of high blood pressure and heart disease. If BP runs in your family you may save lives in your family by checking their BP yourself. There is a brief discussion of this in my Evolution Article. 6. How to DX and treat PA: Go to our file/Conn's Articles of Note/Medications/Bravo spir 1973.pdf and read this article and take to your health care team. It is old but still one of the best in the medical management of PA. Also see our file from the Endocrine Society Guidelines on PA. Dr. Grim's Perfect Primary Aldosteronism Blood and Urine Testing to diagnose PA in one day with the testing for Pheochromocytoma and Cushing's thrown in. 1. Eat a high salt diet for 2 weeks-at least 4000 mg of Na a day. 2. No BP meds in last 4-12 weeks depending on meds and Drs advice. 3. Collect accurate 24 hr urine for Na, K and creatinine, aldosterone, urinary free cortisol and catecholamines. See which ones your lab can do all in the same sample. Do not lose a drop of this liquid gold. It is impossible to interpret the plasma renin and aldosterone and urine aldosterone and cortisol without this information. 4. The morning you finish the 24 hr urine have fasting blood drawn for renin, aldosterone and K using our guidelines to get an accurate K. Try to get this done about 1-4 hours after you have been out of bed. Be sure the laboratory orders and does aldosterone NOT aldolase. 5. Send us the results with the normal values for your lab. 6. If you ever have a salt (saline) infusion test for PA be certain to ask them to measure how much you pee during the 4 hours of the infusion. If it is 1-1.5 liter of urine it strongly suggests that you may have PA. If more tha 1.5 L you almost certainly have PA. I call this Dr. Grim’s “Quick Pee Test” for PA. 7. Our PA Registry: If you have been Dxed with PA already and are on Rx or have had surgery please go to http://www.kwiksurveys.com/online-survey.php?surveyID=HIJIO_f2685379 and complete our survey with as much information as you know. If there is some information you don't know ask us and we will help. If you need to update this as you journey thru the diagnostic/treatment process you can add another entry but label it as Nameyymmdd. For example today 5/1/12 for me would be Grim120521. This way of writing the date is an ever increasing number and will allow us and you to sort your multiple entries into a dated order. We are working on a more extensive database. 8. Learn the language: If you are new to medical lingo then download the acroyms from bloodpressureline/message/291869. Salt and high blood pressure: To learn the state of the science of salt and blood pressure please spend some time looking at http://www.worldactiononsalt.com/evidence/treatment_trials.htm10. Become a HBP expert consumer: Expect that it will take at least several weeks to get all this digested and to learn the new language of high blood pressure health care. As most doctors and nurses in practice have had very little training in high blood pressure you must become an expert yourself. For example most have never had anyone listen with them with a double stethoscope to verify that they can hear BP sounds. We cannot make you a doctor but we will make you a pretty good BP doctor.11. Learn as much as you can about how High Blood Pressure should be diagnosed and managed: Go to nih.gov and download and read the latest Joint National Commission (JNC) Report to get an overview on current guidelines. I have always asked all my staff (including secretaries) to read this so they can communicate the importance of high blood pressure to my patients. Then: get (and study) the Hypertension Primer from americanheart.org. This is the most up-to-date compendium of what is known about high blood pressure and what every Dr. should know when they graduate from Medical School. Every chapter is only 2-3 pages. Read one chapter every week-night and you will finish it in about a year. I am working on a reading guide for lay people for the Primer. Stay tuned.12. Ask us questions: Ask any questions about high blood pressure you want answered. That is what we are here for.13. One-on-one Consulting: I can provide individual consulting if you do not want to go public. If you want individual one-on-one consulting for you and your medical care team contract me directly at lowerbp2@.... My consulting fee is $500 for one year access to my expertise e-mail or by iChat or Skype or snail mail. May your pressure be low!Clarence E. Grim BS, MS, MD, FACP, FACC, FASH.Board Certified in Internal Medicine, Geriatrics, and High Blood Pressure Specializing in Primary Aldosteronism and Difficult to Control High Blood Pressure. On Jun 11, 2012, at 11:57 AM, ian_burdon wrote: Thanks I should have added, a week after the half marathon they noticed very high blood pressure which was brought under control but was persistently at the high end of the normal range. It was the BP which eventually led my doctor to refer me to the Metabolic Unit. The way we operate here, the hospital was able to call up the results of all of my BP measurements and blood tests for the period 2009 - 2011 that my doctor had arranged to monitor renal functions because of the BP medication. Similarly my doctor can see on screen everything that the hospital does - the joys of an integrated health system. Ian > > > From: ian_burdon <offwithyourspam@...> > Subject: First post > hyperaldosteronism > Date: Monday, June 11, 2012, 10:44 AM > > > > Â > > > > Hello, I've just joined and thought I'd introduce myself. I'm Ian, 52 and live in Edinburgh, Scotland. We're pretty sure that I have hyperaldosteronism - I have a saline suppression test lined up for next week as final confirmation by which time some DNA checks on my bloods will also be completed. > > I was diagnosed with High BP shortly after I ran a half marathon in 2009 and fainted a couple of hours afterwards. I had low potassium and it was assumed that I had got my nutrition wrong for the run. Last year my doctor referred me to the metabolic unit at our local Hospital and the specialist there noticed persistent low potassium and had a hunch which seems to be proved correct. > > More as we get it! >