Re: Help

[Guest guest]

I agree that the 80 mg is enough to make me crazy ... I have gained alot

of weight and never really eat . And the acne is killing me. I have to be

careful what drugs I try because for some reason my body does not like anything.

My Doctor wants me to go on the MTX as a temporary fix until I can handle

other medications. But, The last time I was on MTX , I developed open sores in

my mouth,throat and on my chest. I guess I am afraid of this happening again.

I have to ask her what long term treatment we are going to try but I am

allergic to sulfa and was told that that limits my choices. Thanks for the

advise

... I am just recently diagnosed and got set back with learning that I have

cysts now. I was also told that it could cause me more problems to have them

dealt with right now with me having so much inflammation in the joints right

now. I will have to see. Thanks again for the advise..

[Guest guest]

80 mg of prednisone a day is enough to make anyone psychotic! Cysts can have

many reasons. Many people develop cysts randomly, and they can usually be

removed fairly easily. Some can just be drained with a needle. It makes some

sense that inflammation over a period of time could cause a cyst. It's a pocket

full of fluid.

Giving the MTX a try might not hurt, but it might hurt, . I know that I

respond very differently to the MTX now than I did 7 years ago when I was

diagnosed. I also respond differently to different kinds of antibiotics and over

the counter medications now as well.

I've been on 40 mg or more of the prednisone since about the end of March, and

I've gained 20 lbs and a face and body full of pimples, among other problems. Is

there no discussion of something more long term, like Remicade or Enbrel or

anything? Or do you have an adverse reaction to those as well?

Blondedolphin172@... wrote:

Hello everyone,

I went to my Doctor today. I had a number of tests and MRI's done last

week. Well, Today I found out that in my right wrist and hip that have been

very painful and swollen, Have cysts in the joint. Does anyone know why ??? My

Doctor says that they can be caused by inflammation over a period of time.

Has anyone else ever have these ??? And what can they do for them??? Right now

the Doctor wants to keep me on 80mg of prednisone and plaquenil at 600 mg a

day. They also want to start me back on MTX but in the past I had very bad

reactions to it in the past. I am really confused about what to do but with my

adverse reations to medications I am limited. Any advise ????

Thanks for listening,

Danni

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

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[Guest guest]

Mouth sores are a pretty good indicator that MTX isn't a good solution for you.

It's the first thing my rheumy told me to tell him about after i started back on

it. I managed to stop my weight gain at about 200 lbs, but don't ask me how I

did it, because I haven't changed much of anything. MTX isn't really that

temporary, since it takes 9-12 weeks before you start getting any relief from

it, and you'll get mouth sores much faster. I'm not really sure how you could

have more complications from the cyst removal, but I suppose that depends on how

they decide to remove them. You're taking immuno-suppresant drugs, so that's a

concern with any kind of cut you open surgery, but if they're simply going to

drain them with a needle, it could provide you with quick relief at minimum

cost.

Unfortunately, I'm not sure what to tell you about the sulfa. I'm allergic to

penicillin, so sulfa is my friend. Did they have you take folic acid along with

your MTX?

Blondedolphin172@... wrote:

I agree that the 80 mg is enough to make me crazy ... I have gained alot

of weight and never really eat . And the acne is killing me. I have to be

careful what drugs I try because for some reason my body does not like anything.

My Doctor wants me to go on the MTX as a temporary fix until I can handle

other medications. But, The last time I was on MTX , I developed open sores in

my mouth,throat and on my chest. I guess I am afraid of this happening again.

I have to ask her what long term treatment we are going to try but I am

allergic to sulfa and was told that that limits my choices. Thanks for the

advise

... I am just recently diagnosed and got set back with learning that I have

cysts now. I was also told that it could cause me more problems to have them

dealt with right now with me having so much inflammation in the joints right

now. I will have to see. Thanks again for the advise..

[Guest guest]

Danni,

I also have a lot of med reactions and am very limited. I tolerate MTX but

only the injections, the pills make me sick. I had horrible reactions to

planquenil and now have that on my medic alert as an allergy. Just about

all the nsaids make me sick to my stomach and do nothing for pain. I can't

takepenicillin(rash) vancomycin(red man's syndrome) I get horrible headaches

or bad reactions to every med they use for ADD so have decided not to treat

that. If anyone thinks I talk too much that is why, I am hyper mentally and

verbally from ADD. Percocet is one of the few narcotics that does not make

me puke. I have a 6 page list of drugs that I have tried and could not

tolerate. It really sucks and I wish I could offer you some hope.

The best thing I can tell you is that when I was reacting to the planquenil

my dermatologist had me switch all my products to hypo allergenic or

sensitive skin formulas to rule out a topical reaction. I continue to use

those so when I have skin reactions we don't have to go thru the 2 week wait

and rule out topicals. I just dove sensitive skin soap, all free and clear

for my laundry and downy free for laundry. Abundant earth online has some

good free shampoo and conditioner that I want to order, as free and clear

shampoos are hard to find. I have a friend with chemical sensitivity that

recomends that and it works well. I also use only lotions that are for free

and clear etc. At least if you do that they can definitely rule out

topicals and you will know sooner if it is a drug you are using.

Hope that helps some

Lynn

-- Help

Hello everyone,

I went to my Doctor today. I had a number of tests and MRI's done last

week. Well, Today I found out that in my right wrist and hip that have been

very painful and swollen, Have cysts in the joint. Does anyone know why ???

My

Doctor says that they can be caused by inflammation over a period of time.

Has anyone else ever have these ??? And what can they do for them??? Right

now

the Doctor wants to keep me on 80mg of prednisone and plaquenil at 600 mg a

day. They also want to start me back on MTX but in the past I had very bad

reactions to it in the past. I am really confused about what to do but with

my

adverse reations to medications I am limited. Any advise ????

Thanks for listening,

Danni

[Guest guest]

Thanks Lynn,

It is so hard when these reactions occur . I try to let the doctor try

things but then I am scared to death of the reactions. I get such a sick

feeling when I am about to try something new. I know that the doctor feels that

she can control the side effects of the MTX this time around and she says that

the injections are the safest way. Please continue giving me advise it helps

so much and makes me feel for the first time with having the group that I

have a lifeline.

Thanks to all of you for all your help... Danni

[Guest guest]

I have very little problem with the injections, and they are so easy to do.

I really struggled with the pills. Also, they can increase your folic acid.

I take 2 mg daily of that and 30Mg or 1.2 ml of MTX a week, which is a

pretty high dose, occasionally I have slight nausea the next day, and I

always get sleepy the day after but that is it!!

Lynn

ion by any person following the information offered or provided within this

support form.

[Guest guest]

Hi Beth, have you tried calling Menninger to see if they can recommend anyone?

Also, do a search of past posts for Houston, see what you turn up. I know Texas

has come up before with people looking for help, might be some names in old

messages. Sorry you're all having such a rough time now!

>

> Is there anyone out there in the community that has a psychologist and or

> psychiatrist in the Houston, TX area that they like. We are really needing

> some help.

>

>

>

> Beth

>

>

>

>

[Guest guest]

We are new to this journey and have just begun looking for help for our son who

is 10.  We live in Katy just west of Houston.  Just about everyone we have

called is either not taking any new patients or haven't called us back --I

assume because they are overbooked. Have you experienced this as well?  Maybe

we could share info. as we get it.  --Cheryl

Subject: Re: help

To:

Date: Wednesday, February 17, 2010, 5:25 PM

 

Hi Beth, have you tried calling Menninger to see if they can recommend

anyone? Also, do a search of past posts for Houston, see what you turn up. I

know Texas has come up before with people looking for help, might be some names

in old messages. Sorry you're all having such a rough time now!

>

> Is there anyone out there in the community that has a psychologist and or

> psychiatrist in the Houston, TX area that they like. We are really needing

> some help.

>

>

>

> Beth

>

>

>

>

[Guest guest]

Welcome, Cheryl.

It can be difficult to find a therapist who uses CBT/ERP, who truly understands

OCD, and also will treat children.

Have you tried the ocfoundation.org website? They have therapists listed there

per state. You will have to call to make sure they use CBT/ERP (cognitive

behavioral therapy and exposure and response prevention) because even though

they are listed there it doesn't mean they truly understand OCD and how to treat

it, but it's a good place to start because some listed there do.

Another good place to look is Anxiety clinics. Because OCD is an anxiety

disorder, I found while looking for a therapist that they generally understood

OCD and how to treat it correctly too.

And third. . If you have any OCD groups in your area, call them and ask for any

recommendations.

Hopefully there will also be someone in here who lives in your area, who can

recommend someone personally.

Have you had a chance to do much reading on OCD? That helped us tremendously to

understand what our son was dealing with. If you'd like some recommendations,

let me know.

Okay, just some quick thoughts (late at night here, but didn't want to go to bed

without responding).

So glad you found us. Jump right in if you have any questions.

BJ

>

> >

>

> > Is there anyone out there in the community that has a psychologist and or

>

> > psychiatrist in the Houston, TX area that they like. We are really needing

>

> > some help.

>

> >

>

> >

>

> >

>

> > Beth

>

> >

>

> >

>

> >

>

> >

[Guest guest]

If you cant find anyone local, you could also try Dr Storch's scype therapy

study out of USF. The link is on the OCF website under the research button. We

did it and it was GREAT. 14 weeks of therapy done by experts in the field FREE

without leaving the comfort of your home, teaching you all about how to do the

therapy etc, all for the price of one overnight trip to St Pete Florida- and no

waiting (there is actually one group that waits for several weeks and one group

that starts immediately.

[Guest guest]

Dear Cheryl-

 

We are on therapist number 4, but we experienced similar problems when living in

central connecticut right near UCONN Medical Center - so we moved back to

southern NY.  I hate the change but now that my daughter is older (16) I don't

feel bad about getting her to realize that some of her problems come from

behaviors she does, not because of someone elses shortcomings (like the

therapist is no godd- a common criticism I've heard from her).  But we had one

therapist who told me to get someone else because my child needed at least a

weekly appt and she hadn't the time!  At least she was honest.  OC Foundation

website has lists of people, I would call them all (in your area) and see if any

can wait list you - also sometimes your health insurance carrier can help you

find someone - although that's abit dodgier esp if you are not in a group but

have an individual policy (IF of course, you have health insurance).

 

Hang in there, wish I had a name for you.

M

From: <@ hotmail.com>

Subject: Re: help

To: @ yahoogroups. com

Date: Wednesday, February 17, 2010, 5:25 PM

 

Hi Beth, have you tried calling Menninger to see if they can recommend anyone?

Also, do a search of past posts for Houston, see what you turn up. I know Texas

has come up before with people looking for help, might be some names in old

messages. Sorry you're all having such a rough time now!

>

> Is there anyone out there in the community that has a psychologist and or

> psychiatrist in the Houston, TX area that they like. We are really needing

> some help.

>

>

>

> Beth

>

>

>

>

[Guest guest]

Hi - Do you have more info about the skype thing?  The only CBT therapist

in my county is not taking new patients so we schlepp into NYC - 125 miles round

trip - each week.  I just lost my job and that's going to go on hold because I

have to pay the mortgage.

Thanks

Subject: Re: help

To: " " < >

Date: Sunday, February 21, 2010, 7:28 AM

 

If you cant find anyone local, you could also try Dr Storch's scype therapy

study out of USF. The link is on the OCF website under the research button. We

did it and it was GREAT. 14 weeks of therapy done by experts in the field FREE

without leaving the comfort of your home, teaching you all about how to do the

therapy etc, all for the price of one overnight trip to St Pete Florida- and no

waiting (there is actually one group that waits for several weeks and one group

that starts immediately.

__________________________________________________

[Guest guest]

Our 12-year old daughter is a participant in the USF study. If you'd like to

email me offline, I'd be happy to share information about it. We are on therapy

session 12 of 14.

>

>

>

> Subject: Re: help

> To: " " < >

> Date: Sunday, February 21, 2010, 7:28 AM

>

>

>  

>

>

>

> If you cant find anyone local, you could also try Dr Storch's scype therapy

study out of USF. The link is on the OCF website under the research button. We

did it and it was GREAT. 14 weeks of therapy done by experts in the field FREE

without leaving the comfort of your home, teaching you all about how to do the

therapy etc, all for the price of one overnight trip to St Pete Florida- and no

waiting (there is actually one group that waits for several weeks and one group

that starts immediately.

>

>

>

>

>

>

>

> __________________________________________________

>