Re: Sulfasalazine and the sun

[Guest guest]

This medicine may make your skin more sensitive to the sun and may cause you

to sunburn more easily. While you are taking this medicine try to avoid long

exposure to the sun. Even though you used sunscreen, 7 hours is a long

time to be exposed when you¹re sun sensitive. Sometimes it¹s unavoidable,

but if you wear protective clothing, it will help. I¹m not on

sulfasalazine, but I take another sun sensitive causing medication, mtx. I

do most of my swimming in the morning or late afternoon when the sun is not

as strong. You can still be outside, but you may have to use umbrellas, and

extra protective gear. Hope your face feels better. If it¹s really bad

you may want to call your doctor.

a

On 6/10/02 8:43 AM, " charlin1958 " <stratton_c@...> wrote:

> Good Morning,

>

> I'm taking 2000 mg of sulfasalizine daily plus plaquinel for RA.

>

> I read the warnings regarding sulfasalazine and the sun, but

> assumed that covering up with tons of sunscreen and wearing a

> hat was sufficient. I spent about 7 hours outside on Saturday, in

> and out of the sun, and suffered horrible headaches and

> stomach upset all that evening and all day yesterday. Also, my

> face is swollen --- it happened before and I thought it was

> prednisone, but I'm off that now.

>

> What is your experience with sulfasalizine and sun exposure?

>

> I feel pretty stupid, but was so disappointed. I was feeling nearly

> normal and was really enjoying being active and outside.

>

> best to all.

>

>

>

>

[Guest guest]

Thank you a for the information. I did call my rheumatologist

this morning who told me to stop the sulfasalizine and to come

in sooner than my next appointment. He'd prescribed

sulfasalazine becuase the plaquinil wasn't working after 6

weeks or so. I am still taking the plaquinil though. Wonder what

medication will be next? Should I just accept these prescriptions

and keep hoping that something will work? From all I've read, it

seems like my doc is following pretty standard protocol for

someone newly diagnosed but the idea of jumping from

medication to medication for the forseable future is scaring me.

I've read a lot about methotrexate. Is it as nasty as it sounds? I

know wise people say to be scared of the disease, not the

treatment, but it's hard.

Thanks

>

> > Good Morning,

> >

> > I'm taking 2000 mg of sulfasalizine daily plus plaquinel for

RA.

> >

> > I read the warnings regarding sulfasalazine and the sun, but

> > assumed that covering up with tons of sunscreen and

wearing a

> > hat was sufficient. I spent about 7 hours outside on Saturday,

in

> > and out of the sun, and suffered horrible headaches and

> > stomach upset all that evening and all day yesterday. Also,

my

> > face is swollen --- it happened before and I thought it was

> > prednisone, but I'm off that now.

> >

> > What is your experience with sulfasalizine and sun

exposure?

> >

> > I feel pretty stupid, but was so disappointed. I was feeling

nearly

> > normal and was really enjoying being active and outside.

> >

> > best to all.

> >

> >

> >

> >

[Guest guest]

hang in there. i have been passing info to my family and i too thought they

were thinking i was over-reacting. but now they are behind me and tell me

they can't believe how strong i am enough to try and get the info and try the

drugs. sometimes you just have to pound it in their head. sometimes if they

go with to an appt. they understand more of what we are going through or can

ask ? of their own. of coarse i remember one of my dr's telling my mom i was

a brittle diabetic. within a month they determined i wasn't diabetic.

(thanks, but make up your mind!!) these are life altering diseases and

sometimes i feel like the little girl who cried wolf!!! then after a visit to

my rheumi who tells me it is not in my head, but in my blood. makes me feel

less crazy. my grandfather had ankylosing spondylitis. but they'd always say,

well he was an alcoholic. i have finally made them see that it was probably

the constant pain that drove him to drink. good luck and remember you need

to care for you!!! kathy in il

[Guest guest]

Did he say why you should stop the sulfasalazine? You haven¹t been on it

long enough to give it a chance to work. It takes 4-12 weeks to see a

response. Limiting your time in the sun until you see if it helps is what

I would think the doctor would say.

It takes 8-12 weeks for plaquenil to work. You can to to

http://www.rxlist.com/ and look up medications and it tells you how long

these meds take to work.

I too am very afraid of MTX, but I¹m more afraid of RA. I¹ve already had

both knees replaced and will be getting more joints replaced if the damage

isn¹t stopped. MTX is one of the longest med used to treat RA and has a

very good effectiveness rate. You should read all that you can before

making any decisions.

a

On 6/10/02 1:22 PM, " charlin1958 " <stratton_c@...> wrote:

> Thank you a for the information. I did call my rheumatologist

> this morning who told me to stop the sulfasalizine and to come

> in sooner than my next appointment. He'd prescribed

> sulfasalazine becuase the plaquinil wasn't working after 6

> weeks or so. I am still taking the plaquinil though. Wonder what

> medication will be next? Should I just accept these prescriptions

> and keep hoping that something will work? From all I've read, it

> seems like my doc is following pretty standard protocol for

> someone newly diagnosed but the idea of jumping from

> medication to medication for the forseable future is scaring me.

> I've read a lot about methotrexate. Is it as nasty as it sounds? I

> know wise people say to be scared of the disease, not the

> treatment, but it's hard.

>

> Thanks

>

>

>

>

>> >

>>> > > Good Morning,

>>> > >

>>> > > I'm taking 2000 mg of sulfasalizine daily plus plaquinel for

> RA.

>>> > >

>>> > > I read the warnings regarding sulfasalazine and the sun, but

>>> > > assumed that covering up with tons of sunscreen and

> wearing a

>>> > > hat was sufficient. I spent about 7 hours outside on Saturday,

> in

>>> > > and out of the sun, and suffered horrible headaches and

>>> > > stomach upset all that evening and all day yesterday. Also,

> my

>>> > > face is swollen --- it happened before and I thought it was

>>> > > prednisone, but I'm off that now.

>>> > >

>>> > > What is your experience with sulfasalizine and sun

> exposure?

>>> > >

>>> > > I feel pretty stupid, but was so disappointed. I was feeling

> nearly

>>> > > normal and was really enjoying being active and outside.

>>> > >

>>> > > best to all.

>>> > >

>>> > >

>>> > >

>>> > >

[Guest guest]

In a message dated 6/10/02 4:34:01 PM Central Daylight Time,

kringlemom@... writes:

> hang in there. i have been passing info to my family and i too thought they

>

> were thinking i was over-reacting. but now they are behind me and tell me

> they can't believe how strong i am enough to try and get the info and try

> the

> drugs. sometimes you just have to pound it in their head. sometimes if they

>

> go with to an appt. they understand more of what we are going through or

> can

> ask ? of their own. of coarse i remember one of my dr's telling my mom i

> was

> a brittle diabetic. within a month they determined i wasn't diabetic.

> (thanks, but make up your mind!!) these are life altering diseases and

> sometimes i feel like the little girl who cried wolf!!! then after a visit

> to

> my rheumi who tells me it is not in my head, but in my blood. makes me feel

>

> less crazy. my grandfather had ankylosing spondylitis. but they'd always

> say,

> well he was an alcoholic. i have finally made them see that it was probably

>

> the constant pain that drove him to drink. good luck and remember you need

>

> to care for you!!! kathy in il

>

Kathy, The day my doc (not a rhuemy, just a regular doctor) told me that it

was not " all in my head " , that it was more than likely systemic lupus, I

nearly kissed the man. I was not happy to hear the diagnosis, but thrilled

to have someone believe me. I had been told for about 10 to 15 years that it

was the flu, it was all in my head, I was too young to be so " sick " (take that

how you will), etc.... The doc I have now ran all the tests, took all the

history, LISTENED to me, listened to my husband. My mother was more

devastated than I was to hear that it was Lupus. For about two years (I was

diagnosed in Feb.1999), she refused to acknowledge what I was telling her.

If I brought up the subject, she changed it or tried to " reinvent " my

symptoms into something else, maybe I was anemic, maybe my gall bladder,

etc... She even tried to find other jobs I could do, since I wasn't working

anymore. I was a mental health caseworker for about 20 years and she assumed

I could do something else. She finally understood that I could not go back

to work when my husband told her that there were days that I couldn't walk up

to the mailbox without being exhausted.

By the way, I am only 42, so my husband has had to readjust his thinking

also. Y'all just hang in there and do the best you can do, if that's not

good enough for anyone else, it's their problem. All of us on this list

understand and that's what counts.

Alice in Texas

[Guest guest]

Thanks a. My docs assistant called and told me he said to

stop the sulfasalazine. ly I'm relieved. I'd rather see if the

plaquinel kicks in anyway... I've been on that since April 24.

He added the sulfasalizine on May 24 and it made me so damn

queasy, and now with this sun poisoning (no burns thanks to 40

spf...., just piercing headache, nausea, blurred vision and a

swollen face) I'm grateful to slow down on these medications

and give them each adequate time to work before adding or

switching to another.

My family aserts that maybe the doc is overprescribing cause I

am over-complaining. ly that really pisses me off. This RA

hit me fast and hard and I can't help it if I'm in more pain than I've

ever been in all my life .... I'm sure anyone in this position would

be a little stunned and a little scared.

Thanks for the chance to vent.....

> >> >

> >> > This medicine may make your skin more sensitive to the

sun

> > and may cause you

> >> > to sunburn more easily. While you are taking this

medicine try

> > to avoid long

> >> > exposure to the sun. Even though you used sunscreen, 7

> > hours is a long

> >> > time to be exposed when you1re sun sensitive.

Sometimes

> > it1s unavoidable,

> >> > but if you wear protective clothing, it will help. I1m not on

> >> > sulfasalazine, but I take another sun sensitive causing

> > medication, mtx. I

> >> > do most of my swimming in the morning or late afternoon

> > when the sun is not

> >> > as strong. You can still be outside, but you may have to

use

> > umbrellas, and

> >> > extra protective gear. Hope your face feels better. If it1s

> > really

> > bad

> >> > you may want to call your doctor.

> >> > a

> >> >

> >> >

> >> >

> >> > On 6/10/02 8:43 AM, " charlin1958 " <stratton_c@m...>

wrote:

> >> >

> >>> > > Good Morning,

> >>> > >

> >>> > > I'm taking 2000 mg of sulfasalizine daily plus plaquinel

for

> > RA.

> >>> > >

> >>> > > I read the warnings regarding sulfasalazine and the

sun, but

> >>> > > assumed that covering up with tons of sunscreen and

> > wearing a

> >>> > > hat was sufficient. I spent about 7 hours outside on

Saturday,

> > in

> >>> > > and out of the sun, and suffered horrible headaches

and

> >>> > > stomach upset all that evening and all day yesterday.

Also,

> > my

> >>> > > face is swollen --- it happened before and I thought it

was

> >>> > > prednisone, but I'm off that now.

> >>> > >

> >>> > > What is your experience with sulfasalizine and sun

> > exposure?

> >>> > >

> >>> > > I feel pretty stupid, but was so disappointed. I was

feeling

> > nearly

> >>> > > normal and was really enjoying being active and

outside.

> >>> > >

> >>> > > best to all.

> >>> > >

> >>> > >

> >>> > >

> >>> > >

[Guest guest]

The current trends in treatment is combining different drugs. Some work

better than others. Plaquenil has a good track record and I'm glad you're

giving it the chance to work. Sulfasalazine has many GI side effects and

there are plenty of other choices that your doctor may want you to try that

aren't so hard on the GI system.

Your family doesn't understand and that is quite normal. Many of us here

have family members that just don't get it. I hope you have something for

pain. Untreated pain has it's own set of problems. Be patient with your

doctor, as hard as it is. It may take time to find the right cocktail of

meds to bring you relief.

Research has also shown that hitting this disease hard in the early stages

is the most successful treatment. Printing out some of the information and

letting your family read it may help them understand this disease. Many

people compare it to the aches and pains that come with aging. They don¹t

understand widespread systemic problems it causes. Fatigue is my worse

problem. So I¹ve learned to pace myself and go in spurts with plenty of

rest in between.

Hang in there. I hope you get relief soon.

a

BTW what can I call you? Nicknames are fine.

On 6/10/02 3:44 PM, " charlin1958 " <stratton_c@...> wrote:

> Thanks a. My docs assistant called and told me he said to

> stop the sulfasalazine. ly I'm relieved. I'd rather see if the

> plaquinel kicks in anyway... I've been on that since April 24.

>

> He added the sulfasalizine on May 24 and it made me so damn

> queasy, and now with this sun poisoning (no burns thanks to 40

> spf...., just piercing headache, nausea, blurred vision and a

> swollen face) I'm grateful to slow down on these medications

> and give them each adequate time to work before adding or

> switching to another.

>

> My family aserts that maybe the doc is overprescribing cause I

> am over-complaining. ly that really pisses me off. This RA

> hit me fast and hard and I can't help it if I'm in more pain than I've

> ever been in all my life .... I'm sure anyone in this position would

> be a little stunned and a little scared.

>

> Thanks for the chance to vent.....

[Guest guest]

Hi..

When you say plaquenil has a good track record…mind if I ask where this

track record exists….??

Thanks

Sam

Re: [ ] Re: Sulfasalazine and the sun

The current trends in treatment is combining different drugs. Some work

better than others. Plaquenil has a good track record and I'm glad

you're

giving it the chance to work. Sulfasalazine has many GI side effects

and

there are plenty of other choices that your doctor may want you to try

that

aren't so hard on the GI system.

Your family doesn't understand and that is quite normal. Many of us here

have family members that just don't get it. I hope you have something

for

pain. Untreated pain has it's own set of problems. Be patient with

your

doctor, as hard as it is. It may take time to find the right cocktail

of

meds to bring you relief.

Research has also shown that hitting this disease hard in the early

stages

is the most successful treatment. Printing out some of the information

and

letting your family read it may help them understand this disease. Many

people compare it to the aches and pains that come with aging. They

don¹t

understand widespread systemic problems it causes. Fatigue is my worse

problem. So I¹ve learned to pace myself and go in spurts with plenty of

rest in between.

Hang in there. I hope you get relief soon.

a

BTW what can I call you? Nicknames are fine.

On 6/10/02 3:44 PM, " charlin1958 " <stratton_c@...> wrote:

> Thanks a. My docs assistant called and told me he said to

> stop the sulfasalazine. ly I'm relieved. I'd rather see if the

> plaquinel kicks in anyway... I've been on that since April 24.

>

> He added the sulfasalizine on May 24 and it made me so damn

> queasy, and now with this sun poisoning (no burns thanks to 40

> spf...., just piercing headache, nausea, blurred vision and a

> swollen face) I'm grateful to slow down on these medications

> and give them each adequate time to work before adding or

> switching to another.

>

> My family aserts that maybe the doc is overprescribing cause I

> am over-complaining. ly that really pisses me off. This RA

> hit me fast and hard and I can't help it if I'm in more pain than I've

> ever been in all my life .... I'm sure anyone in this position would

> be a little stunned and a little scared.

>

> Thanks for the chance to vent.....

[Guest guest]

By good track record I mean it is usually well tolerated, low toxicity and

the first line of medication prescribed by rheumatologists.

Most rheumatologists consider Plaquenil to be one of the safer but ³weaker²

second line drugs. 

http://www.midwestarthritis.com/html/plaquenil.htm

Hydroxychloroquine or sulfasalazine have the advantage of low toxicity and

therefore are generally the first DMARD agents used, particularly in

patients with mild disease who are rheumatoid factor negative. Although

these agents are well tolerated, most patients will have a modest beneficial

response with very few patients having a complete remission. Either drug is

often used in combination with an NSAID, corticosteroids or other DMARD.

http://hopkins-arthritis.org/rheumatoid/rheum_treat.html

a

On 6/10/02 5:04 PM, " dot.com " <dot.communicator@...> wrote:

> Hi..

>

> When you say plaquenil has a good track record…mind if I ask where this

> track record exists….??

> Thanks

> Sam

[Guest guest]

Kathy,

I believe a good number of alcoholics are self treating pain. I¹m glad you

were able to make them see that your Grandfather was probably doing just

that. Bless your family for caring enough to learn and understand what is

going on with you.

a

On 6/10/02 5:32 PM, " kringlemom@... " <kringlemom@...> wrote:

> hang in there. i have been passing info to my family and i too thought they

> were thinking i was over-reacting. but now they are behind me and tell me

> they can't believe how strong i am enough to try and get the info and try the

> drugs. sometimes you just have to pound it in their head. sometimes if they

> go with to an appt. they understand more of what we are going through or can

> ask ? of their own. of coarse i remember one of my dr's telling my mom i was

> a brittle diabetic. within a month they determined i wasn't diabetic.

> (thanks, but make up your mind!!) these are life altering diseases and

> sometimes i feel like the little girl who cried wolf!!! then after a visit to

> my rheumi who tells me it is not in my head, but in my blood. makes me feel

> less crazy. my grandfather had ankylosing spondylitis. but they'd always say,

> well he was an alcoholic. i have finally made them see that it was probably

> the constant pain that drove him to drink. good luck and remember you need

> to care for you!!! kathy in il

>

>

[Guest guest]

thanks alice. it does give you piece of mind. knowing you are not just

crazy!! kathy in il

[Guest guest]

we've had our rough spots, but i think i am on the right track with them.

kathy in il

[Guest guest]

Thank you a and others for your replies.

One day off the sulfasalazine and I feel so much better. I'm

definitely going to try to give the Plaquenil enough time to work

before agreeing w/ the doc to add anything else. As far as pain,

my doc offered Ultracet (?) but I'm sticking to over the counter

NSAIDs and rest.

I can't force information about RA on my family and it's not really

my complaint of pain that I think they're tiring of, it's my fatigue

and lack of energy. I've shared lots of info w. them and am sure

they'll begin to understand better in time, as I will.

Does anyone get acupuncture or other non-traditional treatment

along with their regular treatment. I told my doc that I was having

acupuncture for symptom relief and he said that was fine, but

that the downside was that once you stopped treatment, the pain

returns. I wish I'd thought to remark that once we stop any

treatment, traditional or non-traditional, for any disease,

discomfort usually does return.

Charlotte

>

> > Thanks a. My docs assistant called and told me he said

to

> > stop the sulfasalazine. ly I'm relieved. I'd rather see if

the

> > plaquinel kicks in anyway... I've been on that since April 24.

> >

> > He added the sulfasalizine on May 24 and it made me so

damn

> > queasy, and now with this sun poisoning (no burns thanks to

40

> > spf...., just piercing headache, nausea, blurred vision and a

> > swollen face) I'm grateful to slow down on these medications

> > and give them each adequate time to work before adding or

> > switching to another.

> >

> > My family aserts that maybe the doc is overprescribing cause

I

> > am over-complaining. ly that really pisses me off. This

RA

> > hit me fast and hard and I can't help it if I'm in more pain than

I've

> > ever been in all my life .... I'm sure anyone in this position

would

> > be a little stunned and a little scared.

> >

> > Thanks for the chance to vent.....

>

>

>

>

[Guest guest]

You¹re welcome Charlotte. I¹m glad you¹re feeling better and found out it

was the sulfasalazine that was causing you to feel so bad.

I hope in time your family accepts that you have a disease that you have no

control over. Fatigue is hard to deal with. I tried acupuncture but it

didn¹t help. My mom had tendonitis that wouldn¹t go away with traditional

treatment, but after 2 visits to the acupuncturist, it went away. Let us

know how it goes if you decide to try it.

a

On 6/11/02 9:20 AM, " charlin1958 " <stratton_c@...> wrote:

> Thank you a and others for your replies.

> One day off the sulfasalazine and I feel so much better. I'm

> definitely going to try to give the Plaquenil enough time to work

> before agreeing w/ the doc to add anything else. As far as pain,

> my doc offered Ultracet (?) but I'm sticking to over the counter

> NSAIDs and rest.

> I can't force information about RA on my family and it's not really

> my complaint of pain that I think they're tiring of, it's my fatigue

> and lack of energy. I've shared lots of info w. them and am sure

> they'll begin to understand better in time, as I will.

> Does anyone get acupuncture or other non-traditional treatment

> along with their regular treatment. I told my doc that I was having

> acupuncture for symptom relief and he said that was fine, but

> that the downside was that once you stopped treatment, the pain

> returns. I wish I'd thought to remark that once we stop any

> treatment, traditional or non-traditional, for any disease,

> discomfort usually does return.

>

> Charlotte

>

>

>

>> >

>>> > > Thanks a. My docs assistant called and told me he said

> to

>>> > > stop the sulfasalazine. ly I'm relieved. I'd rather see if

> the

>>> > > plaquinel kicks in anyway... I've been on that since April 24.

>>> > >

>>> > > He added the sulfasalizine on May 24 and it made me so

> damn

>>> > > queasy, and now with this sun poisoning (no burns thanks to

> 40

>>> > > spf...., just piercing headache, nausea, blurred vision and a

>>> > > swollen face) I'm grateful to slow down on these medications

>>> > > and give them each adequate time to work before adding or

>>> > > switching to another.

>>> > >

>>> > > My family aserts that maybe the doc is overprescribing cause

> I

>>> > > am over-complaining. ly that really pisses me off. This

> RA

>>> > > hit me fast and hard and I can't help it if I'm in more pain than

> I've

>>> > > ever been in all my life .... I'm sure anyone in this position

> would

>>> > > be a little stunned and a little scared.

>>> > >

>>> > > Thanks for the chance to vent.....

>> >

>> >

>> >

>> >