sulfasalazine

[Guest guest]

it is taking along time. the mtx is about out of my system and the sulfasalazine

is really slow to kick in. im only taking 2 a day but he will add to that with

my next visit im sure, what about slowing the progression of the disease? i dont

think the sulf. will do that. what can i do now? casey

Vivian Rademacher <vjrademacher@...> wrote: Casey,

Remember to get your blood work done regularly. I

still take naproxen with my sulfasalazine. Wasn't

aware I could at first because my rheumy didn't say

much to me at all. Also remember that sulfasalazine

takes a long time to start working. You'll notice

discoloration when you go to the bathroom too.

Hope this helps some...

__________________________________________________

[Guest guest]

I was also taking mtx and had to stop because of too many side effects. I

now take sulf. 4 pills per day. They are not working real well. I started

taking one pill/ per day for a week then up to 2/per day for a week etc. My

wrists and feet and fingers are really sore and swollen. I go back to the

Rheumy in a couple weeks and she will then add plaquinel to the mix and

hopefully I will get some relief. All I want is off this terrible

prednisone. I have gained 60 lbs. and am so, so bloated its terrible.

Ontario

Re: [ ] Re: Sulfasalazine

> it is taking along time. the mtx is about out of my system and the

> sulfasalazine is really slow to kick in. im only taking 2 a day but he

> will add to that with my next visit im sure, what about slowing the

> progression of the disease? i dont think the sulf. will do that. what can

> i do now? casey

>

>

[Guest guest]

i hope you get off the prednisone. there are other alternatives out there im

sure. im hurting too, mostly in my lower back right now. well, you let me know

what your rheumy says and ill tell you what mine says! at least my brain is

functioning at 100 %. its too bad you have to give up one for the other. later

casey

<fortheluvofgoldens@...> wrote: I was also taking mtx

and had to stop because of too many side effects. I

now take sulf. 4 pills per day. They are not working real well. I started

taking one pill/ per day for a week then up to 2/per day for a week etc. My

wrists and feet and fingers are really sore and swollen. I go back to the

Rheumy in a couple weeks and she will then add plaquinel to the mix and

hopefully I will get some relief. All I want is off this terrible

prednisone. I have gained 60 lbs. and am so, so bloated its terrible.

Ontario

Re: [ ] Re: Sulfasalazine

> it is taking along time. the mtx is about out of my system and the

> sulfasalazine is really slow to kick in. im only taking 2 a day but he

> will add to that with my next visit im sure, what about slowing the

> progression of the disease? i dont think the sulf. will do that. what can

> i do now? casey

>

>

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

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[Guest guest]

and Casey,

I'm on 6 Sulfasalazine per day and to be honest, I

don't know if it's doing what it's supposed to either.

It seems like I'm lucky to have 1 day a month where I

feel like my old self. My rheumy likes to give

cortisone shots, I've had one but don't want anymore

(if I don't have to). From what I've read, it seems

to rank right up there with prednisone...more reading

is needed, on my part.

Next month, I'm back to see my rheumy and will be

asking what the options are for treatment when

sulfasalazine doesn't seem to be working.

Thank you....

__________________________________________________

[Guest guest]

Joanna, I don't think the frequent labs are required with the

biologics as with the MTX. I only get labs every couple of months

since I switched to Humira.

Glad to hear the Enbrel is working for you. I understand your

concern about switching from something that is working. I stayed on

MTX as long as they would let me because I know that sometimes once

you go off something it never works as well again if you have to go

back to it. That is one important piece of empirical info I've

gleaned from this group. That is also why I don't report every

little sinus problem to my rheumy - I'm afraid she will make me stop

the Humira, which is working for me and I don't want to mess that up.

I hope you feel comfortable enough to discuss all this with your

rheumy. Don't wait for your next appointment - call the doctor and

ask to speak to his nurse. Ask her your questions and request a call

back with the answers. I think it's important to discuss these

things with the rheumy without waiting for an appointment that may be

a month or two down the road. We don't have time to waste - our

joints are at stake, not to mention our mental health and pain level.

Also, let them know you hate to mess with what's working. A good

rheumy will listen to your opinion and work with you, or give you

additional info to help you make the most informed decision. Right

now, my rheumy is working with me in allowing me to try staying on

Humira alone rather than adding MTX back at a lower dose, which she

thinks will help. I've been concerned about my liver, and she is

respectful and understanding of that conern and agreed to let me wait

and see. I think I'm about to go ahead and agree with her to see if

the combo helps me more - but I appreciate the good communication we

have between us. Establish that early by asking questions and

sharing honestly your own concerns and fears.

Let us know what happens,

sherry z

[Guest guest]

Thanks - this is good advice. The rheumy's reccomendations were based primarily

on her just learning that I have developed ulcerative colitis in addition to my

PA (she says they go together) and I did tell her I did not want to go off

Enbrel since it was working so well and would not make any changes until I

talked to my gastro. (Saw the rheumy on Friday, gastro today). Fortunately,

the gastro had his own ideas and rejected all of those from the rheumy - which

was great!!! I like her - the rheumy - but she does have a tendency to be a

bit over-bearing. Anyway, the gastro is adding to my drug regime but not the

suflsalazine - he wants me to take something " safer " but said it might also help

my PA.

I had sort of gotten the impression that once you went off a particular drug, it

was hard to go back on it successfully. I'm glad you confirmed that and I will

certainly keep it in mind - particularly since I've also learned from this group

that no matter what you're taking, there is always the possibility that - after

a time - it will not work for you. The side effects of any of the TNF blockers

still worry me a bit but I cannot believe how well Enbrel has worked for me. I

still have some osteo problems I need to deal with (from before the PA started

earlier this year) but there is no pain, stiffness, swelling, anything from the

PA that I can determine. And to think that six months ago, I was literally

crawling up the stairs at night I was so miserable.

Joanna Hoelscher

630-833-7361

[Guest guest]

Joanna - glad to hear your gastro appt. went well. What is the name

of the new drug you are adding to treat the colitis?

regards,

sherry z

>

> Thanks - this is good advice. The rheumy's reccomendations were

based primarily on her just learning that I have developed ulcerative

colitis in addition to my PA (she says they go together) and I did

tell her I did not want to go off Enbrel since it was working so well

and would not make any changes until I talked to my gastro. (Saw the

rheumy on Friday, gastro today). Fortunately, the gastro had his own

ideas and rejected all of those from the rheumy - which was

great!!! I like her - the rheumy - but she does have a tendency to

be a bit over-bearing. Anyway, the gastro is adding to my drug

regime but not the suflsalazine - he wants me to take

something " safer " but said it might also help my PA.

[Guest guest]

Azacol, which is an anti-inflammatory and he said was " safer " . It's interesting

working with these two doctors. He (the gastro) is clearly conservative and

believes you start with the lowest doses and safest meds available and work up

if you need to. She (the rheumy) doesn't mess around: starts immediately with

the " big gun " meds. If it ever comes to the point where they have to consult, I

can't wait to watch!!!!!

Joanna Hoelscher

630-833-7361

[ ] Re: Sulfasalazine

Joanna - glad to hear your gastro appt. went well. What is the name

of the new drug you are adding to treat the colitis?

regards,

sherry z

[Guest guest]

Walston wrote:

> Has anyone taken sulfasalazine for their PA?

I take sulfasalazine and have for close to 20 years now. It worked really

well for a lot of years but lately it has not been very effective for me.

Gareeth

[Guest guest]

I took it for years and now I am on Enbrel and Methotrexate only.

The Sulfasalazine does make you sun sensitive and I bruised easily on

it.

dez

[Guest guest]

Walston wrote:

> Has anyone taken sulfasalazine for their PA?

I have been on it for about 6 months and it works pretty well. I take NSAIDs

too.

mrtom <mrtom303@...>

[Guest guest]

What NSAIDs do you take with Sulfasalazine? I'm in the middle of a

flare. I have been taking Sulfasalazine and Hydroxyclorquine for

about 6 months.

Rhonda

[Guest guest]

I tore a tendon running a few years ago and had to do quite a bit to get it

working correctly again. During that time I tried lots of the NSAIDs. Mobic,

Vioxx, etc etc. It turned out the only one that worked for me was Naproxen

(Aleve) in prescription strength 500 mg twice a day, with a Prilosec equivalent

for the stomach. When the PA took hold I went back to naproxen for a while,

but it no longer did the trick. Now I take nabumetone with the Prilosec and

sulfazine etc.

cheers

T

[Guest guest]

Hi, I take sulfasalazine and i get bad headaches from it, I take it along with

MTX. The tramadol is the only thing for pain that works, which I am thankful

for. My blood tests for inflammation keep going up and I feel crappy on both of

the pills. but that is me, hopefully you will have better results, just remember

the sulfasalazine is hard on the stomach so take with a lot of food is what my

pharmacist told me.

" skaykam48 " <skaykam48@...>

[Guest guest]

I take these two, they work for me I'm never totally pain free but it's a

definite improvement from when I took Plaquenil. The only problem I have is

mine upped my dose of sulfasalazine and I can't take a larger dose because it

gives me horrendous gas. I tried it for 2 weeks to see if it would settle down

but it didn't. I may try again in a month or so to see if I can take a bigger

dose.

It doesn't work right away it took about 2 weeks before I noticed any

difference.

Celeste

[Guest guest]

Regarding sulfasalazine, it never helped me.  I had to go to Enbrel.

Ciao!  Kelley

[Guest guest]

My rheumy told me that sulfasalazine doesn't work for PsA in the back. I'd love

to know if you or anyone else has had luck with it there.

Joanna Hoelscher

[Guest guest]

Bit surprising they would say that. I am on sulfasalazine and my back was my

first area of involvement. I do find it helps.

Gareeth

Joanna Hoelscher wrote:

<<My rheumy told me that sulfasalazine doesn't work for PsA in the back. I'd

love to know if you or anyone else has had luck with it

there.>>

[Guest guest]

It's made a difference for me. I still have to take ultram & darvocet but I

don't take anywhere near what I was taking now that I'm on the sulfasalazine.

Celeste

----- Original Message ----- From: Joanna Hoelscher

<<My rheumy told me that sulfasalazine doesn't work for PsA in the back. I'd

love to know if you or anyone else has had luck with it there.>>