Hello and thank you in advance, Rich from nyc and main question: do I start sulfasalizine?

My consultant thinks I’ve had PsA at a low level for about ten years! Vague aches and pains and fatigue that I put down to getting older but that my often older friends didn’t suffer from. I was just diagnosed last year after a major flare with my right hand and wrist paralysed overnight. So yes, you could have had PsA for a long time!

Curcumin/Turmeric is definitely an anti-inflammatory and can help, but not enough on its own I don’t think. A good diet that includes anti-inflammatory foods will help greatly but you still need the medication :pensive:

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Thanks Katie! Hope you’re feeling well and in a “good stretch” as people say around here. (Nice little pinching sensation on the top of my right wrist as I type this, that’s a new one)

Hi Rich

I am also new here and, Wow, your symptoms started just like mine a few months back. Some hand pain initially and then enthesitis literally exploded all over my body in a 3-4 week period. Very painful and tender spots making movement hard, especially walking.

Dr. Google brought me to a rheumatologist (that I like a lot) quickly and was diagnosed fast within a couple of weeks. I am HLB27A positive which correlates highly with this type of condition. Other than that and the pain, I have all normal bloodwork with a little toenail issue (hence the PsA). No other psoriasis at this point.

My doc suggested sulfa right away to start the process of minimizing progression, and I trusted him and his 40 yrs of experience. Been taking it for 4 weeks, 2g per day. After some minor side effects at the start (mild headache), I have no issues with this med and feel better mentally getting it started. For me, the risk of what this condition can do far outweighs the risk of the meds.

I’ve had a little relief including NSAIDS but not enough, and I’m concerned about letting this flare roll on and build. So will be talking with my doc next week about moving to a biologic.

Like I said, the risks of the disease far outweigh the meds in my mind. Like you I have young kids and I want as much quality of life with them as possible, and I’m willing to be aggressive early.

Best wishes for success.


Thanks rob. Thanks for Sharing your story

I have pretty much almost made up my mind to start the sulfa this week I’ve seen enough positives to outweigh the negatives

Thanks all

I’m a 46 year old man with 3 kids and i was diagnosed about 3 years ago now, although looking back I can see that I’d had symptoms and not felt right for several years before that (including the knee not working when trying to stand up after playing with the kids on the floor among others).

My experience is that it is a really difficult disease to accept because, other than some swollen joints, you generally look normal to other people. I also found that the rheumatologists generally just focused on swollen joints and were not really interested in the pain and fatigue i was experiencing. It was only about 6 months ago that I finally got a doctor to actually explicitly tell me this was an incurable disease and admit i would likely always feel some level of pain and fatigue.

In terms of drugs, I’ve found Etoricoxib (anti-inflammatories) work and make a noticeable difference - if i stop these for a few days then my hands quickly stiffen up in particular. The DMARD’s are more difficult as they take so long to start to work and then fully work its difficult to know what is making what difference.
I’ve tried Sulfasalazine but felt very unwell quite quickly (i’m tempted to re-try these as at the time i was very inexperienced with meds and no one really explained you can get start up side effects which do wear off).
I’ve also been on methotrexate which did reduce my symptoms, unfortunately at the higher more effective dose my liver would not tolerate it. I also found that the first two days after taking it my fatigue would get even worse (to the point i basically spent weekends in bed).
I’ve also tried Lefluonomide - i felt some improvement for the first 4/5 months but then it seemed to stop working. I also found that after 9 months it was making my fatigue much worse (to the point of feeling like i was going to collapse).

I’ve tried most diets and exercises - yoga helped. Food wise i’ve tried all sorts but the only thing i’ve really identified as making my PsA worse is steak - i’m ok with the odd burger etc but a fillet steak seems to increase the pain the next day.

If i was you, i’d tell my wife and start the sulfasalazine. This isn’t going to go away and you need people close to you to understand.

thanks for the words and the experience pilgrim

i have indeed started the sulfa as of tuesday, so this is day 3.

i have to say the unknown is really frustrating- will that not work, will it need to be upped, will it take longer than two months to find out- seems like so many stages while your body jsut gets worse and worse.

i will have a talk with my wife after the baby is born and things are settled in a bit. really dont want to stress her.

i know its only 3 days but i was actually gonna ask if the dmards/sulfa makes you MORE fatigued at some point, because i have been pretty wiped. could be from the condition or the meds and no way to know until months from now… FRUSTRATING

thanks again

Like you say could be either or both.
Sulfasalazine made me feel pretty rough within the first few weeks - light headed, exhausted, feint etc and I gave up. With the benefit of hindsight I wish I’d given it longer but no one explained to me start up side effects. I’d try and stick it out for at least 4-6 weeks if you can.
I was also slow to get help with the pain from my doctor. This condition can also affect your mental health, again I was slow to deal with that too.

now that im taking it, i will stay the 2 month course. so far no stomach issues thankfully but i realize its early.

Hi Rich,
Sorry to hear you are having such a hard time at the moment. I am 41 and have only been diagnosed for about 8 months so I get what it’s like to be at the start of the process.
Sulfasalazine, I have tried this one for 6 months. Yes it is an immune suppressor, but as we are dealing with an auto immune condition that is it’s job. In my case it made life interesting on the digestive front to begin with but settled into a manageable med. In my case I am also on prednisone and in combination I improved heaps. My Dr then tried weaning off the prednisone but once we got to a certain point I began to have bad nausea / vomiting. So we stopped the sulfasalazine and upped the prednisone again, and for now I am doing really well. We have to start somewhere with treatment to find what will help us.
It sounds like you need a Dr you can talk to about your meds, what they might do, how they help, what the plan is going forward. This helps relieve some anxiety along with talking to the people on the forum who know heaps more than us newbies.
On the baby front, congratulations. May I suggest a baby wearing sling to give you confidence that little one will be safe with you if your hands are not 100%. Just a thought. If you have confidence bub is safe and secure you can relax and enjoy getting to know them.
I hear you on not wanting others to perceive you differently. In my case I am self employed as a gardener which is great and I love it.( Exercise is very good for us, just not the kind that jars our joints. ). I was having real trouble with fatigue before I was diagnosed and very painful feet and hips, back and neck. Life without meds is no fun. I rescheduled work and managed as best I could. Once I was diagnosed and had my head around what was changing in my life I met with each client and explained the new situation. They are all fantastic people who have been so kind and supportive. They are happy to be flexible on days and hours when I need to start later if I am having a harder day.
Once you understand what the new normal is, I would say tell the friends you really are close with and family. Get your peeps on board. They need to know whats up so they can offer support and help if it’s needed. Especially your wife, you guys are now living with this as team family. It will help your daughter to understand whats going on as well with Dad. People like to know how to help, and what is next I have found.
You will get used to explaining what psa is and how it affects you.
I am not sure how work and disability rights are in your country. You need to do what is right for you and makes you feel most secure. I hear you on security for the family. You have not done anything wrong, this stuff just blindsides you I know. If work know your diagnosis they are able to help you out, it will explain the “time off”, and allow for changes you might need to make to your work station to make desk work easier.
Mental health wise, it is really important to get help from someone who knows their stuff if you feel you need support. I have done this and it makes a huge difference to your outlook and quality of life.
Our diagnosis changes some things about us, not who we are.
You are the same man you have always been. Strength is not just physical, it’s also being brave facing a different path than what you expected. Our strength gives our people confidence that we can manage the changes together. If we have our people, we have everything. Things are much less scary together.

best wishes, Melissa.


thanks Melissa
i appreciate the words and experiences.
i have to say it all really is depressing. “new normals” “different paths” “med trials/combos” “side effects” “new challenges”

i feel bad for each and everyone of you/us…

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I felt similarly frustrated with the lack of definitives in the treatment plans when it all started for me. Found it verging on inconceivable frankly. However 2 years on I’m far more relaxed about it and indeed understand it more. Because each of us acts and reacts differently, and because science hasn’t yet reached the level of DNA profiling necessary, it’s actually impossible to know which drug or which combination of drugs is right for an individual. So there’s no other way forward but to try.

Hopefully like me you’ll find taking sulfasalazine ok for you and hopefully like me you’ll find it will work too. Even if for only so long as it worked for me. As when something does work, you’ll find your head ends up in such a better place.

As I said before and many of us also did, don’t forget to look after your emotions too.

I was diagnosed 6 years ago,the first year it was called undifferentiated auto immune disease because Ihad no skin lesions. Rheumatologist was pretty sure it was Psa based on strong family history of skin psoriasis. I broke out with skin lesions 12 months later and PSA was official
I started with methotrexate then Humira was added, then changed to Enbrel. Two years after all that I started Remacaide infusion which worked fairly well for 3 years. I was even able to ride horses again and go to gym but had to retire from nursing. Too much stress on joints. Recently was switched to Symponi infusion. I’ll let you know.
I think you should take something besides the Duexis. That helps with symptoms but you need to attack the problem. And tell your wife!!! I’m a wife and she probably suspects something is wrong and you need her up to speed on info as part of your team.
I still have up and down days physically and emotionally but take it one day at a time. Pacing myself is hard. I found a free app called Lose It that has helped me lose some weight. Easy to use!! You will find ways to adapt. But this is also why your wife needs to know. She can help because you two are a unit and need to work together on this. Hang in there. Don’t be afraid to reach out here. Members are great!

thanks Bern
all these replies are so depressing… seems like all medicines stop working and things just get worse and worse and you have good days and bad days regardless. i have good days and bad days now and i know its not from the medicine yet, it just seems like that is the way it is and you wait months or years to even see if it is working and then its on to the next med and you just hope but all the while things get worse.

The medicine will keep your joints from getting deformed. I have been a nurse 45 years and took care of patients before all these new meds. They are miracles! Have you thought about the possibility you may need an antidepressant? If you are depressed it will help with mood and some also help with chronic pain. My dog groomer has PSA and finally started the right Med and is doing great! Still working. Don’t use me as a usual pt. I have some weird relationship with all meds, and a history of them not working long term. I have fibromyalgia and that complicates stuff for me. Start treatment! I have long periods of feeling good, just not right now, but better after my second dose of Symponi.

i am feeling so bizarre today.
i think its extreeme fatigue maybe?
i really cant explain it. is this from the sulfa?

i cant even think to try and make a sentence what i feel. im just shut down… sorta dizzy but not really, definitely not dizzy…

Get to your doc Rich and hope you feel better soon

You may be getting extreme fatigue from PsA. It is not ‘tiredness’ in the usual sense of the word and the ‘shut down’ feeling is something I can most definitely relate to. At worst, I have felt as if there was a veil between me and the world, a distance between me and ‘real life’ that I couldn’t breach. But for me the veil has lifted and life is real again thanks to getting the disease under control. You can very likely get PsA under control too - hang onto that thought.

Meanwhile I do agree with Jen that you need to get checked out. You may be reacting to the meds in some way or it may be depression that is affecting you. My money is on PsA but that’s just a hunch / personal experience talking. Don’t panic - these things do NOT last for many and quite possibly most of us.

hey all thanks
wow i honestly can not describe yesterday at all, i am just SO grateful i dont feel like that today. i could say 10 things that it was sort of like, but it was not like any of those things at all. i didnt have a headache but i kind of felt like i had a fever. i felt like it was warm where i was but i was not hot, at times it felt like a fever type feeling of being out of it, but it was definitely not that. the closest words i could use were dizzy and fatigued, but i had felt those two things before and that was not the case exactly. part of it felt like a hangover, but it didnt feel like a hangover at all.

i just really felt oddly detached and out of it. i couldnt really think, my actions were labored, but not really- i could do things if i thought of it, but there was such a disconnect from my mind and my body- i honestly have never felt like this before in my life, and i have had my fair share of “i just need 15 minutes of sleep right now please” feelings before. it didnt hurt to think, but it felt like it did, i just couldnt and didnt want to think. people at worked asked if i was sick. when i did wobble over to the bathroom i noticed my eyes were quite red in the mirror. i was SO out of it and felt a million miles away from my regualr self.

i was in a weird bad place. i didnt just feel like i needed that nap, although im sure that would have helped. i just didnt feel “right”

i honestly couldnt describe this to another human, definitely not yesterday as i barely tried and wrote 2 nonsense sentences here.

i dont know if its psa, or a reaction in my body from the sulfa fighting the psa? i feel like going to a dr would be pointless as i wouldnt even be able to describe my symptoms.

all i know is i wasnt “here” yesterday, and i am glad that is over, i hope i never feel like this again but im guessing i wont be so lucky.

i guess regardless i have to wait out the 2 months to see if the sulfa does work. its frustrating (theres that word again) but my main thought yesterday was “i dont know what i will do if i feel like this on the day my child is born” - if this continues and it looks like this may be playing a role, i may actually abandon the sulfa for a bit- i cant be like that on that day- i wasnt here and i wont be there again. it was pretty helpless feeling.

Hi Rich, don’t forget most docs won’t keep forcing you to continue to trial the slugs if you are getting bad side effects. If that’s what these are, you need to tell them, and then may get a chance to move on. My Rheumy works better when I tell him what I can and can’t do (ie impact), than how I feel. I’d still encourage you to make an appointment, write down the impact it is having, and read it if you have to. You can always cancel the appointment if Uts a flare and it goes away.