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

Welcome Greetings and Introductions
1

Hello, I feel fortunate to have found you all and this is my story. I have read through here and realize we are all different. Being new I am unsure where I stand compared with others. My pain both physically and mentally is real but no doubt many have it worse, much worse. But I am confused and not in a good spot. I ask for your help and in turn promise to help others once I “get there”.

I am anxiously looking forward to all your input and one day hope to help others once I can navigate this new life

I tried to be as thorough as possible to help give the background so this is very long. If you’re looking to help but don’t have time, skip down to the summary and questions.

My name is Rich and recently have had some issues with my left hand. I am 41, slightly overweight, but rather athletic and muscular and have been able to exercise for most my adult life and generally healthy. Physicals yearly we’re always great. Still, I’ve always had 10-25 pounds to lose. I eat healthy about 80 percent of the time but my 20percent of the time can be large calorie meals. I’m married with a 4 year old and another one on the way imminently. I work an office job with a lot of typing. Back to my body, over the last two years I’ve had some inflammation type issues as I’ve attempted to lift heavy weights, usually something will tweak in my shoulder. Ive gone to doctors but never figured the cause, but rested and was prescribed duexis, a super ibuprofen, and that has helped. I have no idea if that has anything to do with psa, I think probably not.

At the turn of the new year I wanted to run a lot. I had run a fair amount in the past but made it a commitment to run 5-6 times a week. After a month and a half I had some knee pain, and then what I believe shin splints. Running stopped since. It was at this time I also noticed just sitting on the floor to play with my 4 year old for more than 5-10 minutes left me in rough shape- upon getting up my back and knees were really stiff and I would have to move soooo slowly to get up and be able to walk again. I have similar feelings upon waking with my knees, back, and even side of ankles. Good days and bad days but I am 50/50 on this being related to psa. Some days were better than others.

Finally to what made me go to the doctor. A few months ago I had my 4 year old on my shoulders and when I went to lift her up off me, my hand froze with a bolt of pain. It was both painful and strength limiting at the same time. I persevered through and didn’t drop her but I became scared of what might happen. The following days and weeks I’d notice lingering stiffness and pain in my upper hand and left pointer finger, usually along the knuckle or the sides of the finger, then the middle finger, then the index finger. For the most part if I am just resting, things were ok, but certain strength using functions of the hand would trigger the pain/lock/stiffness in varying levels. By the time I went to the doctor after a month or so of this just making a light fist could onset the issues and I now feel it in every finger to some degree. Some days I feel a hot almost burning pain along the sides of my fingers even in a resting position. Back to the super ibuprofen duexis, I thought that this has helped and told the rheumatologist it did. I am not so certain it does anymore. If I take two I think things feel less severe but it’s still there. I now am starting to feel it in my right hand slightly, my left wrist has a tingle.
Doctor’s resultsRegular doctor took x rays of hand and did not see anything. They said to go to a rheumatologist. They tested for rheumatoid arthritis and this was negative. Lyme disease negative. I found Dr harry Shen at NYU langone. We spoke for a while and he mentioned family members with psoriasis. I remembered my aunt (father side) has it bad, her arms covered. She’s very overweight and struggles to move in her 60s and 70s. I have no idea if she has psa but I do know she has psoriasis. My mother passed when I was a teenager but I remember her having smaller clusters on her elbows, not sure if diagnosed as psoriasis and she was not related to my aunt. The doctor ran a test and said the test didn’t confirm psa but tested positive for a protein, C-some number(sorry was over the phone and I do t remember) I think he said, that points us in the direction of psa. He called it a smoking gun. I have no psoriasis skin issues at this time. I am a 41 year old fairly healthy, muscular , if not slightly overweight Caucasian male of Italian descent with sudden onset hand and finger pain, sometimes crippling, that started out of the blue. Started in left hand, and now is in a right hand finger or two. I feel tingling if not “pain” in my left wrist now. I liked the doctor and feel like he is on the right track but I want a second opinion before making a major life adjustment. . I have a LOT of questions. He prescribed me sulfasalizine and only said that it may cause some upset stomach and takes two months to kick in. After reading here, I have not started taking the drug, it seems more serious than a little “upset stomach”. I didn’t realize this was an immune compromising drug and has a host of other complications. I was hoping taking duexis would work for me and keep things at bay. I stare at that bottle of sulfasalizine pills every day and wonder what will happen to my life once I go down that road. I am beginning to think I don’t have a choice but I would like to hear everyone’s experience.

Ok I have tried to provide as much of a background, here are my questions, all opinions from personal experience welcome, I fully understand no one is a doctor and I should ultimately only follow a doctors advice or check with them first, I hold no one liable and appreciate all personal experience:

First can anyone recommend a great rheumatologist for a second opinion in Manhattan.

The doctor said that I am not confirmed as having psa, but the protein test points in the right direction, along with having and aunt with psoriasis. Is there a definitive test that will say “yes”?

If my hand pain is getting worse, is the only way to stop the progression by starting a DMARD?

If taking a DMARD lowers your immune system, will stopping taking them restore your immune system?

Is there any other way to treat this condition that allows a normal/semi-normal life?

If left untreated other than ibuprofen am I risking serious damage? Will this take over my body if left untreated?

Will the sulfasalizine stop working potentially requiring a switch to more debilitating drugs? Reading on here that seems to be the case for some, and as a 41 year old expecting a newborn this is my greatest fear. I want to be able to play fully with my children. I want to throw the baseball in 10 years as my dad did with me.

I read to eat antioxidant rich foods and cut out fried, processed, sugary and alcohol. I have tried this but I have not been able to pinpoint what’s a good day and a bad day. Yesterday I ate pizza, pasta and had some beer and today’s actually a better day. What has been your experience with eating certain types of food and it’s effect on pain/advancement of the disease?

Any other supplement to consider? I currently take vitamin b,d, am going to be more vigilant on taking fish oil, and a friend said they heard circumin helps with inflammation when I was discussing my shoulder? Any experience with curcumin? Two weeks in and I don’t think I notice anything.

If I have 5 or more drinks with sulfasalizine am I in big trouble? I’m not a massive drinker but 2-3 times a month will have more than 1or 2.

Do I really have to avoid the sun on sulfasalizine? The beach is probably my favorite activity/place

Any experience with losing weight and an improvement in symptoms? It’s a chicken/egg scenario for me, that if psa is causing my knee issues I won’t be able to get my metabolism up to lose the weight needed. I think the knee and lower back may be unrelated but I’ve never found the cause. I want to get in great shape but my knees and my hands are making this difficult.

For hand issues, does anyone every try to “work through the pain” to see if using the muscles and getting blood flow in the area helps? Are there exercises that improve the hand and finger area?

Anyone ever NOT start a DMARD and improve? Or is this a life sentence that will only get worse?

Thank you any and all of you that will explain you experience. I am scared. I am depressed. I have been depressed before this, but never professionally diagnosed. I kind of hate doctors and the doctor process. Like when trying to fix my shoulder unsuccessfully all these years, it gets frustrating playing the “we don’t know what it is, let’s just see if it’s not this and keep narrowing it down and maybe we will get there”. I don’t want to do that with my brain. I have read some of your stories and can see that not being depressed will help how you feel from psa. In general the older I get, the less confident I am in doctors. I’ve wasted a lot of time taking off work or sacrificing family time to not get things fixed. All doctors are not created equal and I don’t like trying to find a good one. But I had a whole bunch of things that made me depressed and now I feel beaten to the ground with the psa. If I thought I had some problems before, well you never know how good you had it until the next problem. I feel like life can only get worse and I didn’t think 41 was that old. The idea the psa will get worse and I can’t at some time in the future be there for my children as they grow has me terrified and sad. The idea I may one day drop a child if I get a sudden freeze also scares the hell out of me.

I really am hoping to hear a lot of feedback from everyone and especially if someone is in a similar boat to me in their early 40s.

I have not even told my wife because I don’t want to stress her carrying our child. I also feel like less of a man, I need to be the family protector and I realize it’s cave man mentality but I want to be seen as the strong protector. I don’t want anyone to worry. I also don’t want to feel like a cripple and have people treat you differently. So I also have not told work. I don’t think friends would understand what this is so I can’t explain to them. It would sound less severe than it is and they wouldn’t get it and again, view you as a cripple. It just does not seem like people understand what psa is.

Again I thank you in advance because I am alone, confused, sad, and increasingly desperate.

I have no one to get through this except you all.

Sincerely,

Rich

2

Rich, thanks so much for your story. I know it’s not easy. I got this darn thing when I was 36 with a two year old - couldn’t even pick her up. Had to sit on the floor to let her climb into my lap. Could only walk a few hundred metres before I had to rest.

I’m going to give you a longer answer later, but the short answer is that it always gets easier (mentally, at least), and most people go back to having a near normal life. The reason I have to give you the short answer now is that it’s 5.30am, and I need to get packed to go work 12 hour days wandering around the Australian bush, and working on mine sites for the next week. No way in heck I could have done that at diagnosis. It took time, but it really did get immensely better, and really does for most people (remember those of us here are the ones who had, or are having, a hard time of it - there are plenty who luckily find a good DMARD early, respond, and go about their lives.

Others will pile on shortly with answers, and I’ll try to pop back in with mine when I get to the airport.

In the meantime, know we are here to listen and help wherever we can :grin:

1 Like
3

Hello Rich, and welcome to you.

That’s a lot to digest … it’s very thorough though and rather restrained, so much so that I was a little surprised when you revealed your anxiety and your fears. But they are so understandable.

I won’t try to address all of your questions, but I may be able to help / share my experience with a few of them.

Firstly, the ‘C’ protein. That is likely to be C-reactive Protein (CRP), which shows that you have inflammation in your body. Oddly (as it may well seem to you) quite a few people who have symptoms might even be a little envious as inflammation from PsA doesn’t always show up in blood tests, but when it does it can help hasten diagnosis. And, with PsA, prompt diagnosis and prompt treatment bode well, very well, for future outcomes.

I understand that you are nervous about the drugs. I never took any pills if I could avoid them before being diagnosed with PsA. And the few times I had taken any drugs they tended to overwhelm me in some bad way … reaction to antibiotics as a child, manic episode as a result of taking valium in my late teens, disastrous experience with epidural during childbirth. Also, I very much liked a drink … but boy oh boy, the hangovers! Much worse than those my partying friends suffered. But sulfasalazine … no reactions of any sort, nothing, zilch, nada. Nor any beneficial effects in my case, unfortunately.

Since then I’ve taken another traditional DMARD, Methotrexate, for 6 years. Again, it doesn’t debilitate me at all, I’ve been very lucky. And then Humira - a biologic - since 2014. Again, no ill-effects. But both drugs have helped the PsA considerably. People do have problems with the drugs we take but I suspect that most of us ultimately find drugs that we tolerate well, often extremely well, and which succeed in slowing down this progressive disease and greatly improving our lives.

You speak of your immune system being compromised by the drugs. Well, if you have PsA then your immune system is already compromised in a sense, it’s out of whack anyway. If it’s any consolation, autoimmune diseases seem so common (increasingly common?) and there are millions of people out there with such diseases doing all sorts of interesting and demanding things.

You are not old, you are not less of a man, you’re a regular human being with a very treatable disease. You will be okay.

Depression with PsA can be linked to the disease itself, to the inflammation the disease causes. It is most certainly linked to a new diagnosis! We’ve all been there.

Might you summon up the courage to talk to your wife about this? Do you think she might want to know how you’re feeling? I bet she would.

PsA is bad news when it’s ignored. But treated early … things can go really well.

Also, just noticed your reply to Jen. Not everyone with PsA has current skin psoriasis, but the stats are high - about 80% - for concurrence of PsA and nail psoriasis. And nail psoriasis can just mean grooves.

2 Likes
4

Thank you Jen.
I feel guilty seeming so needy of responses. There are so many who are suffering worse. I just don’t know which way this will go.

One more condition to note and I forgot to tell the rheumatologist, although I did mention to my primary doctor and they had no clue:

I don’t currently but for 6 plus months have had small vertical lines in a few fingernails. Brown or black, very thin, thinner than a pencil and not that deep, usually near the top

I was reading another thread and have seen “pitting” mentioned as a sign of regular psoriasis. I suppose this is pertinent info although it has been very minor.

5

Ultimately you’ll want to start on a disease modifying med. It’s the only way to slow/halt disease progression.

When my son (my 2nd child) was about 9 months old, I had a few fingers swell up for a few weeks then improve. Then the fatigue hit. I live in the metro NYC area, so when I went to my GP I was tested for Lyme disease among other things. All of my tests came back clear, but she sent me to a rheumatologist, who promptly diagnosed me with psoriatic arthritis. I was started on just NSAIDs, but within about 6 months it was obvious that more was needed and I was started on a DMARD. My son’s first year or so, I napped a lot. I couldn’t make it through the day, and my pain level was very high. He’s 11 years old now, and I’ve been on a biologic for over 4 years now. It’s not perfect, but it’s so much better than it was back then.

This is the gap for you. You can look in the Newbies section - https://discussion.livingwithpsoriaticarthritis.org/c/a-newbies-guide-to-psa to see some of the permanent posts there. You’ll find it a great start.

1 Like
6

Thank you Sybil thank you Stoney.
I appreciate your kind words and time.

I do appreciate the link as I’m having difficulty maneuvering this site.

I guess I have read mainly the worst of what_may come_emphasized text__ in my browsing here and it scares me. I guess there would be much less posts of “easy diagnosis, treatment, and back to normal” as why would people feel the need to say as much so emphatically. But even in the early responses (thank you btw) it seems we all(I’m going to put me in the we as I feel I am part of this group even if not officially diagnosed and I’m still new) have many different stages of coming to grips with this. And (potentially) lots of trial and error. That does indeed scare me. I am worried about being 4stages down the road and having nothing work, or an issue with insurance and the cost of the drugs that may actually work, or shots, or this or that, or wrong diagnoses all while condition getting much worse.

I would categorize my aunt as a mess, and not as an insult, but she has a very poor quality of life. She really can’t walk. She couldn’t even go to my wedding. I naively thought her problems were weight related, and had no idea if she suffered from psa. I still don’t but now that I’ve had a taste myself, I would believe she does. I feel awful for her.

I’d like to talk to her but we are not particularly close. And if she has something else I don’t want to call her out of the blue and make her feel bad saying “hey do you have this?”

As for my wife, I will share with her after the baby. As It is, we have enough on our plate without going into details, let’s just say it’s better for her if she’s not stressed about one more major thing. Although if I can get it under control I’d gladly hide it from her so she doesn’t worry and also I don’t get “that look” any time I struggle. I hope I am not making myself seem like too much of an a-hole. I am very private and don’t like people worrying about me.

I like to help people and am very grateful by what seems like a community of people that are willing to help. I like that I can anonymously talk freely here.

One last question, as I noticed, at least from names, the first 3 replies were from women. I may have read on one of the pages but don’t remember - does this disease tend to affect women more than men?

7

Stoney do have an nyc area rheumatologist that you love and would recommend for a second opinion?

8

I’m in Westchester. I love my rheumatologist, but she’s located in Mt. Kisco. Her name is Dr. Margaret Lenci. But you made a good pick, at NYU Langone. If you wanted to stay in the city, you could try NY Presbyterian for a second choice, but I’m guessing that your doctor is superb. My daughter has been seeing an epileptologist at NYU and we’re so happy with her.

The doctor should be able to make a clinical diagnosis. At the very least, with the elevated c-reactive protein, it implies that it is an inflammatory situation. I am sero-negative, no elevated inflammation markers, and still diagnosed with PsA.

You asked about men. The women here can be a bit chattier, but there are definitely men. It’s about evenly split, this particular type of arthritis, between men and women. My husband is also diagnosed with it, just in the last year or two. Bodes very well for our children.

9

Hello again.

Yes, PsA can be a struggle, I’m finding it a bit of a struggle right now. But diagnosis came late and I was very much a mess by then. I have had (and will have again) some really long-lasting good periods, more good than bad in recent years. I think you are absolutely correct when you mention that those who are not struggling so much are far less likely to belong to this forum, or at least to stick around. Please don’t see your own future in your aunt. Sorry to hear things are so difficult for her, but this is a good era for PsA treatment and you are a different person.

1 Like
10

Oh boy, sorry to hear but at least they’ll have two experts guide them through this journey.

I’ll take advice and insight from anyone, male female whoever has time. I was just wondering if there was a split heavily one way or the other.

I have been reading the beginners area a lot, trying to pinpoint my questions for the future.

One thing I will say is fatigue has been mentioned a lot and I have had no onset to coincide with my finger and hand (and possibly knee) pain BUT I have had some serious bouts of fatigue for as long as I can remember. Just times when I could not do anything until I napped and no idea why at the time. Just throwing out another question no one will know how to answer but is it possible I have had psa a long time and fatigue was the only symptom to manifest until recently when the rest have kicked in?

This is not a pressing question, just more curious.

11

I’m glad to hear you’re having long “good periods” that provides hope, but it also reinforces the fear so to speak. I hope I am one of the fortunate ones to try an early level DMARD and have it stick and get a lot of use from it, but it does seem from reading threads here a lot of people have the carpet pulled from them quite often. I am understanding the need to keep fighting and not complain, but I tend to be a pessimist and I currently have a bit of an idea what this disease can potentially do. I am not particularly strong and adaptable to stay up when things take a sudden change. I’m just not built like that. Some of the stories here honestly scare and depress me. I admire those for sharing and persevering but I read and it sounds awful. I wouldn’t wish this on anyone, the pain, the surgeries, the limitations, the uncertainty, the guessing games, the side effects. People are u fairly robbed of their regular lively functions in some cases.

I’m a bit of a baby as I have more fear of what could be than what actually is, and I assume it will just be bad eventually . This is my problem not necessarily a psa problem.

I’ll be honest, I’m scared something will start working and then stop and then the mystery starts all over again. I know boo-hoo, a lot have it way worse and if something did work even for a little, many would wish to be so fortunate. I admit I need to get my self right and just try. I really am gathering info and I am listening to you all. I am looking and listening for direction. I don’t know why I keep getting off track, I’ll try to stick to the pertinent facts and questions and stop feeling sorry for myself.

Thanks again for listening

12

You’re not alone there, SpaceInvader. On top of all the other fears I had about the meds to treat PsA, I also had those same anxieties as you. Plus, I didn’t want to be bothered by frequent doctor appointments, etc., etc… It took me several years after diagnosis before I agreed to start injecting a biologic. Because I waited so long for treatment (I had been seeing a rheumatologist for about 10 years and PsA had already been suspected for about 4 of those years before it was a true diagnosis) I had already declined Sulfasalize and Methotrexate. I got a couple short prednisone bursts–which put me on cloud nine both mentally and physically. When I begged for more prednisone, my very wise rheumatologist said no. I guess prednisone is like a double-edged sword. Too much of it is NOT a good thing! So, I mustered up the courage to start a biologic–I got to choose between Humira and Enbrel–I took Enbrel.
That was nearly four years ago. I’m much older than you (64). I feel so badly for those who are struggling with pain and disability at such a young age as you. Unfortunately, I see some signs of psoriasis and possibly PsA in two of my kids who are in their 30s. :worried:
I’ve had psoriasis since my early 20s and I think off and on PsA symptoms but things always improved with physical therapy (lower back/neck pain, plantar fasciitis, things like that).
From how you’ve explained it, with the continuing symptoms which seem to be getting worse, I hate to tell you, but it doesn’t sound like a short flare or something that will improve with physical therapy or natural remedies.
Enbrel has made a world of difference for me. The PsA and psoriasis are about 80% improved, but being 64 has its downside. I don’t feel “young”–definitely not as energetic as I’d like to be, and I have damage in my feet (probably from not treating the PsA early on), so walking is painful all the time.
Hopefully your doctor will get you on a biologic and things will improve–and they can improve dramatically! So exciting to have a new baby on the way! Best of luck, and take care!

13

Thanks grandmaJ and everyone else who took time out on a holiday weekend to see if anyone needs help

I really do need help and I come here hat in hand begging for real life answers to my questions. A lot of it is newbie stuff and I will look deep in here to find it. But some of what I would like to know is case specific and I’d like to hear real world answers.

I will research and try to narrow down my questions and try to reduce the self pity. I’m sad, I’m mad, I’m angry, im Confused, I’m scared, I’m bitter, I’m a lot of things that everyone else here is or was, so I’m not special. I will try and improve the attitude and make it less about me and more about how to deal with some specific questions.

Thank you all, 4-5 people responding within a few hours on a holiday weekend makes me feel good, there will be help. I will do my part

Thanks

14

Hi there @SpaceInvader, and welcome to the group!! I’m still fairly new to all this too, and understand your reluctance to try meds (I will address that a little further down).

Firstly, I’d like to comment on where you are at right now… the sadness, anger etc etc etc… believe me, these are all normal responses to what might be considered grieving the loss of your health, you are certainly, utterly and completely entitled to do so!!! This is all part of the “normal” way for most of us humans to “deal” with being dealt a blow such as a diagnosis of any progressive disease, and to be honest, I’d be more concerned if you were not feeling all of those emotions about now… do not beat yourself up for it… allow yourself to go through that “grief” process (try not to wallow in it though :wink:), the sooner you do the quicker you will be able to accept where things are at and give yourself the chance to move forward.

Absolutely, DO research and learn all you can about PsA and it’s treatments, try not to be too put off by the “possible” side effects of the various meds used for treatments, there are many out there who have taken these for years with little to no side effects at all… or (like myself) have been able to keep taking meds (sometimes by reducing dosage for a short while) and work through or past most of the minor side effects… while the possible side effects lists are often long and daunting, understanding that the chance of getting any of those side effects is often very small, and you won’t know how any particular med may affect you if you don’t give it a try.

I cannot comment on the sulfasalazine (as I know little to nothing about it) other than to say that if your Rheumatologist has prescribed it then he/she must think it is warranted for you… and do remember, even though you don’t feel that you have a firm diagnosis of PsA, many of the meds used for PsA are also used to treat other autoimmune diseases, so if the diagnosis isn’t quite bang on (as in you “might” have some other form of autoimmune arthritis) then the sulfasalazine may very well be the med you need right now. My own PsA diagnosis was given by a GP who started me off on NSAIDs and then Methotrexate before I even got to see a rheumy, and the rheumies are now saying there is definitely inflammatory arthritis but are not quite ready to give a definitive PsA diagnosis (although they are using treatments appropriate for PsA).

For me, I have noticed some improvement from my current meds (Methotrexate, Leflunomide and Tilcotil), they have at least reduced the symptoms in my hands to the point where I now have no trouble turning door handles, opening jam jars etc etc and have cut the fatigue down by at least 1/2 too… this means I do have a better quality of life with meds that I did without them.

When it first seemed likely that PsA was what was going on in my joints (a little over 2 years ago now) Dr Google got a massive work out :laughing: and most of what I read led to an understanding that the latest medical opinion is to start out treating PsA aggressively, as soon as possible, to delay progression of the disease and reduce the risk of bone erosions/joint damage… I also stumbled on this forum and very quickly decided that PsA is not something to mess around with… I have now gone from being someone who only took meds when absolutely vital, to taking whatever the rheumies suggest to try :laughing: and infact I’m hanging out to try a biologic… even though, like you, I feel that my symptoms are mild, compared to many others, hopefully I have a lot of years left to live in this body and I want to give it every chance I can to keep it working as well as possible for as many of those years as possible.

On a positive note, it is great that you have got your tentative diagnosis early, sadly, many have suffered for years without diagnosis or treatment until the disease had progressed significantly.

I truely am sorry for the pain and anguish you are suffering, do try to hang on to hope… there is realistic hope that this beast can be put back in it’s box and you will be able to continue to live a “normal” or “near normal” life for many years to come (with the right treatment)…

Please do understand this is all just my opinion, and I do recognise that you MUST do what YOU FEEL is RIGHT for YOU to do!!!

All the best, and please do keep us in the loop where things go with this!!!
Big Hugs!!!

15

Hi Rich,

Many of the others have said what I was thinking. First I take sulfasalazine. I had no worthy of mention side effects other than for the first couple of weeks I became even more noise sensitive than I am normally. And once I was told to take 6 tablets a day, it so worked. However 6 months later it isn’t working quite so well. But that’s OK as I still have so many other options to try. And I’m good with that. My next rheumy appointment is this Friday and I’m so looking forward to it. However I just couldn’t get along with methrotrexate (mtx) at all. For me sulfasalazine is a really good drug that didn’t need to kick my love of wine out of my life either. As then I doubt I would have coped.

Also presently it’s unlikely your immune system is normal. Because your blood tests tell you you have inflammation and your body is certainly telling you have inflammation too. All the drugs are trying to make your immune system more normal so it stops attacking you so much. Getting your head around that bit really does help.

The angst and horror and pure being scared sh*tless is also perfectly normal. I spent the first year after being diagnosed basically having a tantrum I was so scared. However people on here listened to me, kicked me in the behind too but bascially got me through to the other side. That was invaluable. I like you was also diagnosed early. Can I say that’s only great with hindsight. But please try and treat it like the good luck it is. It’s certainly far better than others’ experiences of trying to find a diagnosis of what’s wrong with them. One thing that helps me now is good old fashioned talking therapy too. That helps put a better perspective on things and makes things easier. And it’s a forum where you can safely express all that stuff and end up feeling an awful lot better for it too. So please don’t put off finding yourself a good psychotherapist. I’m off the belief that every first rheumy appointment should offer some sort of talking therapy too as like you I found the diagnosis truly awful from an emotional point of view.

I had horrid psoriasis as a teenager but virtually none for the 30 years before being diagnosed with PsA. However I’m not like my brother who sounds like your aunt, given he’s a mess with both psoriasis and PsA and other stuff and I never will be. So you’re not going to be like your aunt either!

Once I got over my tantrum and started treatment, things got a whole better. First I saw things can improve, truly improve. Secondly I realised that PsA never stays the same so my worst days didn’t last and I also got to treasure my good days properly. I learned to manage the rollercoaster better. Now it’s not such a dramatic rollercoaster either. It sort of just settles in my view.

And for me dietary changes other than cutting out sugar made made no difference. However if I eat something really sugary I’m in pain, so I tend not to.

I’m not a sun worshipper so I can’t advise on that with sulfasalazine.

But I will say moving all bodily parts really helps. Any exercise is good but go easy with it but building up a decent daily exercise always helps. Mine is walking my dog.

I hope this helps. And just know so many of us have experienced much of what you’re experiencing right now. You’re certainly not alone with it all.

16

There is nothing wrong with your attitude to my mind. Please don’t feel you have to come over all strong and positive right now. You say you are a very private person and that the anonymity here helps, well then you go ahead and express your concerns and fears, it’s needed at this stage. ‘Getting it all out’ may even impact positively on your health overall. We’re here for you as you are and being ‘real’ is therapeutic, I firmly believe that.

As for the specific questions, you’re on the right track there as well. Knowledge is power and all that.

Oh, and yes, my bad times make me sad and angry. However, though things have been tough lately, it is a very different type of tough from a few years back. Then I was just hoping I could shower unaided etc. But this week I’ll be up the top of some scaffolding painting woodwork. It’ll hurt a bit … I plan to do quite a lot of complaining myself lol.

It’s great you’ve joined, I hope we can help and it certainly sounds as if you are taking a very constructive approach to understanding and treating PsA if indeed that is what you have.

17

Thanks all. Just waking up but came right here to see the replies.

I guess at this stage I am not as opposed just for the sake of being opposed to starting the DMARD. I have to cope with this and see if it works. I would like a second opinion so I’d still like a specific doctor in. Manhattan if anyone has a great one. I do like Dr shen it’s just I want a second angle to view this thing before starting up. Although it seems like rheumatologist appointments take at least a month in advance! so I need to get going I gues they’re in high demand.

Anyone have experience with curcumin supplement? Is this basically fools gold and I can stop taking it and just accept I wasted a little money or does it really affect inflammation?

18

For me, when this happens, it’s 100% PsA. This sure did not happen prior to onset!

Nope, wish there was

Pain is one thing, progression (ie deterioration of joints and or bones) is another. The only way to slow or strop progression is a DMARD.

In my case, I consider DMARDs immunomodulators, not immunosuppressants - so they change my immune system, favourably, rather than lowering it. Fun fact; many viruses cause most of their damage not from the virus itself, but your immune systems reaction to it. It’s quite possible, for example, that the reason I was not hospitalised the second time I had dengue was because I was on humira - which helped damp the cytokines storm that can make you really sick with dengue (especially the second time). And yes, when you stop the DMARD, it seems that most people’s immune systems resume what they were doing, though the timeframe (usually days or weeks, sometimes months, depends on both the drug and the individual). [quote=“SpaceInvader, post:1, topic:8593”]
Is there any other way to treat this condition that allows a normal/semi-normal life?
[/quote]

Hmm, we’ll there are some people who gain remission (of pain and lifestyle, but not of damage prevention). Some of them will talk of certain diets or supplements, and there is a proportion of people who are just lucky, and it happens regardless. There isn’t good evidence of this that I’m aware of, and there is no evidence that progression (aka damage) goes into remission. [quote=“SpaceInvader, post:1, topic:8593”]
If left untreated other than ibuprofen am I risking serious damage? Will this take over my body if left untreated?
[/quote]

Take over - maybe, maybe not. Damage, yes. Serious? Unfortunately you generally can’t tell till it’s done. [quote=“SpaceInvader, post:1, topic:8593”]
Will the sulfasalizine stop working potentially requiring a switch to more debilitating drugs?
[/quote]

Deep breath, one step at a time :blush: Most of the drugs after sulfasalzine are no more debilitating than sulfa, and many of us find them less so (in fact I describe my DMARD as enabling). Give yourself some space to do what you need to do now, and worry about the next step when it comes.

Ok, I hope I’ve helped with some answers (whilst acknowledging that neither I, nor anyone else on here is a medical professional, and many of theses concerns you should also talk through with your doc).

It’s 10 and I have to get up at four for the next flight, and if there’s one thing I’ve learnt, sleep is one of the most important components to preventing and minimising flares. So I’m going to go now, and try to answer the rest tomorrow if I can get coverage.

But one last thing I wanted to say - your mental health is at least, if not more, important than your physical. You’ve said you’re a private person, and I get that. And for me, there is nothing better than going to see my counsellor / psych, who knew nothing about me before I started, and starting with a clean slate to get that support. Get an appointment, tell your wife you are going to the gym (for now).

I wouldn’t try to re-wire my house in a crisis without a qualified electrician, and I found it invaluable to have the help of a qualified psychologist to re-wire my brain in the crisis that PsA presents.

It will get better, but don’t be afraid to ask for help :grin:

1 Like
19

Many thanks Jen
Very insightful

20

Men and women are affected equally by PsA but I think women in general talk about it more!

I can’t really add anything much to what has already been said to you, other than the drugs can seem scary but without them I’d be disabled and in a wheelchair by now! Methotrexate worked well for me for a few months - I was supposed to then go onto sulfazalazine but I was contraindicated due to aspirin allergy and I’m also on anticoagulants and sulfa can have a slight anticoagulant affect. By the way I’m on anticoagulants because PsA caused inflammation in my blood vessels and narrowed them causing blood clots. This resulted in a DVT. So the medication is a MUST in my opinion to get the inflammation in your body reduced as quickly as possible. Methotrexate gave me my life back but my Consultant wasn’t happy with my still too high inflammatory markers so it’s bioligics for me now, which have been proved to slow down and even halt the progression of this disease. PLEASE start the sulfasalazine, give it a go. It should start to work gradually and reach full power by 12 weeks. If not there are soooo many other drugs out there. I was told it could take a year or more to get the right mix of drugs to suit me as we are all different. There is more than hope out there- there is life! And a good life! Take care xx

1 Like