Effects and success of Sulfasalazine

Hi I am 52 and was diagnosed with PSA on 21st March on the basis of a swollen finger and a couple of swollen toes - and minor psoriasis since my teens. On that fateful day I was given the life sentence of Sulfasalazine, a major shock as I have little to do with doctors over the past 20 years. (I like my wine a bit too much for mtx).

I can't stand the idea of pumping this filthy stuff into my body every day. Lowering ones immunity seems to me to be an evil thing to deliberately do to our bodies, especially as my business life is London where to I commute daily on a train of 1000 people with very infection going. And then there is the disruption of the blood tests etc and being ill with the side effects...

I just wondered how others had got on with the drug. At the moment it seems our of proportion to the malady expecially as subsequent ultrasounds have shown that there is no joint damage.

Many thanks

Ian

Hi Ian, you're right in what you said in your comment on my wall ... sulfasalazine (ssz) is probably the least efficacious of all the DMARDS for most PsA folks but that said some people do ok with it. It won't help your skin psoriasis, though. If you have mild disease it may be enough to keep symptoms, progression and damage at bay BUT the rub is there is absolutely no way of predicting what your individual PsA path will be. What the research does show is that early aggressive treatment has the best long term outcome. Bear in mind, as well, that in the UK to access the gold standard biologic therapies you have to have tried and failed two DMARDS so methotrexate or leflunomide may have to be in your future anyway.

Specifially on ssz, I couldn't tolerate it and turns out I likely have a sensitivity to sulphonamides, so I never took it for long enough to see if it gave my biologic a boost ... so for me it wasn't mono-therapy either. And I have a UV sensitivity too so I'm no longer a sun worshipper either ... factor 50 in the shade for me!

I understand your concerns about the daily commute. I did it from Norwich to Liverpool Street for a long time before my PsA reared it's ugly head but only occasionally since. My husband, though, who has Crohn's disease and is on a much stronger DMARD than ssz, communtes daily to London and travels the world including to some higher risk countries. He has not had any increase in frequency or severity of illness ... maybe one or two normal colds .... and he's never picked up anything on an aeroplane or his overseas trips. Many other members here are also global travellers, work in the medical profession/hospitals, have or are around young children (those notorious bug bearers) and for the most part everyone is just as sickness free as they have ever been. From my own experience it makes complete sense to take reasonable precautions with handwashing and avoiding sick people and I always use Boot's Cold and Flu Defense Nasal Spray before going out but that's about it. I still eat unpasteurised cheeses, cured meats and pate, handle animals, stick my hands in garden compost, eat takeaways, fast food and in restaurants etc etc etc.

And I'm going in to bat on alcohol ... as someone who also enjoys a drink and probably drinks too much (so my liver tests tell me from time to time) but if this became more important to me than treating my PsA I would know that my vino had control of me, not the other way round. In reality you may need to cut back but your bloods are monitored so closely anyway that you'll know pdq and can take corrective action if your liver tests start to go awry. I can recommend a very good alcohol free shop and some of the wines they stock have won awards in competition with alcoholised wines ... I think they also do quite a few beers and some spirits too. Let me know if you want the website (I'd put it in here but can't remember off the top of my head).

To end on a positive note, many, many, many people join us here. Gather information, learn how we have all managed and treated our disease, faced the medication fears, side-effects etc, start their DMARD treatment and find that within a few weeks they are well enough again to get on with their lives pretty much 'as before' and we never hear from them again. That is likely the majority. But there are a smaller minority of us who haven't been that lucky so please do not under-estimate what PsA has the potential to do!

Keep talking to us and asking questions. In the meantime try to have a good weekend.

Hello Ian3900.

I'm in two minds as to how to reply. On the one hand it looks as if PsA hasn't given you too much of a bumpy ride so far, on the other I'm feeling that you may be underestimating just how bumpy it can get.

If I'd only ever had a few swollen digits I can see that I might resent taking any drug. But personally given everything I've learned since taking Sulfasalazine & my own experience of it I might not be too worried about that particular one in terms of detrimental effects on your overall health. For me it did nothing, zilch, and I had no discernible side effects. There are some who don't get on with it but they seem to be relatively few & far between. There again, there would seem to be rather more who find it ineffective.

My concern is that PsA is very often a very nasty disease. In retrospect mine trundled on relatively quietly for years before I was diagnosed. I felt like death warmed up mind, but thought that must just be bad luck, age, the menopause etc. etc. Then it hit me full on. I'd date that event from the morning I mentioned to my husband, without my characteristic melodramatic tone, that I thought I was dying. He's one phlegmatic bloke but says he could see exactly what I meant. Then things got a whole lot worse and within months I was down to one useable limb, poleaxed by fatigue, unable to do anything.

Sure, everyone's PsA takes a different course. But it is destructive in a number of ways including insidious co-morbidities. In short, the systemic inflammation it causes is itself 'filthy stuff'. I don't want to take any drugs, I'd agonise over taking one aspirin in the past, but the truth is my overall health has bloomed since being on both Humira and Methotrexate. I'm a 60 year old woman who feels better & more energetic than she did at 45. I like a drink too and squeeze one ..... or two or three in when I can. My liver seems okay with that. But these days I don't even want to drink like I used to 'cos I think there used to be an element of 'self-medicating' (or at least that's my excuse) and I don't need to anymore.

I wish you well. I just hope you'll go careful. Stick with us and make up your own mind as of course you will.

Hi Jules and Sybil, many thanks for the generosity of your time and honesty and frankness in replying, and I am listening.

I am the sort of person who will put up with a headache for three days before taking a Nurofen.

My problem is that I am typical; male, 52, tall, slim, never been ill in my life - at least physically - don't really believe I have PSA,, never heard it before 21st March, I am being asked to take a filthy drug that will screw up my life - tomorrow - by medics who won't tell me the percentage risks of the side effects, or of non compliance, or the likely success rate, but instead just try and bully me with the expected consequences if I don't do what I am told.

Sorry I am an accountant by training, and that is not the way my mind works, and I am director in a firm of business advisers in London, and we listen to our clients; we don't tell them what to do and threaten them if they don't.

I suffered work related depression twenty years ago and after a string of nonsense with pills that just made things worse Imanaged to beat it by sheer determination vwith the help of a good psychologist. Since the diagnosis for Psa the black dog ihas been back with time off work and a panic attack at a client a few weeks ago. Depression is a deep evil that I never want to go back to.

I am having counselling which is helping. I have also darted off to Spain solo for a few nights to get some sun and to the reflect. The sun business is a major issue for me. I am complete sun bum, get SAD in winter and sitting in the shade with factor 50 is my idea of being locked up in jail. as I said to my wonderful gf, I have two states of mind at the moment, denial and non denial, and the latter is better.

The good news is that the ultrasounds showed no joint damage. The X ray results should be back soon, so that will be the big decision point.

Thank you very much for your messages, they are exactly why I came on here, and with all best wishes to you too..

Ian

Hi Ian! I'm just the person you want to talk to! I have nearly the same attitude when it comes to meds, although I have used excedrin, the miracle headache reliever, for many years when I feel one coming on. (I do NOT like losing time in bed due to any kind of pain, and a bad headache is a waste of time for me!)
What I want to tell you is to keep a very close eye on your symptoms. Yes, a couple swollen fingers and toes aren't that bothersome, and, personally, I wouldn't take aspirin much less Sulfasalazine for that.
I was diagnosed with PsA November 1, 2008 and didn't take serious meds for it until July 3, 2014. The disease progressed slowly; first the weird fingernails and puffy fingers, snd slowly it took over my whole body--to where I was at my wit's end in March of 2014 when I found this site. That's when the smart people here convinced me to begin serious treatment with a biologic before I ended up in a very bad state.
That was shortly after I refused to try Sulfasalazine or MTX. I did have a couple prednisone bursts over that six-year span--three at the most--when my inflammation, especially in my lower back, was killing me. I LOVED how pred. made me feel on top of the world, but it's not a safe drug and I totally avoid it now.
I wanted to tell you my story, because we all have something different to tell. I had a very stiff lumbar spine for a few years, not knowing it was damage in the making. I also had neuropathy in my feet for quite some time--oh yeah, I did take Nortriptyline for a few months to fix that--but not until after the ice packs applied just couldn't resolve that horrible pain.
I just want to tell you not to let it go as far as I did before taking the meds. But, I'm doing well now on Enbrel for almost 2 years. And I haven't caught any bad or unusual "bugs" even though our grandkids are always carrying some type of germ. I am a bit of a germaphobe.
When I started Enbrel July 3, 2014, within a couple of days I could feel the improvement in my health. I had mild swelling and major stiffness along with terrible pain when getting up or just moving--terrible crushing fatigue, etc., etc. that all lifted quickly and within weeks my psoriasis had improved 75%!!!
My back and feet suffer from the damage PsA did, which is something that probably could have been prevented had I started taking Enbrel sooner. I didn't take MTX or Sulfasalazine because I was afraid of liver damage, and also my stomach doesn't do well with NSAIDS so I doubt I would have tolerated those meds anyway.
I'm glad you found this site so quickly after being diagnosed. There are so many people with various stories and outcomes, and all the information will be helpful!
I also wanted to tell you, you're not alone in your denial--nobody wants a diagnosis of a chronic, possibly crippling disease, but there sure are a lot worse things. I used to say if psoriasis is all I have to put up with in life, that's not so bad. Now I say, if psoriasis, PsA and chronic back and feet pain--and ringing ears.......well, that's not so bad!
Good luck!

Ian, hello and welcome.

We're all volunteers here, and we really do welcome the opportunity to share experiences, ideas and alternative points of view with people. We don't sell anything. We're not paid by a drug company or anyone else to be here. Unlike JulesG and Sybil, I am Canadian, and my experiences with PsA have been somewhat different from theirs, but more on that later.

First off, just to get the party started, I'm going to take issue with the idea that you've been slapped with a life sentence of Sulfasalazine (or medications in general). The situation is, in fact, that you've been given a life sentence with Psoriatic Arthritis. You didn't ask for it or earn in, it's not your fault, but it is yours to keep. It's a difficult realization, and one with which all of us here have had to come to terms. Some of us even manage to do that, more or less, on a good day.

You may be interested in the fact that I took not a single arthritis medication for the first twenty or so years of my disease. (Yes, I'm way past my best before date. :-) I struggled but I managed. I was tired and depressed, and my knees hurt, but I pushed on. Within a few of years, I had two knee replacements, and I recovered well. I carried on, bearing my aches and pains, until one day my feet hurt so badly that an x-ray revealed erosions in almost every mid-foot joint. And that's when the doctors, twenty years after my miscellaneous complaints started, diagnosed Psoriatic Arthritis. Up until then, I had never had the option of taking medication, you see, because I didn't know that I had the disease. But I will tell you that at that point, I WANTED treatment to prevent more damage, and the more aggressive the treatment, the happier I would have been. My conservative rheumatologist, though, gave me sulfasalazine, as well as all the other DMARDs in succession, and when I got to leflunomide, she considered that to be good enough. It took more foot damage and the loss of both my hip joints for someone to realize that my disease was severe, and to get me onto a biologic medication. That was three years ago. I now feel healthier and better than I have in the last fifteen years or so. Unfortunately, I now travel on a mobility scooter because ten minutes or so is the limit for walking or standing on my severely (and inoperably) damaged feet. Food for thought?

The other interesting comment that stood out for me was "Since the diagnosis for Psa the black dog has been back " Your diagnosis, as depressing as that is, may, in reality, not be the only reason for your depression: there is more and more evidence for believing that there is a connection between PsA and depression. In fact, for me, one of the best effects of my treatment has been a vast improvement in my depression.

Unfortunately, most doctors don't have the time, and many don't have the skills, to engage patients in an exploratory discussion on percentage risk in their disease and likely success rates of various treatments. Think of it this way: as a professional person in the financial sector, if a client were to ask you whether they should insure their house, what would you say? Would you trot out the percentage risk figures for fire, water damage and theft? Engage them in a detailed conversation about what their insurance policy is going to cost, relative to the consumer goods that they are going to have to forego in order to pay for it? Bring out pictures of charred skeletons of houses? No, more likely you'd say something like " I really don't think you want to take a risk like that."

That said, you have us! We have great information in our Newbies' Guide, and loads of people to talk to. You might also like to do a search for questions that interest you, using the search feature at the top right of your screen. I would also highly recommend this book, which many of us regard to be the PsA patients' "bible".

OK, wine. You mentioned it, I'm on a roll, may as well go for it. When I could see my retirement from education on the horizon, I decided that I would need something interesting, active and skilled to do after teaching, and it would definitely have to be something involving plenty of contact with people. I threw caution to the wind, went to college and did a sommelier diploma. I was going to dabble in restaurant service, wine education and perhaps get involved in wine tourism. I was just getting my "Spanish Wines and Sherry Tapas Night" act together when I was diagnosed. That put paid to my sommelier career: instead, I chose methotrexate, which was one of the hardest choices I've had to make in my entire life. Now my retirement "job" is being a volunteer here at Ben's Friends. It's not what I planned, it's not what I wanted, but it's making the best of what I got. And I will add that I am not the only person here who has had PsA put paid to their career.

On the bright side, it may not seem like it now, but you've been very fortunate to have been diagnosed as quickly as you were, before there was major damage. Nothing about the PsA sentence is easy. But as they say, a door slams and a window opens. It's all in how you look at it. (Oh sure, I sound brave this evening, but I do have my days!)

That's more than enough for now. We're glad that you joined us, Ian, and I hope after the earful we've given you that you still are as well.

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Hi Ian, and welcome! I see you have already been given some excellent information here by Jules, Sybil, Grandma J and Seenie :-)

I am 41 and was diagnosed in January with PsA, and Ankylosing Spondylitis after suffering with fatigue and back pain since September (which is very quick compared to most people here). I am currently taking Meloxicam and Sulfasalazine.

Less than a month after being diagnosed I started getting strange pains in my hands, arms legs and feet, and my Rheumy said it was classic PsA. I couldn't believe that in less than a year I went from excellent health, to having a few days where I was unable to walk, type, sweep the floor, etc. This disease can move FAST. When my feet were bad for the few days and it hurt to walk, I was scared that it would be permanent. What Sulfasalazine has done for me is eliminate the pain and inflammation in my arms, legs, hands and feet.

I had xrays from head to toe, and they showed no joint damage, but my bloodwork had high inflammation markers, and honestly, it took me a good month after my diagnosis to come to terms with what was happening to my body. I peppered my rheumy with questions, scenarios, justifications, excuses...anything that could convince him he was wrong about me having PsA. Maybe I just needed a new mattress, maybe I needed to exercise more, or eat better, or, or, or.... I have now come to terms with things, and I am focusing on how to maintain my health and keep the PsA at bay.

With that come the inevitable medications. At first I was adamant that I wouldn't pump myself full of meds, particularly biologics. But after finding this site and speaking with my family doctor and my rheumy, I have shifted my perspective. I don't want this diseased to progress to the point where it takes over. I don't want to have severe joint damage. I don't want to have multiple surgeries to replace joints. I want as normal a life as possible, and for me, the medication make that possible.

I have not had any major issues with Sulfasalazine, other than a bit of a decrease in my appetite and once in a rare while, a tiny bit of nausea.

I continue to drink wine, enjoy the sun, I swim and I walk a lot. My quality of life is better with the medication.

At the end of the day, you need to make the best choice for you. I am really glad you found this site. Getting information from people living with this, and not just doctors, is invaluable.

Just one thing, as one sun bum to another ..... my rheumy recommends sun (and indeed the occasional glass of wine) even though I'm on Mtx. Some on Mtx become extra sensitive to sun, but not all by any means. I've been to Greece, Morocco, spent many a day on British beaches when it's not actually raining ..... no probs. Is Sufasalazine also meant to increase sun-sensitivity? Looks like Aspyn doesn't have any problems on that score.


Ian3900 said:

I have also darted off to Spain solo for a few nights to get some sun and to the reflect. The sun business is a major issue for me. I am complete sun bum, get SAD in winter and sitting in the shade with factor 50 is my idea of being locked up in jail. as I said to my wonderful gf, I have two states of mind at the moment, denial and non denial, and the latter is better.

Many thanks for all your detailed replies, a lot to think about and it is helping me get perspective. As you know it is deeply shocking to be suddenly told that your free life is over and you are now slave to the meds. I am not out of that shock yet but you are helping. The constant mental fight in my mind, around the clock and without sleep, between the horrors of doing the meds and the horror of not doing them, truly brought me to the bottom. It's still there but a I am bit calmer.

The things I reacted against when I was told about SSZ were firstly the intrusion and the medical people getting a grip on me. Logistics, and an inflexible GP re appointments, will result in at least a day off work every fortnight, plus the impact of side effects. That's bad news when you are passionate about what you do. Also the whole thing of having to take pills day and night,and lots of them.

And the talk of the side effects as well. I hate being physically sick.

Second was the orange effect. I find the notion of having orange urine deeply repulsive. It will disgust me every time.and make me feel dirty.

Then the sun thing, which you are saying might be OK.

Oh,and my dear Dad whois 83, has just recovered from a jaundice related liver infection that resulted from some anodine antibiotics, and which nearly finished him off.

Many thanks for your help, time to get the plane home now.

Good morning Ian, I hope you're still with us.

Did you read that sulfasalazine was developed and used for many, many years (less commonly now) as an antibiotic? Now, doesn't that sound less scary than "Disease Modifying Anti-Rheumatic"?

You and I are the same age or thereabouts as I've just had my 53rd birthday. I spent twenty-five years working my ass off to climb the corporate pole and one day, in the middle of having to listening to what became a three hour rant on a conference call with a client about legislative processes in global motor vehicle taxing, licensing and insuring (about which none of us had any control whatsoever) I had a "WTF am I doing?" moment. This shortly led to deciding it was time to follow my dreams of working with animals in my own business. So I set about making that happen, getting qualified etc etc. I was unbelievably happy, I loved it, even though it was hard physical work 24/7/365. I was about three years in during the summer of 2011 when one toe on my left foot started hurting, and then the other foot, and my knees, and, and, and. I was diagnosed within six months and started treatment but my fabulous job and business became harder and harder as nothing was even coming close to stopping my PsA and the day came when I had to accept the inevitable and close my business down.

PsA was most definitely not in my life plan. Gosh, I remember those pre-biologic days when I was crying with the pain. And the frustration. And the struggle of not even being able to take a 'sick day'. Being 'retired' in my early 50's wasn't my plan either. Like Seenie, my 'job' now is as a volunteer for Ben's Friends. This isn't how I thought my life would look in 2016 but it's what I've got and I'm making the best of it because life, after all, isn't a dress rehersal. Funnily enough, I was only chatting about this earlier in the week, I think I like myself more these days too.

As I said in my first post, many of us here fall in the "minority" but for sure I will fight tooth and nail to keep this as small a club as possible. And that sometimes means tough love ... I hope that you understand this is what we're showing you. All the treatments have risks but so does life itself. If you give the ssz a try you'll soon find out whether your body likes it or not, how much wine and sunshine you can continue to enjoy. Give yourself the best chance of your life still turning out the way you planned.

Hi, Ian! Welcome! Starting with your original question with sulfasalazine I was allergic to it so I never took more than one dose. I am allergic to any penicillin meds even sulfa meds. I did take MTX but by the time I got full dose my body rejected it and even lowering dosage to levels I previously tolerated didn’t work. This counted as my two DMARDS and off I went to biologics first Enbrel and now currently Humira. Humira is doing good for me and though not perfect I am able to continue working my highly physical and stressful job.
As for the avoidance of doctors I get it, poster child of what you mentioned. The only time I have ever kept up on them was when I had cancer at 19 yrs and during pregnancies. Other than that no check ups nothing unless I was flat on my face. Unfortunately I had similar issues when I was 39yrs old with swollen finger and rib pain that would not go away. I couldn’t take a deep breath for months and being an industrial mechanic the finger pain started shooting up my arm making work hard. Then came the toe swelling and full hands, knee and ribs and chest were putting me to tears. The drugs were hard to comprehend how something that sounded so bad with SE that could be terrible were going to help but I was desperate so I took them. I was feeling so overwhelmed by doctor appointments suddenly I know exactly what you mean. The idea that I could have debilitating damage that can lead to a wheelchair scared me more.
I feel like the drug companies and doctors are doing a great job giving us the real facts and all the possible problems about taking these drugs. That said they sound worse than most of them are for people in general. I know that my ridiculous amount of time spent trying so many of them and seeing doctor after doctor has paid off in the long run. I have my job which supports my whole family and the peace of mind knowing so far the damage is minimal. I do have some feet damage and back damage but as aggressive as my PSA has been it could and would be worse had I given up.
I can’t and don’t have any place telling you what to do but I know how you feel and just wanted to share what I have learned from trying to not let my inhibitions stop me from doing what is best for me in the long run. Good luck and take care!

Hello again, firstly to say thank you for all your time and input, I appreciate it. The first few lines of Rachael’s post have refocussed me on why I put the original question on the forum.

Seenie’ s house insurance story is good. Would I risk not insuring my house? Of course not. But what happens if the cost of the insurance is so great that buying it impacts seriously on our lives? What if it is so expensive that the cost will stop you eating, running the car, providing the basics? What do you do then? Forgo it and take the risk?

You may say that this is a ludicrous argument as household insurance is cheap. But this is what most of us are doing in the UK with private health insurance, which is very expensive. We feel that the sacrifices required to have such insurance are so great, that we will take the risk of not having it, even though it can quite literally mean the difference between life and death in circumstances when the NHS cannot deliver.

That’s how I feel about taking the DMARDS.

I have learnt over the years that we all have feelings and emotions, and that those feelings and emotions are our reality. In trying to persuade people to act differently, telling them that those feelings and emotions are "incorrect" is completely futile. They are their reality.

My main emotion now is the fear that taking the DMARDS will turn my life upside down, with certainty and from tomorrow. Taking the pills will disgust me, I’ll loathe the testing, it will be disruptive and intrusive; the side effects will render me incapable of working, impacting on the business life I love; I’ll always be catching infections; I’ll get chicken pox; doing it all will bring the depression back; I’ll lose my livelihood, all that I have worked for and I’ll lose the house.

Measured against the fact that I have minor symptoms, most of which I have had for years, no joint damage and the DMARDS may not work anyway.

That is my reality, and no one will tell me that it is not my reality, not even by scaring me with what may happen if I do not comply.

My purpose on coming on the forum was to try and hook up with people who were on the drug, preferably in the early stages, to understand how it was for them, both the good and the bad. Doing this would give me an understanding of what is involved, and hopefully give me the opportunity to prepare for it, both mentally and at work.

I have no information about what to expect. For example, if I get nausea, what does that mean? A mild irritation, or incapacitated? How long? How bad?

I know there are no averages, but I think I have a right to know the range of possibilities.

At the last consultation I asked Rheumy about how many people get the side effects and he dismissively answered “everyone”, and closed my attempt to engage him on the matter by adding that “the benefits far outweigh the downsides” without being prepared to listen to what my perceived downsides are.

This is not good enough. I don't (and won’t) do things without understanding the possible range of what it might be like.

That is why I came on the forum. To try and find out.

Many thanks

Ian

P.S. I have been reading with empathy Darinfin’s posts on various threads. I think I am like Darinfin,I want to be treated as a person, not as a disease.

I think to be honest Ian you’ve made your decision! I can’t disagree with you - you have a great fear of taking this drug, you have virtually no symptoms and you don’t want your life to change… My sister is very similar - had psa for over 6 years before me and has only recently started on hydroxychloroquine - a very mild dmard. Her knee is shot and will need replacing and her hands are pretty damaged but apart from that she just got on with her extremely demanding job.

I on the other hand was diagnosed in November 2014 and it spread pretty quickly. I take mtx and humira which help some. I still drink (my liver test results are fab) and live my life to the fullest that I can (just walked a demanding golf course with clubs for the 5th day in a row!)

I’d really advise you to just hold off for now - denial is a big thing - every week I would tell myself I wasn’t taking my mtx injection, but then I always did … BUT every week it is my choice! I don’t take it because I’m told to, I take it because I know the pain I’ll be in without it. But as others have said it can progress quickly so be prepared to change your standpoint …

Ian, I hear you and you are absolutely right. You feel the way you feel, and your reality is yours and nobody else's. We just want to make sure that you understand the possible risks of not treating your disease. It's your absolutely your decision to make, but do make it with your eyes open!

I am really concerned about your rheumatologist's approach. Did he really say "everyone"? That's a very nifty way of bringing the consultation to an end so that he can move on and maybe go home early! This guy isn't doing his job the way I'd want him to do it with me! I, for one, trialled four DMARDS. I had zero side effects from them, and no appreciable improvement either. I guess, according to your rheum, I'm the only one on the planet like that. Somehow, I don't think so!

One thing that we also tell people here is to work actively towards finding a rheumatologist who with whom you feel comfortable, and whose office you leave thinking "yes, I understand what's going on and why s/he is recommending what s/he has". Now I know that achieving that is easier in some places than in others, can take a very long time, and is easier with some kinds of insurance coverage than others. I'm just saying, work actively towards that goal. In your case, I would be looking for a new rheumatologist before you need one urgently.

We've really gone OT from your original hopes for this thread. Our long-winded responses haven't really helped you get the information that you are looking for, have they? Why don't I start another thread and see what we can do for you. Maybe it will work, maybe it won't. Let's see.

Ian, if we could go back to my first discussions of Spring, 2014, I was saying pretty much what you're saying now. At that time, I had so many reasons not to get serious treatment, which I thought would be frequent, annoying doctor visits, frequent illness from germs I couldn't fight off or SEs from the biologic, being dependent on meds for my well-being, was I worth $3,600 in medicine every month--and even if so, how the heck would I pay for it??? I had all sorts of excuses. I was trying every natural "cure" known to man at the time and praying that somehow miraculously I'd feel better without any meds, but nothing was working. Thank God I found this website!

Some of us have a harder time accepting the fact that we may not be in full control anymore. I understand you. I've always been a take-charge, independent person who never asks for help from anyone. When my back went out and I was sort of helpless, I still did as much as I possibly could and let a lot of my housework pile up rather than ask my kids or husband to help with it. I feel like a complete loser if I sit and let someone else cater to me. I know already I will not be a happy camper in my old age when I can't take care of myself. I pray God takes me before I become helpless!

So, you aren't alone in your disappointment. I and I'm sure others here shed tears over this, but if you get a biologic that works, hopefully you will shed tears of joy for feeling so good!

Hi Golfnut, I have not made my decision at all, I am still seeking the information I need. And yes please Seenie, that would be a good idea. A very simple question, want is it like to be on Sulfasalazine, especially newbies. And Mtx too, in case I go that route. Nothing else!

Many thank

Ian

Many thanks grandma, I am really touched that everyone cares so much. Maybe I have mistaken, but I thought what you were saying is you had lots of progression before you started Meds.?

I am not thinking of doing that.

I am not there yet. I have two wonky toes, which have been like it as long as I (and my ex wife) can remember, and a more recent swollen finger. No back ache, tiredness, stiffness etc.!

Regards

Ian

Yes, Ian, I had too much progression.....diagnosed in 2008, I can't even remember what symptoms I had then--to me they were mild and my rheumy told me he thought my disease progression would continue to be slow. Slow it was, but progressively more pain and stiffness in more places. By 2014 I was in bad shape and felt pretty hopeless because I had pain and stiffness nearly everywhere--my skin even hurt and my body was very weak along with the fatigue. At the time, 2014, I was 60, I knew there was no way I'd live past 70--I would say all the symptoms made me so weary I didn't think my heart would hold out that many more years.

PsA is the pits....I'm so much better now, even though my feet are painful all the time, I still feel better than I did before Enbrel.

It's good you're getting information early on so hopefully you won't end up with permanent damage.

Ian3900 said:

Many thanks grandma, I am really touched that everyone cares so much. Maybe I have mistaken, but I thought what you were saying is you had lots of progression before you started Meds.?

I am not thinking of doing that.

I am not there yet. I have two wonky toes, which have been like it as long as I (and my ex wife) can remember, and a more recent swollen finger. No back ache, tiredness, stiffness etc.!

Regards

Ian

Hi Ian I'll tell you about my side-effects from sulfasalazine.

You start with one 500mg pill a day for a week. I took all the advice about drinking about 500ml/1 pint of water with it and I was absolutely fine. Week two I went up to 500mg twice a day, drank the same amount of water with each pill and was absolutely fine. No nausea, no headache no orange pee.

Week three up to 1,500mg kept my water intake going, had a slightly grumbly tummy with acid indigestion particularly after a heavy evening meal. No orange pee. Week four, two days in, I had full blown acid reflux and couldn't lie down flat and it caused me breathing problems ... I then went on to develop erethyma nodosum on both lower legs, oedema and nodules in my lower legs and the backs of my thighs. My reaction was extreme and uncommon and it was latterly determined that I had an intolerance to sulphonamide drugs so my reactions were the exception not the rule. It all resolved once I stopped taking the ssz, the acid reflux within a few days or week/10 days at the most and the erethyma nodosum several weeks and the nodules several months. There have been no long term complications.

Of the DMARDS I have also taken methotrexate ... that was four days of nausea (lack of appetite and just a sicky feeling) and crippling fatigue after each weekly dose. I stuck with it and the side-effects improved but stopped taking it due to inefficacy. I took leflunomide the longest, it worked a treat with no side effects for a long time and only when it began to wane and the dose increased that I had some side effects, mainly bruising, itching and some nerve issues in my forearms. Again all resolved on stopping with no long term complications.

You will find your own way with this that you're happy with.

I honestly had no side effects whatsoever from Sulfasalazine. Orange pee I suppose, though that's more an oddity than a side effect, but not very orange. I think I took the full whack, can't remember the exact dose. Back then I was a newbie.

I've been lucky with Mtx too, no side effects that I've ever been aware of. It did cause my liver enzymes to rise for quite a while but as I seem to need Mtx I had a liver scan to see if it was safe to continue. The scan showed that my liver is fine despite a life time of drinking too much followed by nearly 3 years of Mtx. And as it happens my liver enzymes have returned to normal anyway.

I'm not immune to side effects .... I did not like Leflunomide one bit.

Like Seenie, I think your rheumy's 'everyone' comment was unhelpful and inaccurate.