Effects and success of Sulfasalazine

Many thanks Jules and Sybil, this sort of reply is very useful to me. And thank you to Seenie for starting the new thread.

I have done two positives today. I have made the next appointment with the Rheumy, to review the X rays which due to appointment issues were taken after the ultrasound that showed no bone damage. They will either confirm, or otherwise. I booked a double appointment with his office and told them I want a proper discussion - I am seeing him privately - and will be E-mailing a list of questions in advance. Got to wait a few week, but that is probably a good thing in terms of getting my head straight.

I've also started the process of changing my gp. The l surgery are a complete nightmare; most of the appointments are phone up on the day and they won't book more than a week ahead. So usual scenario is that all bookable appointments for the week are taken, they won't book for more than a week in advance and you just have to take a day off work and phone up on spec. That would clearly compound the stress and inconvenience of the monitoring many times, so best to get that out of the equation.

I've been talking to someone more accommodating. Hopefully they will accept me, picking up the forms tomorrow.

My next goal when I got back from my Spanish escape last Saturday night was to get through two works of effective and enjoyable work with no more meltdowns or time off. I am nearly half way there!

Ian

Ian, what I see is that you are putting yourself in a position to take control. THAT is the answer. There's a huge difference between saying "I won't take this drug, that's it, I'm just carrying on ..." and saying "I'm going to put myself in the best position that I can, while the going is still pretty good, to get the best support that I can get in order to make the best decisions that I can make." That's being proactive, and whether it's business or dealing with a medical condition, that is the way to go.

Great move, trying to get a more accommodating GP. And I have the feeling that if, after your double appointment with the rheumatologist, you don't feel that he will work with you to achieve what you want to achieve, you'll be looking for a new rheumatologist as well. Might I suggest that you consider getting yourself a rheumatologist specialized in PsA at one of your Centres of Excellence? JulesG or Sybil can fill you in on how that works. You are entitled to choose wherever you want to go, and in the UK you have some world class experts on PsA. Realize that this disease is a quirky, slippery fish and some rheumatologists don't have much of a clue about it. (I hate to say that, but it is true. Treating PsA like its sibling, RA, can work, but some of us have found that having a specialist rheumatologist can make all the difference.)

It will be interesting to see how your rheumatologist responds to you when you come there for the "full and frank discussion". I'm sure you will have done your homework. Have you downloaded that book which I recommended? At the stage that you are now, reading that is probably the best thing that you can do for yourself.

Great stuff Ian! Looking forward to hearing how things go.

Thanks Seenie, the book is on order. I do paper! I would be interested to hear about the Centre's of Excellence, I was googling last night and didn't get too far. Regards Ian

Seenie said:

Ian, what I see is that you are putting yourself in a position to take control. THAT is the answer. There's a huge difference between saying "I won't take this drug, that's it, I'm just carrying on ..." and saying "I'm going to put myself in the best position that I can, while the going is still pretty good, to get the best support that I can get in order to make the best decisions that I can make." That's being proactive, and whether it's business or dealing with a medical condition, that is the way to go.

Great move, trying to get a more accommodating GP. And I have the feeling that if, after your double appointment with the rheumatologist, you don't feel that he will work with you to achieve what you want to achieve, you'll be looking for a new rheumatologist as well. Might I suggest that you consider getting yourself a rheumatologist specialized in PsA at one of your Centres of Excellence? JulesG or Sybil can fill you in on how that works. You are entitled to choose wherever you want to go, and in the UK you have some world class experts on PsA. Realize that this disease is a quirky, slippery fish and some rheumatologists don't have much of a clue about it. (I hate to say that, but it is true. Treating PsA like its sibling, RA, can work, but some of us have found that having a specialist rheumatologist can make all the difference.)

It will be interesting to see how your rheumatologist responds to you when you come there for the "full and frank discussion". I'm sure you will have done your homework. Have you downloaded that book which I recommended? At the stage that you are now, reading that is probably the best thing that you can do for yourself.

Ian those two centres of excellence are Royal National Hospital for Rheumatic Diseases, Bath and Chapel Allerton Hospital in Leeds. I'm 99% sure that Chapel Allerton is the centre of excellence in Leeds anyway, for some reason I always hesitate on that one but I'm sure someone will put me straight if necessary.

Hi Ian, that sounds like you're getting a good plan together. I think you will find the book very helpful.

My GP practice works on pretty much the same basis but for the monthly blood tests they are done by the nurses and, thankfully, their appointments can be booked well in advance. So each time I visit the vampires I book my next appointment on the way out. My GP rings is there is a problem when he checks the results. But nevertheless we all need doctors who are accessible. Hope you are able to change to a practice you can 'click' with.

If you have any questions about Bath then give me a shout.

This medicine game me palpitations and I had to stop it. Now on Arava and Enbrel which seemed to be working for about two months and now I have been getting lots of pain I lower back, hips and sometimes ankles. I have to go back to rheumatologist

I know you asked also about mtx - I have been on this for 15 months! Tablets not great but injections had headaches for 3 months which then went - no other side effects apart from tiredness the day after injection - even this has faded with time. Average results though

Thank you for everyone for trying to help me with his. Last week I was edging myself towards a position of contemplating doing the DMARDS. Then of course my mind gets hold of what it really thinks of this, and by Friday evening I am in a major depression attack once again through the night, OK on Saturday morning and same again Saturday night to the early hours of Sunday morning.

Remember, I have not had depression in 20 years.

I am not prepared to go through this debilitating cycle any more, or expect those around me to do so. The truth is I have a deep-seated, unshakeable and visceral repulsion and abhorrence of these drugs and what they do to the body. With a passion I do not want them. What I have realised over the weekend is that the mental battle will not stop with deciding to take the drugs, indeed with Sulfasalazine the revulsion will continue twice a day every day when I have to take them and every time I visit the bathroom and am reminded off their presence.

I am reverting to the plan from the last crisis - forget about the Dmards for now, enjoy my much longed for summer and maybe revisit in the Autumn.

Ultimately trying to resolve a fear by trying to outbid it by another one does not work. I am sure that it is somebody's "principle" that by trying to hard to avoid something you can end up bringing about exactly what you are trying to avoid. In blunt terms by trying to avoid the possibility that PsA could wreck my life in the near future I am in danger of escalating that wrecking to the present and to probability.

I am not doing that.

I have been fine today, gardening and exercise and sunshine and fresh air have done their work.

Many thanks for all you help - and especially Seenie with all her help.

Ian

Something I get from your posts is that you feel as if you've been backed into a corner on this issue. However the truth is that nobody can make you take these drugs, it's your choice now & it always was.

I wonder whether the sense of your future being in other peoples' hands has been the most difficult pill of all to swallow. Perhaps making the decision you've made will restore your sense of self and perhaps even equip you to reconsider with less inner turmoil in the future.

Anyway, I wish you well.

Mentally there is no inner turmoil, I am absolutely clear that I do not want to take these vile drugs. The emotional turmoil is coming from those, in particular myself, who are trying to use fear to make me do so against my will. That's it. I am back off work.

I have done the homework. I have read the book, listened to the lecture and followed the link to the NCBI paper, all linked from the newbies section. Each learned source states that there is no medical proof that DMARDS slow joint damage in PSA.

Dr Kaul in his lecture states that he "sometimes wonders" why DMARDS are prescribed for PSA.

Is this correct?

If so where it leaves me is:

  • The swelling and any discomfort I have is of nuisance value only;
  • My only concern is hence stopping joint damage (which I currently don't have);
  • I am being told that it is imperative that I take DMARDS to stop possible joint damage;
  • These drugs will have a major negative impact on my business life, social life and wellbeing;
  • The "experts" say they don't stop joint damage.

Does this mean there is no point taking them and that it is disruption and distress for something that does not work?

(I understand the argument that failing the DMARDS now might accelerate getting on to the biologics later if I ever need them, but that's a bit like selling my car now in case my eyesight gets worse and I can't drive it.)

Or am I missing something?

Ian

The current NHS NICE guidelines require that you have tried, and failed (either through side effects or inefficacy), two DMARDS in order to be considered eligible for biologic therapy. It's likely that another layer of treatment may be added between the two shortly in the form of Otezla (apremilast). We are PsA sufferers in an imperfect system here, Ian, and there is no magical shortcut to a biologic at any point that you show joint damage. Even if you had a bottomless pot of money to pay for a biologic my understanding is that it's impossible to access them privately because of the monitoring required. This all being the situation; the 'point of taking them' is to start your journey on this road and, hopefully, get symptomatic relief too.

My experience, as someone who has travelled this road for five years, even the worst of the DMARDS has had a whole lot less of a negative impact on my life compared with the impact of PsA.

Ian, something else that was on my mind: I know you said you are reluctant to take any drugs but, playing devils advocate here, is alcohol not a drug?

Ian, you’ve done the homework and you’ve seen it exactly right in factual terms. There is a great deal of doubt about the efficacy of the DMARDs, and more and more evidence is accumulating that the most effective (and least disruptive) therapies are th biolgics. However, that said, many people do get symptomatic relief from them. I lost both my hips and sustained irreparable damage to my feet while I was on DMARDs. The only good the DMARDs did me, essentially, was that, having failed them, I qualified for a biologic.



Qualifying for a biologic may not seem like a big deal while your disease is at a low ebb, but that can change, literally, overnight. You will, no doubt, have noticed Gladman and Chandran’s assertion that early and aggressive treatment gives the best prognosis. If you delve deeper, it appears that “early” is about six months from onset. That is about the time it takes to do two DMARD trials.



The disruption that a DMARD trial causes is highly variable. I was on them for over a year with absolutely no noticeable problems. Nothing. Others, as you can see from the Sulfasalazine thread, were miserable. But those who experienced intolerable or disruptive effects quit the drug PDQ.



And as Jules says, don’t underestimate the disruption that PsA can create in your life. And now you are thinking “That Seenie is just trying to scare me into doing this.” In a way I am. I, like many others here, have experienced a totally debilitating “flare”. None of us would wish that on anybody for six hours, let alone six months.



Summary of my advice: get yourself a really specialized, smart and sympathetic rheumatologist. This may take months or even years to accomplish. Try two DMARDs at your convenience. If you find them intolerable, quit and consider them failed. If they work, cool. File that information. You will then be in the strongest position should PsA ever return with a vengeance. Then hope it never does.

Hi, I am still really confused. So the DMARDS don't do what they are prescribed to achieve - i.e. prevent joint damage. Seenie says they may provide "symptomatic relief". What does that mean? Reduce the inflammation? But I thought it was the inflammation that damaged the joints?

My whole problem from the start of this has been lack of information (and it was seeking information that brought me on here).

I still don't know

  • what the chances are that the low level symptoms that I have had for many years will develop into full blown PSA (because only a meaningful risk makes the "do the DMARDS now to get on biologics later" argument valid),
  • how effective the DMARDS are
  • what the incidence rate of the side effects is and their potential impact on my life. (What does "nausea is a common side effect" mean).
  • what will happen if I don't take the DMARDS

I also don't understand what "failing the DMARDs" means. I have one swollen finger, and two dodgy toes that have been like it for years. So, if I don't get side effects, what is success and what is failure in terms of effectiveness?

It is in my nature that I make decisions and take actions on the basis of evidence and facts, not based on fear and threat. If people try and threaten and scare me, well, I start resisting and sometimes instinctively do the opposite.

I know that there is no "typical", but I don't think its unreasonable to ask for statements like "If you don't take the DMARDs there is 50% chance you will have major joint damage and pain within five years. Three quarters of people who take the drug X need time off work. Most see some reduction in pain after two months " (or whatever)

I can base a rational decision on that sort of information, I can plan for it, both at work and mentally, and I can also use it as motivation to keep going if the side effects are difficult.

Getting that information is the purpose of my extended appointment with Rheumy next week. And if I don't get it, then I suspect that it will be the end of the process for now.

Ian3900- You said,

I know that there is no "typical", but I don't think its unreasonable to ask for statements like "If you don't take the DMARDs there is 50% chance you will have major joint damage and pain within five years. Three quarters of people who take the drug X need time off work. Most see some reduction in pain after two months " (or whatever)

I can base a rational decision on that sort of information, I can plan for it, both at work and mentally, and I can also use it as motivation to keep going if the side effects are difficult.

I've tried asking my doctor to make all sorts of predictions on what to expect. I've never gotten an answer because there really is no way to predict. When I was diagnosed it was on the basis of one finger and one spot of psoriasis. Since then, almost 9 years now, the spot of psoriasis hasn't changed, but the joint involvement has massively. And there's damage. With treatment. Over time I will likely have many surgeries to make repairs. I asked my doctor about this too. She told me that yes, there will be repairs needed over time. That said, even though there is no easy way to make predictions, time and greater knowledge has made me more comfortable with what to expect, and that my treatment decisions are the right ones.

Thank you Stoney and I am sorry to hear that it has been bad for you. Of course I realise that nobody can give me an individual prognosis of what will happen. But surely the medical profession should know what ratio of people diagnosed with early stage PsA go on to develop life changing disease. That is a pretty basic question. I've no idea if it is one in twenty or nineteen in twenty, and that is important to me.

Regards

Ian

The thing is we're not medically trained people, just patients with psoriatic arthritis who are willing to share our experience. A lot of people here have shared their experience, as well as what knowledge we do have, with you. Before starting treatment I trawled forums and other sources of information and gleaned what I could from that.

Perhaps it was easier for me to make the decision to start treatment seeing as I felt like death warmed up. There was no way I could continue like that. However, the experience I'm sharing now is that when that first, long, dire flare-up hit me, I looked back and the undiagnosed symptoms I'd had for years started to fall into place. I'd say they became gradually more debilitating systemically - all of me was affected in addition to the increasingly severe joint stiffness and pain and the disabling effects of that. I don't think you've mentioned how you feel 'in yourself'. Are you aware of intermittent or creeping fatigue, feeling very much 'under par' at times, any chills or fevers etc.? If not, that's great but if you decide not to start treatment then it might be as well to keep awareness of those warning signs at the back of your mind.

When Seenie mentions 'symptomatic relief' I'd imagine she's referring to these other PsA symptoms and indeed to the joint pain and stiffness that often dogs many of us. There's also a little something called enthesitis - inflammation of the points at which tendons join bone - which can be very painful. DMARDs can provide varying degrees of relief for these symptoms. Myself, I found that Mtx (my first DMARD) eased up my extremely stiff knees to the point at which I could walk again and also allowed me to use my left arm which had pretty much seized up. And the effect built up over time until I was actually walking normally & quite happily. By the time I started biologics, 2 years after diagnosis, I felt like a relatively healthy and active person again. It took me that long to find a good rheumatologist and the folk here supported me in that. He immediately said that I'd need biologics - and this addresses your point directly I think - because the continued swelling put me at ongoing risk of (more) joint damage. So what DMARDs did for me: they provided very good symptomatic relief but didn't control the disease sufficiently to prevent joint damage.

Inflammation is an extremely complex subject. One of our most knowledgeable members once compared PsA inflammation to a forest fire .... there is nothing wrong with putting out a few flames with NSAIDs such as Naproxen or even perhaps with complementary remedies such as turmeric. And it would seem to be likely, though it does depend on the individual, that DMARDs put out quite a few more. However the research suggests that biologics are the treatment that really does the best fire-fighting job for us. It is extremely frustrating that there isn't some really categorical research, widely accepted by all rheumatologists and disseminated to patients, about the efficacy of DMARDs in controlling the basic disease process. I've been looking at the Gladman & Chandran books again and even they hedge their bets somewhat, though they do indeed cast doubt on how far DMARDs can limit radiographic progression, i.e. discernible joint damage.

I'll 'fess up ... though I think I have done already, if I had the symptoms you have and if, IF, I felt fighting fit overall, I too might hesitate to start DMARDs. I'd take responsibility for that decision, knowing that it did carry risks, not least of which is the delay it would incur in starting biologic therapy (given our stupid system) were my disease to become more severe. I'd watch myself, my health, carefully while getting on with my life and I'd aim to find a rheumatologist who would agree to monitor me, they may exist! Nobody here is trying to threaten or scare you, we're just tying our very hardest to share everything we do know with a fellow patient. I hope you get some good information from your rheumy, let us know what happens.

Many thanks Sybil that is really useful and very much appreciated that you have taken the time and effort on it. In "myself" I was fine before the 21st March (diagnosis); since I have been very stressed with lots of sleepless nights, but now getting back on track. What I have had for many years is random pains in the underneath of my feet, which I am now realising could be the enthesitis that you mention. I'll talk to Rheumy about it.

Your last paragraph is in truth the preferred option that I had already arrived at (and beautifully expressed). I'll know after the consultation next week if Rheumy is right for me. He was a bit dismissive of my concerns last time, but maybe I was shooting the messenger. He is an eminent man, it just comes down to whether he will listen and talk. Its a half hour private appointment so I have a good chance of making it work.

To end on a positive note I had a bit of a light bulb moment earlier in the week - whilst walking to the station for the train to London! Reflecting on some of the stories on here I suddenly realised that I am lucky to have been diagnosed. That's a very different view to that I had a few weeks earlier when I was wishing I had never been near Rheumy.

Best Regards

Ian