So,briefly my life has been a disaster zone,years of depression,alcohol abuse,death of my son,broken relationships,two heart attacks,oh and i lost everything through being uninsured and an earthquake struck and destroyed my home.
im not after sympathy,just establishing that things have been quite the struggle,ive fought my way out of these situations,i work hard,use my body,my energy/brains and humour have been my allies through these difficult times.I hatched a plan to move too a beautiful part of New Zealand and really enjoy my fifties and onwards,i felt i ādeservedā it.
And bam! once i get here a massive flare,and PsA arrives in my life.
4 months on and here i am im on 15 mgs of prednisone and sulphasalazine.
Its been good for a monthā¦at least pain wise,emotionally the drugs/the situation have wreaked havoc with me.Tears outa nowhere,rage,and a completely overwhealming feeling of being trapped.Im alone,work alone,live aloneā¦thereās nobody to talk to really and those few who i do chat online with or talk on the phone too just donāt get it.in fact they run a mile.
man i feel RIPPED OFF!!!
Like i said good for a month,i was on 20mgs then tho,as i tapper off the prednisone,the pain is returning.
so whats the future for me?did the flare even stop?or was it just masked by the P?
If it comes back like it was im history,canāt even walk let alone work,have nothing behind me financially.Im really struggling with stopping alcohol and smoking,i get a few days in,then i just blow and go hardout again.
I cannot imagine ever getting on top of this one,im a wreak.I just feel like smashing something at the moā¦a chair,plateā¦punch the wall.
after all thats happened in my life,my one advantage, my physical me,has become the chain around my neck,i fear it will pull me underā¦
Good morning and welcome!
I donāt know what to say about the facts of your life except that I get that youāre not after sympathy, but rather laying it all out there 'cos it is part of who you are and where youāve come from. And yes, you so deserved to enjoy life in your new home. Oh my. But like I say I wonāt comment on your life 'cos Iāll sound patronising or Iāll be in tears or Iāll sound flippant. I sometimes think the more I understand, the clumsier and stupider I sound.
So. I will say that a PsA flare the size of a truck hit me when I took a yearās sabbatical from work. Unable to walk, left arm āwentā too, for a while so one working limb remained. Unable to stay awake for more than a few hours. Totally lost interest in life. That was back in 2012 and Iāve never had anything like that happen since. These days my PsA is pretty well-controlled and Iāve definitely got my life back. That can and does happen to quite a few of us. The chances are that you will be able to find your way back from where you are now. Whatās the treatment plan longer term?
So glad youāve joined us and I hope you stick with us.
good evening and thank you for your reply,
ive read quite a few of your posts,your a good writerā¦expressive and honest.
i hope i improve as you did.
no treatment plan long term,early days yet i guessā¦not sure hoe good my doc is.only had one meet.will keep an eye on him
Gosh. I know youāre not after sympathy but please give yourself a hug. As frankly you deserve one and sometimes itās just what you need too.
It seems to me that rather like me youāre at the beginning of being treated for PsA, so the good news that there is a plethora of different drugs and combinations of them that many on here (but not me yet) have been on and for many of them, they got their life back and feel far more back on track. So please have hope. However it does seem one also needs lots of stamina and far too much patience along the way, so you need to remember that. Some you canāt drink alcohol with which might āhelpā you depending on where you are with that.
And I so āgetā your feelings of anger, horror, tears, desperation and the rest that you have this disease too. Truly.
So since youāve been helped by prednisone at least you know you can get some relief whilst other medications take their time to work and it seems most of them take weeks to work usually 8 to 12 weeks or longer. So go back to your doctor and ask him to get the balance better for you capacity wise whilst waiting to see how the sulfalzine works. Iāve been on low dose prednisone for months at a time, itās not ideal but my doctor agrees this far. Get a plan together with your doctor so you know better what comes next. At least it makes you feel like youāre doing something and that helps.
And try if you feel able to, to reach out to the many, many organisations and people that can help you navigate your way through all the emotional stuff. Perhaps start small with things like CBT which just gives you some tools to help when it all feels so grossly overwhelming. That might help you get some confidence back and give you breathing space. Again talk to your primary care doctor about that. I donāt know how it works in New Zealand but Iām sure that sort of help is available.
I do hope this helps.
Random, Iām glad that you found us, but Iām so sorry to hear that youāre in the terrible shape that you are. You need support, and we are glad to be able to be here for you. Of course you arenāt looking for sympathy, much less advice, but please know that you are heard. And I second Pooās hugs suggestion. Big, gentle hugs.
Sybil is a great writer, and a very understanding person, as are a great many of our members. (Sybil though, has a way of saying things that are so ā¦ so ā¦ SYBIL!) Please know that some of us have been right where you are now: in a fog of pain, shock and depression, not seeing a way out. Ever. With good medical advice and some determination on your part (itās there, I know it is, even though you sound pretty down right now) things can change, very much for the better. My story is very similar to Sybilās.
One of the worst parts of having PsA for me is the fatigue and (oh lordy!) the depression. When your disease is finally under control, Iām guessing that those things will be much much better. Unfortunately, it can take a good long time to get to the āunder controlā point. In the meantime, donāt hesitate to reach out to your doctors for help with the depression and your struggle with kicking your habits. Those two things may also be connected, and doctors can help with both.
So make yourself at home here, Random. Have you found our āNewbiesā Guideā yet? If nothing else, reading that material may make you feel less alone. Because you arenāt alone. Youāve got us now.
All the best and a big cyberhug to you down under.
Seenie, Iām sure a hug down under is enough to cheer most people up!!!
My filthy mind aside, Random, itās worth mentioning that, at some point, as with all things in life, you suddenly get to grips with the idea of the ānew normalā and life continues - not as it was, but you eventually stop being so pissed at the situation and start dealing with it on a day to day basis insteadā¦as Iām sure you have with all the other things life has thrown at you. Everyone here has a different story to tell with PsA - none of us have the same symptoms as each other, or the same reactions to drugs, or the same progression of the disease. I would suggest, though, that if the sulfasalazine donāt appear to be working after four months then itās worth going back to the doc and having a chat and seeing if it is time to try something else. My own experience is that the pain comes back quite quick after the steroids start being tapered down - but that might not be the same for you. But the sulfa should at least be reducing some of that by now, I would think. So, this isnāt as good as it gets. Itās just a case of trying to be patient until you find the right meds for you. in the meantime, smashing plates never did anyone any harm - except the problem is that we canāt bend down to pick the bloody pieces up!
ive only been on the sulfa for a month darin,so prob early for that to be working?i dont know really,certainly the return of some discomfort seems to co-incide with tapering off the prednisone,nowhere near the level i was at 4 months ago thats for sure.Just sobering to realise that its still going on in the background,and that were it not for the prednisone i would likely have been in quite the state for the past month as well,the break from the pain s has been great,although as i say the drugs seem to wreak havoc with me emotionally.i revealed my past problems with depression too the rheumy and im alittle annoyed he didnāt spend a bit more time explaining the possible side effects to me.he simply handed me a sheet with side effects listed,i found the mood swings are severe,although i only have myself to blame re the alcohol ive been consuming,i know it hasnāt helped in the long run.Anyway follks thanks for the input,im on the learning curve for sure,this site seems to have many answers,and its outstanding to have some where i can be heard by understanding ears.does help,so thanks
Welcome 
itās Okey to be angry! Especially if youāve been through all that! Do the smashing things thoughā¦ and not the hitting people!
Alcohol helps with painā¦ on top of what youāve already found in it beforeā¦ so I can imagine itās damn close to impossible to not drink on your ownā¦
Get some helpā¦ not because your weak, your so incredibly strong coping with all that for so long! But because even the strongest person has a point where itās too muchā¦ itās OK to ask for helpā¦ You went to a reumathologist with your physical painā¦ go to a psychologist for your mental painā¦
(Iām not saying go because I said soā¦ Iām saying itās ok to not be able to cope on your ownā¦)
I had to come off the sulfasalazine for various reasons and then, at the next appt, was simply handed a prescription of luflunomide - despite the fact I was still suffering from the sulfasalazine issues. I didnāt cash in the prescription and took nothing for the next six months - cancelling all hospital and doctor appts. I have bipolar and couldnāt cope with either the illness or the thought of endless blood tests etc. In the end, I wrote a (very) long letter to the consultant, saying that there was no point in sorting out my knees if I was going to land up in a loony bin (or words to that effect). A month or so later we had a long talk, and actually discussed between us the next move - which, in my case, was hydroxychloroquine. That worked for a year or so, but has started failing now, and so start MTX probably next week. But that year on hydroxyā¦ at least gave me time to sort my head out a bit, not have to be bothered with endless blood tests, reduce the pain from the arthritis, get over to some degree the bipolar flare up, and just come to terms with where my life was headed now. Itās essential you make sure there is more to you than just painful joints. They have to treat us whole human beings and not as if one part of us doesnāt affect another.
Darinfan ā¦ was eating soup as I read this and my screen is splattered with lentils. You know very well what I meant. 
Random, I said that will all good intentions. Really I did.
Seenie
Lentils? Is that what they call them these days! 
Yes, random, itās going on in the background, and sorry to say that a month is probably not long enough for sulfasalazine (SSZ) to show a noticeable improvement. But one day you go to do something and youāll suddenly say āWait ā¦ I havenāt been able to do that for a long time!ā and youāll know that you are moving forward. Sudden and dramatic improvement rarely happens in this business.
Most rheumies, unfortunately, arenāt very good at dealing with the emotional effects of the disease or the drugs, and you canāt fault them for that. Itās not their department. But wouldnāt it be nice if you could find one that would! The thing is, this disease crosses over to several specialties: orthopedics, dermatology, and psychiatry. Iām sure there are others. So far, Iāve got an orthopedic surgeon, a rheumatologist, a rheumatology researcher, and a psychiatrist. My skin has never been much of an issue, but it is starting to act up, so Iām on the list now hoping to get a dermatologist one of these days. Thereās nothing like having good help!
Cynthia is so right:
> Get some helpā¦ not because your weak, your so incredibly strong coping with all that for so long!
Absolutely. And the fact that you are depressed and struggling is no surprise. Hereās an article that may make you feel a bit better. This disease not only creates bloody havoc for our joints and tendons, but for our brains. As my psychiatrist said when I finally went to see him, āyouāve come by your depression very honestlyā. Of all the things he could have said to me, implying that it wasnāt my fault, or my weakness that made me depressed, was probably the most helpful thing that he said. The most helpful thing that he did was prescribe an antidepressant for the depression that my GP had failed to address or treat effectively for a decade. My brain was finally working better than it had for many years. It makes me angry when I think of it: why didnāt I ask to see the psychiatrist long before? (The answer to that question is a long story for another day.)
The fact that you are here, telling your story in a coherent way, is proof that you are strong and smart. And a good thing too: this disease challenges both our bodies and our minds. You deserve to get help for your depression and your substance issues (which are very much connected). I hope that your GP will help you find that.
Hang in there, random!
The problem isnāt that the rheumys arenāt good at dealing with the emotional requirements of arthritis sufferers such as ourselves, but that the āmental healthā arm of the NHS isnāt either. How useful it would be if, when diagnosed, there was someone designated to us that we could talk to about or worries and fears about the illness, and to help us to understand and come to terms with the changes that are about to take place in our lives even if medication does work well. We know from this forum just how much concern there is amongst us when we start taking new meds as well. But the support isnāt there to help those that struggle with such things through the coming weeks. And, alas, it is never going to happen. I was referred for counselling last October for my bipolar (so primarily a mental health condition) and Iām still waiting - and have been told I will be lucky to see someone by the end of the yearā¦unless I try to kill myself, and then I would be seen quicker. You have to laugh at the absurdities or youād cry!
So true Darinfan. Itās become sometimes an idiotically unjoined up manner of treating people. Even though in the 1960ās and 1970ās it seemed the medics wanted us all addicted to Ativan and Valium. It seemed though to me they were thinking about the whole person. Not well at all, but at least thinking.
Today given such huge medical advances since, weāre now treated in silos. The scientist says Iāve found a way to truly manipulate your DNA, but my medication is crap on other physical things and/or even just mental and emotional things, but not to worry as if your DNA gets manipulated this way, you wonāt suffer this. We however might be a basket case from side effects anyway. Unable to enjoy that manipulation of our DNA and whatever so unable to enjoy we donāt suffer from the first issue anymore. Zilch point in that for me or I guess for any of us. And even more interesting that sort of effect isnāt ever yet measured either. Coherently or at all.
My next medication is Sulfalazine. Big worries about vomiting or worse still dry heaving (donāt ask why, but itās infintely worse for me). So I chatted to my GP. Incidentally in the last year and half (since I got this diagnosis) I havenāt spoken to the same GP twice in a row. Iām not allowed to see them as in meet with them face to face unless they deem it necessary in the call back phone call. Which they never have. So ostensibly I donāt have a primary care physician here, I just have me, making decisions about what next is best when or even not when Iām able. My GPās surgery has been rated outstanding obviously given its client base (as weāre not worthy of being called patients anymore) have said. But certainly I donāt feel like my GP or his or her surgery (since Iāve no idea if Iāve actually got a person who is my GP, anymore ) cares about me, or when asked even thinks to worry about it. So it just me who decides far too many issues about my medical care when Iām not a qualified doctor at all. Scary? Most certainly.
Anyway Bath doesnāt like prescribing medications to help you tolerate side effects. It would prefer you just either tolerated them or didnāt on your own. Rationally I donāt have a problem with that. It certainly makes sense to me. But not if I vomit or worse still dry heave. So Bathās letter to my GP sent and received a week ago by me but still not yet loaded up into my GPās records (it takes 3 weeks for that to happen) said you might want to prescribe anti-emetics. I thought that was sensible as the fear of all phobias is normally worse. So I asked ānumber 29 GPā by phone to prescribe them. She did, despite not being able to access the letter Bath sent to her practice. So I got them yesterday and was horrified at their potential side effects. Its first side effect was ending up being like someone with Tourettes but probably without the swear words. No alcohol was permitted as that could make the supposed Tourettes issue worse and anyway youāll be zombified with sedation whatever.
The anti-emteticās most probably side effects were worse than Sulfalazine. I was so insensed I did that waking up at 3am thing needing the loo and then just unable to go back to sleep. Then just having incessant and ranting imaginary conversations with just about every medic presently charged to treat me.
I do have a serious phobia of throwing up. It descends me into something approaching post traumatic stress disorder. But itās a phobia, so by definition far bigger in my imagination than its actuality. Thatās me now being all ratonal and sensible. Now. Sadly Iām not like that when my head instead of my bum is facing the toilet. But I need a mild, pedestrian probably very placebo like anti-emetic. A silly tablet which will make my anxiety decrease or persuade me my anxiety ought to decrease. So letās try that one first? Maybe?
Bath is very aware that if I throw up once or worse still dry heave, Sulfalazine is over. It doesnāt thankfully appear to care much about that at all. Itās made it perfectly clear that itās loving my intelligence and that consequent ability to analyse but ā¦it couldnāt and doesnāt have the wherewithall to do much else or care about much else.
So you can imagine that most probably means Iāll throw all tablets both Sulfalazine and its anti-emetics in the bin where it gets incinerated and just march on.
However today a groin ligament inflammed. Iāve had a rough week emotionally as this day last week I had put my very gorgeous almost 16 year old cat to sleep. He went all of a sudden into significant heart failure. He died purring in my arms very gorgeously. I miss him horribly and of course Iām emotionally compromised.That for me was and still is significantly a ātough oneāā.
But now Iām hobbling rather awfully no doubt simply brought on by the stress of my week. Despite lots of steroids. My previous experience denotes itās at least three months before a completely new inflammation recedes. However much steroids I increase to. Thank you not god or whoever is in charge as itās not me, not my GP or even Bath. I feel utterly at sea. Thankfully not emotionally - thatās just about passed - but wholly at sea without anyone a proper medic to just hear me, have an ability to want to find out where Iām coming from and just āenable meā or even just ācarry me, wartā and allā to the next stage.
Poo is all senses of the word. x
Poo, I confess that I had Sulfasalazine and it didnāt like me. BUT I had no gastric problems with them at all. No feeling sick, groggy, or diarrhea of any shape. Only thing I got was orange wee. So Iāll keep fingers crossed that the same applies to you. I did work up the dose very slowly, though - so itās worth trying to do the same.
Sorry to hear about your cat and the other things youāve had going on - not helped by your GP by the sound of it. Poo, indeed 
I think itās worse when you know itās sillyā¦ because then you feel stupid on top of being scaredā¦
Itās impossible for me to throw up directly into a toiletā¦ Iāve never been able to do thatā¦ I can sit next to a toilet feeling horrible for hoursā¦ I wish I could give you my superpower 
if you can handle all the spiders that get too close for me!
How weird that you never see an actual doctor! Itās almost impossible for me to get anything done over the phoneā¦ even meds for yeast infections, I have to go in and get a prescriptionā¦ when she doesnāt even look! (Which is a good thing 
)
apparently i am a rock,or at least rock like in my structure.At 5 mgs pred and with sulpha full dose im reasonably stable.The emotional things have settled and im happy at the moment.Ive decided that i have no intention of stopping alcohol at this point,or doing yoga,or becoming a vegan.Still the pains are there in the background,low level,fluctuating,i can function allright.I wonder acctually if this is normal for me?I have difficulty remembering what things were like pre-flare up.There were certainly plenty of pains going on at different times but i just carried on and paid them no heed.i stop the pred next month so i guess that will be the test.after that i will have a crack on my own.ive read all the info i can absorb about this,and the site has been a great help in that regard.so thanks for that.I just cant handle the drug/medical/lifestyle regimeā¦i suppose a return to the crippled state would change my mind but im prepared to give it a shot.One life and all that
Take careā¦
Hey Jeff
Good to hear from you. āReasonably stableā is a good place to be, I think! Why would you rock the boat and start/stop doing things if, at this point, youāre OK with where youāre at? From the sounds of it, youāve made some good progress over the last month, which is great!
Thanks for checking in. Hang in there, Random, and hang out here!
Seenie
Lol! For a moment there I had an image of you in the wild place you inhabit, up on a rock somewhere, doing a headstand while meditating and sipping a little cactus tea. Iām kind of relieved thatās not quite how it is!
Anyway I donāt believe you have to adopt quite such an extreme lifestyle to help with the PsA, carrying on and paying no heed sounds like a good strategy to me. Perhaps at some stage youāll make more changes, do things differently, but ultimately only you can decide whatās right for you at any given time.
Itās really good to hear from you again. Being very nosey I wonder what itās like where you live and I also hope you keep us updated about any setbacks or indeed improvements. You take care too.