I so ‘get’ and understand you’re in shock this is all happening to you. That was me to a T. Simply so distressed it was all happening. That distress does lessen but you need to deal with all that too. Otherwise it comes back and royally bites you on the behind. So be mindful of that.
With PsA there’s no quick fix, it doesn’t just go away like a bad bout of flu. Although having said that the meds do work eventually and you can just go into spontaneous remission but in reality it’s something of a hard slog to get there. Even for a time.
So take care of those incredulous emotions too. As really it’s taking care of them that gives you much better days ahead.
And as a PPS, I feel so incredibly awful today from my shenanigans on the horse, with a nasty cough, shortness of breath, chest tightness and moments of sharp chest pain. Having restarted my meds on Wednesday night after stopping them for nasty chest cold, I even had a moment of oh no! (actually I thought oh sh!t), what if I’ve got pneumonia? Even those of us who are blessed still go through the uncertainty. But it does get better with time - this is probably the 18th time I’ve worried about this, and it’s yet to come true. So I’ll make an appointment with my GP for Saturday, if it’s gone by then, as overworked muscle spasms should be, I’ll cancel it. If it’s not, I’ll dutifully head in and get assessed.
And, since it’s messing with my head a bit on the new meds I started a few months ago, I’ll head off to my psychologist, regardless of the medical outcome.
Big hugs @Jen75. Hate those scary panicky thoughts brought about by just feeling so rotten. Hope both appointments help or rather that the first isn’t needed and gets cancelled and the second just helps.
Well, I had a couple of glasses of wine, just for diagnostic purposes , cause you know, alcohol is a great muscle relaxant! And of course the pain is gone So I’m guessing I’ll chalk it up to one of those panicky moments, but I’ll definitely be making that second appointment, even if I feel better tomorrow
About 3weeks in on sulfa and yesterday I couldn’t believe how bad my entire hand felt. 2 duexis didn’t do the trick. And today I am pretty sick with a cold [its 90 degrees f this weekend) so is this from the week immune system? I take vitamin d and rarely get sick. And honestly I’m afraid to take any cold relief because of already taking sulfa duexis and a bunch of vitamins, maybe I shouldn’t Jam all that stuff in me and adding DayQuil to the mix.
I didn’t notice any dipping of my immune system as such on sulfasalazine. Other than a serious shin skinning injury took a really long time in healing. But I didn’t get more colds/flu/chest infections etc. There’s also little contraindications with it in just treating your cold with the normal over the counter remedies. And if needed, antiobiotic treatment isn’t contraindicated on sulfasalazine as it is on other DMARDS and/or biologics.
Remember the reason you’ve got PsA is that your immune system is faulty anyhow. That’s why it started attacking your joints etc for no good reason. Be careful though with the ‘bunch of vitamins’ and make sure you’re not overly boosting your immune system and confusing it further. Vit D is certainly good as is good quality fish oil, but some people think (not really me either) that too much of the rest isn’t that helpful to an already abnormal immune system.
And don’t forget sulfasalazine does take time (as in months) to become effective and won’t normallly do anything (if it is going to do anything) until you’re on 4 tablets a day which you might not have reached yet in only 3 weeks. I didn’t notice much positive effect on it until I was on 4 tablets a day for around two months. Then I felt it was doing something. But I didn’t think it was doing enough, so I was told to up it to 6 tablets a day (the increase occurred over two weeks) and then it worked, as in really worked.
So having your hand getting worse despite being on sulfasalazine for three weeks doesn’t necessarily mean it won’t work for you. You’re just not yet at a therapeutic dose yet and for long enough to even make that decision.
It sounds though like you’re in ‘the gap’ just waiting for things to work. When I was like that, the only thing that worked for me was steroids. They capacitated me and bridged the gap. However you can’t stay on them for any length of time and they really need to be taken very judiciously indeed. For me it’s my right foot that’s most troublesome, so judicious steroids helped get me walking again whilst in the gap.
im on 4 pills a day from the start, perhaps because im a larger. this time period is pretty tough. i defintiely feel worse 3 weeks in. drained, fatigued, hot, and some days my hand really hurts. the last two days my knees have really hurt- still no idea if thats related or not. all the while not knowing if this is going to work, or if i have to take more pills and then wait again and then take somethig else and wait again… my hands are ok, but i feel them getting weeker and having more pain on some days. if this continues i am really going to have a tough time. and i still have this fine line of what exercise i can do, i need to be active but even easy workouts may be causing some pain. i really hate this disease
However you started sulfasalazine on 4 tablets from the start??? As in 2gms a day??? Gosh I started on one 500mg tablet a day for a week, then one twice a day the next week, Then 2 in the morning and one in the evening in the third week and finally got up to 4 per day in the 4th week. Was told all along this loading process that I could drop back if I got side effects, I didn’t but lots and lots of people do.
Then I cruised on 4 tablets a day for about 2 or 3 months. And increased to 5 tablets a day for one week and finally onto 6 tablets a day (3gms) when it actually started to work.
And I’m not a small or thin person at all.
You’re not going to like this but most of the beginning of medicating for this disease is trial and error and lots of waiting around waiting for things to work or be deemed not working. And all of the initial drugs used are slow workers for nearly everyone. As in they usually aren’t deemed to be not working for you until at least 3 months has passed. Much though does depend on the level of disease activity and indeed side effects if any. It’s rare there’s a quick fix sadly.
All and indeed any exercise is good but worrying about gym workouts and what you can’t do there might not be the best of measures either.
This is seriously depressing. Should be a very happy time in my life and it just lingers this disease like “oh you think you’re getting started now, just wait what’s in store, your life is gonna keep getting worse”
Having a diagnosis of a such a chronic condition is frankly depressing. And never can’t be so really. It’s frightening too especially initially as it seems to change all the damn time (not always worse either) which confuses things. But the rollercoaster effect does lessen, if for no other reason than you just get more used to it, coupled with the fact that eventually some drugs finally end up working just doing their stuff. And then you look back and realise it actually isn’t as bad as you feared it might be.
Keep with it and remember to just enjoy the happy times of what your life is giving to you right now anyway. The best thing having this disease taught me was just to suck up everything positive at any opportunity. And your soon new baby surely is one of those?
It’s been a while since I’ve posted but like the folks here are saying…it does get better.
Sulfa turned out to make me feel pretty awful in hindsight…same symptoms you are describing almost exactly. So I dropped it and started Enbrel. Seven shots in and feeling much better. Energy is back, clear thinking, much less pain, and my outlook has greatly improved. No side effects from Enbrel whatsoever. I’m not perfect but much better.
Also started stretching 2x per day, eating a very clean diet, no alcohol, and added some anti inflammatory herbs and acupuncture. Took my son to a ballgame last week which I could never have done when first diagnosed!! You have much to look forward to I promise. It’s an unfortunate condition but manageable…and often can be put into remission. I met a guy in my doctor’s office that is surfing again after being on Enbrel for a while. It took some time, but he now needs only 1 injection every 4 weeks…so hang in there!
Stay positive and I suggest you start considering a biologic. The clinical data is pretty clear that early, aggressive treatment gives better chance at good long term outcomes. And the benefits of biologics controlling joint damage is critical as opposed to NSAIDS which deal with mainly symptoms. Recent clinical data from EULAR also demonstrates lower overall mortality risk for those on TNFi vs general population…so there are some silver linings to these drugs starting to emerge.
Take care and remember to stay positive and patient. This will generate good hormones and not the bad ones that come with stress…those tend to aggravate your symptoms.
hi it’s been a while, unfortunately
Early July, just days after my son was born my wife suffered a massive hemorrhagic stroke. It’s severe, she is still hospitalized and the long term outlook is both not great and very up in the air. It’s as serious a situation as can be, not much more words are needed.
Back to me, I am 2.5 months in the sulfa. Remarkably as if the universe gave me one little tiny gift, the first 3 weeks of this ordeal my symptoms of psa were minimal to non existent. However, as I am now in charge of 3lives besides my own, I need the impossible- a quick fix. I’m making time to come here because my symptoms have started up again. It’s close to as bad as my worst feelings of as early in the year. I’m still very minor I think by the stories I read here but I can’t be debilitated from this. I don’t have the option. My last visit a month and a half ago with my rheumatologist I asked about what’s next if the sulfa doesn’t work. He said methotrexate. If and when I get time to make this appointment do I plead for something else? That’s really what I’m asking. I don’t have time to try a bunch of things and wait and see. I was optimistic that as I neared the 2 month sulf period that was why I was better. I guess this wasn’t the case
And to be honest I have no idea why this is happening now
As you can imagine since this happened my diet has mostly been poor(gluteny carbs), I slept way less when this first happened, I have not been drinking alcohol save for 3-4 times in 7 weeks and I’d say 1/3 rd or the days I eat antioxidant rich food and take fish oil. I can’t say “well this changed so this is why I don’t feel great now” and like I said for 3 weeks I was the worst with sleep, eat and exercise and felt fine. 3 weeks is a long time for adrenaline to get you through.
The only quick fix possible is steroids, and it might be the solution to get you over the hump. In terms of foods, yes, it’s really challenging with all that you have going on. My only suggestion would be to spend an hour every week prepping foods that are healthy and easy to grab and go. Chopped up vegetables in a bag with hummus. Hard boiled eggs. Food that you can just heat up and go. You’ve got a lot going on, so simplifying is really important.
Is your wife still in the hospital, or at a rehab?
Unfortunately I can’t really add anything re the treatment options etc as I’m very new to a PsA diagnosis myself. I just wanted to say I’m so so sorry to hear about your wife, I do hope she makes a good recovery, it sounds like it’s going to possibly be a long haul for you all though. I do hope your son is doing well and is able to bring some joy to all your lives at what must be a very difficult and traumatic time for you all. My thoughts are with you… Anne
I’m really sorry to hear about your wife. That’s the toughest it gets.
Stoney is right, the only quick fix is steroids. However I just started a biologic a bio-similar to enbrel and that worked fast too as in around 2 weeks. And has less issues than steroids. Mxt can take its time to work and it can have debilitating side effects for some not all (it did for me, I simply couldn’t deal with the side effects) and might not be what you need right now. But as regards the sulfasalazine, it did little for me when I was 4 tablets a day, but when I was told to take 6 tablets a day within a week, it really worked. So if you’re not yet on 6 tablets a day, why not call your rheumy and see if you can go up to 6 tablets a day. That might be a real sensible way forward which could really help too.
I am so very sorry to hear about your wife. Very best wishes to her, and to you.
I agree with @Stoney that steroids may well be the best thing for you at this moment in time. It doesn’t surprise me at all to hear that your symptoms improved for a few weeks, I think that the adrenaline effect probably can last that long.
You could ask your rheumy if you could go straight to a biologic in addition to steroids. In the circumstances that seems to me to be a very reasonable request. There again, steroids plus Mtx might be a good combination on the basis that by the time you finish the steroid taper Mtx should have kicked in, if it’s going to work.
I completely understand why you are thinking about your diet, sleep etc. You need to be in the best shape possible. Again, Stoney has some good ideas - just grab ‘good stuff’ that needs minimal preparation. And, if at all possible, don’t worry about your PsA. Maybe that sounds ridiculous, I don’t know, but if you’re getting pretty good treatment for it then it really isn’t worth worrying about at this time.
So I’m guessing I’ll chalk it up to one of those panicky moments, but I’ll definitely be making that second appointment, even if I feel better tomorrow