i am becoming more and more depressed and unsure 'bout this whole thing. I realized there was something not quite right with me for many years , by 2013 i was just unable to work reliably … work 8hrs and barely be able to make it home my feet and heels and legs would be locking up in severe pain , I’m sure all here understand far too well. Then not be able to walk for two or three days . And since it has grown steadily worse and spread through my whole body … it really seems to affect my ligaments so much my muscles lock up and I have spasms … amazingly I can still pay guitar, I attribute that to so many years, the muscle memory is so strong . I can just play through it… but then again I am so dang weak and tired and in pain that I rarely feel up to it, although the spirit be greatly willing. The other day I was playing , I full finger pick ;always had great nails to do the job, I tore my thumb nail about a quarter way off, and the rest of my nails beds have receded . Suppose I should start using finger picks.
I am bouncing so very hard up and down in Depression , I t was only last month I finally got a Rhuemy and diagnosis PSA . Short on some of this , the last year and a half i been been in bed more than up, and I AM A Fighter … I am not going to discuss what i think of the many doctors and specialist Ive seen, to so very little avail.
I was put on Prednisone and MTX . 4 weeks now , the prednisone did help my movement , range of motion ,etc., the MTX has made me horribly ill feeling , just awful sick… I thought i didnt want to keep living with a the pain and suffering , severely limited quality of life ,of the PSA… I had already picked up the RX , then read about the MTX I had great reservation because it is so Toxic, called my Rhuemy , he wanted to start me on that but offered to switch me to the Sulfa… went to a Dermatologist upon my Rhuemies advice, she was upset that anyone still uses MTX … says she can get me on Humira …and my Doctor . whom I am dropping , was going on about how MTX is the ‘big gun’ and I should just follow the Rhuemies orders… I had to refer myself to get my Rhuemy… I was so excited at the chance of getting better, I was so happy to find this site , but I have yet to chat with anyone I guess I am on here at the wrong times , there is hardly anyone on ere when I am .
I read stories here and seems to be freaking me some what more I feel so unsure and out of control … of course through al this many other issues about how i live have arisen … fighting to get disability for the last two years , just got a lawyer .
I have had a interesting life had a really good run… fighting hard to stay positive . I have drawn this out a bit long I suppose…there really is so much more to this . I do believe all here have felt that ole wringer…
I am really at a strange place with all this , i am wore down a bit mentally. it is frighting the way i feel now.
I read one response you wrote and could definitely identify with what you're going through. I tried to respond but I'm in transit at the moment & it seems harder than it should be to get online. Anyway.
That 'strange place', I bet most of us visit it from time to time .... yet it always feels very isolated & isolating. Have you drawn your post out a bit? No way! You're going through hell and even writing it all down may help just a little.
Of course talking about another person's experience of PsA can lead to simplification, and there are no quick & easy answers but there are a few key things you say that seem to me to give considerable grounds for hope. For a start, you have the diagnosis now and therefore you've started on meds. That in itself is often not an easy ride because an element of trial and error is pretty much built into treatment. It has to be because individuals respond so differently to the drugs, but without going through this phase you won't find a drug that really does help big time.
Mtx is actually a very standard first line of attack and it can be very effective, at least to a certain extent. But oh my, people do respond differently to it. It has been a good friend to me and I still take it alongside Humira. Humira …… if you have the opportunity to start Humira (or another biologic) just a month or so after diagnosis, then you’re considerably more ahead of the game than you might feel right now. I’d say grab it with both hands.
When you’re pretty much crushed by pain, fatigue, the disruption to your life and the first drug you’re trying isn’t working then it is very hard indeed to envisage a sea change. But there is a good chance that with the right treatment and your own efforts (exercise & a good diet contribute greatly alongside the drugs) you will gradually get your life back. Maybe a different life and one you have to put together brick by brick … but a good life nonetheless.
Incidentally … if you’re prepared to give Mtx another chance (it can be so useful alongside a biologic) then you need to drink a lot of water on a regular basis. Injections rather than pills can also knock the nausea on the head. Oh … and while your depression is entirely understandable, there is research that suggests it can also stem from the inflammatory process itself. Some of us find that our mood lifts considerably when the PsA is controlled & not just because that in itself is uplifting!
I’m not suggesting that Humira is a magic wand … I hear you about the knock on effect of all this & how low you feel. But I know from experience that significant change for the better is very possible. Stick with us, keep talking & good luck!
hi Knightsong. I'll just say this: listen to Sybil! I won't give you any "it's always darkest before the dawn" stuff. The despair and illness you feel are very real. But it isn't going to feel this way forever. Sybil has some great suggestions and I'd say your dermatologist knows what's up. Let her help you. Hang in there. Your nails will grow back and finger picks sound like a smart move in the meantime! I hope you get to do something kind and uplifting for yourself today.
Knightsong, everything that you describe (the emotional, mental and the physical) is familiar to us. When I say "us", I mean collectively. We all have our unique combination of symptoms, but there are people here who have experienced all of what you describe. Listen to janeatiu, listen to Sybil, read and read some more. It gets better, really it does.
The depression that you feel is far more than a reaction to your physical symptoms, although your physical symptoms are more than enough to explain why you feel so low. In fact, the process of this disease can affect your brain function.Here's an article that Sybil posted a while back. Worth reading!
Sybil,Janeatiu and Seenie …Thank you so much for your Kind responses. To quote Ozzie " Of all the things I have lost… I miss my mind the most. " That’s about where it’s @ right now. Not sure how I am going to go on this … will talk to my Rhuemy about my Dermas thoughts , we shall see hopefully they can work together , on this . I am shaking today… is that because I have just ended my Prednisone yesterday… thank you all so much again … hugs for all
Shaking may well be because of stopping prednisone. And also all these things that are happening to you are genuinely scary.
Do you feel 'out of it' or detached at all? Just asking because I was very much in a strange world of my own by the time I was diagnosed .... it was as if the world was just out of reach beyond a screen & in a sense I had no feelings. Nonetheless I kept crying. It was a horrible time, possibly worse for my family. I guess we all apply the knowledge we pick up with varying degrees of accuracy so anything 'medical' I say could well be off the mark, but the way I see it uncontrolled, systemic inflammation really messes up a person. It can feel total. But, conversely, when you start getting that inflammation under control the improvement can be pretty holistic too.
I'd just like to second what Sybil says about systemic inflammation messing up a person. You really need to discuss all your symptoms with your rheumatologist. It's great that your dermatologist is willing to help, but her dismissing MTX out of hand is maybe a bit much. On the other hand, calling it "the big guns" ... it does work for some people, but if you can't tolerate it or it doesn't help, it's not a gun at all! Do read about it in our Newbies' Guide. Yes, it is toxic, but what the warnings don't mention is that we take it in far smaller doses that the people who use it for other purposes. While you're on it, they keep an eye on your liver and if it isn't happy, you discontinue and your liver recovers. And BTW, many of us take it even though it doesn't help our PsA: it is also thought to improve the body's reaction to biologics.
Can we backtrack for just a sec? You've been bad enough that you haven't been able to work for several years, and yet you had to self refer to a rheum in order to get a diagnosis? I think, Knightsong, that I'd be asking the rheumatologist for the most aggressive treatment that he's prepared to give you. The inflammation you've had is bad enough (as you are discovering) but it would be good to know whether PsA has done your joints any permanent damage yet.
It's all pretty confusing, we know that. We've been there. To make it simple, get yourself set up with a team of doctors that you feel that you can trust and work with, and then accept the most aggressive treatment that they're prepared to give you. Research has shown that the sooner you control this monster, the better your chances are for living well despite it.
Usually if I cant bring something positive to the table , I just feel useless... and lately i have felt atleast fairly useless. I have always been a free spirited, open, gypsie musician, very out going.... the last three years I have been away mostly to mself and inside far,far, too much. I feel totally cut off , rally eel the need to reconnect... seem to be at that door way ... just need to make the right decisions. well, ya know Big Boys dont cry, Yup ya just break down sometimes... yes there is hope much closer now. I am going to ask about the injections ... I stopped taking the oral the 22nd and it's only just today i have started to feel better .. aprt from the Sickness I was nose diving into depression on the deep side of the pool.
I feel better today, all that uncertainty is still standing vidual , I will be happy to have the treatment resumed ... Thank you so much for the kind support.
Sybil said
Shaking may well be because of stopping prednisone. And also all these things that are happening to you are genuinely scary.
Do you feel 'out of it' or detached at all? Just asking because I was very much in a strange world of my own by the time I was diagnosed .... it was as if the world was just out of reach beyond a screen & in a sense I had no feelings. Nonetheless I kept crying. It was a horrible time, possibly worse for my family. I guess we all apply the knowledge we pick up with varying degrees of accuracy so anything 'medical' I say could well be off the mark, but the way I see it uncontrolled, systemic inflammation really messes up a person. It can feel total. But, conversely, when you start getting that inflammation under control the improvement can be pretty holistic too.
Thank you Seenie, I do feel better today , got several things done put new tires on my bicycle ,and rode it for a couple of miles . SO that s a good thing .
I am willing to switch to injectable , and try that... along with everything else I just cant be that sick right now ... I believe the combination of the "sickness " and coming off the prednisone , did a real number on me. The Pred. sure did help with the inflammation ... @ just under 4wks i doubt the MTX has made that much difference ??? of course I doubt , not knowing ... what a paradox...
I am fortunate not to have heavy damage to any joints , alot of them show damage , but nothing that cant be dealt with ...my left knee is bad , right hip is popping and giving sometime I look like the Scarecrow dancing . LOL . In May I dislocated my left shoulder, taking off a backpack, and it is still having probs. I get the Plantar and Achilles , thing so badly I cant balance well enough to stand sometimes... ya know any of it can happen any where n the body in any combination anytime, anymore... pretty much sums that up... to make no mention of PAIN relentless unending Pain . Feel like i am ranting now...I really ignored what was happening with this some many years ,, when it finally became more 'Wave' than not ... it was and still is to some degrees hard to accept... yup I am ranting.
I know something I need and want to learn more about , is proper diet to help stop the inflammatory process. I have been foolishly neglectful about pursuing this avenue . As you said Aggressive treatment is answer .. for this beast. Thank you so much
Seenie said:
Knightsong, how are you today? Still some shakes?
I'd just like to second what Sybil says about systemic inflammation messing up a person. You really need to discuss all your symptoms with your rheumatologist. It's great that your dermatologist is willing to help, but her dismissing MTX out of hand is maybe a bit much. On the other hand, calling it "the big guns" ... it does work for some people, but if you can't tolerate it or it doesn't help, it's not a gun at all! Do read about it in our Newbies' Guide. Yes, it is toxic, but what the warnings don't mention is that we take it in far smaller doses that the people who use it for other purposes. While you're on it, they keep an eye on your liver and if it isn't happy, you discontinue and your liver recovers. And BTW, many of us take it even though it doesn't help our PsA: it is also thought to improve the body's reaction to biologics.
Can we backtrack for just a sec? You've been bad enough that you haven't been able to work for several years, and yet you had to self refer to a rheum in order to get a diagnosis? I think, Knightsong, that I'd be asking the rheumatologist for the most aggressive treatment that he's prepared to give you. The inflammation you've had is bad enough (as you are discovering) but it would be good to know whether PsA has done your joints any permanent damage yet.
It's all pretty confusing, we know that. We've been there. To make it simple, get yourself set up with a team of doctors that you feel that you can trust and work with, and then accept the most aggressive treatment that they're prepared to give you. Research has shown that the sooner you control this monster, the better your chances are for living well despite it.
Hi Knightsong! I finally read your discussion (I've been in my own world with my recent health issues outside of PsA--or maybe a result of having PsA, who knows?). But, the title of your discussion and your first few words had caught my eye and I wanted to find out more about you.
My dermatologist said the same exact thing about MTX. But, some people here, like Sybil, have had good results with it and it helps their biologic work.
Your dermatologist will most likely give you a choice of biologics. I wouldn't be surprised if he/she offers Humira or Enbrel. Mine did, and I opted for Enbrel. Usually Enbrel is taken every week, but a dermatologist can get you twice a week doses for the first three months. That's what I did, and it worked extremely well.....I had felt hopeless like you (and pretty much everyone else here before they started treatment). Enbrel worked really quickly for me--within days I felt better and for 25 months now I've been feeling about 80-90% better! I hear ya about the muscles locking up and spasms--it's horrible! I haven't had that symptom since shortly after I started Enbrel. Before then, I felt like the Tin Man in dire need of an oil can!
There are several different ways to administer the injections. For me, the auto-injectors are the best because I don't care to see myself pushing a needle into my body. Auto-injectors are nearly painless, unless you think a mosquito bite is painful. And, after all the pain of PsA, most of us probably have a higher than normal pain tolerance. The injections go into a fatty place, so most of the time they don't even bleed!
I'm always so sad for newbies like you who feel so defeated. We understand what you're going through. We were all there or in a very similar place, and we want you to feel better. And there's very good chance you will with your first biologic. We are always here to listen and give our best advice and let you know you are with people who care about you. When I came here, I felt like crap--for lack of better adjective (I'm tired)--but I was so afraid of any kind of med I was refusing everything my rheumy suggested. I felt defeated, too, and knew I needed to do something. The nice and knowledgeable people in this group all but told me I was an idiot for not treating the disease. Fear the disease--not the meds, they say! And it's so true.
Keep us posted. You're on the right track with your dermatologist, and we're all looking forward to hearing that you are treating your PsA and feeling a lot better!
Well, Enbrel sounds nice , did you have side effects with that ?
Thank you for the encouragement... I have no compunction about needles and such... I developed diabetes since i became so ill from the PsA, thats a daily anyway right now. , so kind of you mention.... Ha Ha Ha , the Pain thing, I was in the hospital last month, the nurse was taking tape off my stomach , pulling all the hair with and just kept saying how sorry she was... I smiled at her and said dont worry at all , it is nothing , hardly noticeable back ground pain... yup yup total new tolerance level. I'm Sure we all payed those dues.
Yes this Enbrel sounds interesting ... i am still hav'n these reservations 'bout the MTX ... oh yes I wanted to mention to you Gm J , I have those horrible pains through the shoulder blades and neck... it's like all the attachment points are ripping or something , of course that little number seems to move around everywhere.
I am just a few miles from my Derm. my Rhuemy is 150 miles away. In St.Louis. I was hoping I could get them to work together. But Absolutely yes The best thing is to defeat this monster with any means possible, it was about a year ago I quit saying I cant imagine this getting any worse.. Now thats a hoot ain't it ?
Hugs. Knight song. Just hugs. Inflammation in my book always leads to how you’re feeling. Grappling with diagnoses and medication do likewise. And the utter exhaustion never helps either. They are great days like riding your bike and less good ones. Hang on to the good ones. They happen too.
No SEs--just a 2" pinkish area around the injection site for the first few injections.
Beware of the horrible pains around the shoulder blades and neck. I was having pain in that area for awhile. Then the actual pain of the near heart attack--that was different. I knew something was wrong--just not sure if it was serious--I took an excedrin (which contains some aspirin) and that did bring down the pain enough so I thought there was nothing wrong. Thank God I still went to the ER.
It's really hard to know if those pains around your shoulder blades are PsA pain or what! I'm still having some of that, even after the blockage was fixed, so some of it is PsA pain. If your pain changes and feels intense--it's like you KNOW this isn't normal and needs to be investigated!
Knightsong said:
Well, Enbrel sounds nice , did you have side effects with that ?
Thank you for the encouragement... I have no compunction about needles and such... I developed diabetes since i became so ill from the PsA, thats a daily anyway right now. , so kind of you mention.... Ha Ha Ha , the Pain thing, I was in the hospital last month, the nurse was taking tape off my stomach , pulling all the hair with and just kept saying how sorry she was... I smiled at her and said dont worry at all , it is nothing , hardly noticeable back ground pain... yup yup total new tolerance level. I'm Sure we all payed those dues.
Yes this Enbrel sounds interesting ... i am still hav'n these reservations 'bout the MTX ... oh yes I wanted to mention to you Gm J , I have those horrible pains through the shoulder blades and neck... it's like all the attachment points are ripping or something , of course that little number seems to move around everywhere.
I am just a few miles from my Derm. my Rhuemy is 150 miles away. In St.Louis. I was hoping I could get them to work together. But Absolutely yes The best thing is to defeat this monster with any means possible, it was about a year ago I quit saying I cant imagine this getting any worse.. Now thats a hoot ain't it ?
I think I was very similar to you although not as far gone, when I was diagnosed! I do remember crying in the shower every morning cause the pain was so bad but I didn’t want my family to see me crying … I was really low and like you, I didn’t want anything to do with mtx. What I will say though is that mtx has helped me enormously. I have had no serious side effects beyond the first 3-4 months (used to get bad headaches and soooo tired with it) my liver tests are always great - and I do like a drink! My pain is greatly reduced from mtx - I have missed my weekly injection twice and both times have been running to take it the following week! I’m also on humira which has really helped - I can now walk without too much pain in my feet. All of the drugs we have to take are ‘scary’. I too am also a type 1 diabetic so am taking injections 4 x daily for that! BUT the drugs help us so that we can live a near normal life
I hope you do get on a biologic but please don’t rule out mtx - it’s really not as bad as you think!
