Hi, everyone. I’m Dee, and new to this site. Glad I found it because I’m struggling to adjust to life with PsA. I’m 57, and PsA came on like gangbusters 8 months ago. It took a month of being unable to move just to admit this was more than just aches and pains, and that I needed medical help. I was prescribed Prednisone for 6 months, and have now been on Methotrexate and folic acid for 1 month. The Prednisone worked like magic, but osteoporosis means I can not take it anymore. The pains and random swellings continue, and the fatigue is overwhelming. The only change I’ve noticed since being on the MTX is my hair is thinning out, I have a perpetual metallic tase in my mouth, and the roof of my mouth and nose/throat feel ice cold and tender. Over the years, I’ve had many broken bones, a couple of weird diseases and even cancer… but this PsA may be the most miserable. Perhaps because I see no end in sight.
Hi there and welcome.
It’s quite a shock when you get landed with PsA all of a sudden, isn’t it? That happened to me too.
Methotrexate or mxt can take a bit of a while to get going - 12 to 16 weeks really, so it’s not unusual after just a month that nothing much is happening other than its side effects.
What dose of mxt are you on? Are you taking it by tablets or injection? How much folic acid have you been prescribed? 5mg every day but the day you take mxt can help. And are you drinking jiust loads of water the day before, the day of and the day after taking it? That can also help. Ginger can help too.
PsA hit me out of the blue 4 years ago and believe me there is ‘not an end’ exactly but a far better management of this disease ahead of you and indeed far less feeling miserable too. There are a host of meds available to manage PsA - it’s just a question of finding the right one for you. Sadly most of them take time to do anything - 12 weeks or being fairly usual.
And you’re just starting out on that. So big cyber hugs really. But it can and does get to feel a whole lot better.
Hello and welcome!
Sounds familiar! Me too, at 56 which is just under 8 years ago now. I was very ill - there was nothing ‘just joints’ about it.
I may be fooling myself in retrospect, but as I recall the fatigue was so bad that it prevented anxiety - I was in some twilight zone.
Things are so very different now. There are good drugs for this disease. Methotrexate can help but many of us find that it isn’t enough by a long chalk. Humira made a massive difference to me, it restored normality. Actually better than the ‘normality’ I’d known because although PsA can hit hard, apparently all of a sudden, I realised that it had been undermining me long before the gangbusters appeared.
I also suspect - a suspicion is all it is - that my PsA has now calmed down irrespective of the drugs. I have no way of proving that though.
Take really good care of yourself in all the usual recommended ways: good diet, adequate sleep, some kind of regular exercise however minimal that may need to be.
Most of all, forget the idea of there being no end in sight. There is likely to be a change for the better with the help of your rheumatologist and your own determination.
This is a strange journey, all of us here will ‘get’ what you’re saying I think. Please discuss your PsA inside out and upside down if you wish to. Worked for me!
Thank you for the encouragement. My methotrexate was just increased to 12.5mg for month #2 (up from from 10 for the first month) taken by tablets. Folic acid prescribed is 1mg daily. I do drink tons of water. I’ve also cut out sugar and simple carbs from my diet. What can be done to boost energy? Some days I’m so completely exhausted that I can not even think clearly, and have no control over nodding off.
Thanks for your response, Sybil. I, too, suspect PsA has been undermining me for some time. I have not felt “well” in several years, having had a series of back-to-back health issues, each recovery taking months but never quite feeling 100% again. Lyme disease was followed by cancer, was followed by a broken leg… who knows by what or when the PsA was triggered? As I understand it, it can take 3- 6 months for the benefits of PsA drugs to work. But many fail before finding the “right” meds. So how long are most patients receiving treatments that DON’T work before finding the one that does? I just want my energy and enthusiasm back ~ the sooner the better!
That varies so much. I’m truly one of the lucky ones for whom Humira (and then its biosimilar) has really worked. There again, I spend way too much time here whereas there may be many thousands of people as well as I often am who see no need for forums thanks to a lasting drug-induced reprieve. (That’s my brilliant excuse for sticking around). In truth, I have other stuff going on these days … maybe other autoimmune things - the search for answers continues. Plus I do have some PsA damage.
Overall though, I have good reason to trumpet the potential efficacy of the meds. Once upon a time I could not walk or lift my arm or stay awake. Today I spent 7 hours painting the hall.
I did find Mtx helpful - definitely turned a corner on Mtx, just needed something more as is often the case. 1 month is very early days as you acknowledge - too early to tell if it will prove to be a lasting friend to you. Give it a chance.
Be kind to yourself and think positively. I can hardly believe I’m saying that seeing as the power of nebulous things like positivity is so often used as a stick to beat us with. However you have been through a lot. Your body must be exhausted. And my take on this would be that 57 is still relatively young, young enough for the body to recover and grow stronger. So … I’m probably sounding rather strange now … you could consider PsA at its worst, as it is now, as a time to take stock and rest (how can you do otherwise with that fatigue?) and, as far as possible, perhaps in time you might consider whether there are things you can do and have always really wanted to do which you intuitively think would also boost your health. Alternatively, perhaps there are things you’d be better off without.
Having been an over-worked teacher, PsA + a few months of Mtx saw me bumping down the stairs on my backside in the morning and getting to work at my easel without washing or dressing. Never before had I done exactly what I wanted to. Maybe, just maybe, that helped me somehow (though not as much as the biologic therapy). What I’m saying is that stress-avoidance or mitigation is a good idea, whatever that translates to in your life. And stick with us - and talk honestly to your rheumy - to ensure that you get the best treatment.
The fatigue for me really eased up once the meds starting working. A bit like @Sybil the initial PsA fatigue also forced me to reassess how I emotionally dealt with everything. I was lucky at the time I seeing a psychotherapist just anyway and having that support initially with this disease seriously helped me.
I would ask can your folic acid be increased to 5mg daily (other than mxt day) though. Mxt itself can make people really fatigued too and that coupled with the PsA fatigue can be then overwhelming. So a 1mg dose is rather low really.
Everyone’s med experiences can be so different. So there’s a myriad of different ‘how longs’ before any individual felt a lot better. Mxt hated me, but sulfasalazine loved me but then ran out of juice as my disease progression overtook it. Humira hated me but Enbrel liked me but didn’t last the distance and failed after 11 months, again just running of juice to help as my disease progressed. Cosentyx appears to love me presently but I only started it in November so early days yet.
So I haven’t spent that much time on meds that simply didn’t work, I have spent quite a lot of time on meds that did work and then stopped working due to my disease progression.
And as you’ve seen from @Sybil mxt loves her as does Humira. So everyone’s experiences are simply as individual as they are.
So what this disease taught me was patience. I’m not by nature at all patient so I fought hard against that initially. Which was counter productive really, as ‘temper tantrums’ usually are.
But my med journey this far has ensured I can still work full time with some changes as in I now work at home at lot. My job requires my brain is working on all cylinders too, so I need to be sharp. It’s also permitted to bring up a labrador from a puppy, - he coincidentally arrived bang on when PsA hit me so that’s all he knows. So for me a good day now is doing a good day’s work plus managing an engaging walk with my dog rewarded by lots of cuddles on the sofa in the evening. That’s just fine by me, really. Once I can keep on doing both, I’m really quite happy. It’s also allowed me to go on holiday cruising our own boat (we rent the boat - not own it), stopping off every day somewhere different very year. That’s physical and fun. And it’s also allowed me to go up to the Lake District in the UK every year where whilst I don’t do the mountain climbing I certainly can walk around lakes every day. I’ve just turned 58 incidentally too.
Life is certainly a lot more OK now than it was at the beginning - that’s for sure.
Like several of you, I was diagnosed in my 50’s at the age of 55 two years ago. My diagnosis came as a result of seeking a reason/answer to the all-over body rash I developed with a bad case of strep throat. Six weeks and three topicals later, my derm asked how my joints were feeling. Interestingly enough I had noticed that my ankles were sore and very weak at the end of many days, but I hadn’t thought much about it and I certainly hadn’t mentioned it to my derm. I’d been under a lot of stress and had been working many hours and not taking care of myself. Had gained some weight and just put the pain off to being unfit. When I responded to me derm that my ankles had been bothering me she immediately made the connection with PsA and wanted me to see a rheumy. And so the journey began…
First with denial and then the RX for methotrexate. I didn’t like what I heard about side effects so it took a lot of research and conversations before I agreed to start it. Meanwhile I was pretty miserable with the rash that hadn’t resolved 4 months later and with the ankle pain. Once I decided to take the medicine it took a few months, but I did see a gradual improvement in both the joint pain and the rash. Fast forward about a year and a half later I was still struggling with foot and hand pain that hadn’t really gotten much better. (I’d had issues with my feet for years–20+ years of plantar faciisits and osteoarthritis for 10-15 years.) So at one particularly teary appointment with my rheumy she suggested that I try a biologic. And if fact she reminded me that this wasn’t the first time she suggested it. Guess she saw the writing on the wall so to speak.
So again, after a lot of research and prayer and trying to decide about this expensive treatment, I was able to say yes. It’s only been two months now as I began at the beginning of December. Things were going smoothly until I had my first injection site reaction at my last injection two weeks ago. That was injection #4. I’m hoping that I don’t have another reaction or that it doesn’t get any worse than what it was. And then I ended up with catching a virus early this week so needless to say my doc has suggested I hold off on the injection this week and try for next week.
I have to say that even though it’s only been a couple of months, both my feet and my hands feel better when I rise in the morning. It took a month or so before I realized that was happening, but I’m wondering if the Humira is actually working already? Interestingly enough, my disposition/attitude/emotional health is better too. Could that be a benefit of the Humira or more like a mental relief that my pain isn’t so bad, thus impacting my emotional health as well?
Oh yes, the emotional health…I agree wholeheartedly with what the others are saying up above. You’ve got to take care of yourself–body, mind and spirit. Putting yourself first. And that requires stress reduction…more/better sleep, healthy diet, exercise and sometimes help from a therapist. I’ve been seeing one for a while now and it’s helped me tremendously.
So, adk, know that there are better days ahead. You’re at the beginning of your journey. Keep pressing on and use your team of doctors to help you. It can and will get better, but you’ll have to do the work to get there. You’ve got this!
Hello newbies! So glad you joined us (sorry we’re here because of our illness, but it’s great we have this go to place)!
Wow, so many of us got diagnosed in our 50s. Either we’re lucky we made it through a good part of our lives w/o it, or we had flares of it off and on for years and the dots weren’t connected early on!!! I think it’s the latter for most of us. In a way, I’m glad for that…when my PsA got really bad—I was dx’d in 2008 when I was 55 but wasn’t convinced it was bad enough for meds until 2014–I was begging for help!
Fast forward…I’ve been on Enbrel 5-1/2 years now and it’s doing its job very well. At 66-1/2, I’m no spring chicken, with damaged feet and other problems, but I remember the crushing fatigue (I think that’s what you’re referring to, @adk, and the other things you and @Sandy mentioned). I have plenty of energy. If it weren’t for my feet—I’d run circles around others my age!
It’s most likely a combination of the two! That’s great!
I was obsessed with having PsA. So much that I finally got an anxiety med, 25mg Sertraline, which is a child’s dose but it took away the overwhelming gloominess of having a chronic disease.
Hi Dee, Im glad you are using this site, it helped me. I was diagnosed with psa in 2019 at the age of 69. I didn’t want to accept it and was afraid of the side effects so I had kenalog shots for awhile. But the psa came back, helping me realize I’ve got psa and I have to do something about it.
So 7 months after being diagnosed I started on MTX 20 mg shots once a week, a 5mg of folic acid once a week (the day after my shot) and sulphasalazine 500 mg x4 every day. About 3-4 months in my pain was about a 1 out of 10, but now 6 months in my joints ache, I’ve lost mobility and feel like crap, no energy, and have gained weight. No hair loss or metallic taste though. Its affecting my everyday life and the sports I enjoy.
I tell you this just to give you another example. I think because we are all different the drugs affect us all differently. I’m disappointed about the way I currently feel but will see it through for awhile longer. My Rheumy says my combination of drugs helps about 60% of the people. Going forward I might have to consider biologics. BUT keep using this sight and look around to other posts on it as it helped me put things in perspective. All the best.
Biologics are just fine - remember. Seriously, for many PsA sufferers they say biologics gave them their life back.
Hi Dee. I’m sure you aren’t feeling lucky right now, but your diagnosis was actually incredibly quick - maybe PsA is starting to be on the radar for first line doctors! My diagnosis took over a year, even though it destroyed my right knee over the three months between the first X-ray and the MRI. Emergency knee replacement that took eight months to heal before the “Aha!” moment.
I was actually rather relieved to know that I hadn’t just been whining about feeling so bad! I well remember waiting on any improvement with the Mtx. This site made such a difference! They told me the time between diagnosis and feeling better was called “the gap” and that it often lasted between 3-6 months. Your exhaustion sounds very familiar, as do your worries and your pain. I was lucky. My second add-on med - leflunomide - worked and I’ve come VERY far in the five years since then. I’ve learned that regular gentle exercise is important to both my physical and emotional health, and I’ve found some great resources that keep me engaged.
You **will ** feel better! Your doctors are clearly on the ball. Use this site as often as you can, both during and after your journey back to health. So much combined experience available here.