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Living with Psoriatic Arthritis (PsA)

Looking for some answers


#1

Hi. New to the site. Googled looking for answers and found this. Will try not to complain too much. I am 45. My symptoms began five years ago with lower back pain, foot nodules, and fatigue. Two years ago, the back pain intensified, morning stiffness set in, and I developed pain in my feet, ankle, toes and hands. I found myself going from being outdoors, hiking, camping, fishing, to not even being able to climb stairs at times. Finally saw rheumy, said I had RA, factor was negative. Toes were sausages. Placed on sulindac and other nsaids. Did trial of Prednisone. Could not tolerate it. Then, you have OA because all of my blood work was negative. I assumed that this could be the case as I have been a nurse on my feet for 24 years.

Continued with worsening pain, more joint involvement, a primary doctor who insisted that it was not OA due to elevated HLAB27, a rheumy who disagreed and an orthpedist who insisted on taking out a foot nodule for biopsy. Last March, rashes started. Legs, arms, neck, all affected. Trip to dermatologist and a biopsy said dermatitis. Nothing helped. Creams, meds, nothing. I have gone from very active to not being able to walk or stand for more than thirty minutes max. I have no energy, intense itching, joint pain everywhere, and no quality of life left. My husband is supportive but I see the my physical and emotional decline taking its toll on him as well.

Finally this August, after five doctors, foot surgery, lots of money, biopsies, frustration, depression, and just plain being worn out, I saw a rheumy who diagnosed PSA. Started on methotrexate six weeks ago. It wipes me out for two days but. Am seeing some resolution to the rashes. I still have significant joint pain, can’t stand for extended periods, can’t hike, can’t fish, and just seem to have lost my life as I knew it.

I guess I am posting to know if this is common. I go through periods, especially before a diagnosis was given, where it just seems completely hopeless, that I am crazy or something. I need to know that it gets better, that one can improve with these meds. If anyone has advice please let me know. I am stubborn and independent and this is interfering with that. My husband loves me and I want to get better to take those hikes and camp again.

Sorry for the long post. Been building a long time. Thank you for listening.


#2

Hello Michaelwesley & welcome.

The main thing I have to say is that yes, PsA can get better, sometimes (often?) considerably better with treatment. It’s difficult, even for a nurse I guess, to envisage medication getting you up & going again when PsA has basically de-railed your life, it’s too much for the brain to process, it seems too much to hope for. But you are very likely to see significant improvement in time.

I’ve been in a similar state to that you describe, unable to walk more than a few steps at worst, unable to stay awake for more than a few hours, cut off from other people by pain & exhaustion. Methotrexate helped me greatly, the way I describe it is that it made me a viable human being again. Ultimately it didn’t do enough though and since starting Humira in 2014 my mobility and energy levels have often been pretty much normal.

The drugs (almost all of them as far as I know, apart from steroids) do take a while to kick in. When they do the improvement can build incrementally. I hope Methotrexate helps you a lot. But if after a few months it’s not delivering then you may wish to press for the most aggressive treatment i.e. biologics. And you’re not crazy … or at least if you are then we all are! I swear most people go through desperate times with this disease but the situation is not hopeless at all. Hang on in there.


#3

Thank you for your feedback. It’s good to know that it can improve. I fully recognize I may not ever be back to where I was but my patience is wearing thin and it shows. I will definitely push if the methotrexate does not do the trick. I am grateful I found this, an outlet where I can voice how I am feeling without people getting annoyed. My husband wants to help. Wants to make it better. He gets so frustrated that he can’t. I try to put on a brave face. Never complain, and simply keep going but that is much easier said than done sometimes. It is affecting him and us and I want to get better so we can have a life as married partners. I am encouraged by your response and thank you again. Hope your evening goes well.


#4

Welcome! So glad you found this site. I know how much it helped me back in February, and I hope it will do the same for you.
Sounds like you’ve been through so much. It must be a relief to finally have a proper diagnosis and be starting a treatment path.
I was diagnosed in late January, after suffering badly for 4 months (which I realize is actually very fortunate) and after trying a few NSAIDS with no luck I landed on a combo that seemed to help, but wasn’t perfect (meloxicam and sulfasalazine). Fast forward now to 6 months on this combo, and I am seeing great relief in my pain levels, can sleep 6 hours in a row, can work full time again, have a social life (although naps are my new BFF!), can walk almost comfortably and sometimes even feel like my old self!
You have found a great source of support and information here :slight_smile:


#5

I hope you stick with us during this difficult phase which we call The Gap here, i.e. the period between diagnosis and seeing a change for the better. Every word you wrote resonated with me. Much as PsA varies, we do tend to go through some very similar experiences.

As you acknowledge, there are no guarantees about the level of improvement but anticipating a real and very positive change is justified. Knowledge of the disease and the medication often helps and I think that can be true for our partners too. Perhaps my husband is just a more reasonable person than I am, or maybe not having the disease makes him more objective! But either way, often when I go into a blind spin his attitude these days is ‘it’s just the PsA, don’t panic, it’ll pass’. Having a partner who gives a damn is just the best thing ever. ‘Other people …’ don’t get me started! But it sounds as if you have a great ally in your husband.


#6

Welcome MW! Your rant did me good too: mine was a very long road to diagnosis, a road which left me holding a lot of emotional baggage. The good news is that I’m feeling much better now than I did ten years ago. The bad news is that the damage from a couple of decades of diagnosed disease has really impacted my life. I’m independent and stubborn too, and like you, I spent 25 years on my feet as a teacher. Yes, sadly, your kind of story is not at all uncommon.

If I were to give advice, I have two bits for you:

  1. Find a rheumatologist with whom you feel comfortable and confident. I’ve had to make a couple of switches, but this is going to be a long relationship, so it’s worth the effort.
  2. Accept the most aggressive treatment that your rheumatologist is prepared to give you. Do not “tough it out”. Your pain is not a good gauge of what PsA is doing to your body. Damage hurts, and it’s hard to repair.

Onward and upward! Here’s to working out a good treatment plan, and an optimistic view of better days to come. We’re glad that you found us, and we hope that you will continue to participate in our conversations.


#7

Thank you so much. I do have one I am comfortable with now. The first one just was not aggressive enough in my view. Very nice guy, came well recommended but was the only one in town too. It is encouraging to hear other stories because I really did feel like I was simply out of my mid and losing it. Lol! Was told that it was this or that or nothing at all and that the pain could not be that bad. I do feel I amoving forward, slowly, and iny microwave world I want results now. Don’t we all. I have told a couple of friends who have issues that are similar to not settle with one opinion but go for more as needed. It’s nice to know there are others who have similar experiences. I moved from a busy urban area in Alabama to rural Vermont for a quieter life. Unfortunately, finding people with this disease us much more difficult so thank you. Have a wonderful day!


#8

Thank you aspyn for your feedback and encouragement. I have already begun to refocus my energy to getting better and away from the negatives of this. Your advice on the medications is so helpful. I was scared to death of them. Even working in health care and seeing it’s benefits. I fought against it a long time. I ate so many blueberries, walnuts, flax see, and turmeric that I finally had to tell the hubby I need a pizza. Was working all the naturopathic angles. But, the methotrexate after six weeks has almost done away with the rash on my arms and my neck is better. I have guttae and inverse psoriasis, not plaque. At least not yet. The joint pain is unchanged. Still getting up two to three hours ahead of work time to get things moving. Even then, I am not good til two hours after I get there. I also changed positions that allows me more opportunities to sit if I need to or move about as well. Plus the stress is a hundred times less. Thank you again for your advice. Deeply appreciated. Have a wonderful day.


#9

Hi michael.

Welcome to the site where you’ll always get good advice and people willing to listen when you just need a moan. I was diagnosed nearly two years ago and couldn’t imagine it was ever going to get better - waiting months on end for drugs to help a bit but not a lot! It does get better though. I see great specialists now (after a couple of useless rheumatologists) and am on humira and methotrexate. I am not pain free but I can walk, golf and live my life pretty normally most of the time - so don’t give up on getting back to the things you both love to do! Try to be patient and get enough rest - it’s good to be determined but important to try to limit the pain in e early days …

Fingers crossed you keep getting improvement with mtx - it really does help me.

Susan


#10

Thank you Susan. Your words are encouraging. I have been working very hard on finding a balance between toouch activity and not enough. I am learning to let go slowly and allow some help in things that areore difficult than they used to be. Somehow it is teaching me that is actually ok to let go some and allow the one who loves you most to help. Begrudgingly I am doing so. Everyone here has already brightened my outlook on this. Thank you so very much.


#11

Hi all,

Just a quick post about my recent findings. I’ve had Psoriatic arthritis for over 10 years, and have tried many of the “usual” medication. None of which have brought me any relief. If it does for you, awesome keep at it.

I recently tried krill oil tablets. They are called mega krill, and these are 2000mg tablets (they are huge). I’ve been taking them for a little under a month. I have to say, I think I’ve found my thing. My daily pains have gone from an 8 out of 10 to 1 or 2 out of 10. The swelling in my joints have reduced significantly! I even managed to play 90 minutes of soccer last weekend… A miracle for me. My shoes fit better, there’s just something about this that’s working for me. I emplore you to give it a go, it’s just awesome.

It may not work for everyone, but hey give it a try.

Would love to hear your thoughts on this product after you’ve tried it.

Happy weekend all
Darren :slight_smile:


#12

Krill oil is supposed to be similar to fish oil, but I think even higher in Omega 3. I’ve certainly heard the recommendation to eat a diet high in Omega 3, and properly balanced with Omega 6. My understanding is that doing this through diet may be enough for many people.

As a reminder to everyone, supplements are just that, supplements to a balanced diet. They are not intended to replace medication or a healthy diet.