As a newbie to this site and recently diagnosed with Psoriatic Arthritis, I have many questions. Sometime around May 1st of this year, my thumb suddenly got very swollen and painful to bend, then I noticed on the same hand, that my pinkie at the top joint was red and swollen. My wrist on the same hand is swollen and painful as my index finger on the other hand is swollen. I also woke up one morning with a stiff neck. I have had plaque psoriasis for about 4 years..only have patches on one ankle, my belly button, in back of my ears and in one ear.
I am taking 800 mg of ibupropin 3x per day and it is taking the edge off of the pain. I live in China and have seen doctors in Hong Kong and the US who have both confirmed PsA. I will be heading to Shanghai at the end of the month to begin serious treatment of Methotrexate.
My understanding is that I should go on Methotrexate and if that doesn't work to slow the progress and ease the pain, then I am onto Biologics. I am still partly in denial, but have scoured and stalked every website I can find on the internet and can not come up with a different diagnosis.
Is anyone out here have similar symptoms? Did you go for the stronger drugs? Do I really need to do that? Is there any way of knowing if this will hit other joints?
Appreciate any discussion and advice you can give.
Welcome to the group! You've come to a great location to learn more. MTX (methotrexate) is typically the first disease-modifying drug used, although there are others. Some people don't do well on one medication, or don't get much change, so another med is added, or it's swapped out. If you're put on MTX, make sure they put you on a folic acid supplement as well. Also, you're on a high dose of NSAIDs. Do they have you taking prilosec or similar in order to protect your stomach?
In terms of hitting other joints, there is a slight possibility of remission. I think my rheumy said 10% will have a remission early, and you are in that zone now. But overall, this is a progressive disease. It sounds like so far you are relatively limited to your hands. I started off with hands, but have definitely progressed in the almost 6 years since diagnosis. At this point, it is clear that it is systemic, with many joints involved, as well as tendons, ligaments, etc.
It's a tough diagnosis, but I would encourage you to follow through with the treatment suggested. You have to give any treatment time to work, up to 6 months. Actually, I was on MTX for 6 months, at which point I told my doctor that it wasn't working, and feeling nauseous all of the time was not working for me. If the drug had worked, I might have switched to injectables, but I had no response to it. When I was switched to leflunomide, another DMARD, I got a much better result. Still side effects, but manageable considering that the medication was working.
I wish you the best.
At this point, and until the end of august when I see the rheumy, i am self medicating with ibupropin, and not that much. I have tried to go with no meds for a day just to gage the hand pain and the meds do take the edge off. I admit to being in denial and am terrified of stronger meds. How can one know if it will be a mild case or severe? If mild do you still have to go on strong meds for the rest of your life? Is it only by looking back that we know we made the right choices? Can someone talk about the fatigue portion of this disease?
A few different thoughts. The NSAIDs work best in their anti-inflammatory way when they are taken on a schedule. I'll tell you, it took over a week for my hand pain to fully creep back in, same for other joints. Because no one can predict who will have mild disease, with slow to little progress, every case needs to be addressed somewhat aggressively. Like you, I started off on NSAIDs for about 9 months, when it was clear that it was not enough, I also had extreme fatigue, where I was napping at least once a day, and needed to lay down throughout the day in order to make it through. This was with a toddler.
My rheumy has added in one med at a time. So almost 6 years after diagnosis, I am on two DMARDs, and an NSAID. There has definitely been joint damage, though not destruction, in that time. Is it possible that I am not being treated aggressively enough? Possibly. It's a bit of a balancing act.
Fatigue. . . . Yes. This is a major part of the disease, and is related to inflammation. When I was put on my first DMARD, after a few months I realized that my fatigue level was at a more manageable place. I no longer felt like I was moving through pea soup at all times. I could make it through the day with only one nap. I still get fatigued, but less so.
Clearly you and your rheumy will need to work on a treatment plan, and you can take things one step at a time. If NSAIDs aren't enough, you can try a different NSAID, or add in a DMARD like MTX. See if that works. Then go from there.
I really appreciate your story and helpful insights, as it helps put this into perspective. I can see how easily one can get depressed. I am stressed over all of this and overwhelmed. I am an expat living in China and will find out at the end of this month if the expat hospital in Shanghai can even deal with this at all. I will force myself to keep reading the comments and discussions on this site and am so grateful to have found it.
If you are interested in speaking to someone who has dealt with a lot of fatigue with her disease, seek out Frances on this board. That has been her biggest problem wi PsA. I’m sure she will give you all the help she can in that area.
I have had some bouts of fatigue myself, but that has never been my main issue (mine has always been tendon and joint pain). I understand how debilitating fatigue can be, so you definitely have my empathy. The meds can help this, but one has to give them time to work. It seems to be the trend that it takes a while for folks to get good results or even to find which med or combination is the best because each persons experience is different from another’s.
My best advice is to be patient.
Welcome. I'm new too and was diagnosed in April. I had to stop taking NSAIDS especially ibuprofen because I had presence of blood in my urine (still do - I"m seeing a urologist in Sept). My rheumatologist put me on sulphasalazine - a DMARD like MMX but not as strong. I am having some positive results from it and so far have been able to resist going on MTX. I must say however the is the hardest health issue I've ever face. It is mainly in my knees (and other joints) and has affected my mobility greatly. I am trying to stay with hope as I know my emotions also affect my health. I wish you all the best and I hope you'll share your experience and know you are not alone. I also think a glossary would help as there are so many new terms to use! Maybe I'll blog that one. All the best