I've been reading through some of the discussions here for a couple of weeks and find this site very informative and helpful!
Today I became a member because I finally have a "sort of" dx. The rheumy dx'd me with inflammatory arthritis and ulcerative colitis. He doesn't see psoriasis, but I think I may have had it in my teens and twenties (I'm now 58). I believe it's probably PsA because of the tendon and ligament pain I have along with the sausage fingers and joint pain that comes and goes in most of my joints.
I have many other symptoms, some I didn't even notice until the rheumy asked me about them. Fatigue and lover back pain are the worst. I can keep going with all of the other pains, although it does slow me down quite a bit.
There doesn't seem to be any Psoriasis in my family, but my uncle also has "inflammatory arthritis" and my cousin is suffering the same symptoms as me. She's still waiting for a dx. Several years ago, my daughter was dx'd with Behcet's Disease. It's a very rare autoimmune disease. Fortunately, she seems to be in remission.
I'm starting injectable Methotrexate next week. I'm very excited at the thought of feeling better, but am also nervous about it. I have some questions that I will post in the medication section later.
Anyway, thank you for listening, and thank you for making this site great!
I think we all go through the process of piecing things together. A couple of years after diagnosis I found my diary from 1972, when I was 16. On one page I'd drawn a picture of me & some strange contraption .... my idea of what an x-ray machine might look like. And then I remembered that I'd had a very swollen left knee back then and had an x-ray eventually but it showed nothing definite. Fast forward nearly 40 years and the same knee swelled up again, eventually contributing to my PsA diagnosis.
It is good to hear that your daughter is in remission.
Lots of us here have experience of Methotrexate (mine was mostly very good) so I'm sure that will be a fruitful discussion.
Yes, it's funny how things seem to click while trying to figure out this disease. I've never liked running. Whenever I run, I get stabbing pains in my ankles which I now think is linked to the tendon problems. Sometimes even walking will cause the pains with every step.
I've already learned some very useful information about Methotrexate from doing a search on this site. For instance, the not feeling so well the day after the injection. That's very useful when deciding what day of the week I will inject. Also, I've learned to drink lots of water and to take more Folic Acid than I'm already taking. I take 1600 mcg, but am increasing it due to the remarks from some of the members here. I want to do everything I can to help the MTX work for me.
I'm glad you had a good experience with the MTX...it gives me more hope!
Welcome! You will find lots of odd random pains with this disease. We all have specific trigger points and others that follow suit. I just no longer pay attention to the ones that don’t last at least 2-3 weeks anymore but everyone is different. Hope you get good results from MTX the side effects can be hard on some but many benifit greatly from it! Yes, things suddenly click more and more once you get a good understanding of what the disease is and how it effects us all especially when there is little or no family history ( me too). This is a great place to start your journey.
Yes … the whole “piecing it together” process is both interesting and scary. For a while I remembered this or that puzzling symptom happening and realized that it, too, had been part of the PsA picture. Not long ago, I remembered some out-of-whack blood work that I’d had that the doc commented was a bit unusual. When I looked it up, sure enough, it was typical of this disease.
One of the problems in diagnosing PsA is that the signs and symptoms can be seemingly unrelated: skin “things”, sore joints, transient aching, fatigue, etc. And any of those can be attributed to any number of “normal” causes. It really is a devil of a disease to pin down!
Ditto x 4. Our stories are all unique but similar in so many ways! I, too, am the only one in our family who has psoriasis or PsA. Funny thing is, though, my dad had weird “fungus” toenails that never improved with antifungals. Hmmmm…but he also never had any form of arthritis.
It’s all so annoying and, as much as I love it that I’ve met some really nice people on here, it sure would be nice to say goodbye to PsA for good. I’m one of the lucky ones who so far has had good results from Enbrel–but the joint damage is ever present and nothing but pain pills can help that, and for the most part OTC pain pills are nearly useless for me.
So, hopefully, Marlene, you will have started mtx before too much damage has occurred. And, it’s good you’re doing your homework before jumping in not knowing what you’re getting into! The people here are so helpful and understanding. We all pretty much know what you’re going through as far as your PsA symptoms.
I’m glad you found this site–you’ll get lots of information and support here!
Welcome! You will find lots of odd random pains with this disease. We all have specific trigger points and others that follow suit. I just no longer pay attention to the ones that don't last at least 2-3 weeks anymore but everyone is different. Hope you get good results from MTX the side effects can be hard on some but many benifit greatly from it! Yes, things suddenly click more and more once you get a good understanding of what the disease is and how it effects us all especially when there is little or no family history ( me too). This is a great place to start your journey.
It will be interesting to see what odd ailments of mine will go away with the MTX. For instance, I've had a lump in the ball of my foot for about 5 years. The podiatrist said that my bones were too close together which was causing inflammation. I am hoping that will go away!
Also, with this disease, not everyone has the "typical" symptoms. Besides not having Psoriasis, I don't get fevers. In fact, my temperature is always very low in the 95s and 96s. I haven't asked my rheumy about that yet. There's been so many more important questions for him.
I'm still feeling elated at getting the dx even if it is vague. The main thing is that I will be on medication that will help all of the autoimmune processes going on in my body!
Seenie said:
Yes ... the whole "piecing it together" process is both interesting and scary. For a while I remembered this or that puzzling symptom happening and realized that it, too, had been part of the PsA picture. Not long ago, I remembered some out-of-whack blood work that I'd had that the doc commented was a bit unusual. When I looked it up, sure enough, it was typical of this disease. One of the problems in diagnosing PsA is that the signs and symptoms can be seemingly unrelated: skin "things", sore joints, transient aching, fatigue, etc. And any of those can be attributed to any number of "normal" causes. It really is a devil of a disease to pin down!
Hi Marlene57, ditto for me too. For me, understanding what is going on is a HUGE part of being able to deal with it and I've had many 'ah ha!' moments in my journey too. Fingers crossed for you and the mtx.
Hi Marlene57, ditto for me too. For me, understanding what is going on is a HUGE part of being able to deal with it and I've had many 'ah ha!' moments in my journey too. Fingers crossed for you and the mtx.
