Does this sound familiar?
Posted , 10 users are following.
I am 33 have been diagnosed with PSA in the last couple of months and started on otezla. I have had psoriasis on my palms and heels for 7 years and my mom has psa and no psoriasis. I want a diagnosis, but I want to make sure I'm not being to eager to accept this one. My aches come and go and often affect different joints in different days ( always the same joints, just not the same ones each day) does that make sense? Almost always my hips and knees bilaterally and my right pinky and ring finger and knuckle but sometimes my left elbow, sometimes my wrists, sometimes other fingers, sometimes my ankles. It's not worse in the mornings but at night. I'm tired a lot and when I'm in pain, I can hardly sleep bc my hips and knees hurt. My thumbnails seem to be separating a bit on the sides bc they are turning white like the tips. So, I know I have some symptoms and others that different. I see a rheumatologist next month, but sometimes I feel like I'm being a baby and I hypochondriac. Does this sound familiar to anyone?
0 likes, 30 replies
ruth010 sara71168
Posted
Hi Sara, sorry to hear what you're going though, but I'm afraid to say it does sound like PSA. Although everyone's symptoms seem similar, each person seem to experience differing amounts of pain, and differences in which joints are affected. The medications can take several months to kick in, but even if they make a small difference then it will make a difference to your day.
Mine started with a pain in the top of my foot for four months which then went away. Then I had plantar fascitis in the other foot for four months, and then the other foot started hurting again. It was agony, especially in the morning. Eventually one of my toes swelled and about twelve weeks later a consultant mentioned arthritis. About 18mths later the toe next to it went, then about 12mths after that a finger and toe went... And so it continues. I'm on methotrexate but its been 3mths and I can feel more joints going.
My long winded point is try the meds, because if they help to stop it getting worse then you'll feel better sooner.
My next appointment isn't until march, so I'm relying on the painkillers on the bad days, and trying to rest on my days off.
Look after yourself and remember it is OK to be upset, but remember to do things that make you happy and take your mind of it, and give you a break from it.
sara71168 ruth010
Posted
shaz6098 sara71168
Posted
If you are seeing a Rheumatologist next month, he/she should be able to help. Hopefully, they may be able to refer you for x-rays / scans to check what is happening. If you feel that the pain is too much, maybe you could go back to your GP in the mean time?
Good luck
sara71168 shaz6098
Posted
Thank you. I just wanted to know if other people had the symptoms that were quite textbook . I certainly didn't want to waste anyone's time by making and going to appointments that perhaps were unnecessary. There's just not that much literature out there about this compared to other diseases and I was curious to hear about other people symptoms before their diagnosis
ruth010 sara71168
Posted
You're definitely not wasting anyone's time if you're suffering so much. It is easy to dismiss the worry when you're having a 'good day', but if you have an appointment make sure you go with a note of the pains and symptoms that you've had. I can remember crying in frustration because I couldn't even get to see a GP, and it took several before one referred me to a rheumotologist. Its much better because they deal with this every day and they're there to help you cope with it.
You do learn to adapt, but it is very frustrating, especially when you don't know what will cause you a problem next. All you can do is listen to your body and seek help when you need it.
sara71168 ruth010
Posted
ruth010 sara71168
Posted
You're welcome, I only wish this condition was an easy fix. Don't forget to let us know how you get on.
shaz6098 sara71168
Posted
Hi Sara,
I saw a Rheumatologist as I have arthritis in my fingers, thankfully, no rheumatoid markers! He also told me I had carpal tunnel, which the nerve conduction tests have confirmed. The last letter he sent to my GP mentioned that he could not rule out 100% that the arthritis in my fingers is not PSA. I am already on 20mg MTX per week, so either way the MTX is helping my psoriasis and my hands.
I have a family history on my maternal side of psoriasis. Also, arthritis, but I am not aware of any of my family having PSA (that's not to say that they didn't).
I hope you manage to get some answers soon though - sometimes the not knowing and waiting can be very unhelpful and unsettling!
Good luck x
sara71168 shaz6098
Posted
Thank you. Yes it's been a frustrating road. Especially waiting for the derm's medical assistant to get the referral sent to the rheumatologist to get an appt. or even just to call me back. I finally just begged the rheum ppl and promised to bring one to the appt. and they agreed bc I have a doctor friend who made a call. What about the pts who don't have a doctor friend to step in?
shaz6098 sara71168
Posted
Hi Sara,
Are you in the UK? My GP referred me to the the Dermatologist then another GP in the same surgery referred me to the Rheumatologist. Even if I had a friend who is a doctor, I don't think that he/she would be able to pull any strings to get my appointment quicker.
If I remember correctly, once the GP has made the referral, you have to be seen within a number of weeks.
Shaz x
sara71168 shaz6098
Posted
No, I'm not. I'm in America. I have a PPO insurance plan. I don't technically NEED a referral, but the rheumatologist that comes so highly recommended, not just from my dermatologist, but the physicians I work with, requires a progress note from whoever wants you to see them saying why. I can't seem to get this note from my dermatologist, which I'm guessing is due to her medical assistant either sucking at her job or being completely over worked. Either way, I'll see my dermatologist again before my rheum consult and I'll get it then. The doctor I work with called the rheumatologist personally, who then had her receptionist call me and schedule an appt. under the assumption that I would get them the progress note before my appt. they didn't help me get in SOONER... they just helped me get an appt made without a progress note.
shaz6098 sara71168
Posted
Good luck x
robert271163 sara71168
Posted
It took my doctors 2 years to refer me to a Rhumy who within 2 mins of looking at at diagnosed PSA, by which time a lot of damage has been done to my Joints, The progress since has been long winded as the medication they use Sulfasalazine/Methrexate etc can take up to 3 months to start working and thats if they agree with you, but there is light at the end, once diagnosed you can then start to move forward. Meanwhile take painkillers on the bad days.
sara71168 robert271163
Posted
robert271163 sara71168
Posted
sorry for late reply, I use Tramadol,Co Codomol and Ibruprofen