My 12 year old son has recently been confirmed as having arthritis alongside his psoriasis. He's seen a consultant and had X-rays and blood tests and we are due to go back end sept. The Dr would like to treat with methotrexate or inta-articular joint injections under entonox. He has arthritis in 1 thumb, both big toes and one other toe. He has a mild pain in his hip which they think is caused by walking funny due to his toes. Other than that he isn't in pain. We need to decide what to do and would be grateful for your views /experiences of these treatments. We are keen to prevent joint damage but know these treatments have side effects (stomach problems etc). I'd be really grateful to hear about your experiences of treatments - good and bad - to help us decide what to do. The last thing I want to do is cause him other problems! Thank you!
Thank you - that's really helpful!
Do you mind me asking - you mention your PsA is fairly severe but has generally been low in pain - how is the severity measured? Is it in terms of joint damage, and does that not necessarily mean pain? I've started to read the many leaflets they've given me - and I noticed that Methotrexate can be given as an injection; I've heard quite a lot of people talking about stomach problems from Methotrexate and I was wondering if injections might be better in that regard - and if there are any downsides to that. Do you have a view?
Also, you mentioned that inflamatory arthritis affects the whole body - not just the joints - can you explain in what way it affects the whole body?
Last question (I promise!) - I also read in the leaflet that PsA tends to only affect the hands/feet - is that your experience of it?
Thank you so much in advance - we'd just like to be a little better informed before we go back to the consultant to help us decide on treatment options.
I'll certainly checkout Fighter26 too.
Thanks again!
Thank you - that's really helpful. It's just as important to us to hear the experiences of others as it is to hear the medical advice - helps to put it all into some kind of perspective. You've given me lots to think about. Thanks again!
Hi, scarlet,
You should definitely check out the “newbies guide” on the discussion page. It should have answers to a lot of your general questions.
As far as starting your son on medications, methotrexate us the first line drug for PsA in most cases. Yes, many patients report fewer side effects with injection vs. oral dosing. Make sure to request a prescription for folic acid (folate) to help with SEs too.
I wish you luck.
Hello again, Scarlet
My colleagues have done a dandy job of answering your questions, but I thought I’d throw in some of my own experiences. First, pain. Degree of pain is not a good indicator of disease severity or of damage being done. Before my diagnosis, I ached. My feet were sore. But I carried on. My diagnosis only came when there were erosions visible on plain x-rays. At that point, we realized that I have a high tolerance for pain, and that in my case degree of pain was not an accurate gauge of what was going on in my body. In my GP’s words, “You said you ached, when anyone else would have been in screaming agony.”
The first joints to be affected by PsA are USUALLY those in the hands and feet (fingers and toes). But if you delve further into the literature, any joint can get clobbered. In my case, the knees went first, then the joints in the middle of the feet, then the hips. Now I am having some issues with shoulders, I think. During all of this, my fingers and toes were mildly affected, which led rheumie #1 (who used fingers and toes as her main assessment sites) to say that my disease was mild, and that it did not warrant aggressive therapy. When I went to the next tier of specialists, who did a more comprehensive assessment, they said that my disease was severe and that I had a lot of damage. My only option was a biologic. Go figure. Moral of the story: if in doubt, get a second opinion. (BTW, by the time I got to the second specialists,my hips and the joints in the middle of my feet were “done”. And I can assure you, the irrevocably damaged joints do HURT. Except for my left hip, which is shot but doesn’t hurt and nobody understands why, but I digress.)
There’s a lot on this site about MTX. Some people do, indeed, tolerate the injectable better than the pills. Some also think that it is more effective when it doesn’t go through the digestive tract. Many of us inject – I do. (It’s the easiest, least painful injection ever.) I also take folic acid for side effect reduction. All that being said, I didn’t think that methotrexate did me that much good, until I had to go off it before surgery last year.
There are many seemingly unrelated conditions and symptoms that go with PsA. I have a lot of them: depression, irritable bowel, dry eyes, high blood pressure. There are others. This is a systemic disease, not one that attacks only joints. This is not your Granny’s arthritis (unless, of course, Granny had it too.)
My best advice to you: learn as much about PsA as you can being a lay person. This disease is poorly understood by many GPs, and (sadly) even some rheumatologists. Ask lots of questions. Don’t be afraid of getting another opinion. You need to become your own expert on this disease. You have to be able to do rheumie-talk. You need to know about every drug and each blood test. This is the best thing that you can do for your son.
I highly recommend the book I mention under Book Reviews, and do take a couple of hours to watch Dr. Arvind Kaul’s video on the Main page. Pour yourself a cuppa, though. It’s long.
Good luck to you and your son
C
PS I was at the ophthalmologist for a check up yesterday. Everything was fine. At the end of the consult, I said I’d see him in two years. His response was “No, with what you have, I’d like to see you every year.” OK then. There’s another thing for you to think about.