The story of my health or lack thereof

[Jon2]

Before anyone even starts reading this it's a little long and I don't even know if I am posting it in the proper area, if not I hope someone can help by redirecting it to where it should be, Thanks.

I guess I'll start at the start.

When I was 8 months old I developped psoriasis when I was first given cow's milk and none of the doctors believed my mother when she said cow's milk made it worse yet when I was given cow's milk it flared and when I was not it would subside. Unfortunately milk is a hard product to avoid.

Fast forward to when I'm 8 years old. Mysteriously the ends of my fingers swell and many doctors are baffled, finally my mother is directed to a rheumatologist who says I have arthritis but nothing is done about it as I am not complaining about pain yet.

Fast forward again to when I'm 17 and I'm put on a drug study in which I will be taking Enbrel for my psoriasis which at this point covered 33% of my body. After not very long my psoriasis has gone into remission, retreating to my elbows and knees and my fingers, which had become sore by this age reduce in swelling. I am on Enbrel until I was 20 when I can no longer stay on the drug study as it was intended as a study of how it affected younger people and the extended study was at it's end.

I am now 25, turning 26 in April, was been forced to quit the job I went to school for (I was apprenticing to be an electrician) when I was 22 due to increasing activity in my arthritis, my psoriasis has also made something of a comeback though I have been able to keep it under control with various non-perscription methods. I smoke pot daily to deal with the pain of my arthritis. I have tried Methotrexate orally and through injection which gave me such stomach issues I was not able to eat properly for a year after being off the drug during which time my weight fell a lot more than my family liked. I have since been able to recover my weight but I must still smoke pot before meals or I feel too nauseous to finish what I am eating. I was put on sulfazalazine which I had to stop immediately as it made me loopy during the day and woke me up at night with extreme stomach pain and diahrea/vomitting. I am with a new rheumatologist because I have moved a lot and he would like me to take enbrel again. While I was on it I did notice that I felt better but I have not been able to find much in the way of long term studies on how the drug remains effective and safe.

I am wondering if there is anyone out there that has been on this drug for 10+ years and how well it is working still as I have a friend who is on remicaid for her ulcertive collitis and it has begun to lose it's effect after several years and I fear the same may be possible with Enbrel as I have read, on forums, that some people have indeed found it began to wear off after 5 years or after discontinued use after becomming sick and attempting to start taking the drug again but I like to gather a lot of information as there is a lot of information and misinformation out there.

All of my physical ailments aside I am extremely intelligent which makes sitting around doing nothing even harder as I get quite bored and I also was diagnosed with ADHD as a child and so I have way more energy than I can ever deal with because I get sore after too much activity....I'm kind of at the end of my rope, I have no idea what I'm going to do in the long term if enbrel is a limited time thing...

Edit: I should add that I hate doctors, pharmaceutical companies and all of the products they make as they have no real investment in the people taking their drugs, only the money being made off them so I always find it very difficult to take the medication I must as I know it all perpetuates the system I abhor and I am always open to possible non-pharmaceutical options to deal with my health.
End Edit.

Thanks to all who read through this, I know it's a little much.....

[Seenie]

Hey, Jon, I think you did quite a good job of summarizing your situation. And your situation isn’t so good, is it?

It sounds like you are thirsty for good, reliable information. There’s lots here – we do try to keep things scientifically and factually correct, although there are all kinds of different approaches and views amongst our many members. You may also be interested in a book which I recommend in Book Reviews (above). It’s probably the best and most complete guide to PsA there is. The Kindle version is a bargain, and if you don’t have a kindle you can always download the software that will have you reading it right on this machine in a few minutes. Knowledge in the case of this disease is very important, because it will help you make good treatment decisions with your doctors.

I’m glad you have a new rheumatologist, and that the rheumatologist wants to get aggressive with your disease. Aggressive treatment is your best bet for having a relatively normal life with PsA, and for avoiding permanent and debilitating joint damage. As for long-term efficacy goes, some people have success with one biologic for years. Others have to switch to a different drug after a while. But there are so many drugs, and more coming every year, for treating this disease. And make no mistake about it, PsA is a thief and a vandal: it steals your life and it can wreck your body. You need to fight back.

As for long-term effects of the biologic agents, yes, that’s always a question and a concern. But think about it. What are the long-term effects of living with untreated or under-treated PsA as you are now? What will this disease do to your life and your health over the long term? You do need to consider quality of life, and it sounds as if you are struggling to maintain a degree of quality as you are.

I’m glad you joined up, Jon, and I hope that you find this a good place for support and information.

Seenie

[Allan]

As always Seenie has given good advice. I would only add that I have been on Enbrel for nearly 5 years. I have found that while it keeps my psoriasis under control it does allow some PsA inflammation to occur. On it alone I get less and reduced severe flares but with added help like a low dose of prednisone in my case or Arava or methotrexate in others, it keeps it under about 80% control an allows me to live a reasonable life. Inflammation still gets through this medicine 'net', I still have pain and I still can see some joints still deteriorating BUT I can live a fairly active life whereas I used to be almost completely incapacitiated. I also take Celebrex.

Good luck in finding what works for you.

[Jules_G]

Hi Jon, your frustration with the disease and the system shines through your post but you are clearly a very bright young man .... and I re-emphasise that you are a young man with a very long and potentially productive life ahead of you.

It's great that you saw the benefits of Enbrel in the study during your teens so you know this drug can work and work well. Take the best medication that is offered to you now - Enbrel. If/when it loses its effectiveness in the future there are other biologics to try. None of us knows what tomorrow holds, nothing in life comes with a guarantee.

Maybe in your lifetime the breakthrough of all breakthroughs will be made and a cure found or another way of modifying the progression of this disease. But until that time please don't let your dislike of the system feed the damage that the PsA is already doing to your body.

And please talk to your doc about your digestive issues, there are lots of things like Aloe Vera which it may be safe for you to take which will help calm your tummy before/after a meal. There have recently been some posts on here about cannabis (you can look them up using the search bar) and its uses in pain relief etc but one thing I also know has been proven is that it can cause paranoia .... so please just be aware of this and make sure you're in control of the pot and not the other way round.

I hope that things work out for you quickly, it would be great in a few months time to hear from you to say you're feeling so much better that you're finishing your apprenticeship and getting back to the work you clearly love.