My name is Geoff and I'm in my mid-50s. have just found this site although I was a silent member of another site about 8 or 9 years ago. I can't remember the name of it but it was run by a lady named Fran and had a lot of good info particularly about the latest drugs..
My story, I was originally diagnosed with Ankylosing Spondylitis in early '82 followed shortly after with Psoriasis and then finally with Psoriatic Arthritis in late 1984. Between 1982 and 1991 I tried the full range of treatments from Gold injections to Methotrexate to acupuncture to The Pritikin Diet to faith healers and nothing really worked. In 1991 I moved to Thailand and basically lived on Indomethacin for 16 years. A couple of visits to different Rheumies in Thailand scared the hell out of me with their treatment recommendations. The worst one being methotrexate which I had previously tried back in the mid 80s and that dosage was 1x10mg tablet once a week with weekly blood tests and I had to check with my Rheumy for blood results before I took the next tablet. In Thailand the guy said to take 8x10mg tablets once a week and no mention of blood tests. When I asked he said I could if I wanted to but it wasn't necessary. The first dose knocked me down for three days with severe nausea and when the second dose was even worse I threw the lot away and basically self-medicated for the next 12 years which as it turned out wasn't the smartest thing to do as I now have the Mutilans type.
i ended up returning to Australia in 2006 as I was no longer able to work. Got back into the system after having a mild heart attack in 2008 and have been an outpatient at the Royal Brisbane ever since. I was back on methotrexate for a while until it started causing liver problems. I was scheduled to start on Humira about 2 years ago but a liver biopsy revealed that I had had Hepatitis B sometime in my past (presumably while in Thailand) and the fear was that the Humira would restart the Hep B. I have been on Leflunamide, Sulfasalazine and Naproxen for the last 2 years and I was hoping to start on cyclosporin shortly but I have just been given the all clear by a liver specialist who says I can start on Humira but must stop at any sign of Hep B activity. My next scheduled appointment with my Rheumy is 04 Nov so here's hoping.
I actually joined this site to find out people's experiences with the biologicals as there appear to be some pretty serious side effects. I am wondering if it is worth the risk although both my PsA and the psoriasis are getting to be unmanageable at the moment.
Big welcome, Geoff! You certainly have a lot of experience to share! Scary stuff, that Thai rheumatology … but then again, we’ve heard some pretty alarming stories from other parts of the world as well.
The biologicals, because they are so targetted, have very few side effects – certainly fewer than the really poisonous potions like MTX and leflunomide. In the long run, though, you’re right: there can be some rather serious consequences. But, as you know, there are very serious consequences from untreated or incorrectly treated PsA as well.
I often think of the risks that I take: I drive my car on highways, go on planes and ships, and (gasp) I cross busy streets. Those all have risks. I suppose I could say “I’m staying home, those risks are unacceptable.” But I choose to travel, to have a social life, and to participate in the life my community. I accept the risks because doing so gives me quality of life.
I am so sorry that it’s all becoming unmanageable. Glad you’re here.
When my Rheumy first suggested biologics, I said "NO WAY!" The very concept scared the crap out of me. I told him that the Psoriatic Arthritis wouldn't kill me, but the meds just might. His response (and this scared me even more....)? He said..."well, I hope not." Wait??!?? HUH?!?!?!?!? So, after further discussions, it seems that new evidence suggests that people who suffer from Psoriatic Arthritis are at a 75-80% increased risk of heart complications including inflammation around the lining of the heart, congestive heart failure, heart attack...etc. Also inflammation and fluid retention in the lining of the lungs. I left with a script for biologics and MTX, and have been on them ever since. Do I hate that I'm playing russian roulette with my liver/kidneys? Of course. Would I rather do that than die? Absolutely.
As for side effects...when I first started the Enbrel (I've been on Humira, Enbrel and Remicaide at various times), I was terribly nauseated - to the point that I couldn't eat for a week. After that initial week, and deciding to treat the nausea like morning sickness, I've gotten much better. The MTX also causes fatigue and nausea, but I power through it. It is worth it. My suggestion: nibble on saltines when you feel ill, test your comfort foods to see if they work (mac n cheese seems to be okay for me when I'm at my sickest - which is strange given that there is dairy in there), and sip 7-up or diet 7-up. If the nausea is too bad you can get a script from your doc for promethazine - comes in either a topical cream or pill. Also, there is an over the counter med called Nauzene that works pretty well for the icky feeling that isn't quite nausea, but kind of is. Best trick I've found is creative visualization. When I am at my most miserable I picture in my head the meds attacking the inflammation like a hoard of locusts. :) Good luck!
Hi Geoff! Glad you’re here and talking! I had a brief stint on MTX and it didn’t go well for me. Much better on Enbrel initially and I’ve recently switched to Humira. I don’t have any side effects from the biologics but I did have nasty side effects from the older more traditional stuff (MTX, sulfasalazine).
If you want a hundred different answers and opinions ask a direct question to the board about biologics in the medication section. Your head will probably spin! What’s so funny is that we all have the same thing and yet our diseases respond so differently to medication. I find it fascinating. Not particularly helpful when you’re looking for a consensus to help make a decision, but interesting nonetheless. Cheers!
I was dx with PsA in 1982, so I'll be we had many of the same treatments. My PsA is symmetrical, systemic, and almost all my joints (except my spine, until recently). More like RA.
I've been on one or another of the biologics since late 2001. I'm not dead yet :) I have much fewer side effects from the biologics than any of the other meds.
Geoff, welcome to our group! So glad that you found us.
I understand that a lot of people struggle with the medications decisions associated with this disease. I started Humira when my Psoriasis was at its absolute worst. It was awful (the psoriasis); I could not get comfortable, and I was simply miserable. I was elated that my dermatologist let me skip methotrexate and start Humira right away. The relief was miraculous. I started to shed plaques within the first two weeks (not everyone responds that quickly) and within three months the only signs that I has any problems with my skin was a slight pinkness left where the psoriasis was the worst. Two years later, I have very little evidence that I ever had psoriasis. For me it was a turning point in my life. I don’t regret it. The scary side effects are rare. I plan to LIVE my life for however long I am here, and suffering in order to hang on for a few extra years just doesn’t make sense for me.
So that’s my Psoriais story. Everyone here has a different one, and that is one of my favorite things about this board! I am so glad you found us. Whatever you decide, we are here to support you.
