Newbie ... when to use medication?

[Turian]

Somewhere around 15 I discovered I have a mild P and looking back the PA started kicking in around 21. Until now I use a NSAID only when the PA really bothered me. Since it only effected my wrists and hands and it often was months that I didn't have to use anything that worked fine for me.

My knees were already making a fuss last year but since a couple of weeks now a lot of other joints suddenly started to join. Still being 29 I have a long life in front of me and I want to keep it as pleasant as I can. I was now wondering how most people handle it? Do you only use the meds if you need it or do you also use it preventively?

I'm not a big fan of using any meds when it isn't really necessary so I'm trying to figure out what would be smart in this case.

[ouchyk]

Hi,

That's a tough call, knowing when to use medications....the problem is with PA is that you don't know who will be a recipient of moderate-severe disease.

Some doctors will put you on a biologic or systemic from the get-go to prevent possible joint changes/damage. Other's will wait until PA rears it's ugly head to the point where inflammation cannot be controlled...and use medications to control that inflammation then back off when it remits. I think now a day you might find more rheumatoloigsts using the heavy hitters as with more research they are finding that PA is not as " mild " as was thought only a few years back.

" Like the skin disease it is associated with, psoriatic arthritis can cause symptoms that periodically show up, or flare, and then subside. Although psoriatic arthritis was originally thought to be mild and non-progressive (that is, that it would not worsen over time), recent data suggest that many of those affected will experience persistent inflammation and need treatment to prevent joint damage that can affect your ability to get day to day things done. Fortunately treatments are available and effective for most people. "
How psoriatic arthritis is treated

Unlike rheumatoid arthritis, which usually requires constant treatment, psoriatic arthritis may only require therapy when symptoms arise. When they subside, therapy can be stopped until further problems develop. Initial treatment usually consists of non-steroidal anti-inflammatory drugs (NSAIDs) such as ibuprofen (Motrin or Advil) or naproxen (Naprosyn).

If the arthritis does not respond, disease modifying anti-rheumatic drugs (DMARDs) may be used. These include sulfasalazine (Azulfidine), methotrexate (Rheumatrex), cyclosporine (Neoral, Sandimmune) and the more recently available “anti-TNF agents” such as etanercept (Enbrel) and infliximab (Remicade) and adalimumab (Humira). The anti-malarial drug hydroxychloroquine (Plaquenil) may be effective, but some people taking this will experience a flare of their psoriasis, so it is usually avoided. Azathioprine (Imuran) may benefit those with severe forms of psoriatic arthritis. For severely swollen joints, corticosteroid injections can be useful at controlling the inflammation. Surgery can be helpful to repair or replace badly damaged joints.

http://www.rheumatology.org/public/factsheets/psoriatic_new.asp


My uncle used MTX for three years and his PA went into a lifelong remission ( well so far ), he was left with joint damage that requires surgery but he opted not to have it done, he really doesn't care as it's just one finger and it doesn't bother him...he no longer treats his PA as he feels it isn't necessary due to this remission and uses lights/topicals for his psoriasis and does quite well. His PA was in two joints, so although considered " mild " as in joint count...he was the recipient of damage...

good luck to you.
Karen

[docmks]

Somewhere around 15 I discovered I have a mild P and looking back the PA started kicking in around 21. Until now I use a NSAID only when the PA really bothered me. Since it only effected my wrists and hands and it often was months that I didn't have to use anything that worked fine for me.

My knees were already making a fuss last year but since a couple of weeks now a lot of other joints suddenly started to join. Still being 29 I have a long life in front of me and I want to keep it as pleasant as I can. I was now wondering how most people handle it? Do you only use the meds if you need it or do you also use it preventively?

I'm not a big fan of using any meds when it isn't really necessary so I'm trying to figure out what would be smart in this case.

Hi there, Welcome to the boards. It's hard to know what to say or recommend. As Karen said, there are some options. What finally took me to a biologic was when my skin started getting worse and my pain level around my joints increased. So I basically waited until it was impairing me more and more. The other reason that I went on biologics was that I worried about joint damage. I have had PA steadily for about 5 years and I've avoided joint damage so far, and considering how bad things have been I think that's pretty good. Good luck with your decision, MK

[RichJ]

hi turian,
sorry i can't help much but welcome to the p family. you have met some of the wonderful people on here and will find alot of great info. welcome and nice to meet you.

have a good night all

richard

[JesseLou]

I believe in the aggressive approach. PA is a progressive disease, which means it will attack additional joints as long as it goes untreated, and NSAIDS treat only the symptoms, not the disease. You have already had quite a bit of progression, so my advice would be that you need to see a good rheumatologist and get a medical opinion about your best course of action.

[nla]

JesseLou has given you the best advice. Get an opinion from a good rheumy. While I am a lot older than you are (59), I can tell you first hand that PA is quite progressive, not to mention destructive and disfiguring! Mine is in my hands and wrists. I waited until I could no longer use my hands before seeing a rheumy. She suspects I have had it for several years. I have been on Enbrel for 3 1/2 years now with good results but I also have 2 deformed fingers on each hand. I regret that I waited so long! The damage to those fingers has been done and I can never get that back.

Be safe! Get into a rheumy for a good going over and some better *medical* advice than I am giving you :)

Nancy

[1WeekAtATime]

Turian:

I think we've shared somewhat similar histories, but mine was traced to medicine I must take. Around 14 yrs, I started getting psoriasis symptoms on my scalp, though it was not correctly diagnosed until age 18. I've been battling with plaque psoriasis since, and recently tried using Enbrel, just to give it a shot. Flare-ups had gotten to me, and although Enbrel really helped, I had to stop taking it because of some nasty injection site reactions (nothing too bad- just a few small red rashes followed by a large, hot itchy spot that has since healed.)

After that, my psoriatic arthritis got worse (I'd had knee trouble since 14, but now it was dominant in a few places with bad flare-ups.) It's been tough, and I just registered for a parking pass because I have to travel big distances on foot at college. I'd love to use NSAIDs like Ibuprofen forever, but I know it can bring on stomach ulcers.

Most recently, I thought about trying something like Enbrel again. I can use Clobetasol lotion for the plaque (as of right now), but I really cannot exercise the way I want to, I cannot wear the shoes I like, I cannot squat, I cannot sit on the floor very easily, and it's a pain in the butt getting out of bed!

My new psoriasis specialist dermatologist wanted to put me on Methotrexate (abrv. MTX, also called Trexall), and it was a little traumatic. I'm sure you've started looking around, but TNF meds and biologics can increase chances of getting cancer, in general. MTX also can cause other scary bodily ailments, and you have to get liver biopsies every few years. Also, you can't drink, you must stay out of the sun, you have to take folic acid supplements, you can't take Advil or many antibiotics, etc. or you will poison yourself. It seems very drastic, and although it's a once-a-week pill, you have bloodwork to do once a month anyway.

The other two options I'm familiar with are Humira and Remicade. I don't know how effective Remicade is, and although you cannot start and stop it, it's not bad- a 2-hr infusion ever 8 weeks. The worst side effects to me (besides the cancer thing) are just that you can't have a live vaccine on it. If you don't want to administer medicine often or on your own, go this route.

Humira is just like Enbrel, but with less frequent injections- every two weeks instead of every week. The injections aren't too bad- you can use a pen-device instead of an actual syringe. I'd say start with one of these- just give it a try, and you might be surprised. I know Enbrel worked wonders for my joints (You probably won't know how lucky other people are until you try it- not matter what I say), and my doc said that you can go off and on once or so without you body rejecting it like Remicade. You do still have to do bloodwork, though.

So, in summation, give self-injections a try if you want to start somewhere. If you want to take the risks of MTX because it's a pill, be careful. And if you'd like to just get going with lifelong treatment, go for the Remicade.

As for me, I'm still cowering in the corner, eating Tylenol until I can make a good decision!

[Turian]

Well .... I did see a rheumy a couple of years ago who prescribed me the NSAIDS. Only to use when necessary.

I guess since the PA is progressive I'm just going to make a new appointment to make a new plan for the next couple of years. One thing I know for sure is that I'm not a big fan of injections ;) (and that's big understatement)

I guess that I'll wait what the rheumy comes up with then.

[AnnieB]

I don't love giving myself the Humira injections, but they aren't so bad. It only stings for about 5 seconds going in. Sometimes it itches a bit around the injection site for a few days. I like the pen because I don't have to see the needle! (PS: I read all the info about cancer risk and decided to take this anyway. Since people with RA and PA have a greater risk of getting lymphoma as a result of their inflammatory condition, it is not totally clear if the higher risk of lymphoma rate among people who take biologics is due to the drug or to the underlying condition. But I want to keep track of the research.)

http://www.medscape.com/viewarticle/521854

"TNF-blockers have also been linked to an increased rate of lymphoma in clinical trials. In the controlled rheumatoid arthritis trials, lymphomas were observed in 2 of 1,922 adalimumab-treated patients compared with 1 of 947 patients receiving placebo. In addition, combined data from controlled and open-label studies (median duration, 3 years; 8,500 patient-years) indicated that the rate of lymphoma was 0.15/100 patient-years, a rate 4-fold of that expected in the general population.

The FDA notes that malignancy rates derived from adalimumab clinical trials cannot be compared to that of clinical trials for other TNF-blockers and may not be indicative of rates in a broader patient population. However, patients with rheumatoid arthritis and especially those with active rheumatoid arthritis are at higher risk for developing lymphoma."

[kestrel2008]

I think the goal is to take the drugs to avoid the flares and the damage rather than taking the drugs when the flares happen. PA is so destructive that we really need to take it as prevention, because taking it as treatment is way too late.

On one level, I'm not a fan of medication either but on the other hand, I'm very fond of a happy, productive life.... given the alternatives, I take the drugs on a regular and consistent basis regardless of whether it is a day I'm on painkillers using a cane or the days that I can go jogging. We have good and bad days both on and off the meds but I'm pretty sure that my ratio of good days to bad days is a lot better on meds.

As for the risk... I'll take the risk, in order to live a better life.