Plaquenil, so far, has been like squirting a water pistol on a brush fire : (

General
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Hi everyone. I hate to whine, I really do. But waaaaaaaaaaaaaaaaaaaaahhhhhhhhhh. OK, I feel better. Now, here are my thoughts and questions. I have been on plaquenil for about 6 weeks. I thought I was seeing a glimmer of improvement a couple of weeks ago, but it just turned out to have been one of those random good days I have every now and then when I feel 1/3 of the way decent.

The last three days have been really bad. I am hobbling around and last night, it felt like my hips entire right leg was being crushed. No matter which position I tried in bed, I could not get comfortable. I finally resorted to xanax to knock myself out. I might have slept four hours....

I am wondering what I can try next. My doc said the next step would be methotrexate and remicade. Some on here seem to like Enbrel. I would love to hear others' stories about their treatment plans and how they began and evolved, etc.

I know that in some ways it seems futile to really want to know what I actually have, but before I start taking potentially life threatening medications to treat a shadow, I want a dang good reason other than pain, which might be treated with steroid injections or pain medications.

I am seronegative and all of my other bloodwork is within normal limits. I had a drastic improvement on prednisone, so my rheumy feels I do have inflammatory arthritis that is autoimmune and presents more like PSA than RA but other than my nails and a small patch behind my ear ( which a dermatlogist didn't want to "lable" as psoriasis ) I have no other signs of psoriasis. I am really having a meltdown here. Sorry for the rant. I just want to have a reasonable plan and see some results.

Thanks for listening. I hope you all are getting good results and having a pleasant day.

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Hi Mimi,

From what I've read, there is no correlation between skin symptoms and joint symptoms in psoriatic arthritis, meaning you can have really bad PsA, and very few or maybe even no skin symptoms at all. (It can work the other way around, too, where you have horrible skin symptoms and no joint involvement.)

I face the same issues you are describing--nothing usually shows up in my bloodwork (although I have had a couple of random positive RA titers). I asked my rheumy whether she thought I had PsA or RA, and she said, clinically, it does look more like PsA because of the specific joints involved. BUT, she said, the distinction is an academic one, since RA and PsA are treated with the same medications. And, you can have a positive RA latex test without having RA. For example, some infections may cause you to have a positive RA test. But she said she really wasn't concerned with making an absolute determination, since the treatment is the same whether you have PsA or RA. Remember, this is MY rheumy talking, and I suppose other rheumies could disagree.

I went kicking and screaming into treating my arthritis with DMARDs, but the decision has been a beneficial one for me thus far. I feel much better with treatment than without. (I'm using plaquenil and MTX). There has been some research lately that seems to indicate that MTX is not a good DMARD--that it may do a good job of mediating pain, but may not slow the progression of joint damage. MTX has long been the standard of treatment for PsA, and I believe it will be some time before this research will be accepted by the rheumatological community as a whole. Most likely, they will want to see these studies repeated with the same results many times before they disregard a medication they have believed in for decades. In the research world, it's pretty standard to repeat studies many times before accepting results as fact. That said, there are many rheumies that already accept this research as fact.

Personally, my own decision has been not to cross the line into the biologics as yet. I haven't closed the door on that option, but I'm just not ready, myself, to try those yet. Many people do favor biologics and get a great deal of relief from them. And, research shows, they are better in the long run at showing a decrease in joint damage than MTX and/or plaquenil. I don't see any rapid changes on my x-rays as yet. If I did, I absolutely would consider changing to a biologic immediately.

I guess another question I would have is why your rheumatologist favors remicade as a first line biologic for you. I'm not suggesting this is not a good option. I just wonder how your doc chose remicade. If you get an answer about that, I'd love to know what his thoughts are. My own first option would probably be remicade because it's the only biologic I can get coverage for.

The bottom line in my mind is this: I want to control pain AND slow progression. Pain control absolutely is important. But, even more, I want to slow the progression of the disease so that I end up with the least joint damage possible. NOT treating is NOT an option. I fear the damage more than the pain. If they ever do decide with certainty that MTX isn't doing its job as a DMARD, I most likely will flee to the biologics!

It's a tough decision, and I empathize.

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Yes, I did begin with plaquenil and add MTX about four years later.

I don't find tramadol to be a big gun for me. I use it during the day time, because it doesn't make me drowsy. At night I use hydrocodone. I have a great deal of difficulty trying to be comfortable at night. I've pretty much given up the idea of being able to sleep in a bed; my hips just won't let me. I sleep in a recliner now. I can recline in bed for about four hours on a VERY good night before my hips drive me out. Without hydrocodone, I think, I wouldn't sleep at all.

My experience with plaquenil and MTX has been that I feel pretty good at times, although I still have to be very careful about what I do; I still have limitations. Plaquenil helps with fatigue in a very real way, for me. The couple of times I've tried to stop that drug, I landed on my face with fatigue. (Not literally, but it was pretty bad.) MTX seems to be helping the pain and inflammation better than Plaquenil. But I believe there is a synergistic effect between the two, so that more happens because they are being used together. The whole is more than the sum of the parts, if you get the drift. Is it conservative? Yes. Are there potential side effects? Yes. Are serious side effects quite rare? Yes. I can deal with that.

Sometimes I feel grateful for a conservative doctor. Other times I want a cowboy, but mostly I'm happy to try conservative measures first. Keep thinking...you are thinking about the right things, IMHO. I'll keep an eye out for further posts in case you still want to bat this around a bit. I know it's a tough decision.

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My pleasure. Keep me posted!