@Seenie why does it seem like the drs try everything they can before giving biologics if biologics are really what works?
That’s a great question. I think it is mostly to do with cost: whoever ends up paying (whether that’s the government, your insurance, or you) needs to be sure that the job could not be done by something far less expensive. That said, I’ve never heard of anyone having DMARD treatment who says that it has been life changing for them. Getting biologic therapy certainly was for me.
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I know you asked Seenie this question, but as I had a very reluctant Rheumy, I’ll add my take.
In my case, whist I think the standard attempts for the cheap DMARDs to work was of course present, the other thing seemed to be a genuine fear / conservatism on the part of my Rheumy.
You see, while I felt my life was falling apart, I really didn’t look that unwell to him, and neither did most of his patients. He had around 400 patients on biologics, and had to visit a few every year in hospital with an infection he put down to the biologics. To him, they had gone from being almost healthy to really sick - so he is genuinely scared of the side effects.
Thing is, for many of us, the disease is just so devastating, that there is no question if it is worth the risk, but as he’s never experienced that first hand, it’s pretty evident he doesn’t see it the same way. I can understand his point of view - doctors are, first and foremost, trained to save lives and not put people at additional risk.
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Yup, that’s a really interesting experience. And we’ve seen the reluctant old-school rheumatologists do that before. The newer generation of rheumies, I think, are generally more aggressive in their approach, and more open to using newer therapies.
Jen75, what was the event/factor that finally prompted him to write you a script for a biologic?
From the rheumatologist’s point of view, on the one hand you have an apparently healthy-looking person who’s tired says they are in pain. You have several people in hospital for what you think are opportunistic infections as a result of biologics. You worry about them. There are 395 patients that you never think about because you only see them every six months for a script refill.
There is, however, solid research to support the view that early and aggressive treatment gives the best prognosis. I guess as a patient you have to push to go this route with some docs.
Mwitt, what has your rheumatologist got mapped out as a treatment plan for you?
S
PS I’m going to split this discussion into a new thread and re-name it, OK?
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I don’t know if mine was necessarily reluctant. I was diagnosed almost 11 years ago, and have been on a biologic for four and a half years (I think). The discussion didn’t really come up in the beginning. We went step wise, from NSAIDs, through a few DMARDs, and ultimately to a biologic. I was limited the first few years anyway, since I was nursing my little one. That may have been the main “delay” in getting started, but I did start plaquenil within a year of diagnosis.
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Good point, Stoney. I tweaked the subject line a bit.
So far it was prednisone and while in prednisone also start 6 tablets of methotrexate 2.5 mg and folic acid 2 mg a day. He has discussed other plans then that for now. He will be doing blood work and more X-rays down the line to see if anything changes. Seems like most people are on higher dosages of methotrexate than that. So I wonder if I’ll have to go higher but I guess I will just have to wait and see.
I think I have been really fortunate that when I went to my primary dr. The first time she took me very seriously and immediately referred me to what she says is the best rheumatologist in the area. She assumed it was maybe RA and said she wouldn’t bother testing me for anything because he would do all the testing.
Even though I present myself as well and put together. I feel he takes me very seriously and got right to trying to diagnose me and help me feel better.
I’m so thankful because I’ve read on here so many people that have gone soooo many year undiagnosed.
I was breastfeeding when I first started seeing him so I had to wait until I was able to wean baby. I did see that @Stoney was on some meds while breastfeeding. He never offered me that option. I do wish I had known that it was an option as we weren’t ready to end that but I was in too much joint pain to put it off any longer.
Well, I really was desperate enough because I knew I would lose my job for lack of energy if I couldn’t get better treatment, so I explained this, begged him and said I’d pay it - and did pay for the first couple of shots.
But I think the thing that really triggered him to change his mind was that after 8 months of prednisone, we did a bone scan, and at age 37(?) I had osteopaenia in my spine, which he thought was caused by the prednisone. Both of those things happened in the one appointment, and I walked away with a self-pay script for Enbrel, and he put an application in for a subsidised script that showed up 4 weeks later.
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I was a La Leche League leader. I went in having researched all potential meds. The meds that were safe were plaquenil and the biologics.
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Ugh wish I had known!
Oh this makes me want to get off the prednisone ASAP! 
Mwitt, it definitely shouldn’t be used as a long-term treatment, except in the rarest of cases, but does still have its place for short term rescue, which I’m still very thankful for.
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So agree. It’s rescued me lots too. And sometimes that’s so essential.
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Copay for biologics for most folks in the USA run 6 -12K a year, more if your 65+. thats the first reason for reluctance. The other is their efficacey is not quite what folks think. While very effective for axial symptoms, they are less so with peripheral stuff. Conseqeuntly most docs want to get those joints under control first. Sadly the DMARDs and NSAIDs do the best job of that. However when the axial symptoms (spine) is controlled the peripheral become less significant to most.
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Hmm, so question, because it’s not something I’ve seen well documented - is there a consensus on which is more effective for the very systemic symptoms?
Eg Eyes, liver, kidneys, lungs, heart, mild chronic vascular inflammation, white cell count - not things that many with PsA find significant (at least initially at onset), but if there’s a rapid, nasty onset at a fairly young age (ok, rare, but there are a few of us here because where else would we rather be?), then should we be jumping on biologics, DMARDs, or both?
I will admit I jumped on both.
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Its pretty much because of the cost and they use an evidence based formula to try drugs in a particular order.
Usually they try the more cost effective drugs first, if they work great you stay on those. If they don’t work or there are side effects then there is another set they try next.
If the second line drugs don’t work then you’ll get to try the Biologics after that.
Just the process they go through!
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Depends on Insurance and the Biologic. my Co pay was 5 bucks. AS there are programs that help with cost.
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I’m thinking that there’s a bit of a hangover from the days, way back admittedly, when PsA was seen as a milder(!) form of RA. I gather that Mtx and possibly other traditional DMARDs can be more effective, more likely to slow disease progression, in RA than in PsA. I think there are some rheumys, probably fewer as time goes on, who treat the two diseases identically and who tend to plod on with Mtx or some other trad DMARD as stand alone treatments longer than seems sensible for people with moderate to severe PsA.
Here in the UK the criteria for prescribing biologics for PsA is slightly more liberal than that required for RA, fewer swollen joints are required, for example. I tend to see that as an acknowledgement that they may be needed sooner for PsA. I’m not sure that acknowledgement goes far enough.
Does Mtx (for example) slow disease progression? I thought the jury was out on that one. I do agree that it helps with symptoms though, it’s a useful drug for those of us who get on well with it, and then of course there’s also the role the trad DMARDs play in propping up biologics by preventing antibody formation or whatever!
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@tntlamb, the reminder about biologic copays, especially after 65, gives me a sick feeling! The $6,000+ copays can be covered through the Enbrel Support Program here in the USA for anyone on private insurance. So @Mwitt, be sure and ask about Enbrel Support or whatever support program if you get any biologic. I’m paying $00 this year for my Enbrel…
However, I’m so SO concerned about the “over 65” costs! I’ll be 65 in September. I think as long as I keep working and stay on private insurance I’ll be fine, but as soon as I go on Medicare I’m screwed. And I really mean that because there’s no way we can afford nor would my husband agree to pay upwards of $1,000 a month for Enbrel!!! Ugh!!! I’m really getting sick of working and I keep tossing the idea of retiring around in my head…the strongest reason I won’t or can’t retire is losing Enbrel would be devastating for me. I doubt I’d even try Remicade, which is covered by Medicare. I’m so sensitive to so many meds—especially ones that can affect the liver—I wouldn’t want to chance it!
I do dream of the day I can relax more, draw some portraits and do all the fun things I’m missing out on now. But, I wouldn’t enjoy any of it if I was having the symptoms of PsA like I had 4 years ago! 
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