Hi! I have had Ps and PsA for almost two years. I went into remission after about 8 months of high dose naproxen & dietary changes, but symptoms came back with a vengeance this past winter. After a brief period on indomethacin, which I did not tolerate well, I went back on high dose naproxen. However, it is not managing my symptoms and inflammation has spread to many more areas in my body, and I am not obtaining relief from the enthesitis, anchilles pain, chronic fatigue, etc,... Also, this summer I have started to experience severe histamine intolerance, probably due to the naproxen.
The doctors suggested I switch medications...
Celebrex - not too keen on this one because of Vioxx
sulfasalazine - the side effects scare me, particularly the liver
methotrexate - again, side effects scare me
While I left with a script for sulfasalazine, I really have no intention of filling it or taking this medication.
After some brief research, by process of elimination, my heart is set on a biologic.
Putting financial barriers aside, would a physician prescribe it if I ask for it? is it wise to jump straight to a biologic? do I need to fail on the other medications first? anything I should consider first?
I am sure a biologic is not the panacea, but desperately seeking to get my life back (while I still can), exercise, feel normal again... :-) These are supposed to be the most productive years of my life, but not succeeding at anything...
My heart would be set on a biologic as well! They are the medications with the fewest side effects and the best track record of controlling this disease. Strictly speaking, the doctor can just prescribe one, and if your insurance will pay for it (or if you can pay for it out of pocket, LOL), Bob’s your uncle. But there are other considerations, and those considerations have to do with where you live. If you live in the US and you have insurance that covers a biologic, problem usually solved. If your insurance doesn’t cover enough of the cost, most of the drug companies will give you assistance so that you can use their product.
You live in Canada, though, so the situation is different. And there are differences between provinces as well. We both live in the same province though (and we go to the same clinic) so here’s the situation. If you have a private plan which covers a good portion of the biologic cost, you’re set. If you don’t have private drug coverage insurance, or your co-pay is too high, there is a provincial government assistance plan which will help. If you end up on the government plan you should know that they don’t usually cover biologics. YIKES, nope, they aren’t covered. But all is not lost. Your doctor can apply for an exception to have a biologic covered. In that case, the doctor has to provide evidence that you have tried to control your disease with less expensive medications (DMARDs), but that they were either ineffective and/or intolerable. So if you manage to go straight to a biologic via private insurance, you’re set. That is, until for some reason you can’t stay on private insurance. (This is what happened to me, long story.) Then you will try for the government plan and be turned down because you haven’t tried DMARDs (usually two, including mtx). In my case, I’d gone through four DMARDs, as well as having a lot of damage, and the request came from high up the medical tree, so we got government approval for Enbrel in days.
Our friends from the UK and Australia have a different path. Their government health service covers medications, so the only way of getting to a biologic is by meeting the government criteria: having tried a certain number of DMARDs and having signs and symptoms documented to be of a certain severity. From what I’ve read, getting biologics is more difficult in Australia than in the UK. And then again, those countries also have private insurance plans so that’s another complication.
So yes, you can go straight to a bio (and a lot of our US friends do) but living in Canada, you may find yourself in a difficult postion down the road, if you ever need the assistance of the government plan. You may have to quit the bio and try the DMARDs before being able to get support from the government to go back to the bio.
Sulfasalazine isn’t one of the nastiest DMARDs, nor does it have a stellar record of helping. But some people find it does. And some people find that they have to quit because of side effects. Ditto mtx, although it is more toxic to the liver. Someone on mtx who has a liver mutiny will be taken off it asap. And that would be two DMARDs down, which may be enough to ensure that you can stay on biologics if you ever need the government plan.
It’s all pretty complicated, and you have to think advance strategy. No, a biologic is not a panacea, but for a lot of us it has given us at least some of our life back. There are a lot of LWPsA members who don’t show up here, I suspect, because they are on aggressive treatment and they are just truckin’ along like a more or less normal people. You’re right to be thinking your options through very very carefully.
As for the histamine issue, I have no idea, but somebody else may.
Thank you for this comprehensive synopsis Seenie!!
It's comforting to know that I am not making a mistake by thinking of going straight to a biologic.
I went to the pharmacist yesterday to ask his opinion of my options. He said, regarding the biologic, there is also the trillium drug program, which I am looking into...
My pharmacist also told me not to fear sulfasalazine. He said the absence of long term data with the biologics is a concern. So I filled my prescription and left the pharmacy thinking I should give it a try. Now, again, I am not so sure...
While the risks of taking MTX are clear, the risks with sulfasalazine are not as obvious... I am getting conflicting views... The fact that the PsA clinic want me to take a blood test one month in to check liver and kidneys continues to be my biggest deterrent to try sulfasalazine (or MTX)...
Out of curiosity, does anyone have off hand the annual cost for let's say Enbrel in ON?
The program I mentioned is the Trillium Drug program. They only cover biologics on an exception basis. Your co-pay on Trillium is 4% of your taxable income (a certain line on your tax return, forget which one). There’s a good website that explains.
I agree with your pharmacist about lack of long term data on the biologics. In my case I had tried everything else, still had damage happening, and decided that I really had no other choice. I deliberately chose the oldest biologic, Enbrel, because it’s the one that we know the most about.
I also agree with your pharmacist in thinking that you need to give sulfasalazine a go. If it helps, that’s great. If it doesn’t, or it gives you intolerable side effects, you quit and move on. When you are thinking about the risks of medications (and all meds, even aspirin have risks) you need to keep in the back of your mind the significant risks of uncontrolled PsA: not only joint damage, but serious co-morbidities as well as damage to career and relationships. Just sayin’
Offhand, the retail cost of Enbrel in ON is about $1900 per month. When my insurance co-pay was 10%, quite affordable for me. After a year of that, my insurance rate skyrocketed to over $500 per month. It was cheaper for me to take a low-payout drug policy, and go on Trillium. If you ever find yourself on biologics and needing to go on this plan, you really do need to have failed several DMARDs, or you will be backtracking and doing that before they will pay
I'd want biologics too. But I'd take Sulfasalazine while pursuing that end. It didn't do much for me personally, but neither did it do me any harm. The impression I get from the many experiences I've read about over the years is that it is a relatively trouble-free DMARD for the majority of people.
I think with sulfasalazine you need to remember it was in use as an antibiotic long before it's effect on rheumatic disease was reported. It has a long, long use record and is well tolerated by most people.
For me it was a problem, through taking it my docs discovered I am adversely affected by sulfa drugs, and I was on another one at the same time and suddenly light dawned on me and my docs why I hadn't been feeling too good. Two more additions to the ever increasing list of meds I can't take. It wasn't too great at the time but nothing I didn't recover from pretty quickly.
And as for the monthly blood monitoring. That is pretty standard whatever you are prescribed - DMARDS or biologics.
Thank you Seenie, Sybil, Jules for your perspective and time taken to respond to this thread. I did pick up my sulfasalazine script yesterday [under protest :-)]. Spent quite a bit of time discussing the medication with another pharmacist (yet again).
Everyone I have spoken to both on and offline has encouraged me to give it a try... which I will... despite being very scared... it's the unknown... This is all a very humbling experience... accepting one's limitations... relying on drugs to prevent further disease... will let you know how it goes :-)
Of course you’re scared. We’ve all been scared, hell, I still get scared! Usually it happens to me on a Sunday morning when I have to inject Enbrel and methotrexate. It all starts swirling in my head: what’s this doing to me, what if this stops working, what if in ten years (fill in the blank). what if what if. And then I remember what life was like without those medications, what this disease has done to me, and what else it could do. And I’m still scared. But at least I have a life.
It’s hard, Slala, we all know and we all empathize. And that’s what we are here for.
I think the step from 'normal' life to one which incorporates taking drugs regularly is very hard. To be honest I'm still in denial to a certain extent. My mum had multiple sclerosis ... I was brought up by her and my granny who seemed to be just generally ill. I was the healthy member of the family and planned on staying that way! But there have been many times in the past few years when I've felt like that healthy member of the human race ... despite taking quite a lot drugs, or, more realistically, because I do. Good luck! Let us know how it goes.
Jump on! I have taken many of those meds before. Celebrex worked great but I had a "stomach ache" that I did not ignore and went off of it, which was just fine with my doctor. I now use methotrexate along with Humira. I have always been on methotrexate, even when on Enbrel...Do not be afraid of side effects, you might not have any. I don't...I only take naproxen when I really need it, which is not often, even with my broken ankle, that I am not getting over.
Again, do not be afraid of side effects until you actually have some.
Even in the US I had to satisfy the insurance company by going through all the other treatment options before starting the Enbrel. Maybe things have changed now. I took sulphasalizine, and I don't even remember what all......none of them worked, so the last thing to try was Enbel, which did the trick. I was worried about methotrexate and Enbrel both, so I asked my oncologist, who told me to go for it all. The amount of methotrexate you take for arthritis treatment has nothing to do with the amount you need to take for chemo. I figured if the oncology guy said to go ahead on, I should. So I did, and am not sorry about it.