Yes.....I'm new to this whole new living HELL.....
First rhumey....shame on him.....Second rheumy .....shame on me.....Third rheumy on 4/20....let's just say third time is a charm.....
So he starts me on 10mg/day of Prednisone just to see how I respond to suppressants while the 7 vials of blood get screened for everything but the plague....
6 days in and I get a taste of what it's like to be temporarily almost cured....that is my skin is practically clear, especially the inverse (and you all know where I'm talking about) . The pain and swelling in my hands is only a quarter of what it used to be.....Now here's the kicker....The side effects of the Prednisone are WICKED !!! I could get hired instantly to be one of those zombies on TV....Mornings are brutal.....so hard to get out of bed....I know I can't stay on this.....and I don't want to.....
May 4th will be "Diagnosis Day" .....All test results will be in and we'll discuss long term treatment....So here's the million dollar question:
I'm not interested in waiting 3 to 6 months for MTX to potentially work or NOT WORK.....not to forget to mention organ toxicity and other side effects....
Will it be wrong for me to suggest that we skip MTX and go right to Bios that could potentially work a lot quicker ?....sounds reasonable, right ?
I could use someone's advice here.....Thanks in advance.....
So you're pleased with current rheumy? That's progress!
What you are proposing does sound very reasonable. Here in the UK there are national guidelines re. biologics that stipulate the need to try & fail 2 DMARDs first. So at least that's simple. I gather that in the US it's the insurance companies that demand a similar pathway but there does seem to be a lot more wriggle room. I know of one or two people here who have gone straight onto a bio. I'd say go for it, you can but try.
I'm not anti-Mtx. I'd say it usually 'kicks in' after about the same amount of time as the bios do. Peoples' responses to it do seem to vary considerably but it helped me. It loosened me up sufficiently to walk which in turn sorted the pain & I think it helped with fatigue a fair bit too. But my joints did remain swollen.
It certainly can't hurt to request going straight to a biologic. But the fact is the MTX or the other DMARDs are far less expensive, and some people will have a great response. I hear your concern about side effects, but the truth is that these meds are used for a reason.
Some people will have little to no response to MTX on it's own. It's also commonly used with a biologic, so even if the doctor is going to recommend a biologic, it may actually be both MTX and a biologic.
My experience went that the MTX came first. As the ailments continued to emerge my rheumatologist added a biologic. I’m pretty sure the MTX needed to be tried prior to insurance authorization for the biologic. But im hopeful your new rheumatologist will get you on the right path asap!- be well
Thanks everyone for sharing your path to healing.....I'm still in denial of what's happening to me now....I have more than enough hardships prior to this condition including my disabled wife with kidney failure on dialysis 3 days a week. I "do everything" from food shopping to laundry while maintaining an embroidery business to keep the rent and bills paid....Just when you think you've reached the endurance limit, another hurdle is placed in front of you.....Finding the strength to jump again without knocking it over won't be an easy task this time....
You've got a lot on your plate ThreadDesigns. Denial must seem like the best option sometimes.
When it comes to response to drugs then of course my own experience is the only one I can refer to with certainty. This may not be your path but there again, it could be ..... I responded well to pred too, though without the side effects. Looking back, that was one of many turning points because things have never, ever been as bad since. What I hope, because this might be good news for you, is that the steroids quenched the flames somehow. Before that short course I was in serious doo-doos. After that, on Methotrexate, still fed up, still hobbling and fatigued, but very much back in the land of the living compared to how I was before. It was 2 years before I started Humira and it's that that has finally got the disease under really good control.
Every day must be a series of high hurdles for you right now. Make sure your rheumy knows of your situation / responsibilities if he or she doesn't already. If you have to go down the DMARD route, I wouldn't worry too much about organ toxicity etc. I recently had a liver scan after nearly 4 years of Mtx and a life time prior to that of ...well .... enjoying a drink or ten. Liver is tip top would you believe. With the help of a good rheumy you could be feeling more resilient within a month or two .... starting a biologic either very soon or at least the right side of Christmas. It's a long path but it so often gets a whole lot brighter & easier, please keep that in mind.
Look after yourself meanwhile in terms of nutrition & exercise, in so far as you have time to. It helps.
My doctor skipped methotrexate and put me on a biologic straight away but it was not working so we added methotrexate at about the one and a half month mark. Now at 4 months of enbrel we are most likely going to be switching to humira as the enbrel is not working.
I'm so sorry, ThreadDesigns, but like most of the people here I know what you are talking about. Yes, the straight-to-bios route makes a lot of sense if your insurance will cover it. But you also have to factor in what will happen if you ever need to change insurance. (I'm thinking, for example, going from one insurance plan to another plan or to Medicare.) What you don't want to have happen is this: your current insurance covers a biologic, with no DMARD-first requirement. You start and get great results. Then you change insurance, and your new insurance makes you quit your bio and backtrack to trial the DMARDs. If they don't work, you will then go back on the biologic but you may find that it doesn't work as well the second time 'round. My feeling is, if you can, cover those DMARD bases before you go on. Your rheumie may have an "efficient" way of doing that. It may pay off for you in the long run.
You are right about prednisone, but you have learned something from your short term trial: now there is no question about what is causing your misery. It's inflammation. A prednisone trial is sometimes done for just that purpose. But it's a miserable, risky drug that we need to avoid if at all possible. There are different forms, though, and they may have more acceptable side effects for you. I'm thinking of the longer term injections such as Kenalog. Ask your PCP or your rheum about short term relief: you have an awful lot on your plate.
You sound like you are overwhelmed, which is not surprising seeing that your functioning is essential to your wife's health too. Please don't neglect your own mental and physical health. Make it a priority to get the sleep you need. Ask the doctor about non-addictive sleep medications (there are some non-addictive old-school anti-depressants that can be used this way). Eat well. And, as counterintuitive as it may seem, exercise. For me, exercise is one of the best pain relievers. A lot of us here find that gently water exercise and swimming (particularly if you can find a warm and relaxing pool) does us the world of good. It's kind of like what they tell you on the airplane: put your own oxygen mask on first before helping other people. Look after yourself first, or you won't be any use to others.
I hope you are finding our community a good place for support and information. The experience of most people here is that we have needed to educate ourselves about our disease, and to do active and directed self-advocacy. For some reason, ours is a condition that is all too often misdiagnosed or underestimated. Many of us have needed to be assertive (and even pushy) to get the care that we needed to turn the course of our disease around. Learn from our information and our experiences, TD and feel free to lean on us. That's what we are here for.