I have had PsA for about 10 years now. At various times it has affected different parts of my body. Most flares eventually wear themselves out but I have quite a lot of permanent damage to my fingers (which hurt most of the time) and toes. I also have hypothyroid, osteoporosis, bone edema and lung scarring, I'm presuming all due to the PsA. I've tried dietary changes, including going gluten free, sugar free, dairy free and nightshade free and except for the sugar I honestly don't think it helped much and I lost a lot of weight - problem was I already was thin.
For most of those years I have taken Etodolac and Minocycline. The antibiotic approach seemed to have worked pretty well for me. However, a few months ago another couple of fingers began to feel funny - one of them being my thumb and the other my pinkie on the same hand. (My middle finger on the same hand is already damaged. The MCP joint is thick and feels fibrotic and the DIP joint is completely frozen.) The forefinger on the other hand has a swan neck deformity. So, not wanting to lose any more fingers this crummy disease, I went to the Rheumy with the hopes of getting a steroid shot in the finger but he declined my wishes and said it was time for me to try a different antibiotic. He suggested Sulfasalazine and so I tried it for 3 months. It did nothing but make me feel unwell and lose more weight. My thumb feels frozen at the DIP joint (The joint just down from the fingernail) and the MCP joint is very swollen and red. So I discontinued the SSZ and now he wants me to try Embrel. But I'm afraid to try it because I've read that when many people have stopped it they have had bad flares and psoriasis outbreaks. So I would like feedback on two things: 1) Can anyone tell me what is going on with my hands? Has anyone else had their finger joints freeze? Any advice what to do for them? and 2) what are your experiences with Embrel? How long did the Embrel work for you? What happened when you stopped?
His approach makes sense. If you have multiple swollen joints, it means that you don't have good disease control, so hence why the doctor doesn't want to do a steroid shot.
I'm wondering if you've already tried methotrexate? It's fairly common to run through the DMARDs before moving on to a biologic, but if you're qualifying for the biologic now, why not? I started Enbrel 2.5 years ago and have been happy with it. I've been able to discontinue the anti-inflammatory, which has a worse risk profile than Enbrel.
Joints freezing. . .. my mom has had this happen. She had undiagnosed (and untreated) PsA for about 15 years, and quite a few joints in her hands have auto-fused. Not pretty. She's had a few DIP joints that the hand surgeon has finished the process and fused them, and a few PIP joints that have had the joint replaced. All in all, better to not wind up going down that route.
Could the "freezing" also be due to inflammation? Or to tendon imbalance? Those are some other possible reasons. This disease can do a real number on the small joints.
The problem with the minocycline approach is that it was given as light Duty DMARD and only for early stage RA a completely different animal than PsA. They quit with that almost 10 years ago. Clearly your disease passed what any DMARD could do sometime ago.
As far as what happens when you quit taking a Biologic, I personally have no intention of finding out. NOT EVER. I can not imagine any scenario where I'd risk having the disease return which is what you correctly described as happening when you stop XYZ med. I unfortunately started with my disease in the bad old days when minocycline etc were the only options. Consequently not only do I have permanent joint damage, like Stoneys Ma, I have had to have joint replacements and more coming. BTW Sulphazine (SSZ for short) is NOT an antibiotic) It is however trying to put out a forrest fire with a tea cup. You either have a genius for Rheumy who got you quickly qualified for a Biologic by using SSZ or a complete idiot for trying. In any event I can't think of a single reason not to start tomorrow on Enbrel. If he's offering, it sounds like he is in the Bright category. Good luck and congrats. We have members who have been waiting YEARS for a biologic.
Laurel9, my advice is go for it! I started Enbrel two years ago July 3 and have great results! I can only wish it would work as well for everybody. My hands were so bad--no frozen joints, but so horribly stiff and puffy! I was so afraid of the meds--my doctor couldn't talk me into taking Sulfasalazine or mtx. I had a couple prednisone bursts (no injections, I was afraid of them too) and when my rheumy refused to give me another prednisone burst I had to cave and agree to go on a biologic. I actually went through my dermatologist to start on Enbrel and she was able to get me on 2 injections per week for the first 3 months. Ask any of the moderators here--I was a basket case and so afraid to go on ANY med--especially a biologic. But I'm so happy they convinced me it was what I needed to do! My results were miraculous. The sooner you do this, the better. I was diagnosed with PsA for several years and tried all the natural remedies, too. None worked. I have some permanent damage to my back and feet and a few of my fingers look a little funky, but I can't imagine how much worse I'd feel now if I wasn't on Enbrel.
Good luck! If you live in the U.S. and have private health insurance you should be eligible for "Enbrel Support"--Enbrel is very expensive and it may cover your deductible.
Hey, laurel9, great to hear from you, but I'm sorry you're not doing so well. Not sure what you mean by joints freezing -- are they simply immobile, or does your finger get stuck in a bent position which you then have to yank straight? Heck, don't know why I'm asking that: whatever the case, there's "something" happening with your joints and tendons. I'm no doc, let alone a rheumatologist, but it doesn't take much imagination to connect joint issues with your PsA. Doesn't sound like yours is under control at all. What to do for your hands? Get your disease under control first. My guess is that when that happens, your hands won't be so much of an issue any more.
Looking back on tnt's post, I was one of the ones who waited and begged for a biologic, but was refused. By the time I got the Enbrel in my hands, I'd had one hip and two knee replacements, and I had terrible destruction in my feet. Enbrel turned my disease around, and slowed it way down. I felt better, had more energy, my depression improved and my blood pressure did too. What little psoriasis I had disappeared as well. And no, I wasn't catching every bug going 'round either.
Enbrel did the job for me for two years, and then faded. I should have switched before I did, but eventually I moved on to Humira. It's doing a good job for me, except that I'm having a bit of breakthrough psoriasis. Given the choice (which I have!) I'll put up with a few scaly patches if my joints are being protected and I'm feeling well.
Hi laurel9. I too had to wait far too long to start on a biologic. I do have some joint damage that is fairly liveable-with, though I wouldn't be surprised if there's a fair bit that isn't bad enough to affect my mobility noticeably. Whilst the care I've received in recent years has been excellent in many respects, imaging is one area in which a bit of penny pinching goes on, or so I suspect. On the other hand it could just be that my rheumy doesn't see the need, whilst I'd like to know what the state of play is, Humira works well enough to be protecting my joints as much as possible I guess.
And that last point is THE point .... before starting Methotrexate and other DMARDs I had extreme fatigue, rapid weight loss, raging inflammation levels, swollen joints, anaemia of chronic disease and generally felt clapped out. The DMARDs helped with some of these things but signs were that the disease was still pretty active. And what Humira then achieved was much more obvious disease control, especially in terms of tackling long-standing joint swelling. I no longer have anaemia, my weight's stable, I usually have more energy than I have in years etc. With this overall improvement I think my joints must be as safe as they can be.
I'm having trouble explaining what I mean .... in a nutshell this is a systemic disease, it affects the whole body & quite possibly the mind & emotions. Therefore the best treatment is that which adjusts the immune system as far as possible, as biologics are intended to do. I've come to see everything else - lifestyle changes, DMARDs etc. as vital add-ons, stopgaps or, indeed, useless. I'd say give Enbrel a try.
Thanks for your replies. Yes, Stoney, that is why he didn't give me the shot. He said it would just be like putting a band aide on it. I guess it's taking me time to realize that this is really happening to me and at least for now it's not going away. Some days are not so bad and they are great except they kind of lull me into thinking, "See, things aren't so bad." Then wham-o, my whole hand hurts and two more fingers are freezing up. No, I haven't' tried methotrexate because I'm terrified of it - heard so many people having bad side effects and reading literature that says there is no proof that it actually prevents joint destruction. Thanks for sharing the info about your mom. I wasn't sure if it was the PsA or something else. I've heard the rheumatic diseases can kind of overlap. And so I wasn't sure what I was dealing with. With me seems to affect the ligaments and tendons first then goes in to kill the joint.
I have read of many people who are helped my minocycline but mostly for people with Rheumatoid or Scleroderma. With PsA it seems it takes a little more - combining it with other abx's or LDN. My docs at the clinic I go to are not going to allow that. I've tried bringing literature (I go armed!) and they're not interested. And then there's the whole problem of killing good intestinal flora.
I really the idea of going off the anti-inflammatory. I've been on them (etdolac) for about 9 or 10 years.
tntlamb, I think the doc used psychology to get me off the minocycline when he said what I needed was a different antibiotic. In fact SSZ has antibiotic properties. (The sulfa in SSZ is an antibiotic). Then when it didn't work and I tried to go back to the Mino, he said no, we really need to go forward. That was a few weeks ago and now I'm wavering over the Embrel. Had the insurance gone right through I would have been on it already. But there were problems with being able to pay for it and how much insurance would cover (It would still cost me $1000 at least per month AFTER my deductible) and whether nor not the the clinic could help out (they couldn't because I have insurance) and so it's been delayed. Now the clinic is waiting for me to fax in my paperwork so they can send it to some company to see if I qualify for help. Then I thought, "What if the program accepts me this year and drops me the next?" So I started doing research and that's when I read of people's conditions getting worse when they went off it. It scares me. But losing my hand scares me too.
Grandma J, thanks for your encouragement It is nice to know I'm not alone. I guess I should go ahead and do what I had resolved from the beginning - that if it's God's will I'll get approved and if it's not God's will at this time, I won't. I'll keep y'all posted. Thanks again.
O, by the way, I forgot to mention I also have torn rotator cuff - I guess caused by the arthritis. I have at least two tears - one full and one partial. They won't do surgery and I've suffered with that for over 3 years. Here's what I want to tell you all: I tried Physical Therapy but it only seemed to make it worse. It was very discouraging and the condition debilitating. Then I found a Tai Chi for arthritis DVD. I started doing it and it has really helped. The instructor is Dr. Paul Lam. I was really skeptical I could even do it let alone get help from it. But it has really helped my shoulder. I'm also sleeping better. Just thought I'd share that. (You can even do it sitting if you are unable to do it standing.) ~Laura
Laura, interesting that you mentioned LDN, and there's a good reason why your docs didn't entertain your suggestion of LDN. Here's one of many comments that tntlamb has made on that topic:
ts actually the OPPOSITE of a narcotic type drug. It messes immensly with the pain mechanism and renders pain meds ineffective. Its sorta like swallowing a TENS unit.......... The thing is if you think Predi is bad this stuff makes predi look like candy in regards to what it does to the adrenal system.
There have been some reports and small studies done with Fibro that record diminished symptoms which would make sense. This treatment has been discussed here before just search naltrexone.
There is a whole "movement" for LDN therapy. It is not mainstream medicine at all. Keep in mind Bowel is often associated with movement. You can search for it. There is also a couple of Yahoo groups
The whole LDN movement came out of the helminthic therapy movement which involves worms and probiotics. If only it were true a dose of Ipec syrup and and a high colonic followed by a cup of yogurt would cure most disease.
Its very much an alternative therapy in regards to PsA. However it has helped many overcome alcholism and drug addiction used short term. It does seem to have an effect on overactive pain response (Which is how it works on drug addiction) However it is rarley used becausde of side effects.
As for methotrexate, here's a piece from our Newbies' Guide.
We know how expensive Enbrel and the biologics are! Here's a newbie article about co-pay assistance. What your doctor's office is probably doing is contacting the Enbrel support people on your behalf. You might want to ask, and if not, try contacting them -- the link is in that newbie article.
I would say, take it as it comes. If you can get support now, go for it without worrying about next year. And do ask your rheumatologist about the "going off makes people worse" thing. I don't know about that, but it could just be that when you go off, you're suddenly struck by how bad your disease symptoms are, because you've forgotten what it was like to have out-of-control disease. And conversely, when you find treatment that works really well, it's amazing what a difference it makes.
What I do know for sure is that the world's top PsA specialists firmly believe that early and aggressive treatment is the safest way to a good prognosis.
There have been some controlled studies done with LDN with some very positive results in Crohn's disease, however, I have never read anything that suggests efficacy in PsA. Biologics are certainly showing the most promise in PsA treatment. One must weigh the risks of serious side effects seriously against the risks of not taking them.