Hi friends: I am new to this site and new to PsA. Symptom started in November of 2013 and my doctor could not figure it out. I would have strange swellings in various joints that were so painful. Nights were the worst. Have not felt good for a long time but have also been diagnosed this year with emphyzema so it has been a rough year. I have rebuilt some of my strengh but with winter coming and living in Michigan I am worried about not moving around enough.
The minute the rhuematogist saw my toes he said I have psoriasis. I wasn't seeing it but after all the tests were said and done that was the conclusion. I just recently started Sulphathalazine and I think it's working since I have not had a painful flare since starting it but that could just be luck. The newer drugs are cost prohibitive for me so praying it works.
I'm concerned about liver damage after reading all of the warnings and just wondered if anyone has had luck with alternative medicines or herbal remedies? Thanks to all for adding me into this group.
Glad you found us. This group is different than most around the net. We are a pretty matter of fact bunch, but a lot of fun and caring at the same time. I won't say don't worry about the side effects, but you have little to worry about - really. Everything is very closley checked. Other than wierdness that ops up from prednisone rarely does anything become more that a short term problem.
You may get some relief from alternative therapies, BUT it comes at a high cost. Controlling symptoms is not the same as controlling disease If I eat enough "organic brownies" all my symptoms will go away bit the disease stays and the damage continues to occur. THE ONLY thing that has proven to preven the damage (that causes symptoms) are the DMARDs (which you are taking) and most especially the biologics. Unless you are on medicare, in the US cost of the big guns - the biologics - is never an issue. Every drug company has a program to cover your out of pocket costs and copays. When the time comes we can help you navigate the system. If you are on medicare you can use remicade which is covered under part B and/or during open enrollment choose a D plan the will cover you. A part of the HCA act which is still coming changes the biological coverage to majke them much more accesable and a lot cheaper under medicare.
You'll have no problem moving in Michigan. If you run out of snow to shovel there, I'll have plenty here. (Its coming Wed in fact)
Hi, Appy Kathy! We’re glad to have you. As Lamb says, we are a little different from some support boards: we pride ourselves on providing information that is as accurate and as evidence-based as possible. Everyone is entitled to their own opinion, of course, but misinformation or information that is not borne out by well-designed research, doesn’t stay on this board for very long. Some people take exception to our approach, but we are unapologetic about what we will allow to appear here.
I hope that you find this a good place for support and information!
Thank you sybil! Appy stands for Appaloosa. My appy, Copper is my best bud! We ride every chance we get. I've had him 17+ years and hoping we have another 10 or so left in us both. I'm going to put aside my worries over the meds and try to improve my diet and exercise. I hurt really bad and have for the last 48 hours or so and am hoping it passes soon. I plan on spending as much time on this site as I can and learn all that I can to help combat this. Two of my passions in life are horseback riding and gardening and I'm not ready to give them up!
Thank you to all who responded. As winter sets in I will spend more time on line and hope to learn a great deal. I love my Rhuemotogist, he is great and has been around a long time so I'm going to have to trust him to help me. Have a wonderful day and weekend.
sybil said:
Hi Appygirl, is that just one 'H' short of Happygirl? If so hope you get much relief from the meds.
As others have said it's not worth worrying too much about side effects, it's the PsA you need to worry about. Constructive worry I mean, if there is such a thing! PsA's a nasty little customer and although the drugs seem like fairly strong medicine they are good at dealing with it. In my opinion uncontrolled PsA is much worse for you than the drugs are.
After nearly 3 years of taking full dose Methotrexate, with one short break from it, my liver enzymes are now slightly raised. And even though there's a chance the levels may possibly be normal for me, I'm still being watched very closely. Over time I've learned to really trust the doctors and nurses not to let anything bad happen. Things I might dismiss, they pounce on and sort out.
I don't know anything about herbal remedies, although I believe there are some that are contraindicated with some prescription drugs, so go careful. I do think that the body needs all the help it can get to cope with ongoing inflammation and possibly with the drugs too, come to that. So it's a great idea to maximise your overall fitness by eating a great diet, exercising, getting enough sleep and so on. None of these things are as easy to do as they are to write about! But so worth it.
I have had three of the most miserable nights since being blessed with this disease. The pain has been very close to making me cry. Hoping it will let up soon. Almost went to ER last night but I don't think there is anything they can do for me. Any suggestions for when it gets this bad????? All I have is Aleve and Vicoden and can only take 1/2 of Vicoden at a time or I get sick.
Sorry you're going through such a rough patch. If Vicoden makes you sick, you may want to find a new painkiller for emergencies such as you have been dealing with. I wound up finding that Tramadol works for me. I very rarely use it, but have used it successfully post-op. Many people need multiple meds to handle disease and inflammation. For example, for a number of years I was on two disease modifying drugs as well as NSAIDs daily. Now that I am on a biologic, I have weaned off one DMARD and off of the NSAIDs completely.
Painkillers can be useful, but disease control is important long term. You can certainly use alternate and home remedies to support this. I hope that you can get through this flare quickly.
You’re right about going to ER, Appygirl. They’re great there if you’re in cardiac arrest, but for a chronic auto-immune disease, not so much. And I don’t know about what they are like where you live, but the ER here basically doesn’t give pain meds. And on top of that, saying “Psoriatic Arthritis” will probably get you a blank look. Soooo…your best strategy is to discuss this with your rheumatologist or your PCP, and ask what to use as a rescue remedy. My rescue med of choice, like Stoney, is long-acting tramadol. But that is a drug not without its risks and problems too, so I use it sparingly.
The middle of the night is such a miserable, lonely, dark time, isn’t it. Sometimes all you can do is take a hot bath, cuddle with a heating pad, or meditate. You could also go looking for company right here – we have members all around the world, and you never know who you’ll find to chat with at 4 am!
The very THOUGHT of vicodin make me sick. If you must use a narco (and I don't believe one should) something without an attached NSAID is best. Tramadol for a PRN as an alternative to a pistol is a good choice. For out of control the only med that will work more than a couple hours is Torodol. Its not a narco and will treat the cause of pain.
You may need a short taper or burst of prednisone to get going on your treatment.
I had an appy/quarter cross as kid "Teton Bob" He was 43 when he passed. Haven't had another since can't do it.
Thanks everyone! I'm allergic to Tramadol but will ask my dr. about Torodol. This was the worst flare so far but it is starting to slowly subside. This site is a blessing. Looking forward to getting to know all of you. Hugs, K
You're right about going to ER, Appygirl. They're great there if you're in cardiac arrest, but for a chronic auto-immune disease, not so much. And I don't know about what they are like where you live, but the ER here basically doesn't give pain meds. And on top of that, saying "Psoriatic Arthritis" will probably get you a blank look. Soooo...your best strategy is to discuss this with your rheumatologist or your PCP, and ask what to use as a rescue remedy. My rescue med of choice, like Stoney, is long-acting tramadol. But that is a drug not without its risks and problems too, so I use it sparingly. The middle of the night is such a miserable, lonely, dark time, isn't it. Sometimes all you can do is take a hot bath, cuddle with a heating pad, or meditate. You could also go looking for company right here -- we have members all around the world, and you never know who you'll find to chat with at 4 am!
Toradol is a strong NSAID. I LOVE this drug. I would take it daily if they’d let me. I use it for toes desperate moments, and it is enough to knock that sharp edge off of the pain. Needless to say, I highly recommend it.
Welcome to our group, I’m glad you were able to find us.
I have tried lots of natural remedies, and my diet requires low starches, and gluten for other conditions, but I still have PsA symptoms. I take Remicade, methotrexate, ibuprofen, and others,and I have been able to get my function back. I spent many an evening int the ER begging for relief, and more time on steroids than I care to admit. We have a mantra here, Fear the disease, not the drugs. Without the biologic medications, the PsA will continue to worsen until it robs us of our ability to function. We all wish there were a way to fix this naturally, but there isn’t. We are lucky to have the meds that we do. When you start to get relief, you I’ll understand how lucky we are. The rewards of the meds far outweigh the risks. It’s wonderful to have your life back. Make sure you spend lots of time with your buddy. Touch helps my pain a great deal. I used to be a horse person, but sold my baby when I moved. There is a stable nearby that let’s me brush their horses to make me feel better when I hurt. It is very helpful.
Aw, I was such a horse lover until the horse I bought was crazy....I got so scared I gave up on horses and had kids (children, not goats) instead. :( :) still love them--just couldn't imagine ever riding one again since PsA. Boy, it is nice brushing them, tho!
GrumpyCat said:
Toradol is a strong NSAID. I LOVE this drug. I would take it daily if they'd let me. I use it for toes desperate moments, and it is enough to knock that sharp edge off of the pain. Needless to say, I highly recommend it.
Welcome to our group, I'm glad you were able to find us. :-)
I have tried lots of natural remedies, and my diet requires low starches, and gluten for other conditions, but I still have PsA symptoms. I take Remicade, methotrexate, ibuprofen, and others,and I have been able to get my function back. I spent many an evening int the ER begging for relief, and more time on steroids than I care to admit. We have a mantra here, Fear the disease, not the drugs. Without the biologic medications, the PsA will continue to worsen until it robs us of our ability to function. We all wish there were a way to fix this naturally, but there isn't. We are lucky to have the meds that we do. When you start to get relief, you I'll understand how lucky we are. :-) The rewards of the meds far outweigh the risks. It's wonderful to have your life back. Make sure you spend lots of time with your buddy. Touch helps my pain a great deal. I used to be a horse person, but sold my baby when I moved. There is a stable nearby that let's me brush their horses to make me feel better when I hurt. It is very helpful.
