I’m on my second DMARD, my labs are all normal but I have a lot of swelling and pain. I have severe foot pain. My toes, the ball and heel of both feet hurt so bad. My feet hurt even when I’m sitting. I work in a lab so I’m up & down a lot during the day. My hands,fingers,wrists,elbows and shoulders are very stiff and hurt. My ribs hurt, my upper back, neck, lower back, SI joints are all painful most days. My rheumy thinks that most of my pain and swelling is from fibro.
I finally refused to take MTX injections any longer so he switched me to leflunomide. I just couldn’t handle the SEs from MTX any longer. I still take cymbalta & neurontonin for fibro. I’ve only been on the Leflunomide for 4 weeks so I know that it’s effectiveness is not at full potential yet but if all this pain is from fibro then why am I hurting so bad when I’m still on my fibro meds?
Since I’ve switched from MTX to Leflunomide, my BP has gone from borderline to hypertensive and my nail psoriasis has flared worse than ever before.
He has not taken any X-rays in the past 10 months other than an initial chest X-ray last June.
I’m worried with this much inflammation and pain that I could have joint damage occurring.
Another thought…Can low dose MTX cause neuropathy (feet) and/or damage your vision? I can’t see as well as I could this time last year and have developed a problem with ‘visual snow’. I’m due for my yearly eye exam next month and will be making an appt soon for that.
I’m just so tired of doctors visits. Need to follow up on my BP with my GP. Need to see derm for nail psoriasis. I feel like a hypochondriac & I hate going to th dr.
In my opinion, as soon as a confirmed diagnoses is made for PsA or AS. Traditional DMARDs have have not shown much efficiency in slowing down the progression of joint damage. While biologics may not be the best for the hands and feet, they do help overtime. My 2 cents.
I agree with mataribot--my rheumy would have already put you on a biologic. He did offer me DMARDS when I would see him once a year for several years, but I was so afraid of any of those meds. I have good reason--my mom had bad luck with mtx, and sulfasazine would most likely eat holes in my stomach (I'm super sensitive to a lot of meds). He couldn't believe I wouldn't go on anything, but I've always been of the thinking that most meds fix one problem but cause another. So, do I want to take something to stop my pain but that upsets my stomach and wrecks my liver? When I finally "gave up" and went on Enbrel, it was pretty much cuz the people on here convinced me it was for my own good. And, the wonderful thing about biologics--at least for me--there are no bothersome SEs and I only see my rheumy or dermy once a year and my blood tests are all normal. Enbrel is so mild (the down side is an injection every week--twice a week for first 3 months if your dermy orders it) but if it makes you feel well, you will look forward to the injections--I sure do! (I hate needles so I use the sureclick auto injectors.)
Also, about neuropathy-Idk if mtx causes it, but I had it really bad a few years ago, my doctor prescribed Nortriptyline 10 to 20mg/day--it "cured" the neuropathy and after about a year I went off it. I've had minor foot pain since, and then major foot pain recently. Had x-rays and found out some of my foot joints are bone on bone now--Idk if the neuropathy had any connection with that or not. Take care of your feet!
One last thing--my nails were so UGLY--especially my thumbs and pinkies--since taking Enbrel they actually look almost normal. I wish I had before and after pics to show you!!!!
I agree with mataribot--my rheumy would have already put you on a biologic. He did offer me DMARDS when I would see him once a year for several years, but I was so afraid of any of those meds. I have good reason--my mom had bad luck with mtx, and sulfasazine would most likely eat holes in my stomach (I'm super sensitive to a lot of meds). He couldn't believe I wouldn't go on anything, but I've always been of the thinking that most meds fix one problem but cause another. So, do I want to take something to stop my pain but that upsets my stomach and wrecks my liver? When I finally "gave up" and went on Enbrel, it was pretty much cuz the people on here convinced me it was for my own good. And, the wonderful thing about biologics--at least for me--there are no bothersome SEs and I only see my rheumy or dermy once a year and my blood tests are all normal. Enbrel is so mild (the down side is an injection every week--twice a week for first 3 months if your dermy orders it) but if it makes you feel well, you will look forward to the injections--I sure do! (I hate needles so I use the sureclick auto injectors.)
Also, about neuropathy-Idk if mtx causes it, but I had it really bad a few years ago, my doctor prescribed Nortriptyline 10 to 20mg/day--it "cured" the neuropathy and after about a year I went off it. I've had minor foot pain since, and then major foot pain recently. Had x-rays and found out some of my foot joints are bone on bone now--Idk if the neuropathy had any connection with that or not. Take care of your feet!
One last thing--my nails were so UGLY--especially my thumbs and pinkies--since taking Enbrel they actually look almost normal. I wish I had before and after pics to show you!!!!
I agree with mataribot--my rheumy would have already put you on a biologic. He did offer me DMARDS when I would see him once a year for several years, but I was so afraid of any of those meds. I have good reason--my mom had bad luck with mtx, and sulfasazine would most likely eat holes in my stomach (I'm super sensitive to a lot of meds). He couldn't believe I wouldn't go on anything, but I've always been of the thinking that most meds fix one problem but cause another. So, do I want to take something to stop my pain but that upsets my stomach and wrecks my liver? When I finally "gave up" and went on Enbrel, it was pretty much cuz the people on here convinced me it was for my own good. And, the wonderful thing about biologics--at least for me--there are no bothersome SEs and I only see my rheumy or dermy once a year and my blood tests are all normal. Enbrel is so mild (the down side is an injection every week--twice a week for first 3 months if your dermy orders it) but if it makes you feel well, you will look forward to the injections--I sure do! (I hate needles so I use the sureclick auto injectors.)
Also, about neuropathy-Idk if mtx causes it, but I had it really bad a few years ago, my doctor prescribed Nortriptyline 10 to 20mg/day--it "cured" the neuropathy and after about a year I went off it. I've had minor foot pain since, and then major foot pain recently. Had x-rays and found out some of my foot joints are bone on bone now--Idk if the neuropathy had any connection with that or not. Take care of your feet!
One last thing--my nails were so UGLY--especially my thumbs and pinkies--since taking Enbrel they actually look almost normal. I wish I had before and after pics to show you!!!!
Hello aberry22, When you listed your symptoms it sounded like I was writing this. I am on pain meds and methotrexate.I wish you well. I would like to be on one of the biologics, too. I am going to ask my rheumy soon.
You said something that was confusing. You said that your rheumy thinks that most of your pain and swelling is from fibro. That doesn’t make sense. Fibromyalgia doesn’t cause swelling.
The leflunomide may take up to a few months for you to notice much of a difference, similar to methotrexate. Different doctors will use different guidelines for when to prescribe biologics. Some use them super early, and others do more step by step, and it depends on your disease progression and control as well. I wasn’t put on a biologic for almost six years following diagnosis, as the disease control was no longer sufficient on two DMARDs and an NSAID.
One thing to consider is taking your medical records and getting a second opinion.
Disease progression? Doesn’t sound like her Rheumotologist is doing much to monitor it. If possible I would get a second opinion. The longer you wait the more of train wreck this disease is to stop. I’d don’t mean to dash your hopes, but you will probably need to stay on a DMARDS as well.
Thanks for the input. I’m not sure why he seems to think that the pain & swelling in my hands and feet are from fibro. I have an appt in mid-May to follow up with the new DMARD. I plan to ask for a biologic and a plan to stop the cymbalta & neurontonin. I really don’t think that either med is really helping. I know the cymbalta causes me to be less “engaged”. It’s like I don’t really care one way or the other about some things. My kids & my husband have brought this to my attention several times.