I am only 19 and have had psa for as long as I can remember but didn't get a diagnosis until a year ago when it got severe. I couldn't walk without knee braces daily and was in terrible pain. I got on Humira which has helped me tremendously. It cleared up my psoriasis almost completely and has helped me to maintain a more normal life. I love to exercise and am having troubles doing so. I have been in terrible pain lately that is keeping me from sleeping and concentrating in my college classes. I am looking for an extra medicine to help with the pain, as i see my rheumy on Monday again. Thanks for the suggestions!
Hi Megan Marie!
There are medications that can be added to Humira, such as methotrexate, leflunomide, even NSAID's.
I was dx at age 10, so I can relate to being a young adult struggling with this disease.
Hi, There seems to be a lot of combinations of meds. Everyone seems to need to find their own. I hope you find yours. My Rheumy usually gives me the list to chose from and if it doesn't work we move on to the next. Maybe yours will do that too.
I'm still looking for what works for me...and I know the feeling of not being able to exercise. Since my flare started in the spring I have had to give up exercising. It's been frustrating. Even walking some days is a task since it's now in my feet. My hands are a bigger issue making pretty much everything difficult if not impossible.
Hi, unfortunately I haven’t found a pain med that does much for me as most of my pain issues are from the stabbing pain of enthesitis…the only exercise I can do when I’m bad is Shibashi Tai Chi which my OTs taught me, its very gentle but stops me from “rusting” Hope you find something that helps you soon, good luck x
Thanks for the responses! I have heard of methotrexate but it scares me too much. I will look up that exercise. I love working out but its hard when I can barely walk. I heard celebrex was good anyone try it?
Hi Megan!
So happy the Humira has been working well for you. As others have mentioned, finding out what combination of meds works for you will be a good help. Have you tried any of the other biologics? Some people find Enbrel or Remicade work better than them than Humira - it all depends on the person. I've been on Enbrel, which worked wonders for my PsA, but not for my spondylitis, and am now on Remicade, which works wonders for me. It's worth discussing with your rheumy. Pain usually indicates that you don't fully have the disease under control and further damage is being done.
Many rheumatologists don't deal much with the pain side of things, short of prescribing from a short list of pain meds. It might be in your best interest to see a pain specialist if the pain persists.
megan marie said:
Thanks for the suggestion! I am definitely going to look into a pain specialist. I searched and found a 5 star one in my area! I do like my humira and I am scared to get off of it. I am currently having a terrible flare up because I had strep throat and needed to delay my injection which caused my psoriasis to come back that I haven't seen in a year. I just need something to tolerate the extra pain which can be the worst part. I dont know much about Remicade.
nym said:Hi Megan!
So happy the Humira has been working well for you. As others have mentioned, finding out what combination of meds works for you will be a good help. Have you tried any of the other biologics? Some people find Enbrel or Remicade work better than them than Humira - it all depends on the person. I've been on Enbrel, which worked wonders for my PsA, but not for my spondylitis, and am now on Remicade, which works wonders for me. It's worth discussing with your rheumy. Pain usually indicates that you don't fully have the disease under control and further damage is being done.
Many rheumatologists don't deal much with the pain side of things, short of prescribing from a short list of pain meds. It might be in your best interest to see a pain specialist if the pain persists.
I'm glad someone relates about having psa so young! It can be so difficult to explain to others who don't understand this disease especially at a young age. My peers at college don't understand how hard this can truly be on a day to day basis. I find it hard to get the proper medications because of my age too. I think people misunderstand that I am not just a teen looking for meds, I am trying to function daily without terrible pain! Have you tried methotrexate? I have heard of it, but was scared by the way the doctors have described it to me. Thanks!
Marietta said:
Hi Megan Marie!
There are medications that can be added to Humira, such as methotrexate, leflunomide, even NSAID's.
I was dx at age 10, so I can relate to being a young adult struggling with this disease.
Hi Megan Marie,
As everyone has said–it takes time and some trial and error to figure out how best to treat your illness. In the meantime, I hope you’re working with your professors to let them know what you’re dealing with. I work at a large university so I know that profs want to know what’s going on with you without knowing every detail. They want an assurance that you’re not skipping classes or homework for no reason. While you’re working on getting your pain and your meds stabilized, you might want to ask your rheumatologist to write you a basic note that explains the pain, fatigue and episodic nature of your illness. By sharing this with your profs you will at least have one less thing to worry about.
Good luck with your health and with your classes.
Jane
Hi, Megan.
I know what it feels like to be young with PsA. I had symptoms from about 7 and didn’t get dx’ed properly until age 19. I felt very different from others and only told those closest to me.
I’ve taken a lot of different meds to try and slow the progression of the disease and MTX was one of them. I didn’t have too many of the GI symptoms, but rather felt like I had a cold/virus all the time. I stuck with it and it did help me once, but not the second time. You will notice that all of us here on this site will tell you it’s all about trying and trying until you find what works.
It’s been 21 years since my dx and thank goodness for biologics. I have taken Enbrel twice and it makes me feel great. I have had remission induced for years sometimes.
My rheumatologist just gave me a rx for voltaren gel for painful joints. Have you ever tried this topical NSAID?
I do Pilates for exercise. Not only does it keep me toned, but it helps my overall mindset. I go to a gym for classes and do it at home when pressed for time or need to go at a different pace because of pain or energy level. Hope this helps. I truly hope you are feeling better soon.
OK, so I was just diagnosed, but I took MOBIC for about a year and it worked wonders. So maybe add the anti-inflammatory?
I was on Humira for 2 years and it worked great until one day it just stopped. My rheumy then put me on Enbrel and after a year on it I had a UTI and immediately after I had gotten over it I had a yeast infection which began in May and this is October 29th and I'm still trying to get rid of it. I've taken 24 Diflucan tabs and went through 4 boxes of Monistat 7 and referred to an OBGYN after my GP didn't know what else to do. My OBGYN took a culture and it came back normal. I had cleared up for 2 days in before seeing the OBGYN. I finally went online to WebMD and ate Greek yogurt for 14 days twice a day and 1 yogurt a day from then on as maintenance. I am diabetic but my BS is controlled so that wasn't the cause of it as my A1C was 6.5. I can't drink cranberry juice because of my diabetes so I bought cranberry capsules. They seemed to be working until I ran out of yogurt for 3 days and it started back up again. My GP and hematologist won't let me go back on the biologics because they believe the Enbrel was causing my infections as the biologics are known to do. My GP suggested Celebrex and had me speak to my rheumy about putting me on it but to her disliking, she went ahead and gave me a prescription. I'm doing better than I have in years and feel like myself again for the first time in years. I can run up and down the basement steps without a problem and before it was one step at a time because my hips, knees, and ankles hurt so bad I could barely move and my washer/dryer is in the basement.so I had to just deal with it. Celebrex has been the best medicine for me without any side effects. If I can just get the yeast infection under control. Some days are better than others. I've been off Enbrel and on Celebrex since June 2nd.
megan marie said:
Thanks for the responses! I have heard of methotrexate but it scares me too much. I will look up that exercise. I love working out but its hard when I can barely walk. I heard celebrex was good anyone try it?
Celebrex is great for short term relief, but one pill (200mg) makes difficult to choose when to take it. Celebrex can be harsh on the heart and kidney and is typically not recommended to take more than 200 mg per day. If your stomach can handle it, I take something else that can be safely taken multiple times per day, I think it would better fit your active lifestyle.
Hi Megan. Sorry you are so young and having to deal with this diagnosis. I was diagnosed about six months ago. I am on Enbrel and am very happy with it. I tried Methotrexate but had terrible side effects. I was in terrible foot pain when first diagnosed and have tried multiple antiflammatories and found nabumetone (Relafen) 500 mg to work great. You can take it up to four times a day and I am taking two tablets in the morning only and am now able to exercise and walk with my dog five miles per day with no pain. I also take Tramadol at night for any bad pain. Hope this helps.
I'm on celebrex but for me it doesnt do anything at all. I also use Diclofenac which actually helps a bit. But for me the pain is so bad I just curl up and lie there lol. I've been told the next step in painkillers for me is morphine... I'm trying to avoid that. I also find it hard to excercise when I can barely walk and my balance is poor. I'm sorry you are so bad so young hun. I've had it from an early age but not quite as bad as that. I had to give up a lot of my sports at 16. Although I didnt and I'm glad I didnt I think maybe I would have been worse if I had listened to the doctors back then. However It's now so bad I can hardly walk, and I have great difficulty excercising. I must admit though I have never heard of half the meds people on here talk about. I'm on methotryxate but I dont feel its doing much.
I didnt know it was harsh on the heart :/ I have heart probs well blood pressure problems too and yet they put me on celebrex. Im so confused about the meds they give me as the all seem to effect my kidneys and I am feeling discomfort on occasion in my kidneys but they say the tests come back ok, so I dont know what to do anymore.
mataribot said:
Celebrex is great for short term relief, but one pill (200mg) makes difficult to choose when to take it. Celebrex can be harsh on the heart and kidney and is typically not recommended to take more than 200 mg per day. If your stomach can handle it, I take something else that can be safely taken multiple times per day, I think it would better fit your active lifestyle.
My MD has me on 200mg Celebrex daily and I have no problems with it. I have other medical problems as well but Celebrex has been the best thing that has helped me get my life back. I'm walking great without pain in my hips or ankles, and I've canned apples, tomatoes, pears, etc for the first time in years and all done since I began Celebrex. What one med does for one doesn't always work for another but please don't exclude it just yet and give it a chance. My kidneyfunction, liver enzymes, lipid levels, and diabetes along with my PsA is finally all in normal range after stopping the Enbrel from all the infections I got from it injecting it. My family on both sides have heart problems as well and I'm tested every 6 mths and just had a chest x-ray and everything is running perfect! My husband has tons of apples trees and neither one of us can have pies or baked goods so I made 70qt and appr 30pt of applesauce of different variations of apples in their own natural juices. I love to can and I didn't know if I would be able to do it and I can't sit to peel apples so I stood for days on end peeling apples and no back pain. I do have to add that a couple of night I used my thumb/wrist stabilizers on my hands when I went to bed as they were throbbing but when I got up the next day I was ready to go without any pain. Celebrex has worked wonders for me!