I'm new to this site, but the past six months have been miserable and I was looking for some support from those who truly understand.
I've tried a number of meds for my psoriasis. Eventually I ended up taking Enbrel and then switched to Humira. I was on biologics for years. My dermatologist and I tossed around the idea of PsA several times, but symptoms were never really significant. Then I stopped Humira. I was in the process of changing around my insurance and my husband and I started talking about a baby, so I figured I might as well stop. Big mistake. My symptoms started exactly one year ago and the diagnosis was soon to follow. Since we were talking about trying to have a baby. My rheumatologist put me on prednisone and we hoped to conceive quickly, but it just didn't happen.
After dealing with the nightmares of prednisone (mood swings, anger, weight gain, moon face, hair growth in all the wrong places, etc.) and not really getting many of the positive effects, I decided that I could not go on in this manner. I broke down with my doc and we decided that given the "violent" phase I was experiencing with my disease, I needed to focus on getting myself back into remission. I started the Humira again.
Well, it's been almost three months now and I still can't live day to day without at least three doses of 800mg ibuprophen. Some days I still have to take Tylenol, tramadol, or some other pain killer. The doc says it may take up to six doses to see the effects, but I'm on the fifth and still not well. We discussesd adding methotrexate, but I really don't want to take it due to our hopes of having a baby soon. We also discussed the possiblity of switching to Remicaide.
I'd love to hear from others about how long it took Humira to work or what they thought about Remicaide. I know I have to make a decision soon about the next step as I just can't continue on the way things are. My skin is REALLY bad and I'm in constant pain. Sorry to be such a complainer, but I'm just in a bad place right now. Thanks in advance for any responses.
Don’t ever apologize for complaining! That is what is so amazing and wonderful about this site. I’ve only been diagnosed for 3 months and having symptoms for 8 I can’t really help you with the effects of humira yet I’ve been on methotrexate for 3 months nows with very few results and hopefully I will be adding humira on Monday. I just wanted to wish you and your husband the best of luck with both your pain and starting a new family!
I am sorry to hear abut the rough patch you are experiencing at the moment. I have been diagnosed now for about 7 years now. I have been through almost every medication you can think of. I have had my ups and downs. I have been taking biologics for almost 2 years now, first Embrel, then Simponi. I strated when my son was about a year old, as none of the meds I was on worked after being pregnant. At least while I was pregnant, I had almost no symptoms at all.
All I can say is hang in there!
For your skin, may I suggests to one of those "tanning" places with a sun bed. My Mum has really bad psoriasis, and she finds that just 10 mins once or twice a week makes her skin so much better.
I am sorry you are going through this. You are not complaining, you are describing what is happening to you. It is not a good condition to be in. I can't tell you anything about biologics beccause I haven't had to take them yet (knock wood). I really hope that the meds kick in soon. I understand how frustrating the long-term "flare" is. It is hard to keep the hope that it will ever get better. And what I think most people don't get is that due to the variation of progression of this disease, we don't truly know that it WILL get better.
I can imagine its very scary thining about having a baby and feeling you are not where you want to be. You can't make your body do what you want it to do. As you said yourself, I think you need to focus on your own health right now. Get your pain under control, even if this includes methotrexate. When you feel better you can wean off of it. When you are in chronic pain and have this type of condition, the pain creates more pain. Your body compensates for swollen and inflammed joints in ways that often exacerbate other pain. If the body doesn't get to recover from the pain, it gets worse. Many of us have fibromyalgia, which for me is non-existent when the PsA is under control, but kicks in with chronic pain.
I feel like I've just rambled on forever and said nothing meaningful, lol. I'm very sorry that you're feeling so lousy. I truly hope it gets better soon. Hugs.
I've been correctly diagnosed for over 13 years and having symptoms since childhood. (I'm 38 now.) When I took Humira, it took 10 months before I felt like it had actually improved things. I hope that it does the same with you! Humira actually worked the longest for me of all of the biologics so far. Ideally, if you can wait until after you have kids to start Remicaid, it would be better. Many people, including me have severe reactions to it if you stop it and then start it again later. I know that might not be possible for you, but keep it in mind. (It is a very different biologic than all the others because they splice together the antigens using mouse and human biologics.)
I can't imagine the heartbreak of dealing with the constant flare while wanting to have kids. I know it is hard to be constantly strong through the pain, and when it interferes with having kids, it must be a thousand times harder to deal with. Keep up the hope, though. The Humira kicked in with me because my doctor kept telling me to wait it out. It was the best thing that doctor ever did. I eventually left him because of his wait it out attitude towards my flares, but for the Humira, it worked! I have found that as horrible as it is when you have those long, drawn-out flares, it can turn around in a matter of one or two days with the biologics. I wish you and your husband all of the best!
Thanks for all the feedback! Suprisingly, I'm actually feeling a bit better today. I'm praying that the humira is finally kicking in and maybe I won't have to try anything else!
I agree with everyone else, you are not complaining, you are explaining. Please remember, we all share your common issue in one way or another.
I was diagnosed with plaque psoriasis at age 13 (now 42) and dx with P.A. last January. I initially was treated with methotrexate. It worked well, but caused me to have a significant hair loss. So, they switched me to Humira, every 2nd week. A few months ago, they bumped me up to weekly. Unfortunately, I have had alot of new plaque spots form, so next Friday will be my first treatment of Remicade. I can let you know how that goes. The sucky part so far is that I have to be off of the Humira for 14 days before I can be infused with REmicade. I didn't realize how well the Humira had been controlling the joint pain until now. :O(
I sympathize with your baby woes, been there and done that as well. Lucky for me, I didn't have the whole P.A. thing going on at that time. The best advice I thing I can give you is, do what you truly think is best for you. Only YOU know how you feel.
Best of luck to you on your baby endeavor and hopefully you will get some relief from the PA soon!
hey there.. i am in the same place. :( decided we were ready to have kids, but wondering what all this pain was about. got diagnosed and put on mtx. i didn't take it for a month.. then went back to talk to my dr to see if there was anyway i could push it off until after kids. she said absolutely not. :( my heart sank. now i'm working on getting the inflammation under control so we can start a family. i am just so anxious. the day can't come soon enough when she tells me i can try. it's only been a month and a half but feels like forever!
Have you considered Simponi? It is what I am on, and one of the reasons I picked this med was in case I get preg, it is supposed to be safe. My Rhu. said she would take me off Simponi right away if that did happen, but its not supposed to bethe same as Methotrex. as far as side effects with pregnancies. I started taking Simponi in November, and I feel like an entirely new person, :o) but I still have flare ups and bad days sometimes, but life is overall so much better than before I started this drug. Hope you find something that works for you.
I wonder why my doctor didn't prescribe this knowing I was ready for kids... I wonder if you have to start with MTX because it is so much cheaper. I go back in March and will talk to her about it then...
Hey Natalie, you might be right about the cheaper thing. My dr. put me on Plaquenil first and didn't start me on Simponi until after I had a terrible allergic reaction to the Plaquenil. Its kind of messed up how they do that.
i mean, i get it to an extent. they want to see if the cheap stuff works before they put you on the stuff that costs the amount of a car. LOL. a lot of insurances require it.
Natalie, so sorry that you're having to postpone your plans and take the MTX. I actually took it in pill form once many years ago and it made me so sick that I had to stop. So immediately my guard was up when my Rhuemy suggested it. He said we could use injections, but again, we'd have to stop trying for the entire time I was on it and then for three months afterward. Since it can take up to three monts for the MTX to work, I figured that meant putting off trying for at least six months. That just wasn't an option for us. The Humira seems to be starting to help as I'm right at three months. I know the biologics are expensive, but you have the right to try and start a family when you want. Are you at least feeling better?
yes and no. the pain is definitely less than before, but it's definitely still there. some days are horrible. other days are easier to deal with. I'm not seeing the results I was hoping for, but it's still early in the game. I'm going to talk to my dr about something different when i go back in March.
I think what you start out on mostly comes down to your insurance. My doctor put me on Celebrex before I got in to see the rheumy. My rheumy put me on Simponi first thing.
MTX got rid of the P on my scalp. I take it at night (20mg tablets) and have not had a problem. I started on Humira every two weeks in early December after Enbrel didn’t do much for me. I’m not sure that it is really working yet but I guess it is too soon to tell?