Just reading what everyone has to say has really helped me feel soo not alone and that thank God someone understand, I can't tell you how some people look at you when you tell them you have PA and their response is oh its just arthritis my hands hurt all the time it sucks getting old.. I just want to choke them... They have no idea the pain that just does not go away...
I am so sorry you're going through this. I am new to all of this. I don't have arthritis..but..my husband was diagnosed with PsA a few weeks ago. I feel his pain. I also feel yours.
My hubby is on Humira. He just took his 2nd injection today. I hope it works for him. He took his first 2 weeks ago. He swore the next day he felt better! (mind over matter?)
Anyway..perhaps the Embrel will work for you. The thing I've learned in research is..you don't want this disease to progress and have permanent joint damage.
Good luck and stay in touch..we can all learn from each others experiences. :)
Thanks Marcy.... Yes I go to a Rheumy, actually going back this coming Tuesday. All my blood work came back fine. He is going to do more blood work before I even think about going on the Enbrel.
Can I ask what the difference is between the Enbrel and Humaria? Is one better than the other? Please let me know how your Husband is doing on it.....
Hi LinB..thank you so much for all of the help you do here on this board. You are very knowledgable about this.
I have a question..My DH's rhuemy started him right off on Humira. (she did give us a choice of Enbrel or Humira) We chose Humira becasue it's once every 2 weeks instead of every week.
You said the Rhurmy's usually start patients off on Enbrel and in 6 months switch to Humira. Why is that?
Thanks for the kind words. Lindy
Hi.....
Marcy, my Dr.gave me pamphlets on both Enbre and Humira... I am going on Tues. he said he would talk about them with me, so I guess it does depend on the Dr. I am still so very confused about all the meds.. I guess as time goes by it will be easier to understand all of it. Like Lindy said I guess there is no right or wrong meds, its just finding what works for you. When my Dr. gave me the pamphlets to read on the Enbrel and Humira I freaked out and said that there was no way... but after reading about it and reading what everyone who has PA has said about it, I am a little less afraid.... Please keep me posted on how he is doing... And hang in there....
Lindy, I have a question... Is it possible to go into any kind of remission on your own with no meds, or do you have to keep taking the meds when you are in remission? Right now I am on no meds after having a bad reaction to the meloxicam, I take aleve of course, and my pain is somewhat managable(meaning I can bare getting through the day and night, nothing like the paralizing pain when I was on the Meloxicam) but most of my fingers and my left foot are still very swollen. I am still scared to start a new med....
I am soo happy to hear that you are in clinical remission right now... I will pray for you that it continues for a very long time....
Thank you both for all the support and info.....
Zanna, I guess with this disease anything is possible, but remission is unlikely without medication. Some individuals can reduce the dosage of the meds and a few can actually stop the meds after a period of clinical remission. It's risky and should only be done in conjunction with your RD. It's more likely that you can reduce the amount of the meds that you take rather than stop them.
As long as you have inflammation the disease is active and causing long term damage that can't be repaired without surgery.
Each and every person on this forum was scared to start dmards and biologics. You're not alone in that respect. I had more fear of the disease than the meds. Keep us posted on your appt. and your choices. Lindy
Lin is right the meds willhelp make a remission possible. Like Linn I was diagnosed with oa and ra first then it took about 5 yrs before the dr realised something was wrong besides ra. I went into remission for about a yr but have since come out of it and am having problems again. AS Lin said everyone is different. When I was on enbrel it for sometime andit was easy to take. I gave myself the shots into my stomach and never felt it. Hnag in there and goodluck on Tues with the dr. IF it helps write dopwn the questions you want to ask the and take the list with you this way you don't forget anything you want to ask the dr about. memeHi Meme, Phantom smells would drive me nuts....not far to go. I'm glad they're doing CT scan and MRI. I'm really sorry to hear that you're in a tailspin. I achieved clinical remission for RA with Humira and my PsA is getting better but Humira is causing the skin plaque on my leg to spread. It's now covers my whole shin from knee to ankle around to the sides of my leg. NOTHING is helping. I'm going to see a derm. from the Univ. of Wash. psoriatic clinic in two weeks. I sure hope he has a miracle drug, laser, anything. I'm not whining because I have nothing to whine about. I'm doing 95% better than a year ago.
Hopefully, you can start back on meds once they get an understanding of what's going on with you. Maybe just MXT or Arava without Humira? You never know it might work. Keep me posted on the results and how you're doing. Lindy
Lindy I got the big P on the majority of my back the buttoclks, right leg starting on left leg and on the upper arms, besides scalp behind the ears and in the ears. I am getting so worried about it getting on my face. They will not put meon any of them because I keep getting reoccuring infections right now . I went almost a year in remission before this all started happening. I knew the remission wouldn't go on forever but I wished it would have lasted another year or so oh well it could be worse. Have a good night Lindy I want details when you go to the clinic maybe he would have something I can suggest to my rd for me. Take care hon. xoxox meme I am soo sorry to hear that you are both having such a hard time... I know that I am new to all of this (PA) but it just seems that the meds work for a short time, but make you worse than what you started with and then some. This is why I am soo confused and fustrated... I just came back from the Dr. and he talked to me about the Enbrel and of course I had a lot of questions. Next month after all my blood comes back ok, I guess I have to make a decision to start it or not. I to have psoriasis and have had it all my life, I do not have it bad, on my elbows, scalp, a tad in my ears and now on and off in the lining of my nose. I am soo afraid of taking this stuff and it spreading all over the place... Thats one thing I have feared since I was a little girl..... But then again I do not want to live with sever pain and deform either... I am fustrated and confused... Here I am complaining when mine has just started and the two of you are suffering soo badly... I am soo sorry....
Please let me know how you both are doing......
Zanna don't feel sorry for us, we have been dealing with this for a little while now, I know Lin is like me we don't want people to feel sorry for us. Yes I have a bad days every so often but don't we all.If you want to know what to do about the enbrel that is your decision to make but I can tell you it can make a big difference for you and who knows you maybe one of the lucky ones who does go into remission for quite sometime from enbrel &mtx. Life is like throwing the dice, you may make it big you may crap out it, but you have to give it a try because otherwise you may regret it later. Don't be agraid become informed go and get books and read up on pa go online and look at the national psorioasis website, the only way you are going to understand what is going on and make the right decision for you is to become informed. Hang in Zanna don't let it get toyou we are here for each other and that is what is improtant. meme
ps don't feel bad about complaining we all need to get it off our chest at times, so to speak so don't even thnik of it ok???
Zanna, DITTO Meme's post. LindyThanks!!!!
I have done nothing but look up everything I possibly could about PA, and all the meds that treat it, over the last few days... I have realized that I have been in a bit of denial... I felt a bit better after I had gotten off the meloxicam and with everyone telling me, (those who don't really have a clue) "oh you look fine your just swollen is all, its not that bad", I started to believe that it would just get better and that its not so bad... I have somewhat a high tolerance to pain and how I handle that is I plow through it and basically am in denial that there is something wrong and I keep putting it off (which is why it took me a year to finally see another dr.) I have become very cranky and all I seem to do is complain, and its soo not me... I think thats because I am so used to doing everything and this is slowing me down so to speak and I finally think I am no longer in denial... I think I have accepted that this is part of my life life and that its not going to go away on its own.......
Have either one of you been through this in the beginning (denial)?
I am so ready to start the Enbrel, I am so sick of the pain and the swelling and now my knees are starting to ache and I will not let this take over my whole body.....
Thanks soo much for listening and the words of encouragement... Please keep posting, hearing how you are doing and what you are going through really helps me alot...
THANK YOU!!!!!!!!!
Oh my, I'm the Queen of DeNile! I was in denial for 5 years, plowed on through everything, tried not to slow down, kept juggling all the pieces of the puzzle that was my life, and refused to admit that anything was wrong. I also have a very high threashold of pain. With RA/PsA/Oa I was never without pain.
Five years into denial I was hit with a severe onset of a flare. I was bedridden with RA and I also blew a disk in L5/S1 and was awaiting surgery. The pain from the blown disk was nothing compared to the pain of RA. Because I was in denial for so long I have irrepairable damage and pulmonary and cardiac issues caused by RA/PsA.
With that being said, I'm now in clinical remission for the first time in over 10 years. I want you to realize that you can attain remission. Nothing you are going through is any different than what any of us have experienced. We've all gone through some degree of denial. Because you accept PsA, it doesn't mean you're giving in. It means that you've made peace with the enemy and now you can move on to look for remission. If you are in denial then there's no reason to look for remission. It's only once you've accepted the disease can you start to heal. Take care. Lindy
Zanna we all go through denial. I think at times I am still going through it. It takes time to get use to the idea that your life has changed. You just got to take a deep beath and keep on going. Right now it is more important to find the right combo of meds for you. Once that is found and you have been taking it for awhile then things start falling in place, the pain gets milder and milder, you feel like you can do more than you could have done yesterday, each day goes by and before you know it you could be in remission. It can happen but worrying about it constantly is not going to make you better, you have to accept that right now you have to find first what is going to work for you to make it possible to go day to day with very little or no pain at all. Lindy is right as soon as you accept Pa things will start falling in place. Accepting the fact that you have Pa does not mean you are accepting defeat. My goodness girl, this is when the battle plan starts falling into place. Hang in there Zanna, we will make together. meme Thanks guys....
Does this stuff spread like wild fire? Two more of my fingers are slowing blowing up and the pain seems to be getting real bad all over..... I have uped my appt. to this coming Tues. I figured if I have to get approved for the Enbrel, I might as well get it started ahead of time... Can not wait to start feeling better...
Hope you are all doing well...
Have a great fourth!!!!!!!!!!!!!!!! If you're flaring it can move fast. There have been times when I have had 75% of my joints involved and the tendons and ligament in my knees, feet, elbows and shoulders inflammed. I'm really glad that you moved your appt. up. Let us know how it goes. Use heat and ice. LindyI know where you are coming from. I am 43 and have just had a knee replacement on my left knee and the right knee is approaching fast. My os did not seem to believe me that I was still experieincing excruatiaiting pain 8 months after the surgery, out of a hunch by a friend who is a PT, I asked that I bve tested for pseudogout, and even he could not beleive I tested positive. He wanted me to go on Prednisone again (been on 4 times, did not help at all and the heart palpitations were horrible. Unfortunately, I have developed an allergy to all NSAIDs blow up like a balloon and break out in hives on my face, yukky site. So I cannot take them. I went and got a good rheumatologist who is determined to find a way to help. She wants me to wait on the other knee until she finds something that really helps. ALso found out I have PA too, which could have helped degrade the knees so quickly too. I found out I am allergic to Sulfazine, but ok with Celebrex and now taking methotrexate which helps some. She wants me to start on Enbrel, which does not thrill me, but You know eventhough I am a health nut, herbs do not help these diseases. I am thankful something will give me my active life back.
Can anyone give advice on anti-depressants? I am reluctant to go on them, but with this chronic pain for over a year, it is very hard to cope. I am just worried I may have funky affects like that with prednisone. I have cymbalta, and keep staring at the package, contemplating taking it.
Hi Godey and welcome to the forum. I wish I could help you regarding anti-depressants but I can't. Usually any depression I've had has been situational and I've just waited it out and/or diverted it. I do know that Cymbalta can help with the pain. It's been approved for fibromyalgia. I don't know how it helps. Like you, I'm waiting to have my second knee done. Take care. I'm sure someone will be on the forum to soon to help you out. Lindy
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