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    Old 08-31-2012, 02:06 PM   #1
    jade301
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    Question Biologic Question Any help is appreciated

    have had psoriasis (75% coverage) and PsA since the age of 15 (17yrs now). I have used many treatments, everything from steroids, topical steroids, light therapy, laser therapy, oral medications(accutane), and biologics, I first used Enbrel for 5 years, Remicade for almost 6, lastly Humira for 4 months. Out of all of these the Remicade was the most effective with the least amount of side effects for the most of the 6 years. The only reason I stopped was the efficacy of the Remicade started to go downhill. I was only getting 4 weeks of relief with infusions every 6 weeks. We tried changing the dose and dosing schedule, but when we did that I started having more side effects from the drug. I had increased itching and almost a lupus like effect from the increased dose so after talks with my Rhuem and GI doc we decided to switch to Humira.
    Things started to get really bad toward the end of Remicade and the start of Humira. I ended up in the ER 6 times with 2 hospital stays. I had a wide array of symptoms; I was sweating buckets but cold, more tired than normal (I would fall asleep eating sometimes), I was also very emotional/teary, my blood pressure was all over the charts very high(210/120) or very low(70/40) I have never had problems with my blood pressure before, I was unable to get comfortable no matter what i tired, my skin would get flushed/red, I was constantly nauseous with bouts of vomiting and most times unable to eat or even drink. Also when I had these episodes I would end up with red inflamed joints at the end of the day, I was having a lupus like reaction with the Humira as well. I would try to put up with this as long as I could but I would eventually end up in the hospital dehydrated. I have been through almost every test in the book and have no answers. I have also seen many specialists. All of my inside structures/organs appear normal so the doctors are having a hard time coming up with a reason.
    I started slowly been cutting medicines out of my life to see if maybe one of them was the culprit, the only ones I didnt stop were my pain management meds and the Humira. After the most recent stay at the hospital I took a chance and stopped the Humira and havent had any episodes since then.
    The list of biologics for psoriasis/PsA is a pretty short list and I have tried most of them. I feel like my only options right now are to go back to the dose of Remicade that didnt have adverse effects, go without until something new comes out, or try Stelara. Stelara seems like the best fit for me out of the ones to try that help both diseases, plus it is not a TNF inhibitor so it might cut back on the side effects/symptoms I was having daily.
    I was wondering if anyone has similar effects with the TNF inhibitors(Enbrel, Remicade, Humira) if so was there something else you tried with success? Was there a compliment medicine that helped cut back on the side effects like methotrexate or a course of prendisone.
    I was also wondering if anyone had any experience with Stelara, If so, were there any side effects or uncomfortable effects?
    Sorry this is so long, I feel like the background info is important as someone might be able to relate. I feel like I am at a loss for what to do next, so any help is greatly appreciated

     
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    Old 09-01-2012, 09:46 AM   #2
    Moldova
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    Re: Biologic Question Any help is appreciated

    Hello,
    I understand what you are talking about and I am sorry your experience with biologic treatments so sad.
    I am not sure if I understood you right, forgime me if not; is this true that your DR took you off Ramicade and put you on Humira right the way even though you had side effects being on Ramicade? If this is true, this is so wrong!!
    When I get sick from side effects, my Dr gives me 4-6 weeks to clear my system from the drug and only than she starts something new.
    My first Rituxan infusion almost ended my life; I was very lucky to have such a great team of doctors and nurses who knew exactly what to do. Oxygen takes were right there in no time. I had to be off all RA drugs for 2 month until I started another drug.
    All RA medications, Enbrel and Humira included gave me flu like symptoms, fever included, sore throat, chills and my every day low blood pressure also was jumping from high to low. I didn't go to ER with it because my RA DR gave me her cell number and insisted to call her 24/7, weekends included. So when I get my symptoms, I immediately report to her and she decides what to do.
    We all very different and so our reactions to Rx medication. I met older lady who on MTX and Enbrel for 10 years and has 0 side effects. I was so sick on MTX and after 4 month I was off it. I lost 17 pd during this time, wasn't sure if the treatment worth to be on it.
    You lucky to be on your drugs for such a long time. My longest was Orencia infusions for 8 month, rest of my drugs from 2 month to 3 month tops. Some only 3-4 weeks only! All patients I know or read here, reach their plateau pretty soon . When I asked my DR why Orencia is not working anymore, she said this happens with all biologics, they don't work for a long time. Maybe people who don't have advanced disease, or obvious symptoms don't even know if drug works or not.
    My DR is the one who recommends to stop the drug; if she sees my ankles/knees/hands/wrists swollen, stiffness - she knows this drug is useless for me. Sometimes I feel better and think drug is working, but she feels it's not and takes me off it.
    While ago i read on some board about lady who had PA, same as you. She wanted to know if this is OK that she is on Humira for 2 years and her symptoms never disappeared. I shared with her my experience and she confronted her DR. After all, she had to change her DR b/c he didn't monitor her the way good Doctors do. Her new DR told her that Humira not for her since all her symptoms were there with no changes.
    I get very upset reading this; how dare some doctors keep their patients on such dangerous drugs with no improve? This drugs may cause cancer, as we all know, people may get deadly infections and die on these type drugs b/c immune system gets low.

    I hope this helps a little...
    Wishing you good luck with your treatments.

    Moldova

     
    Old 09-01-2012, 03:43 PM   #3
    jade301
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    Re: Biologic Question Any help is appreciated

    thanks for the reply and all the helpful info..yeah they did put me on humira after i had symptoms from the remicade but they were not like symptoms I had on humira. She didnt think it would carry over because of the difference in the molecules. I havent tried mtx as I have been terrified of the side effects. The good news is I am seeing a new rheum tuesday so hopefully we get some things figured out there, my old thuem could barely be bothered while I was in er/hosp. I know I am lucky that the meds worked so well fo so long I know a lot arent that lucky. I know the horrors of these autoimmune problems all to well, I have been sick for 17 year and i lost my father 6 years ago, he was 56. It all boiled down to complications of the severe autoimmunity that runs in the bloodline.
    From the research I have done I am down to stelara, which is approved for psoriasis but is showing good promise in trials for PsA. I could also try the remicade again on the dose/schedule I had before the symptoms started, but I have been reading and have been told that starting remicade again can be dangerous.
    These drugs are very dangerous thats why I try to keep up with all the data that I can and question my doctors the best I can. I just have a worthless rhuem. The only reason I stayed was the infusion center was great, one of the best. I used to look forward to infusions because they helped so much.

    Thanks again for all the info its been very helpful.

     
    Old 09-02-2012, 11:03 AM   #4
    Moldova
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    Re: Biologic Question Any help is appreciated

    Sweetie,
    I am so sorry about your daddy, what was wrong with him? Not easy for sure, I lost my dad and almost 3 years later I still cry thinking of him.

    Ramicade - you have to check your eyes pretty often, it may affect your eyes permanently. When my eye Dr discovered I have problems with my retina, permanent as well, he immediately asked me if I ever was on Ramicade. If you check your eyes, you will be OK. No drug is a good drug, but biologics much more dangerous. My friend for years on Ramicade+ Prednisone and is doing much better than I am on every possible RA treatment, all biologics tried. Every disease has mild and advance stages; I am sick since 12 with RA, so my RA is very advanced with a lot of permanent damages to lungs and heart included. So my RA has a very hard time with my treatments. I am under her care for 6 years now and I had never been in remission. Nothing is working. She told me that she sends me for second opinion to the best RA Hospital in US. This DR herself is one of the best DRs for RA, can you imagine she decides to send me for 2 opinion? It takes a big person and a big Doctor to do so. Many of doctors get offended if you ask your records for second opinion.
    So what I am trying to tell you: no need to waste your time going to a DR who doesn't care. Thank God we have many good once and for who we are not just numbers. I am not a Dr by any means but it scared me when you wrote in your first post that your Dr overlapped your first drug with Humira without giving your system time to "clean" itself. Usually they don't do that if patient has even mild problem with one of the biolgoics. My DR is extremely careful and carrying.
    She gave me her cell # to call her 24/7 weekends included. I live in NJ and she works in NYC, yet before I go to ER, she is on a phone with them until I am released and if not, she works with DRs at the hospital I am. This I call a Doctor. Don't think I just found her right the way. It took me 3 years and 5 RA offices, a lot of disappointments and tears. When my PM Dr suggested me to see RA DR he said this one is one of the best RA in NYC. He was right.
    You can call me a pain, but I know good doctor - bad doctor. No way I am wasting my money and time on bad ones, sorry.

    I wish you to stay well; hope medicine finally will bring you relieve and good results.

    Moldova

     
    Old 09-02-2012, 11:43 PM   #5
    jade301
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    Re: Biologic Question Any help is appreciated

    My dads ankylosing spondylitis was so bad that his spine curved dramatically and his ribs started caving in on his lungs making it really hard to breathe. he was on oxygen 24/7 with a Bi-pap machine to use when he slept. He also had severe joint problems with his hip and knees. You couldnt look at him without knowing something was very wrong. I never remember him being able to stand up straight, he also got sick young, It almost seems the younger you get sick the more sever it can be. He also had sever chrons and developed psoriasis. He was also taking remicade and it worked pretty well for him. He ended up with a tooth infection that made its way to his mitral heart valve so he had to have it replaced, after 6 weeks of IV antibiotics, he made it through the heart surgery like a champ, the docs thought he wouldnt. Plus because of the breathing problems he wasnt exchanging gasses right so Co2 was building up in his system making him confused. We had to call 911 because he was non responsive but was still breathing and everything, his eyes were open but no one was home, He had to be taken to a trauma center. That basically started a 6 months stay for all of us in the hospital =, he never spent a night alone there. It seemed like the longer he stayed the more they found wrong, the put in a feeding tube for no real good reason, he had never had a problem eating and never choked. Once they put it in it was nothing but problems always infected, always clogged up. The kicker came when he built up some fluid in the cavity around his lungs. The doctor emptied it and treated it like it was no big deal, after that he started acting weird and the nurses blew me off. I had taken care of him for almost my whole life, I knew something was wrong but they just kept telling me he was in pain and would give him pain meds. i started hunting the nursed down in patients rooms which i know is not cool, but something was wrong. Just a few minuets later they had to call a code blue because he wasnt breathing. It turns out the doc hit a major artery during the draining and he bled internally.I honestly think the doc hit the artery because my dads anatomy was very different than someone with a normal spine because of all the damage, they really should have done the procedure with some sort of imaging guidance because of the abnormality. After 2 emergency lung surgeries he never really made it back so I honored his wished and took him off the machined and home where he made it another 8 hours, the weird thing was he waited until the very last family member got there, we have a huge family, he had 15 siblings and tons of nieces and nephews etc. But it was peaceful and just the way he wanted it. Sorry its such a long story but a lot happened. I still cry a lot too, but its getting easier. I was only 26 my youngest brother 18.
    I have been sick since I was 15 it went from 0 to severe in no time. I had a great GP in MI but moves to CA 4 years ago and it was so hard to find a doctor. I just in the last year found a great GP who is great at coordinating my care and treating my pain well. He isnt to proud to send me off for second even third opinions nor looking things up if hes not sure. He also talks with with other doctors about the complexity of my case so I feel pretty safe with him. My first MRI at 16 confirmed what the doc thought all along, arthritis. My spine was curving and I have degenerative disc disorder pretty bad through my cervical and lumbar spine. I also have chrons.
    My rhuem wasnt worth seeing but she served her purpose. She was also the 3rd one I had seen and i was so tired of being mistreated that I just out up with it because it wasnt so bad with her, even though she made some demeaning comments. The pain doctor she sent me to was the worst doctor I have ever seen, within 3 minutes of meeting him he said he knew what was best for me. He also kept trying to push surgery which isnt something i am willing to do. The degeneration is just going to continue on its own and my spine will fuse on its own, no need for surgery. He would give me my pain management meds but not without humiliating me first I never left his office not it tears. I am looking forward to meeting a new rhuem this week but nervous because you never know how its going to go. I am going to keep trying out doctors till i find all the right ones to be on my team. I am tired of being treated like a second rate person. I deserve the best just like every other patient and I am going to get it.
    I am sorry that you have been sick for so long and that it has been so sever that its affected all those other body systems. You are right that the more sever cases are hard to treat. I tried everything under the sun and nothing worked until the biologics. It was the first time my skin cleared. It was the first time I didnt wake with awful stiffness in all my joints, and I am mad that it has been taken away because they just dont work anymore. I have never been in remission either. I dont want to go back to what it was before though. Hopefully this new rhuem has a plan.
    Thank you so much for the conversations, I have enjoyed them and they have helped me a lot Write back if you would like!

     
    Old 09-03-2012, 11:40 AM   #6
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    Re: Biologic Question Any help is appreciated

    Hello once again!
    The fact that your skin cleared and your joints were not stiff anymore, this is a good sign. But Unfortunately all biologics are short live. I heard from my RA DR and read as well that too many people live on biologics for years and years not knowing that this is useless since they don't work and reach plateau pretty fast. Like I told you I had the best results and the longest too with Orencia Infusions, 8 month and than stopped. Only people with severe symptoms, swollen joints and soft tissue, stiffness may know if drug is working or not. People who have mild case of RA, they don't have too many symptoms and usually it not severe. So they are on biologics for years (I met a woman who on Enbrel + MTX for 10 years) thinking they doing good b/c of biologics,meanwhile they would have same results not being on them. This is why they say mind-body, is in it right?
    Biologics are not vitamins, they have to be used only if they help. People may develop cancer from using it; so why use them if they are useless? This is why my RA is extremely careful. I may tell her that I feel better but she sees swollen joints still, she takes me off drug I am on and changes to something else. I was really upset when Orencia stopped working, I was so happy on it. But than I read that usually 6-8 month for Orencia is a pretty good results, for some not even 2 month.

    Sweet heart, I read about your daddy... I am sorry what you and your young brother went through. Is your mom still alive? This must be so hard to see your loved one in such poor health suffering. I am sure you are smart and strong young woman and this sad experience will make you only stronger. I wish you and your brother better future than you daddy had. You are not the first person who told me story about their older parents enter the Hospital and never come back b/c of care they get there.
    My Mother in law had her sinuses surgery at age 76. Dr told us she is going home in 2 days due to age. Well, when we came next day after surgery again to visit her, she wasn't in a room; nurse said she is having MRI. Why? She had her MRI right before the surgery! It wasn't a big deal surgery, just to clean it from build up. In the afternoon they did a CT scan. Strange is in it? Some younger people who pay big $$$ for insurance sometimes needs that MRI or CT and can't get it, here they do it for a person who absolutely doesn't need it.
    Next thing we know, they scheduled next day, the day of her going home, a gastroscopy. Why? Nobody had an answer but just "a resident's medical decision". Guess what? We signed her off and let her go home. No way we let them make money on our mom. If you see the bills they sent to her Medicare! No wonder why Medicare is in bad shape. We know now all too much to leave our loved ones in the hospital and to agree to everything they do. And don't feel bad for being rude to nurses, they had to treat you and your dad better. At least tell you what they planning to do.
    I don't let anymore poke me more than once; you didn't get it - bye, bye and call someone who is good at it. If you need training, please learn on your own mom or sister, not on me. I don't feel bad about it, this is not my fault they don't have enough practice to do it well. Sorry...

    Please, take good care of yourself and about your Chron's. This one is a serious condition if left untreated, don't take it light.
    Don't you be afraid to change your Drs if you not happy. You are smart young lady, you know what is good and what is not, you do your best to get all the answers. We pay a lot of money for our app, so we deserve better doctors and better service. Same as you, I was very hurt physically and emotionally when my previous 3 RA Dr's wasn't any help to me. I worked very long hours, demanding job so I didn't have much time to spend on Dr's app. I had to go sick for years with no help just b/c I was very disappointed and if it wouldn't be for my PM who presumed I suffer from more than just complications after spinal surgeries and Arachnoiditis and sent me to see excellent RA DR, I don't know where I would be. I was diagnosed not only with RA, but Lupus and MS. All my Doctors didn't believe that one can function with such severe health issues, they offered me to be on Research trial and I did it for the sake of other people.
    People are stronger than they think, we can survive anything and everything and somehow function. My believe that still things could be much worse. I can't walk? Thank God for wheel chair and scooter, walker or cane, right? Life is going on, girl! Keep going and taking good care of yourself. You deserve it all. You are still very young, fight for your life and too feel better.

    God bless you, wishing you well
    Moldova

     
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