I went to my appointment on Wednesday and after all of the exam and x-rays we will be starting Anti- TNFs in three to six weeks. She stated that she would like me to research the five she listed...
Remicade
Enbrel
Humira
Cimzia
Simponi
I am rather at a loss here----- apparently my insurance will cover most as long as they have a letter of treatment goals and objectives from my provider. She said she will do whatever is needed on her part to speed the process along as soon as I choose.
Therefore, this ball is now in my court and I need help. I would choose the Remicade based on the loading and time concerns... I choose not to let this run my life and I'd rather have more time that I do not have to think of my big-gun med dosing if I have my " druthers"
So a little info about dosing experiences and how individual drugs may affect your daily lives would help me to choose wisely.
In the meantime I am taking 600 mgs of Gabapentin and a new anti- inflammitory for me...Diclofenac, 75 mgs twice daily along with my Lisinopril for Hypertension and Summatriptan for Migraine as needed.
I am overjoyed to have been offered Aquatic Therapy three times a week as I now have a driver and can get around easier and more frequently!!!!!! I think this may just turn out to be a great Christmas gift to me. I grew up on Lake Pend Orelle in North Idaho and I miss the water......... too freakishly cold for me in the last ten years to enjoy.
Sounds like you have a big decision to make! My rheumatologist basically did the same thing - mentioned the three he thought would do best and asked me to pick one. I started with Enbrel (weekly self-injection) and it didn't do everything we wanted it to do, so I switched to Remicade. Time-wise, the once a week self-injection was less time consuming - it took less than a minute after the allotted time to bring the injection to room temperature (cold injections HURT!), The side effects were practically non-existent for me. The Remicade, even though it's every __insert number of weeks here__ weeks (mine is every five weeks), it takes about three hours from start to finish for me. I arrive, sign forms, take tylenol and benadryl, get settled in, get iv inserted and get hooked up, 2 hours of infusion, and another 10-15 minutes before I'm out the door. That said, I have five homeschooled kids, so I LOVE the three hours of me time! LOL
Consumer reports picks Enbrel............. I shot mine in the car on the way home last night (I wasn't driving)
Remicade would be my last choice. but then sitting still for a couple of hours, having to be at a particular infusion center, in a rigid time frame absolutley doesn't fit my life style. Nor does the preloading of meds for possible severe reactions. Also it almost requires the addition of MTX to avoid the antibodies from building.
I have had no eye involvement so at present I make sure to use one that does not treat eye issues. My reasoning may be strange but I figure if I'm going to burn trough one. I don't want to do it with one that treats the eyes - I may need it later.
I do have eye involvement. Would you be willing/able to share the ones that do treat this so I can eliminate the ones that do not? I am concerned about the MTX but prepared and fore armed with the good knowledge I found here just in case. I think I am still leaning to the Remicade . I have the hours of time and I need those hours away from my disabled spouse for both of our mental health.:) LOL I understand why you don't want sit down time with your stiffness issues!
I am really worried about headaches after dosing as I am a migraine -r. I don't have issues with self injecting so that wouldn't bother me. However, my spouse is so terrified to even discuss this with me that I think not keeping any meds in our fridge might better for his sake. I live in a rural area and getting to the pharmacy every few weeks can be difficult if I am awaiting the plows.
Interesting. My rheumatologist gave me the same choice. He suggested I not pick Remicade, because the provincial drug plan (which will cover me in three years) doesn’t pay for it. I picked Enbrel because it is the oldest of the meds, reasoning that it is the one about which the most is known. Other than that, it was eeny meeny …
Let me preface this with....meds work/don't work for different people differently. The following post is only about MY experience with the meds, but not necessarily indicative of what your experience will be...
I've been on Humira, Enbrel, and Remicaide (not at the same time, obviously). When I began my journey with biologics, I started with Humira. It worked for a few months, but over time it stopped working for me. So my derm. added MTX. (this was before I even knew PsA existed). Once I was diagnosed with PsA, my Rheumy took me off the Humira (by this point it was not working at all), and switched me to Enbrel without MTX. It worked for several months really well. Then things started going downhill again so the Rheumy added MTX. After a while, my psoriasis was under control and my PsA seemed to be getting better. Then it stopped working also. So...the Rheumy switched me to Remicaide with MTX. As far as I know they do not prescribe Remicaide without MTX. It worked GREAT - but I was only on it for 5 months because when I moved to OKC I couldn't find anyone to infuse it for less than $■■■■■■■■ each time, which as a self-pay patient I simply couldn't afford. So I switched back to Enbrel. My psoriasis went crazy, and my PsA is out of control. Now I'm getting ready to restart Remicaide. (just got approved for the patient assistance program TODAY!) I don't know how well the Remicaide will work over a longer period than 5 months, but I have hope that it might just be the one for me.
Side effects for all of them have been similar: hair loss, nausea, fatigue. The side effects on Remicaide seemed to be more acute, but shorter in duration. After my first two doses, I felt human again, so I was more than happy to deal with the side effects!
I have been on Humiria, Enbrel, Simponi and Remicade with and without mtx. For me Humiria and Simponi did not seem to work much at all. Enbrel did with the mtx for about a year. After a few years we tried it again and it worked for about 9 months that time. Some patients with Ps A build antibodies to the biologic and it stops working, for me in about a year. Right now I am on Remicade with mtx and it has worked far better than anything else. You may have to try them and see what works. And if you too build antibodies you may end up trying them all like me!
What a great group of replies . I thought I might be overwhelmed by asking but it is really very enlightening. Humira is beginning to sound like the best choice when I think long term, if it is best for the eyes I may have to go with that as I am losing sight and color differentiation along with night vision very quickly.. two years and I have gone from the same for forty years to glaucoma watch with continuing sight issues and pressure changes.
I talked with the nurse today and she said that they will most likely pay for the Enbrel or the Humira , although they will do the others with a fight if necessary except for the Simponi. They normally do not pay for the Remicaide until after I have tried at least one injectable first.. This is info I did not have before.
I do not have psoriasis bothering me at this time. Thank the Lord and may I never have it that bad again. I would not wish that on my worst enemy. It has gone dormant for awhile and the RA and OA are taking over with a vengeance. I learned I also have fibromyalgia (not surprised). I will have testing with a possible lumbar puncture to determine the AS factor and take the rest of the spinal x-rays. They did the hips and pelvis yesterday.
I cannot believe I lived through the pain for all of these years and worked twelve hour days on a tylenol and coffee! I thought it was mostly caused by the psoriasis and the fact that I simply worked hard everyday and played even harder on the weekends.I have never had a DR. cry before in front of me and when Dr. -- picked up my hands to examine them she looked at me with tears in her eyes and asked how I function with this like this. I have OA nodules on every joint and RA in the hand knuckles, they are always hot. I wear gloves even in summer when it is chilly out at night. I looked at my kitchen and noticed that over the years the children have purchased every arthritis device for my cooking ease that they could find. i have to cross my hands on my chest or put them behind my back when I walk through doorways or in tight spaces so I do not bang them on anything OUCH!!! because it makes me cry and I cannot help it. And yet I am still crocheting and playing the piano as long as I can every day in order to retain the ROM or I would lose it in a few days.
I cannot wait to get this underway and start moving forward again. SSI will be making their final adjudication in my case next month so I would really like to see the treatment started so the judge can see I am trying. I cannot work and take care of my disabled wheelchair bound spouse any longer... it is one or the other. Since they will not pay me to care for him ( We provided elder care for twenty years before I switched to babies) that leaves me in a serious conundrum.
Hugs to all of you for being here for me every day...XXXXXXXX Thank You! :) Keep those experiences coming.......
Who is your insurance? Humira is difficult to get approved as well, especially with united health/CVS. Both Remicade and Humira are the top two RA injectables and Don’t give the best of deals. Well, I hope it goes smoothly.
I have federal SSi insurance through DSHS. It is open ended however, due to my situation and as long as my DR says it is needed, it gets approved. The only thing they did not approve was a prescription for anti-nausea I had last spring ,something that starts with a Z but I do not remember the name. They gave it to me in the ER when I had migraine so bad it gave me chest pains from the dry heaves. Pharmacist said it was a cancer drug and since I did not have cancer they could not provide the prescription but they paid for the injection at the hospital. So who knows for sure what they will do.
I have been on the six hundred Gabapetin for three days now and I am an emotional wreck. I have been taking this for a year at the lowest dose so I did not expect the teenage emotions that seem to have appeared as soon as I upped the dose Wed eve. I am hoping it might just be due to emotional exhaustion and Holidays. It was such a fight just to get to treatment that I believe I am just downloading all of the leftover angst and frustration. i hope so because so far I like the symptom relief I seem to be getting. However, it is a crazy trade off. I am still trying to dump the last of the steroids from my system as well so the up and down is not good for anyone.
Well, I'm off to throw things around a bit while I try ( operative word here) to wrap some gifts. A little White Christmas and a cup of chamomile and I'll be right as rain ! hugs to all of you for being so dedicated and kind.
I have recently started on Actemra with only a little bit of improvement. It gives me nausea and diarrhea. I just was diagnosed with glaucoma and will have eye surgery maybe this week.
I was on Humira, with MTX , which did nothing. Then on Enbrel which worked initially and then just several months in, stopped working, plus it left me with endocarditis which is an infected heart valve. So they took me off of everything and it's been months, traveling from rheumy to rheumy (my best rhuemy is in NYC but I no longer have transportation there). All the ones I visted were too nervous to put me on an anti-TNF...Finally I found one who is willing to take the risk....He was very emotional also as he examined me...Kept saying "This is so bad" ...My former rheumy also cried as she looked at an MRI film of my neck.
Now I'm on Actemra and MTX, dealing with side effects and not positive that they are really working.
All that to say that Enbrel gave me no side effects , was convenient, and worked well for a number of months.
crazylady said:
I have federal SSi insurance through DSHS. It is open ended however, due to my situation and as long as my DR says it is needed, it gets approved. The only thing they did not approve was a prescription for anti-nausea I had last spring ,something that starts with a Z but I do not remember the name. They gave it to me in the ER when I had migraine so bad it gave me chest pains from the dry heaves. Pharmacist said it was a cancer drug and since I did not have cancer they could not provide the prescription but they paid for the injection at the hospital. So who knows for sure what they will do.
I have been on the six hundred Gabapetin for three days now and I am an emotional wreck. I have been taking this for a year at the lowest dose so I did not expect the teenage emotions that seem to have appeared as soon as I upped the dose Wed eve. I am hoping it might just be due to emotional exhaustion and Holidays. It was such a fight just to get to treatment that I believe I am just downloading all of the leftover angst and frustration. i hope so because so far I like the symptom relief I seem to be getting. However, it is a crazy trade off. I am still trying to dump the last of the steroids from my system as well so the up and down is not good for anyone.
Well, I'm off to throw things around a bit while I try ( operative word here) to wrap some gifts. A little White Christmas and a cup of chamomile and I'll be right as rain ! hugs to all of you for being so dedicated and kind.
I'm about to be in a similar situation, need to pick a new med but my choices are more limited as I've done Humira and Remicade. I will tell you, Humira was really no big deal, one shot every 2 weeks and then didn't have to think about it at all. For me, it was easy, I had no side effects at all. Unfortunately, it didn't work. Remicade was much more difficult in terms of time commitment at the infusion center. It was working, my labs were normalizing, however on my 3rd dose I had a severe allergic reaction and now that's off the list. I can't take MTX as I'm allergic to that, too.
SO, back to the drawing board. My Rheumy and his staff keep assuring me we WILL find the right drug for me. I hope the same for you and with much less trial and error!!
I got my ADEM from Enbril. I am still trying to relearn all the stuff I lost because of the Enbril induced ADEM. I tried a lot of different drugs and landed on Xeljanz.
I was also told to choose, I was only allowed to pick between Humira and Enbrel though. My dermatologist just doesn't believe there is enough supported studies for the other drugs even though I have looked at the National Psoriasis Foundation website about these treatments. Here you can look at each available drug and click on the fact sheet to see more in depth information. http://www.psoriasis.org/psoriatic-arthritis/treatments/biologics
I chose Enbrel. :-) I just started it last week, the sureclick self injection is painless and very easy to do!! I have heard Humira hurts!! So far, I have had no side effects. Oh and you do it twice a week, I do mine on Monday and Thursday. I do not feel any different that day and I went to work both days.
The red circle is what my injection site looked like after a few hours, no bruising like Humira and it didn't hurt! It was recommended to do it in my stomach for less pain and also I wouldn't try to jump and move my leg which in turn would waste a $2800 injection. You can do it in the thigh if you want to though.
I would like to add that I did have Rhinitis, which is inflammation of the mucus membranes in the nose. I normally have allergies so this is something I am used to. All I did was rinse my nose out with a saline spray for the nose and then spray my Nasonex which is for my allergies. It went away the next day. You can also take Claritin, Zyrtec, or Allegra which are all available as generic too. Rinsing the nose out is important so you do not develop a sinus infection, you need to rinse out the mucus.. :)
As far as the biologics, I started on Humira , was working but not as well as expected, so was switched to Enbrel. So far so good on the Enbrel, easy once a week injections and it's done. I like the Enbrel also because the Enbrel Support Program is awesome, I pay $20.00 for a shipment of 3 months and Amgen reimburses my insurance for the remaining $2,200. It's not based on income , the only stipulation I think is that you cannot be on any government insurance ( Medicare, etc.) Just go onto the Enbrel website , it's all there. Also on mtx and Celebrex,
I was reading the other posts and have a question...what are the eye problems from the TNF's? I have dry eye, from Sjogrens and use Restasis x4's /day, but never knew about the other eye problems. Are they a side effect of the meds or from the PsA directly? I'm 59 and at my last ophthalmology visit was told I had a small cataract in my right eye (I think old age is creeping in !) In this eye I also had a posterior vitrious detachment a year ago, fortunately that healed well without any problems. Any help/answers are appreciated !
Crazylady, I hope you find the correct med for you. Sounds like you have enough going on and finding a good workable solution would help you immensely. I wish you luck and hope all goes smoothly for you ! Hang in there and continue to be the smart patient it sounds like you are :0)
Over three years I have been on all you listed except remicade because Medicare doesn’t cover enough for me to afford. I just started Cimzia and for the first time have seen the psoriasis itself recede however the pain and swelling in my joints had not changed. Maybe after the full three months I may see it happen.
