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Re: Enbrel, Humira failed, Can't do Remicade What else
LAgalAS #113385 06/03/08 01:50 AM
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Everyone, thank you. I am desperate. I am extremely disabled. My AS involvement is extensive in neck, shoulder, lung area, rib, abdominal area, hands, arms, feet, spine and entire lower body. There is really nothing else left unless it involves heart area..

drizzit, thank you for all your links. These will be useful talking points with my doctors. None of them were recommended.

PsAsci4ever, has anyone tried Kinneret with Humira? Enbrel did not work from the day one. I am going to ask about Kinneret and your antibiotics.

oklahomagirl, You are right, my only saving grace is bilateral SI joint and hip steroid injections. I had shingle and bleeding everywhere for months and chronic viral infections due to fragile immune system with steroid injections and biologic. But since biogics aren't working and steroid are the only ones providing relief I get them. I also found out that my osteopenia is far worse.

Banana, I will also discuss all of your helpful suggestions with my doctor. BTW, I don't have active TB. But I had to take TB meds for 5 months while I was taking Enbrel. But when I started Humira, she said I don't need it any more. Apprently, Remicade has far greater chance of re-activating TB. My 2nd opinion doctor was supposed to evaluate me for Remicade and other options I have not tried to slow down destrutive progression of AS. But guess what? 2nd opinion doctor was incredible thoughless, unprofessional and worthless rheumatological consultation. I get better consultation from all of you than him. He violated my patient rights. You will be shocked if I told you who this doctor was. I am disgusted.

Banana, BTW, I read that you get Humira weekly. How and why? Did Humira biweely not help? How did you get insurance to give you weekly?

Any other suggestions would be greatly appreciated.

Re: Enbrel, Humira failed, Can't do Remicade What else
LAgalAS #113416 06/03/08 12:48 PM
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Legal, I sent a note to my friend with old TB, but she visits that site every couple months so I don't expect a response soon.

Here are two links though with information. The CBC does mention Remicade as more often than Humira and Enbrel but as they mention it was immigrants etc. At the time of this report Remicade was the only TNF recommended for Medicare people. And different doctors recommend a different TNF for their location so to me it doesn't say that Remicade was different re: TB ratio than the others.

http://www.mskreport.com/articles.cfm?articleID=2766

http://arthritis.about.com/b/2004/08/05/...actor-alpha.htm

As I mentioned, it was obvious when Humira was working (first week) and not working (2nd week). It really showed what a miracle Humira is for me. Day 8 or 9, I have to crawl to the bathroom and my ribs, my ribs really hurt. This last battle with insurance co, I started stretching out my doses to 10 days while the fight was on and it sucked. To have good days and the bad so frequently is very depressing.

Anna



Actema IV once a month (with pre loading for allergic reaction), Cymbalta x1 daily, Arava 20mg daily. Diagnosed with AS in 2004, suffered undiagnosed since 1982.
Re: Enbrel, Humira failed, Can't do Remicade What else
Banana #113430 06/03/08 02:08 PM
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Legal, with your AS being so severe/advanced this idea may not be that useful and I aren't up to date on the latest research about it but I am going to mention it just to give you another option. About 5 years ago I had treatment with monthly infusions of a bisphosphonate drug called pamidronate which is normally used for people with osteoporosis.

There was some promising research done around that sort of time showing bisphosphonates could help some people with AS.The infusions were once a month and I did get a benefit from the infusions but sadly the effect only lasted about 3 or 4 days each time.

It may be another option for you to discuss with a doctor/rheumatologist but bear in mind I aren't up to date on any research on bisphosphonates vis-a-vis AS so things may have moved on since then. I think there's also been small scale trials of thalidomide with regards to AS but I aren't sure that women are able to take it. If so would almost certainly need to be on the pill for obvious reasons.

Good luck and I hope you get to feeling better soon.

Oliver


36, Ankylosing Spondylitis, Psoriasis, Depression. Urethral Stricture Disease.

Infliximab (Remicade), Morphine Sulphate, Omeprazole, Fluoxetine, Diclofenac, Methotrexate, Folic Acid, Metoclopramide, Lyrica.

Re: Enbrel, Humira failed, Can't do Remicade What else
LAgalAS #113434 06/03/08 02:34 PM
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I am in the same boat, Enbrel was the only one that worked at all and that was only for a few months then bang nothing. Humira did nothing and remi only cost me money..My doc is keepin an eye out for any new stuff coming down the pipeline. Hes not to sure kinneret will work for me as nothing else has, but I have tried antibiotics - nothing, nsaids - nothing. SO I am only on vic's and flexeril for my coso ( thats the only one that seems to work). So I am just sitting tight waiting...I do have some confidence that he will find something, he has written alot of papers and also does research..I am trying to keep my head up ( no pun intended).

Angie

Re: Enbrel, Humira failed, Can't do Remicade What else
angiem #113448 06/03/08 04:54 PM
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Thanks everyone. I am hoping I can find other doctors to give me 3rd and 4th opinions before I call it quit. I am severely allergic to narcotics, sleeping pills, anti-seizure med and anti-depressants so treatments are further limited. I spent lots of money for physicial therapy for 2 years with no result. But learned deep breathing (which I no longer can use since I can take deep breathing because of costochondritis in my chest/lung area and rib cages) for pain management.

However, I do visualization, self hypnosis, meditation and poetry writing to manage pain without meds somewhat. However, when I can't use my hands, arms and wrists for poetry writing due to inflammation and pain, it is a bummer. Since one of pain mgmt tool gets broken.

Do you know any rheumy who is specialized in handling severe, severe AS patient anywhere in the U.S.???

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