Hi everyone. I need help. I did not get any relief from Enbrel at all. And Humira is not much better either. I can't take Remicade according my doctor because I had active TB when I was a baby and the risk of re-activating TB is extremely high for my case. Can't take NSAIDs because of stomach problem but thanks to someone on this forum I just started using very expensive topical NSAIDS cream 3 days ago hopefully it will help a little. But my doctor said I can't use NSAID topical everwhere either because of sideeffect I will likely have and I can't afford it. Not covered under insurance and very, very expensive.
My inflammation, pain and stiffness is unbearable and out of control. Any recommendation. Also, is anyone taking Remicade even though they had active TB??????
First IL23 drug is due out this year. You could talk to your doc about this. It would be off-label so it may be expensive. NO costs have been announced yet.
It is coming out for psoriasis but the research says it may really help AS.
I can give you a link if interested on the psoriasis trials and the drug.
Here is one story on IL 23
http://genome.wellcome.ac.uk/doc_WTX042243.htmlThere are alternative routes many go when medical science fails us. Radon, antibiotics to name two. There are studies to back these two up btw.
I would really appreciate it if you could forward the link. Also, where can I find out about the research information about Radon and antibiotics.
My second opinion doctor gave aboslutely no medical or laterative routes even though my case is extremely severe. Gave me absolutely no hope for any treatment.
Here is the antibiotic trial
http://www.thefreelibrary.com/Treatment+of+ankylosing+spondylitis+with+moxifloxacin-a0162977401radon Info:
http://www.ncbi.nlm.nih.gov/pubmed/14673618?dopt=AbstractI personally know two people who treat with Radon and swear by it. In europe it is prescribed by the docs and covered by insurance. It makes me nervous for the cancer reasons but if I had no other choice I would probably do it. Here is a discussion on another board on it.
http://www.kickas.org/ubbthreads/showthreaded.php?Cat=0&Number=259552&an=0&page=0#259552I will dig up the IL23 study LOL I need to organize my bookmarks better.
I also posted about Cimzia above that was just approved. It is also off-label so would be expensive to try if you could talk your doc into it.
Best of Luck
Steve
I've had amazing results with Kinneret (although I am also on Enbrel). I have had some success with the antibiotic, doxycycline.
Orencia is another biologic although I have never heard of it used for AS. Theoretically it might help.
There are also a vareity of IL-12/IL-23 inhbitors in various levels of drug development. Hopefully one of these will come out soon. There is a possibility that these drugs will help people who haven't responded to TNF inhibitors.
Rachel
LA,
Have you tried Enbrel or Humira with another DMARD? Like Azulfadine or Plaquelle? Me---First Humira failed, then Enbrel failed, when I started Remicade they made me (I had refused before) MTX and Remicade didn't fail me for over a year. So then I went to a Doctor at Hospital Special Surgery. They do a lot of research and really keep up on what is happening.
I was put on Humira again with MTX and it worked again for another year.
Then I tried Orencia, it worked only partially, never near as well as Humira at its best. Its never been sold as "for AS" but my doctor changed my diagnosis to Inflammatory arthritis which covers many different diseases for the insurance. It is worth trying though it works by a different way.
Went back on Humira with MTX and Azulfadine and it worked again. So its been my third time on Humira and it is working. So even though I went through all three TNF's by 2006, I am still plugging away and doing pretty well. Humira isn't working as well as it did but it is still better than nothing.
All the antibiotics count as mild DMARDs, which would compare to Azulfadine. Because that bacteria theory has been disproven. See Johns Hopkins. They are also really discouraging any use of antibiotics because of the serious increase in C Diff the last 3 years, which is a germ in your digestive track that "turns bad" because the good germs are killed by antibiotics. If you can't have NSAIDs, antibiotics might be bad too.
A friend on a RA list (I'll try to find her) was started on TB meds and then 4 weeks later on a TNF. She was told all TNF's increase TB risk not as you were told Remicade worse than Humira, Enbrel so it seems if they were fine so would Remicade. She was able to get off the TB meds after 3 months on TNF.
Maybe you should see another doctor and get another opinion. I would be careful using the word "active TB" unless you are on TB meds. If you aren't is it really "active"? Seems strange they are limiting just Remicade while letting you use Enbrel and Humira.
All the best, Anna
I have been on enrel for 4 years. It is not working so well now.
My rhemy put me on a methyiprednisonolone pac for a week, but it did nothing. I saw him on friday and he did steroid injections in my heels. I have not had any relief yet but still hoping.
He also gave me a perscription for methotrexate and folic acid. I have not been able to start the methotrexate yet because I have to wait for the blood work to come back. I will be using the met. with enbrel. I have my fingers crossed.
Another way you can get some relief is with steroid injections. I have had many in my back and they work for me for about 6 months. Its not a cure however it does give me some relief for a few months.
I will let you know if the met with enbrel works.
I so understand how you feel. I wish there was more I could tell you. Another thing I do is pray. This does not take the pain away but it does help me stay strong.
I pray for the best for you.
God Bless
Raquel
Actually Anna I don't think the bacterial connect to AS has been proven or disproven. There is evidence to support both positions but nothing, I have seen anyway, that really proves it or totally disproves it. I do agree with you that overuse of antibiotics is a very bad thing and we don't want to use them except as really needed. If they could help severe AS cases I would say that is really needed frankly.
If you read that study they also mention that some antibiotics are fairly strong TNF blockers and this may be what helps the AS.
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.
Banana, if you can find out if your friend's doctor's view on Remicade, I would greatly appreciate it.
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.
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=2766http://arthritis.about.com/b/2004/08/05/...actor-alpha.htmAs 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
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
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
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.???