Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Newly diagnosed with questions

Hi All!
So I was finally diagnosed with AS. As with most people getting a diagnosis took forever. My doctors have been blaming running for about 8 years (I am 27 now). To further complicate things I was diagnosed with Ehlers Danlos Syndrome earlier this year which further confused the issue. OK..enough whining! Onto my questions...
My rheumatologist prescribed Enbrel yesterday. I was put on high dose Ibuprofen during my last flare up and developed drug-induced hepatitis. Liver enzymes finally normalized after several months. Does anyone know if having an idiopathic reaction to one drug predisposes you to hepatic reactions to other drugs? Also, how often do you get your liver function tested?
I am in my second year of medical school. After reading accounts of the post injection wipe-out that many people seem to experience I was wondering what day is best to inject. I spend most weekends studying constantly so I need to be alert. Any advice?
Next year I start my clinical rotations at Jackson Memorial Hospital in Miami. The hospital is well know for it plethora of exotic diseases. How should I handle this? Is taking this medication even a smart idea?
Sorry for the long post! I would greatly appreciate any and all advice.

Runnergirl,

First,

!! We are glad you found us!! Read alot and post often..we are all learning from each other!!

I can only respond to your Enbrel question. One DOES sometimes get the wipe out effect but it depends largely on your disease activity and getting the Enbrel in your system. For ME, I experienced significant wipeouts with Enbrel after going to the once weekly dose. I handled it with giving myself the shot on Friday nights. The work week was over and if I felt wiped out on Saturday, it was usually until the late afternoon so I had Saturday afternoons and Sundays to do all my mom and extra work stuff. (I am a single parent in the IT profession so my weekends are still active.) Another thing that I do is take extra B12 vitamins a couple days before my shots. Those help too.

You have to learn your own walk with AS. Your body will tell you. The fatigue is the worst enemy when you have things to do. The trick is to do them as your AS allows. If you have to study, do it when you wake up from a nap or can't sleep at night. If you have to study (and I have those days too), get yourself as comfortable as you can...you can study in a hot bath or sitting in your favorite chair with a heating pad. You just have to figure out what works. There are lots of folks here that are willing to help you.

Take care, Runnergirl Doc!! We are excited to have you join our family!!
Holly

hey Runnergirl!

Welcome aboard. Unfortunately I cannot answer your Enbrel question, as I have no experience with it! I just wanted to welcome you to an awesome place!
Sarah

Welcome runnergirl,

MY experience with Enbrel was somewhat opposite of what others have experienced - I had almost instant relief from the overwhelming fatigue. It also did wonders for my spinal pain. I used to do my Enbrel shots on Saturday, because it would give me a vague headache for a couple days afterwards.

After about 18 months, it seemed to be working less so, and it really didn't help my hands & feet very much, which are big problem areas for me, so I switched to Humira.

Humira doesn't help my fatigue nearly as well as the Enbrel did, although it does (finally) seem to be helping my hands & feet.

I've had problems with liver enzymes in the past due to Methotrexate, which I had to discontinue 3 different times. Just not a good drug for me. That was the drug that totally wiped me out. I also take Azulfidine, Plaquenil & Relafen in addition to biweekly Humira. I have my bloodwork done every 2-3 months & I've not had any liver issues on this current cocktail of meds.

We all react differently to these meds - it's not a "one drug fixes all" type of disease, as I'm sure you know.

A trial of Enbrel might be a good idea - it's the only way to see if it helps more than it hurts. It can often take several weeks to feel the full benefit (I've heard conflicting time frames ranging from 6 weeks to 6 months). Mine was quicker on Enbrel, slower on Humira.

Good luck & let us know how you do.

Hi Runnergirl,

Just wanted to say WELCOME!

Since I have not been on any AS drugs, i can't provide any feedback....but hope you would be benefited by many others' experience here:)

And hope you go through your medical training to become a compassionate doctor who understands pains! God bless you on your endeavor:)

Hi ane welcome

I get my liver enzymes checked at least once a month. Since coming off gluten my liver enzymes have come down, which is good.

Allergies, and liver disease (NASH) keeps me away from any pain medication, and other medication for other health issues.

Hugs

Gerri

runner, aloha

i do the enbrel and i also have heard that EDS diagnosis.

enbrel has helped me a lot...anyone taking meds like this ought/should/must
have liver function (hepatic panel) blood tests done before starting the med
and regular sampling thereafter...it's part of the follow up

you should also make sure your rheumy also knows about prior hepatitis experience
BEFORE you start this med...this is a one of those red flags requiring some medical
evaluation...if you are prone to infections or have regularly taken antibiotics you ought
to inform him/her of that also.

good luck

Hi Runnergirl,

Welcome to the site! This is a great group. I haven't yet started any biologics, so I cannot answer your question. But I agree that you should probably have your liver enzymes monitored at least monthly. Good luck on your new rotation!

~Molly B

sorry can't answer your questions but wanted to say hello.

as holly said about getting comfortable to study.......
i'm a professor and often have long hours of desk work that can't wait,
and the hardest thing on my body is grading.....
for grading sessions, i do the heating pad in the recliner thing.....
or if in my office and things are irritable, i do the rotating ice / heat thing.....
since i'm in science and have a lab with a freezer, i'm lucky to be able to have a ready supply of ice at hand at both work and home.
and if my hands are the problem, i can do a batch of dishes in hot water at home or work in between typing or grading.

sue

Hi Trish,

Welcome to KA--we're glad you found us, and I hope you always find all the support you need here!

I took Enbrel for five or so years and it was a great drug for me. Never experienced the post-shot fatigue that others did; in fact, I was more like Janet (she also responded to your post), who felt more energized after the shots because they usually made me feel much, much better within 12 hours. The reason I stopped using Enbrel is that it finally seemed to stop working for me, as I was feeling worse and worse and my sed rate and CRP kept going higher and higher. The first time it stopped working, I tried Humira, which seemed to work but stopped after just one month. So, back on Enbrel I went, and amazingly enough, that one-month "vacation" from it seemed to trigger my body into responding to it once again, as I was able to take it for another year and a half or so with good results. Earlier this year, however, it quit again, and since my rheumy had been wanting to switch me to Remicade for some time, I decided it was time to do that. To say I have been happy with the results I've experienced with the Remicade is the understatement of the year--since I began getting my IVs every six weeks, I have felt better than I have in years, better even than on Enbrel. I am keeping my fingers and toes crossed that this lasts until the new IL23 drugs are up and running!

Because you have already experienced some pretty severe liver problems, I would highly recommend that you get your bloodword done once a month. Of course talk to your doctor about this, but seeing as my rheumy already encourages me to get mine done every time I get a Remicade injection and I have never had any signs of liver trouble, I would have to think once a month would be the right way for you to go. If your doc kind of downplays it, tell him your concerns and say would be more comfortable getting it done more often. As long as you have insurance that will cover the tests, I think this is a clear case where you can't be too safe.

It is great to hear that you are studying to be a doctor. I really hope the Enbrel keeps your AS in check so you can get through the coming tough years without having to worry too much about your AS too. You might want to send a PM to another member here who finished up the rigors of med school and a residency not too long ago--maybe a year or two. Her member name is Strutsy, and while I think she went to school in Canada, I am sure there were many things she went through that would relate to what you are doing. She is a wonderfully nice person, and I am sure if you sent her a PM she would be glad to pass along advice to you. Well, if she's not too busy--don't be shocked if it takes her a while to get back to you, as she is swamped, busy being a doctor and spending time with her husband (he is also a member here) and family.

Good luck, and once again, welcome to KA!

Brad