Update on Meds and a Question

[Joefnh]

Tme for an update and a question... I mentioned a bit ago that I was Dx'd with Anklyosing Spondylitis (AS) which is an autoimmune condition of the spine that causes inflammation pain and over time if not treated might allow the affected region of the spine to begin fusing together. In addition to this there is a bit of spinal stenosis that will need to be monitored and that I will be getting some localized steroid injections at L3 - L5 in early October.

Right now I have been taking Imuran for Crohns and MC (CC) and in conjunction with a careful diet, I have been able to control the MC and Crohns pretty well.

Over the past few months since the back has flared up, I have been also taking 12mg of methylprednisolone (a type of prednisone) to help calm things down and Norco as needed for pain

Working with my doctor the goal is to taper off of the prednisone once I start the spinal injections at L3 - L5 and I started just this past Friday the Humira which will befollowed by a slow taper off of the Imuran as they are both immune suppressants. Unfortunately Imuran does not effectively treat AS but Humira treats AS and Crohns well; we are going to have to watch carefully how the MC does or does not respond with diet and the Humira. I remember Tex mentioning others have not controlled MC well with Humira.

Friday the nurse showed me how to use the first dose of the Humira and then they monitored me for an hour for any problematic reactions. Overall it was not too bad and I'm so glad it was not a traditional needle as I'm not sure I could give myself a shot. Strangely I can easily tolerate blood draws and acupuncture if I look away just fine...I just can't get past the thought of having to give myself a shot.

Fortunately the Humira is a automatic injector like an epinephrine pen. You just press it against your thigh and press your thumb on the red button and it does the rest. It does sting a modest amount and does leave a bit of a bump as a local site reaction.

Fortunately for me I will always have a 'nurse' (a.k.a. Nestle ) present at each injection.

Here is what the pen looks like, certainly this is a new experience but if it works out I will have to do this only once every 2 weeks after a few starter doses and hopefully it will also control the Crohns and MC



The questions I have are has anyone here taken Humira and what response did you notice for the MC if any. I believe there was at least one member taking Humira for psoriasis but at the moment I can't recall the name.

Thanks again to all here for your support, it really does make a difference.



....My next area that I am currently exploring as a treatment modality...meditation, so far some promising results...stay tuned.

[wmonique2]

Hey Joe,

Sorry for your new DX---none of us need anything "new" in addition to all the other burdens. I am not responding to your humira question since I know nothing about it, just wanted to send some words of encouragement. The pen-thing will become second nature real soon. If you need to practice shooting, do it on an orange, it helps eliminate the anxiety of having to shoot yourself.

I know something about shooting myself---done it some 60,000 times (yep, you're reading it right) to myself (a rough estimate here). Imagine 4xday for 40 years (juvenile diabetes) and that's not counting the same amount or more of blood tests a day. Not that it's gonna make yours any easier, but the pens makes things a lot simpler. You don't have to look, just aim and shoot. It works. And think that you are doing it to somebody else.

Meditation works for me and so does acupuncture.

Wishing you the best,

Regards,

Monique

[gluten]

Hi Joe, There is a web site that you may be interested in reading. www.kickas.org/medical/15.shtml It is about a low starch diet in the treatment of patients suffering AS. Jon

[Phil554]

Hi again Joe,

I'm the one taking Humira for psoriasis and it seems to have kept up the same great job (or maybe even better since I'm totally in remission from the lesions) that the Enbrel had for about 5 yrs prior to starting the Humira last fall. Having said that, my arthritis (which I can't say for sure is psoriatic or not) is a bit worse than while on Enbrel. I also had to stop taking Celebrex (which I had been on for about 7 years) so it's hard to say if the new aches are from that or the switch from the Enbrel to Humira but I'm going to discuss this with a rheumatologist next week.

Your Humira admin assistant looks like good moral support! One trick I've found is the sting isn't quite as bad if I take the "pen" out of the fridge and let it sit for 30 to 45 minutes prior to use.

Hang in there and I hope the Humira helps!

Phil

[Joefnh]

Thanks Monique, the meditation is fairly new. I'll write another post soon regarding this. Polly recommended a book called 'The Relaxation Revolution' it's very well written for a science geek like me and I am finding some great results can he gained by meditation.

Im sorry to hear about the diabetes though, thats got to be tough on top of MC. Using the pen wasn't too bad, although at $800 per injection I doubt I'll be practicing much LOL

Phil thanks of the response and the suggestion about letting it warm up. I read about that on one of the Crohns forums as well. You do have to keep these refrigerated which will add another layer of concern to any traveling, but I guess the airlines deal with this all of the time. My next shot is this Friday, I'll most certainly let it warm up first. I'm glad this has helped the psoriasis.

Yep Nestlé is always ready to help out whenever she can...

Thanks gluten for the website, I will check that out....

[nancyl]

Hi Joe,
Looks like you're on your way to tackeling this new dx. It's good to hear you sounding like your old self with your incredible positive attitude. The meditation sounds interesting. I did an 8 week program once with a group from UMAS in Worcester. It was the Jon Kabet- Zinn program. It would last for an hour and I had a very hard time sitting still for that long. I would need something shorter, but I'm sure it has positive results, so good luck with that. I agree about acupuncture, I do think that has helped me also.

Good girl Nestle, you take your role as nurse and comforter very seriously.

Keep us updated and if you need anything, just holler.

Nancy

[jmayk8]

I agree with Nancy, I love your positive attitude! Hope you are doing well, I love Nestle in this pic!
Jenny

[Joefnh]

Thanks Jenny for the compliment...I'm not sure about a great attitude, but I do try...I don't always succeed but I try.

As far as nurse Nestlé, whats not seen in this picture, to the right of my remote control is a bag of these...



You have to remember Nestlé will perform long division and do my taxes (and has ) for a treat and she really does like rice cakes. I think that's why she is standing there acting oh so perfectly LOL.

Don't worry she got a rice cake (usually does...yep spoiled)

Nancy I think an hour would be too long as well. I've been reading a book Polly recommended called "Relaxation Revolution" and basically it talks about just finding a way to really relax for 15 or so minutes a day, overall a way to just really quiet the mind. You can use whatever method you want, prayer, music, visualization...whatever works. Overall I am really starting to some good benefits. I just finished the book and am working on this. I'll write up a longer post in a bit.

[jmayk8]

ahahaha

[Joefnh]

You laugh but it does put a dent in my rice cakes stocks....

For someone with MC that can be quite serious!! LOL

[Zizzle]

Wow, Joe, the link that "gluten" provided above is fascinating. Could have implications for MC, not just Crohns and AS, but it sure sounds plausible in your sitatuation! It might be time to feed nurse Nestle ALL the rice cakes!

Summary
The majority of ankylosing spondylitis (AS) patients not only possess HLA-B27, but during active phases of the disease have elevated levels of total serum IgA, suggesting that a microbe from the bowel flora is acting across the gut mucosa.

Biochemical studies have revealed that Klebsiella bacteria, not only possess 2 molecules carrying sequences resembling HLA-B27 but increased quantities of such microbes are found in fecal samples obtained from AS patients and such patients have Crohn's like lesions in the ileo-caecal regions of the gut. Furthermore AS patients from 10 different countries have been found to have elevated levels of specific antibodies against Klebsiella bacteria. It has been suggested that these Klebsiella microbes, found in the bowel flora, might be the trigger factors in this disease and therefore reduction in the size of the bowel flora could be of benefit in the treatment of AS patients.

Microbes from the bowel flora depend on dietary starch for their growth and therefore a reduction in starch intake might be beneficial in AS patients. A "low starch diet" involving a reduced intake of "bread, potatoes, cakes and pasta" has been devised and tested in healthy control subjects and AS patients. The "low starch diet" leads to a reduction of total serum IgA in both healthy controls as well as patients, and furthermore to a decrease in inflammation and symptoms in the AS patients.
The role of a "low starch diet" in the management of AS requires further evaluation.

[Joefnh]

I did notice the link to starch and as I am HLBA27 positive this is an interesting find. Overall I eat a relatively low starch diet but there is still room for improvement especially with rice and sweet potatoes as those are my main sources of starch.

I'm sure Nestlé wouldn't argue too much is she HAD to eat a few more rice cakes

[Zizzle]

I wonder if your docs would order a specific stool culture to look for Klebsiella? Or a test for antibodies?

I'd keep the sweet potatoes and ditch the rice.

[Joefnh]

Why the sweet potatoes over the rice??

[Polly]

Hi Joe,

I'm guessing Z. will say because rice is a grain. Glad you are enjoying the book!

Love,

Polly