Denouement

This sounds encouraging, especially the part where he says he wouldn't be surprised to see you at the OTQ. Bummer about the expensive prescription though. You are not a whiner, in fact a very patient patient (er client) and a very intelligent athlete. GOOD LUCK in researching, and getting second opinions on your diagnosis and prognosis. Sorry I can't offer any interpretation of the SID/SED scale. I do hope you get to run some at Bear Lake...something to look forward to. THANKS for sharing your journey of overcoming this challenge. Lotsa love.

Michelle - you are a lady of dignity and I am proud to have got to know your before and during this life changing ordeal. I am so excited to hear that you have the OTQ in your future still.

I know that you have a lifetime of challenges ahead of you. We all have some kind of challenges and can choose to handle them gracefully and learn from them or get bitter and close up because of them.

No matter what happens down the road - I look up to you and your race through life with more awe than anyone else I know. In my opinion - you are an olympic champion already.

Michelle I have been following your blog this whole time. I forgot my password and have wanted to comment a few times and couldn't get on. I finally had Desi help me. You are an amazing individual with lots of talent and spunk. Makes me wonder if I need to get checked for all my aches and pains from running. I am looking forward to seeing you back on the road. Good luck with everything.

i echo everything said above. your non-running blog has been very interesting and inspiring to follow. you have a great attitude and perspective and have never given up hope. it's a great example to all of us. that OTQ is all yours, and how sweet that day will be. i will be cheering for you all the way...

Ah, Maurine, are you pulling my chain again? If not, I am quite overwhelmed with the compliment. Its true that the challenges will keep rolling in, though, isn't it?

My two Ali's (or Allie's) (ok that sounded better when I was typing it in my head)--thanks so much.

Ali-I miss you! (are you training for StG yet?)

Allie - let's do it together.

I too echo all of the above! I am so glad to hear that chances of a full recovery are definitely in the cards! You have been a great example to me through all of this with both your knowledge and your patience! I know I haven't always commented on your blog but I have been following it and your positive attitude always has a way of picking my day up a bit so thank you for that!! Keep up the good work and I look forward to see you running up and down canal road again soon!! :)

I think the fact there may be a medication to help the inflamation and that you will be walking/cross-training by later this month is amazing. I am so happy for you! I agree with all that has been said so far, and your journey blogged/journaled here has been insighful and an inspiration. Good luck getting back 'on you feet'. We'll all be cheering for you! (I'll be the one with the doughnut).

Well, it sounded like a productive visit. You have a good attitude, and I'm glad you have kept up with posting despite not being able to run (I always found blogging here to be therapeutic). Good idea with the second opinion. It will certainly not hurt, and will be good to get another doctors viewpoint. Unfortunately, this is not hard science, and a diagnoses can be somewhat subjective.

I also like your rheumatologist's attitude; sounds a lot like my doctor. He sees no reason for people to suffer and get permanent damage when there has been so many medical breakthroughs recently.

Yes, NSAIDs take several days to weeks to fully build up in the system to get the true anti-inflammatory effect. When you first take an NSAID, and you immediately feel better, than is just the analgesic (pain-killer) effect, but there is no true reduction in inflammation until some time later, either days or weeks. And it's the inflammation that causes joint damage and other health problems, not the pain.

I believe he is also correct in saying that the main options are just NSAIDs and anti-TNFs. Drugs in the DMARD class (like sulfasalizine and MTX) are effective for rheumatoid arthritis but have been shown to have very little effect for AS (although it does help some people, esp. with peripheral symptoms, like fingers and toes). I was on sulfasalizine for about a month before I figured out I wanted to be on Enbrel instead, so I quit it before it could even ramp up in my system (takes about two months).

I encourage you to devote much research and prayer to your course of medical action. It is a big decision, because, like you said, it's something you'll deal with for decades. We are all ultimately responsible for our own medical choices, and have to live with both the benefits and the side effects. For NSAIDs, ask yourself if you have had any stomach issues in the past, such as acid reflux or ulcers. Or do you have an "iron stomach"? For anti-TNFs, ask yourself how many times you've had to go on antibiotics in the past couple years. If it is a high number (ie - you are prone to infections), then anti-TNFs could be very hard on you. Everyone is different, and the best solution is different.

Regarding "SED", that's probably "Erythrocyte sedimentation rate". It's usually just called ESR or "sed rate". It indirectly measures inflammation. A typical sed rate for an adult woman is around 15-20 mm/hr, so I don't know how that relates to your numbers. C-reactive protein (CRP) is also commonly used to measure inflammation. CRP is usually below 1 mg/dL, and values of 10 mg/dL or higher indicate infection or inflammation. Both are used to HELP diagnose things, but neither is a true diagnostic (kind of like the HLA-B27 test).

Regarding cost of medication, Enbrel is about $1600 without insurance. Assuming you have an 80-20 plan, it ends up being roughly $300/month after the deductible. Still a lot. However, the drug manufacturer has an financial assistance plan that covers your deductible, and makes the copay something like $10/month, which is incredible. Humira, Remicade, and Simponi all have similar plans, but I think Enbrel ends up being the cheapest, which is why I tried it first. Remicade is always the most expensive, because it's an infusion. I am actually unsure of the exact Enbrel cost, because I also applied for additional aid with a couple non-profit organization, and they cover the rest of my copay. So I pay exactly $0/month, whereas with the generic NSAIDs, I paid $4/month. So enbrel is cheaper for me. Go figure. I actually received grants from both non-profits I applied to, and had to turn one down because I couldn't use the money at that point. There is so much assistance money out there, but nobody applies for it, so it goes to waste, kind of like scholarships. For a family your size, you will qualify if you make less than $103,000/year, so it excludes the rich and upper middle class, but includes the middle class.

BTW - if you think you may be on NSAIDs long-term, ask you doctor about getting on a proton-pump inhibitor, such as omeprazole. These meds reduce stomach acid, and lessen the chance of ulcers. Also, I hope your doctors' office has good nurses. Usually I can just channel questions through the staff, which they can either answer directly, or get an answer for me, without an office visit. I have also gotten new prescriptions this way.

Hey, I still read your blog. I wish I had some helpful advice, but this is over my head big time. I wish you well.

I am glad you have Paul to help you out with great advice and show you (and the rest of us) that some little disease should not become a road block for what we want in life. You are both amazing and inspiring.

Here is to feeling great again very soon and being able to run by Bear Lake. If anyone can get there, it is you.

Take care of yourself! Let the kids do the weeding.

oooh Michelle thanks for advice on forum!

On reading your blog, Diclofenac rings alarm bells, my husband had an accident with a tractor implement when he was 18, it crushed his head back and hip, anyways hes been on diclofenac for a rare form of arthritis Ankylosing Spondylitis.... anyway hes now 36 and has been to the doctor for the last 10 weeks, with health problems, they werent sure at first but he had unusual blood pressure etc, alarm bells for a heart attack also his liver is failing, and high cholestrol, hes a healthy fella though manual work in his own business etc

Found out last week all of this is due to the liver failure is due to Diclofenac, I know hes been on it for many many years, but just to let you know long term use isnt good at all, as his liver has failed his body isnt riding itself of stuff etc hence the high cholestrol high blood pressure so it could in fact if not dealt with kill him....

great to hear your getting some answers all the best

xoxoxoxoxoxoxoxoxo

Geez Paul. I thought you must have copied and pasted some info from the web, but that looks like all your own words. Michelle, consider yourself lucky to have an awesome friend like Paul.

Your non-running blog is fantastic and it will be fantastic when it become a running blog again(becaue it will!). Keep going you are an inspiration!

Burt - unfortunately, those are my own words. I guess I've had to learn a lot in the past year.

Thanks everyone for your support !

Kelli - good thought about the weeding. Builds character (that's what my mom said when I was a kid).

Burt - you are right. I wouldn't wish the condition on anyone, but it has been comforting to know a competitive runner who's blazed the trail to coping/remission ahead of me. I have a lot to learn still, but my learning curve has been helped quite a bit by Paul's wisdom.

Sam - that's scary. We all hear of side effects, but hope it doesn't happen to us. When it does happen, it is devastating. I don't have a long term treatment plan for now.

Marion - right back atcha.

Sounds like you are getting closer to knowing the underlying cause of your injury, so that's great. knowing is half the battle. Best wishes as you learn more and figure out a plan for treating it!