Archive for the ‘rebif’ Category

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Good week of running

Saturday, October 1st, 2011

After the 5k last Sunday I recovered reasonably well. I was still super drained from the show I did the night before. Speak of, here is a clip fro the show (that’s me on bari sax) Dance Floor 2011. So I managed to run Monday and Tuesday, then took a couple of days break before I ran again yesterday. I really feel like I should take advantage of the optimum weather right now. Cool temperatures yet still nice out. Our rains and storms will start soon and while I’ll run in that mess I still should take advantage of what I have going now.

Friday was another rebib injection and run. I find it odd that I have a nice burst of energy right after injections. All my runs that happen soon after injecting go really well. I seem to stay strong throughout the runs. I don’t have an jittery bust of energy, more like a sustained amount. I am not sure how long this feeling lasts, I would say a couple hours. But I have never really noticed an ending to the energized feeling.

I have switched shoes again and am running on my Asics Gel Kayanos. They feel much more solid than the neutral Mizuno Wave Riders that I have been running in this last month. They felt pretty good yesterday, but my feet were a bit sore.

My speed remains slow, I am thinking some speed work at the track is in order. I haven’t done that in a month or so (maybe longer). Everytime I drive by the track I am reminded that I need to go. I guess it is good to have it on a major street so I keep passing it!

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rebif’s energy burst and other ms stuff

Saturday, August 27th, 2011

So I have recently noticed on several runs that if I do my injection an hour or so before I go out I tend to perform well on these runs. I have done some successful LSD runs as well as fast tempo runs. Today it was just a recovery/junk run, but it went well. I felt strong throughout and my heart rate stayed really low. Today I ran early so it was a lot cooler that my runs have been of late. So that had something to do with how strong I felt.

I wonder if interferon is tested for in professional sports drug tests? So I am gonna keep an eye on this and see if my good reaction to rebif continues. As much as I dislike the injections it seems to be pretty stable with me so no gilenya for me yet.

The weird on again off again feelings in my thigh are not bothering me at the moment, I think the medical marijuana has a lot to do with it. I tried doing a massage on the muscle and got some really painful tingling. Bu then it goes away. Sometime numb, sometimes nothing I notice. Another weird ms thing.

I am surprised how well I have taken the heat this summer. My days of getting one of those cooling systems for runners my mom found are in the past, at least for now.

Posted in marijuana, rebif | No Comments »

Longest run of the year

Thursday, February 3rd, 2011

Yesterday I did a 12+ mile run. It started out to be a base run of around 6.5 and ended up quite a bit longer. The sun was out yesterday and I think that inspired me. Plus I had a break from work and considering that I probably won’t have another significant break coming up work-wise I though I had better take advantage of the time. Not to mention I am trying to increase my mileage in prep for another shot at a full marathon this summer. Oh and I had my water bottle with me in an effort to get used to wearing the belt again, so there was another reason to keep going.

When I was psyching myself up for a run yesterday I was a little concerned about just having taken my rebif. I wondered what sort of effect that might have on me and my running. Once I started I immediately forgot that was even a consideration. So I would have to say as far as the run itself went it was not a factor. I noticed nothing different. The tylenol and advil I took for the shot may have helped any soreness but I noticed nothing (result of completely forgetting about the shot?). After the run I was really tired but I don’t think that had anything to do with the rebif and more to do with the effort (considering my current fitness level) I exerted to run that far. Today I am somewhat sore and really, really tired. I also didn’t sleep so well last night (actually several nights in a row now). So could easily be a combination of the factors rather than having anything to do with the injection. No site reaction to speak of before or after the run.

So the run itself was really interesting. I felt really good for the first 8 miles or so and then after that I still maintained a pretty good energy level. At about that point I started heading into a stiff wind and really slowed down, 11+ min mile. Creeping! I had one somewhat scary moment toward the end of the run when I made a sudden turn and felt a twinge in my left knee, but it seems fine today so I don’t think it was serious at all. I managed to keep my heart rate pretty low throughout. I was aiming for my 70% threshold (144 BPM) and I did a good job for the first 6-7 miles, then it got a bit out control. I ended up averaging 150 for the run, considering how tough the run was I thought that was pretty good. I also think the low HR initially kept me going throughout. I employed a breathing pattern of 2-3 in and 4-5 out. It was hard to maintain at times, but it really helped both to lower my HR if I had just exerted myself and to maintain a slow steady HR. The most typical pattern was 2 in and 5 out. When I breathed out I would restrict my breath in order to slow down my exhale, almost like whistling, but without the sound.

So my plans are to slowly increase my weekly miles and to start up with the quality runs (LSDs, speed work at the track and hills) as well as incorporating less junk runs and more recovery runs under 70%. I’d like to start developing some good training habits before I dive in to the marathon prep. I am going to try to get a recovery run in today after a meeting I have this morning, but I might just blow it off and take it easy today, we’ll see. It feels really good to have done a long run. Makes me feel like I can get going again with the training. Whoo hoo!

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Posted in breathing, long slow distance, rebif, recovery ceiling | 2 Comments »

Killer hills

Thursday, August 12th, 2010

I didn’t run yesterday as I used the excuse of not having any gels to power through a hill repeat run. Well the gel came that afternoon, so no excuses remained. Actually I was fine with that as I knew I had to do some hills to keep on track with my fluctuating quality run plan.

So a note on the gel: I purchased a 26 serving bottle of Chocolate Hammer gel for $20 on Amazon. I use 3 oz gel flasks and dilute 1 to 1 with water. It takes some shaking to get it mixed up, but it is a lot cleaner and less wasteful than the individual servings not to mention cheaper. I really like doing my gels this way. The bottles I have a weird and are rounded so they don’t stand up but feel good in my pockets. I like the diluted gel as well. The chocolate was a little sweet, I have had espresso as well and I thought that was less so.

So in addition to my diluted gel I also brought a pack of Honey Stinger fruit energy chews. They are a bit like Sharkies only more jelly like, sort of remind me of the old jelly candies my Grandma had. They are ok, I don’t think I care for the Honey Stinger product lines so much. They are a bit too strongly honey tasting for me. I had some gels from them as well that I got as samples at the Portland Marathon and they were the same way, like eating a tablespoon of honey. Good but too honeyey. I had maybe 3 or 4 of them on the run to the hills and then the gel halfway through. I felt pretty good energy wise, good combination of gel energy and electrolytes.

So the hills were tough. My hill route I went on today has 10 or 11 hills about a quarter mile long of varying steepness. I zig-zag up and down along this three block long ridge. So down for three blocks, over one, up for three blocks and over one and so on. Halfway through I turn around and go up the ones I went down the first time through. The workout tapers a bit to the mid-way point with the hills getting easier, but the way back is murderous and by the time I near the end of the hill portion, the final two hills are brutal. Here is the run. I felt pretty strong throughout the run and my HR dipped pretty low on the recovery portions (130-140). My max HR was 185 for the run, but more often in the high 170s. It was a good workout and one I feel pretty rested from now that the afternoon has waned.

I missed my rebif injection yesterday, so I did it today after the run. I have been doing the shots after workouts for awhile now and so far I have bot seen any sort of issue with it. I am not sure if the exercise makes it any more or less effective, but there don’t seem to be any problems. Even today when I did my shot into my leg all pumped up after the hill repeats, no issues. I do notice that when I inject in the morning I sometimes have to take ibuprofen in the evening to cull a headache, but it doesn’t happen often. I do worry about taking so much ibuprofen and acetaminophen and its effects on my liver. But I guess I’ll deal with that when I have something concrete to deal with.

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Posted in gels, hill repeats, injections, ms, rebif, running | No Comments »

ms Monday

Tuesday, February 2nd, 2010

I have written so much about running in this blog that I often forget about the ms part. Not a bad thing I am sure! So today I did my rebif injection in my right thigh ending a string of my four favorite injection sites (LR stomach, LR thigh). Seems sort of funny to have favorite injection sites, but that’s how it goes. For the first year and a half or so that I was taking rebif (going on year two now) I followed Serono’s advice of taking it before bed to mitigate the side effects – flu-like symptoms. Those have seemed to tapered off (though I still take a single acetaminophen and a single ibuprofen). I also started to notice that I was having some trouble sleeping at nights I took it. So with occasionally running in the evenings, I often wouldn’t take it until around 9AM which was getting too late for me. So I started experimenting with taking it in the afternoon. This has worked out fine even on nights where I was running afterward or even going out for a beer or two. The only change I have made to my routine with these afternoon shots has been to also take an additional Ibuprofen at night. I probably should be very consistent with the times I shoot the rebif, but life gets in the way and sometimes I think my schedule will only allow me to get the three shots in with 44-52 hours between injections. As long as I get my three shots in a week then I feel like I am doing myself good and taking care of this stupid ole ms. But this is not medical advice, just reality advice. Just another ms Monday, wish it were Sunday.

Posted in ms, rebif, running | No Comments »

Long run in the rain

Monday, November 16th, 2009

Friday (yeah I have been procrastinating writing) I went out for what I was alternately thinking would either be a short run or a base run. Once I passed through the park (left for short, right for base) I knew it was going to be a base run. As I was heading down through the falling leaves of 37th I started to think about a long run. I have done two base runs since I was back from Europe and in the preceding three weeks I had run four times of less than five miles apiece. Was I ready for a long run? Well I was pretty rested (in general, though I had done 13 miles in the last three days but I hadn’t run yesterday.) But was I ready for a long run? I doubt it, but that didn’t stop me. Left for the long run and right for the base run. Left it was.

I was glad to find out that the sewer work that closed Springwater was occurring in the other direction which served as a traffic block that gave me the trail all to myself (not that there would be a lot of people in the rain.) At the end of the trail I had another choice, Left for the neighborhood of mystery (I have never been able to figure out what it is called) for a really long run or right for just a plain ole ordinary long run. Left to mystery I say! The neighborhood of mystery is anything but mysterious, but I enjoy running there none the less. Out of NoM and into Sellwood. After several blocks I turn east so I can run through the park along the golf course and wham, I roll my ankle. Crap, five miles from home and no cell phone (not that I wouldn’t have run through it anyway as it didn’t seem that bad. Though I had no doubt that I wasn’t going to be doing it any good either…) I walked for a bit and decided it was ok enough to keep running and on I went.

Across the bridge, through W. Moreland, around Reed and up across the two bridges that span the canyon, through campus, over to Woodstock, then home. 10.72 miles in all, here is my run. Other than the ankle it was a really nice run in a gentle rain. I am really not sure what happened with rolling my ankle. I didn’t hit anything in the path or slip on wet leaves. It just happened. I suppose the barefoot runners would say it was due to my shoes and perhaps they are right. Certainly came out of nowhere.

Today I am still nursing the ankle though I am sure I could go ahead and run on it as long as it was an easy run. Yesterday I woke up out of bad with a kink in my back that is really causing me grief. I suspect it had a little to do with hobbling around as again no event preceded it. Perhaps I am just falling apart. nah.

I injected my rebif on Friday and thought I haven’t written about taking the medication in a long time. It has been 18 months or so that I have been on it, 234 injections. Does that qualify me for expert status? Probably not. I haven’t seen a relapse of any ms symptoms, at least in a major way. I have noticed what they call pseudo symptoms where I get slight reoccurances of the seizure symptoms. It usually only happens when I am really hot and or tired, for example after I run on a warm day. It happens ever so often, say maybe once or twice a month. I can’t remember the last time it happened so it has probably been at least a couple months. I had nothing during my trip the Europe, where I was a little worried the stress of the trip might cause things to act up. But nothing. Side effects for me have been minimal, I have the red spots on the injection sites on my stomach and back, but not my arms or legs. I still take a single Ibuprofen and a single Acetaminophen before I inject, for the most part I no longer get the flu like symptoms. I have noticed a bit of insomnia when I inject, but it doesn’t always happen or seem that bad. No depression at all from what I can tell. Lately I have been experimenting with injecting earlier in the day to see if that helps with the insomnia and it appears to do so. I have even injected and then gone out with no ill effects or grogginess. It seems I am nearing some sort of expert status after all!

One side note, plane travel was surprisingly easy. I had a note from my doctor saying that I would need to carry it with me. I also had the box that it comes in so I could show any prescription info. I had the needles in a zip lock bag that I could easily grab and hand to security. On the way back I had filled up my little travel sharps container, so I stuck the used needles (with needle bent over and the cap reinserted over it) in a bag as well. I was nervous as I approached security and both coming and going told them about the needles. Neither of them wanted to see them and asked that I just send my back through x-ray without pulling them out. Very easy! Of course they still think I am carrying explosives in my sneakers!

Posted in ms, rebif, running, travel with rebif | No Comments »

More new shoes?

Thursday, April 23rd, 2009

I have had a pair of Asics Gel Kayano running shoes sitting on the shelf in my garage for over a year. I got them at a really good price after the model was discontinued ($60 off). Right after I got them I went to an orthopedic specialist to talk to him about my feet and the discomfort and numbness I was experiencing. His thought was that my motion control shoes might be causing trouble because of the stiffness on the outer sole causing too much pressure on a nerve in my foot. He suggested custom inserts which I really wanted due to my shorter right leg and if they solved the issues I was having with my feet then great. So this meant I would need to go to a neutral shoe to see if the motion control shoes were the problem. Well, turned out it was our friend ms that was (and is still to a degree) causing issues with my feet.

One of the things the doc suggested was switching back and forth between my neutral shoes with the inserts and the motion control model. I haven’t done it too much as the neutral shoes felt a lot better, but on occasion I would put the old mc model on. They were quite a bit lighter than the heavier Mizuno model (and plus the inserts, which aren’t light) and I found myself running faster in them. I ran on an older pair as I felt I still had miles left on them. Recently I have noticed that they really felt like they were worn out despite having only 400 miles (I was thinking I could get 500 or more out of them.) So today I decided, what the heck lets pull out the new pair and give them a whorl. They felt great! I think I will run in them one more time before Saturday and wear them for the race. The Gel Kayano is a really good shoe, probably my favorite I have ever run with.

I found out yesterday that MS Lifelines will not (as expected) offer me any further assistance with the rebif. Though if I go off of it for three months, then I can restart for a free year. Weird? So I am going to use my current insurance to max out what they will pay for rebif (2 months) and then apply for Oregon Medical Insurance Pool in a month or so as they have no cap on rebif. Seems like the best option I have.

Posted in asics gel kayano, ms, rebif, running | 2 Comments »

Run arround with ms

Wednesday, March 4th, 2009

Today I did two runs with ms. The first one was much more enjoyable despite teh chilly morning and having drank something called Bad Road at a local restaurant. Piece of advice when drinking a Bad Road, when they ask if you want 10 mile or 5 miles, don’t respond with “10″. So the run went pretty well, a base run of 5.75 miles. It was sunny out as it usually is when it is that cold in Portland and that kept me going strong.

One thing that I found interesting from a radio station I was listening to: Portland was named the #1 most unhappy city in the US by Business Week. I think it is really funny as I know Portlanders are going to get all “unhappy” about it. To me it is good news as it means fewer people will be coming here and clogging up our roads. Won’t do much for my clients that rely on tourism though. In truth Portland is a pretty optimistic place if not overly so. They don’t call us the city of rose(colored glasses)s for nothing.

So my second run(around) with ms happened later this afternoon. I am ending my one year of free rebif from Serano and MS Lifelines. Thanks for the free drugs, I’m sure they have been a help to my situation. The down side to having hope with ms, is that to continue having hope I will have to shell out over $2000 a month for the rest of my life. Turns out the medical assistance program they offer after the first year has very low income requirements which I don’t fall under. I make too much to get assistance, but not enough to be able to afford it.

So I know all of you are asking, come on Marco, you have ms, don’t you have insurance? Well yes I do. Turned out the plan that I originally purchased and read to cover prescriptions doesn’t cover “specialty” medications such as rebif. No soup for you! Healthnet actually will cover up to $4K of “specialty” meds which almost takes me through February every year. Nice job Healthnet, you got me covered! The day I found out about this I just about pooped myself. After several phone calls I found out about the MS Lifelines Access Made Simple program which provides ms patients with free (or nearly free) rebif for a year and then offers assistance after the first year. I was so relieved. Well, it turned out I just put off the pooping a year. As I said earlier, I don’t qualify for further help.

So what to do now? And let the run around begin! I have always gotten really good help from MS Lifelines. Their call center was always helpful and easy to understand. Well, that is until you get transferred out to fulfillment or in today’s case Assistance Program. Seems like a change of company or at the very least pay scale as the service level drops off significantly. Part of me has to wonder if Serano wouldn’t do more for me if I just got to speak to someone else.

My first thought is to get on Ruthann’s insurance, which would “only” run me $800+ a month Good insurance though, eye, ear throat, the whole deal. Well at least that would be my final option. But still not a concretely solution.

So cut adrift I look into the Oregon Prescription Drug Program, a program to lower the cost of prescription drugs. When I first found out about the cost of rebif it was $1800 a month. With OPDP teh cost was lowered to $2300 a month. Oh wait, that is more? Has their been a huge increase in the cost of rebif in a year? Not out of the realm of possibility. I ask if there are other programs that I could try and after some searching she replied, Oh yes there is “the MSLifelines program that will…” Grrrrr. So I call Partner for Prescription Assistance, they also tell me of the low. low price of $2300 a month AND if I order by mail I can get it for only $2000 a month. In addition there is this program called “MSLifelines that will…” Next I try RX Assist and Needy Meds which both tell me of a program called “MSLifelines that will…”. Needy Meds does tell me of several drug card programs that are available: Drug Card America, Patient Card (or something like that), Free Drug Card, PS Card and True RX Services. All of which had websites that looked as if I was going to be ordering a set of knives or Obama coin sets. Id did appear that I could get some sort of discount through them. So now I am down to about $1500 a month.

Not to be discouraged I call on my last hope the Oregon Medical Insurance Pool. This group covers individuals as if they were a group. But, because I have MS, my costs would be pretty high. The woman (Mary) I talked with was very honest about this. In fact if I got the $500 deductible plan, my meds might cost me as much as $40 a month and the plan itself could be as much as $436 a month. She paused for the shock of the high cost to ease from my shoulders. I think I totally surprised her when I said, “Wow that’s great!” Great? she replied. When I told her the cost of my meds I think it made her feel really good to have been such a help. My next question was a doozy though, did OMIP consider rebif a specialty drug and were there any constraints associated with it. After being on hold four separate times she came back to say she wasn’t positive, but it appeared there weren’t. I was just relieved I could afford that, best news I had gotten all day. She promised to send me info on the plan. I think I have a winner.

Posted in ms, ms lifelines, OMIP, rebif, running, serano | 3 Comments »

I’m sick, can’t run

Tuesday, February 3rd, 2009

And no it is not a hangover from the Super Bowl. Even though I did watch my favorite team win, I did it from bed. No beer, but I did manage to eat some junk food and a pizza!

Oddly all of a sudden on Saturday I was just hit out of the blue with nasty flu like symptoms. I think I may have graduated from just symptoms to a full on case of the flu. Good news is I feel better today, but it is certainly still hanging all over me. I have noticed that this year (my first rebif year) that I have gotten sick more times than not. My neurologist insisted that it affects/suppresses a different part of the immune system, but as my GP says it doesn’t truly matter how you are supposed to react to a drug and instead it is the clinical reality that shows the real truth. In other words medicines perform differently on different people. Of course affecting immune systems seems like a pretty major thing to be willy-nilly affecting, so maybe she is right. But I have been exposed to less people (which could also be the problem) this year, I’ve gotten better sleep and had less stress in my life. I still think it is the rebif. Plus why was it recommended by a blogger (ok yeah, what do we know, seriously?) that as a ms person needs to get a flu shot. I have never gotten one in the past, then again I am getting older…

Well, I hope to be back running soon, but maybe not this week. Course I will get itching to go and I will end up running before I am healthy enough. I know I will. We’ll see.

Posted in ms, rebif, running, sick | 2 Comments »

Hard time getting back into the swing of things

Tuesday, October 21st, 2008

Since being sick basically put me out of commission for a couple of weeks I have been having a terribly hard time getting back into it. I think the biggest challenge has been having to run in the dark in the mornings. I’m not a big fan of that at all. I have a green blinking light that I wear on the back of my hat and an orange reflective running jacket. But it still feels sketchy, plus I worry about uneven sidewalks and all sorts of things not easily seen in the dark. Monday I couldn’t get out of bed, just wanted to lay there. Yesterday I decided at 3:00 to not get up. The rebif had caused a monster fever that plagued me all night. Right after going to bed I had the worst chills. It was incredible, I just could not warm up. Later, my cough came back a bit and every time I would succumb my fever would explode. The fever issue with rebif is odd, sometimes I don’t feel a thing, and others I do. I don’t understand the inconsistency. I’ll have to look for things in my diet that might be causing it.

I am just about ready to commit to the Seattle half-marathon on Nov 30th. I am pretty sure that in five weeks I can get back to where I was cardio-wise. My buddy in Seattle who I would stay with wants to go to a show the night before. I think I could do the half with limited sleep as long as I didn’t drink the might before. I am still torn though. Paul really wants to go to the show (and so do I – Sea and Cake – but a big part says it is foolish to try. But maybe not.

Posted in chi running, fever, ms, rebif | 1 Comment »

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