Plasma Exchange

As if stem cell infusions were not exotic enough, my neurologist told me months ago he wanted me to give Plasmapheresis, or plasma exchange, a try. I resisted as long as I could, just for the sport of it. This is not a new therapy, and I was told there is some evidence it is effective with secondary progressive MS. I have trouble saying no to this guy, so I figured, what the heck, though that is not precise, word for word.

All the patient has to do is get stuck in one arm with a big needle, with a smaller one hitting a vein in the other one. Piece of cake. Sort of. I was tethered to a whirring machine, a centrifuge separating plasma from blood cells. My own plasma was discarded and replaced by donor plasma or colloid fluid, whatever that is. The theory is that plasma from those with a range of illnesses contains dangerous antibodies.

Of course the machine stops if you give it a dirty look. It recalibrates, adding time to the procedure. This went on forever on my first day. I had not eaten for a day when I had the procedure that first time, and the centrifuge went on strike. This machine, I figured, is even more screwed up than I am.

Even in my frustration that day, it occurred to me that times certainly have changed. I had learned my fate in the Diagnose and Adios days, when treatments for MS did not exist. And here I was, getting state of the art medical care. Neurologists are not shooting blanks anymore. The question is, can they hit anything out there? Where I end up at the end of all this is not known.

There has been marginal improvement from the stem cell trial, which I will write about when the train reaches its destination. I do not know about the Plasmapheresis. At least I am doing something. My arms had been getting tired treading water for so long. I feel stronger and am in better shape psychologically. That counts.

28 Responses to Plasma Exchange

  1. Gala October 21, 2015 at 4:15 pm #

    Done it for 8 weeks. Result zero. Maybe you will be more lucky. Where we can read about your marginal improvement? Thanks

    • Richard M. Cohen October 21, 2015 at 4:38 pm #

      Maybe here.

      R.

  2. Rob M October 21, 2015 at 5:50 pm #

    Props for trying something new. There’s not much out there for us secondary progressive folks. Did insurance cover that? I would think not. So you couldn’t eat for the whole day? Sometimes when I don’t eat for a day I feel better. I agree with you, doing something, anything to combat the MS is empowering.

    • Richard M. Cohen October 21, 2015 at 8:31 pm #

      Insurance paid. I didn’t eat because I did not feel like it.

      R.

  3. Dennis October 21, 2015 at 9:56 pm #

    Assuming you show improvement, how will it be known whether stem cells, plasma exchange or both treatments were responsible.

    • Richard M. Cohen October 22, 2015 at 9:18 am #

      AND THROW IN PT. NO WAY TO KNOW.

  4. Amy Corcoran-Hunt October 21, 2015 at 10:46 pm #

    At some point you try anything and marginal improvements are great. I am on d-Biotin from a compounding pharmacy based on the MedDay French trial results. Why not? My neuro liked the idea. No time to wait.

    I am reading “Blindsided.” You probably don’t need me to tell you, but it’s great.

    • Richard M. Cohen October 22, 2015 at 9:22 am #

      THANKS.

      R.

  5. MB October 21, 2015 at 10:56 pm #

    I’ve had chemo five times over the last few years to keep the devil at bay and it’s working. Plasma exchange operates under a similar principle—out with the bad and replaced by the good. In my case, the chemo kills the bad and we hope like hell it doesn’t resurrect itself.

    You’re giving it hell, Journeyman. Stay in the fight!

    • Richard M. Cohen October 22, 2015 at 9:23 am #

      THANKS.

      Right on.

      R.

    • Louisa October 25, 2015 at 4:19 pm #

      What kind of “chemo”, MB?

      • MB October 27, 2015 at 7:45 pm #

        Cladribine infusions

  6. JoanZ October 22, 2015 at 9:29 am #

    “I feel stronger and am in better shape psychologically. That counts.”

    Well said!

  7. Christopher October 24, 2015 at 9:24 am #

    Been out of work for 54 days and counting on short term disability. In the hospital for two weeks with overlapping relapses, bad ones. In nursing facility for two weeks now too, and very little change. I’m really concerned that this is one of those times of acute progression, which means 50/50 permanent changes that are irreversible.

    Where does anyone turn to at times like this for answers? For believable reassurance? I’m consuming research papers and abstracts like a mad person–plenty of great information, but no good correlation. Everything is ‘hall of mirrors,’ and too many dead ends. MS seems to be caused by anything and everything. No specific therapies to stop or reverse damage. The doctors are impotent and just throw canned responses at me and are just as lost as me. They put up a good front, but after so many times with the same poker faces I can read their tells… bluffing, bupkis. The same curiously confusing words, “just keep doing what you’re doing.”

    It doesn’t seem like enough, and Albert Einstein would say that it’s the “definition of insanity.”

    • Sue in TX October 24, 2015 at 11:27 pm #

      Christoper, I had a severe aggressive attack about 10 yrs ago. I had 3 days of IV steroids , relapse and 7 days of IV steroids followed by prolonged steroid taper for months. Chemo was considered. Every time we dropped oral steroid dose, serious symptoms happened so it took long time. I did what you’re doing reading and researching everything. No promises were made to me about a recovery. It was terrifying. I contacted a hematologist in urban medical center. I was desperate. B12 levels were low but analysis of blood cells showed really large immature cells ( meaning needed lots of b12 ) and I got massive doses of b12 injections, more frequent and higher dies than any other dr wld prescribe. Improvement started rt away. I also did DMD. I worked at holding on to faith. I sought refuge in it . My physical recovery has been long, lots of PT, but considered miraculous by neuros. I needed walker before. After 10 yrs I don’t use cane. My endurance is low and fatigue still looms , but I am in a much different place than before. Don’t give up hope!

    • r. cohen October 25, 2015 at 2:43 pm #

      I am very sorry to read this. Yo0u consiostently seemstrong. There is nowhere to turn for reassrances that do not exist. I think you have to go deep inside yourself. If there are answers, that is where they lurk.

      Best,
      R.

  8. Yvonne October 24, 2015 at 2:42 pm #

    Christopher no flowery words or tired adages will change your frustration. So here’s the reality check instead: You have an incurable progressive diseases. 50/50 of recovery actually would be good news for many of us as we slide down further into the abyss of our disease. It’s not easy to cope with any loss of who were once were and especially gruesome is the thought of losing any independence. We’ve been there done that and everyone has to determine how to cope. Some days I’m reconciled with it but sometimes not. I realized somewhere along the MS journey that is ok to be mad today because I know no matter what I try to make peace tomorrow…maybe.

  9. Christopher October 24, 2015 at 4:11 pm #

    I’m obviously not adding anything substantive to this conversation. I wish you well.

  10. Vikki October 24, 2015 at 7:50 pm #

    Christopher if you don’t mind me asking have you thought about Lemtrada?

    • Louisa October 25, 2015 at 4:22 pm #

      I agree with vikki. Get the Lemtrada.

      • Vikki October 25, 2015 at 7:44 pm #

        Louisa I wasn’t suggesting he get Lemtrada, I was more just asking if he has considered it as an option. I do know it’s an approved drug that along with large risks, also has a lot of potential benefits, and from my own personal research and consultations with 3 great NY neurologists, it has potential to stop progression in many people. But as with all ms treatments, I think the only person who can make the risk vs. benefit decisions is the person who has to live with those choices. For me personally, with very limited options left and possible secondary progression, MS scares me more than any medication could. I wish everyone the best of luck in their journey and Richard thank you for your wonderful posts.

        • Louisa October 26, 2015 at 1:14 pm #

          Sorry, Vikki. You did not suggest any treatment and I probably should not either! I am frustrated that Lemtrada is not more readily available in the US as I am encouraged by what I’ve read about it. Certainly, there are risks. What I should have said is that if I had a major “relapse” I would try to get Lemtrada

  11. Betty October 24, 2015 at 7:59 pm #

    Christopher,
    I’m hanging by a thread myself lately. That said, throughout my history with this disease I experience setbacks (more dramatic as the years go by) when the seasons change; winter to spring, and fall to winter. I live in the northeast where these swings can be dramatic, and as beautiful and desirable as it all is … I come unglued. I know this is not what you want to hear, and it’s only my story, but just watch the animals, and watch the weather, and the trees, and the way the water flows. Mother Nature is still in charge. No answers. Just questions. It’s more than my practitioners give me. Hang in there my friend.

  12. Nik October 25, 2015 at 9:34 pm #

    Curious. Are you all trying Terry Wahls diet/advice? Using diet and exercise as opposed to DMD has been my choice. I don’t know if it’s working because I had a Clinically isolated event (BAD one) but have recovered and not relapsed for 16 months. Drs in NYC insisted on DMD, but I told them both no thank you! Am I crazy? Who knows, only time will tell.
    Christopher , I’m thinking of you. I know how bad it can get. I am surrounded by friends who have the disease and now myself. Let time heal you. And keep us posted please.

  13. Jan1 October 26, 2015 at 4:05 pm #

    Nik, I personally do not think you are crazy. I’m into year 11 and have never taken the DMDs (but have learned much in the process). I spoke with Dr. Wahls–couldn’t get into her study because I’d have to pay out of pocket to Iowa City (not feasible for me). I read her books. I do a good amount of food-related things (but not the seaweed/organ meat stuff. Too stressful for me).

    I would consider myself as being on Wahls Level 2 of her diet, though my approach is eclectic, actually. About 95% gluten-free, though the neuros kind of smirk at that.

    One thing I DO know is that stress exacerbates it all. Last Feb., a worst-ever attack that left me bruised after my ankles caved and I fell into a bed frame. I just push ahead. I requested my third-ever (and very likely last-ever) Solu-Medrol 3-day infusion string: crickets (funny buzzword that is). It really took seven weeks of time to recover (as much as I’d recover).

    But rather interesting: all day yesterday I had enormous amounts of stress and then only five hours of sleep. I felt stronger in some ways (relatively speaking) at the grocery. This has happened before. I think it was my will to survive and belief in good promises of Christ (even if not understood too well after yesterday). And Richard, I get that you likely don’t follow that, but I have learned much in the process, served others in the process in ways that I wouldn’t have otherwise.

  14. Vikki October 26, 2015 at 5:29 pm #

    Louisa no offense taken at all, and I agree it is not easy to get approved for Lemtrada. Lots of hoops to jump through and lots of doctors are not on board to prescribe it. This to me is frustrating because in my opinion, MS is a ticking time bomb and it is better to hit early before progression is irreversible. But if you are interested, do your research, and go to your neuro armed and ready with questions. I wish you luck, I hope to be approved by the end of the year.

  15. Jan1 October 27, 2015 at 10:51 pm #

    How very interesting life can get, and how small a world at times. With all the drug commercials on TV these days, including the recent Tecfidera, I can’t help but to notice just how many there are. (A whole lot, and for all sorts of things).

    Turns out that at a high school German Club event many, many years ago, I was in the home of a very kindly man at the time I thought may have been an attorney by noticing his library. I recall him being a very tall man; he and his wife were very kindly. Turns out he was a founding partner of Amgen.

    It all does make me vacillate in thought between drugs being money-making endeavors for companies, yet made by people who aim to try to make a difference.

  16. Jan1 October 27, 2015 at 11:07 pm #

    Also interesting that both he and my family moved out of state in 1980, and both dads passed away in 2012. Life is short; I think we are all here for a rather brief time, so impacting another, be it large or seemingly small, matters.