Interlukin 1 What??????? HELP!

    • Anonymous
      January 8, 2010 at 12:16 am

      Sorry to trouble you all again, but I am back for more information.
      I have been learning more here than anywhere else, including my
      Doctors’ offices.

      Today I went to my Rheumatologist and I wasn’t feeling well at all.
      I have been unable to get out of bed. My body is all worn out. It’s
      like my gas tank is on empty.

      The 1st thing he did was tell me that my lab test for Interlukin 1 was
      way too high. He said that you would never want it to be above
      150. Mine was 168. My Sed rate and CRP were high also. That I am
      used to, but this was the first time I heard about IL-1. He says that
      spurs the production of interferon???? What is that??? It’s produced
      by macrophages????? What is that????

      He found it necessary to give me a Cortisone shot of 40mg. Now,
      any attempt I have to loose weight this week is lost. I have been
      trying to lower my Prednisone dosage and finally get off of it. This
      is a set-back for that. I have gained 25 pounds while being on
      Prednisone over the past 2 years. Despite a 1,200 calorie diet, I
      am stuck with my weight. I hate it and I hate how I look. My self
      image is shot. None of my clothes fit. I am beginning to think that
      I ought to empty my whole closet at Good Will.

      Now, Doctor has put IVIG subcutaneous on the table followed by
      Remicade. Has anyone ever heard of this approach?

      Apparently, I have Common Variable Immune Deficiency with leads
      to Ongoing Connective Tissue Disease (UCTD) which leads to
      Inflammation which leads to CIDP. That is why my CRP, Sed Rate,
      and IL1 are all high. He feels certain of this diagnosis.

      Does this make sense to anyone? After posting about Skin
      Biopsies and hearing from many of you (God bless), I finally
      scheduled one after 2 years of driving this doctor crazy. He
      feels this is an excellent diagnostic tool and should be where
      you start, not finish. So thank you for your feedback.

      If any of the above makes sense to anyone please share with
      me. I am trying hard to grasp this and my brain fog isn’t helping.

      Thanks so much to all of you!!! Without this forum I would have
      already pulled out all my hair!!!! You are the greatest!!

      Sandila :confused:

    • Anonymous
      January 8, 2010 at 2:33 am

      Relax, Death is not imminent.

      Il-1, macrophages, interferon, are all terms associated with the immune system. Rather than me bore you with my cumbersome details, do a little digging and find this stuff. It will help you out a lot. Just google immune system. I just poked around a little and found a 2001 college class posted online. It wasn’t too bad, I mean in the technical way. Or read the definitions in wikipedia and then read a couple of articles and try to put them in context.

      cIDP is a disease where the immune system mistakenly attacks part of the nerves and causes the nerve to dysfunction.

      I have always wondered what kind of Dr. should be treating us. On one hand the damage is done TO the nerves, so a neurologist would have expertise. On the other hand, the immune system (a blood component) is DOING the damage, so a blood Dr.(rheumatologist) might have the expertise. NObody has ever really given a clear answer.

      The solution to our dilemna is going to come from someone who understands why our immune system does us wrong and how we can tell it to stop doing it to us. But anyway, read up on your immune system and these answers will become second nature to you.

      Take care

    • Anonymous
      January 13, 2010 at 10:40 pm

      Thanks Dick!

      I took your advice and began googling and reading. I know quite a bit
      more about the Interluken 1. I still find it very complicated after weeks of

      I do know one thing for sure and that is the higher my count goes, the
      worse I feel! Even with large dosages of repeated cortisone injections,
      it’s still way off the charts. I am still home feeling like I was run over
      by a tank.

      In all the reading I did, I didn’t find how to lessen Interluken1 in your
      body. There was a reference to cortisone treatment, but if that doesn’t
      work what do you do? I guess it doesn’t respond to IVIG. Oh my!!

      If I wanted to know all of this, I would have gone to med school!!!!

      Thanks for your kind words.
      Sandila :confused:

    • Anonymous
      January 13, 2010 at 11:01 pm

      One of the things you will soon learn about CIDP is the S L O W N E S S of everything. It seems like it takes forever to get 1. a diagnosis, then 2. a successful treatment regimen, then 3. some measure of recovery, then 4, a way to learn to live with it.

      It just seems like everything takes so long.

      I mean, you squirt some afrin up your nose and it opens up. Boom. right?

      The thing with CIDP and other autoimmune diseases is that there are just so many bad cells floating around that can cause damage. If you did good research, you ran across T-cells, and B-cells. Those guys are the “cops” of the body. they run around and look for “bad guys” The “bad guys” are viruses and things like that. They recognize them by parts that stick out on the sides of the cell wall, kind of an “ID card” So the B and T cells check the ID cards of all of the cells in the body. If they “check out OK”, they leave them alone. If the cells present themselves as foreign, or invaders, the T and B cells, destroy them.

      Then they make a judgement. They look around to see how many other “bad guys” there are. If there are a lot of bad guys, the order goes out to replicate Cells to destroy this type of cell. Normally this functions pretty good, and your body routinely kills off disease after disease with no problem.

      With CIDP, the T or B cells recognoze the Myelin that surrounds the nerve axon as foreign and needing destroying. Since there is a lot of it in the body, the order goes out to replicate, replicate. replicate. More gets destroyed, and you have problems.

      NOW… Back to the slowness. There is always some level of screwed up T-cells floating around that you never get killed off, and there are so many of them in the beginning that it takes the body a while to get the most of them, and then after the T cells get knocked off, it takes the body some time to recover.

      WOW!! what a story.

    • January 14, 2010 at 10:33 am

      The treatments your doc has been gining you ARE used, so it is not like you wasted time. I would have to wonder WHY ivig was not used sooner. For all you know, ivig may be all you need and has no lasting side affects like prednisone. Remicade too has SERIOUS sideaffects. We have a family member that did not fare well while on it for arthritis. Being that your sed rate is up and you see a rheum., it is probably likely that he would prescribe remicade. I would suggest loading doses of ivig for a few months to see where it gets you. If you have no luck with it, then of course you may have to refer to immunosuppressants. About the ivig sub Q, just my uneducated opinion, but if you react to ivig fairly well, I would do a regular infussion at least in the begining. It goes directly into the blood, unlike sub q where it is absorbed by the body. Depending on your weight, the amount you get for a loading dose could be quite substantial to deliver sub Q. Insist to give ivig a fair chance while weaning of prednisone. As a matter of fact, some people actually have weakness as a side affect of prednisone.

      Regarding the list of diseases you have, unfortunately, once you have one, you are likely to get others. About the ctd, I have that, my doc said it is a pre-cursor to lupus, who knows? Anyway a friend of m ine has it seriously, her doc presribed plaquinil, it is a anti-malaria drug, and she is doing remarkably well. Maybe that could be an option for you in conjunction w/ivig. Remember, these are just thoughts and ideas, so take them with a grain of salt, or less!
      Good luck,
      Dawn Kevies mom

    • Anonymous
      January 16, 2010 at 11:25 pm

      Thank you both so much for all the information you have shared with me.
      I thank God every day for this forum. I feel like it is my safe place to fall.
      There is only so much you can say to your family day after day about how
      you are feeling. Besides, they can look at me and know that I feel bad. I
      haven’t been able to do anything lately. Just getting out of bed and getting
      dressed seems like an accomplishment these days. It’s sad how I used to
      take my ability to do all my activities for granted. I would work and
      run around all day long doing things. That was in my past life.

      I am beginning to think that I am not getting better because I am not
      getting any treatment except for Prednisone and Cymbolta (which has
      helped lessen pain!) I know that Cymbolta just masks the problem, but
      so what if it helps?? My regular Dr. here doesn’t prescribe it because he
      says, “It’s a band aid approach to the problem.” It plays with your Seratonin
      so that you feel less pain. In reality, the pain is still there. Okay, I can
      accept that. Why is it bad though if it means I can take 2 less Vicodin
      a day?

      Dick, I think I now understand why I have to have IVIG before Remicade
      or anything else. Remicade wipes out your B cells. I need the IVIG to
      protect/ build them up. Is that right?

      Dawn Kevies Mom, I was on IVIG for well over a year and there was no
      benefit for me. It didn’t even lower my sed rate or CRP. My Doctor was
      very surprised. I finally called it quits and we tried Orencia. After six
      months, Dr. and I saw no improvement. So “Goodbye” to that too.

      I have to do something! I am getting worse! I just don’t know what to
      do. There is the Rituxan option and Remicade. Would you try IVIG alone
      again? I guess I am frightened to make a decision because I have seen
      no improvement after doing all of these things. So, in my mind I think
      well maybe it is better to do nothing than something that won’t help
      anyway. Is that faulty logic?? How much worse do I allow myself to
      get before trying something?

      Where would you go from here? I saw Dr. Michael Graves at UCLA who
      is on the Medical Advisory board of this organization. He felt that I
      didn’t have CIDP. He things it’s a Neuopathy, but doesn’t know what.
      He told me not to do Rituxan. He said, “Is that Doctor trying to kill
      you!” My husband and I couldn’t believe it. He referred me to
      a Rheumatologist at UCLA. I will see him, but I have been seeing one
      here for several years who is committed to the CIDP diagnosis.

      It kind of upset me that Dr. Graves gave up on me. I wanted him to
      diagnose the Neuropathy, but maybe he can’t. His specialty is CIDP.
      Who do you believe? How do you make the best decisions for yourself?
      I see this in so much of what is written on this forum. There is just a
      mass of confusion. Is it that it still new? We are still learning about
      all these different neuropathies?

      As always, your opinions and information help me more than I could
      ever say! How about a huge group hug??? :rolleyes:


    • Anonymous
      January 16, 2010 at 11:46 pm


      Heading in the right direction, IVIg is an infusion of Immunogobulin(sp?) of the g type. It is a T-cell, not a B-cell, but it is part of the immune system. You are on the right track.

      CIDP does not have a test that positively indicates CIDP. It is kind of a diagnosis by symptoms, response to treatment and by elimination. I mean, If it isn’t this and this and this. It looks like this and this, but it responds to this but not that. Therefore, I think it is CIDP.

      In some patients the symptoms are big and easier to read. In others they are more subtle and much more difficult to diagnose. Since the incidence rate is so low, the disease is rare, and it is so hard to diagnose, most neuro’s either don’t see it, or can’t treat it. Usually patients are referred to larger hospital systems or University Research Centers where they see the unusual stuff more often.

      I know that none of that is particularly comforting, but it is what it is. That is part of the problem we have to deal with. First the disease is rough, and then it is hard to recognize and treat. It makes most of us become more knowledgeable due to necessity.

      Good luck friend