Are you taking Immunosuppresants?

    • Anonymous
      July 23, 2010 at 3:44 pm

      From “Drugs in this class include corticosteroids (such as prednisone), 6-mercaptopurine (6-MP), azathioprine, methotrexate, and cyclosporin. As immunosuppressants weaken the immune system, patients taking them are more susceptible to infections. ”

      Are you taking any of these?

      Do you have more frequent and/or more severe cold sore outbreaks?

      I do.

      And, if you do, what are you/have you done about it? I asked my pharmacist to no avail. That means they (more than one) said ‘take care of them’….

      I’m trying super lysine now.

    • Anonymous
      July 23, 2010 at 5:32 pm

      I would be interested to know a doctor or pharmacist or clinician’s take on this idea: One popular idea currently is that many autoimmune disorders are caused, or at least aggravated, by exposure to viruses. I HAVE heard before that steroids can cause some viruses to “bloom”; so, my long-winded question would be: “Would it be a reasonable consideration, while taking steriods, to also take an antiviral med as a precautionary gesture?”

    • Anonymous
      July 23, 2010 at 8:07 pm

      I’m on one and I hate it because all the s/e’s of this med make some s/e’s of CIDP worse. One more year to go! Whew!
      Taking it a step further? Who’s to say that hormone suppressants don’t contribute to it all as well?
      Thing is, HOW info on CIDP patients are actually diagnosed w/cidp has been hap-hazard at best. Questions in the ‘polls’ done are only as good as the knowledge of ‘the questioners’. Maybe they aren’t asking the RIGHT questions about prior to onset, then about onset? Diagnosis…we all know about THAT! The good, bad and the ugly.
      Every single med to help CIDP has a consequence. Thing is to try and error and see which meds work for YOU. We all seem to be soo different in our reactions or effectiveness of meds? It’s sort of a 52-pick up kind of affair, for each of us. You’d ‘think’ things could be more orderly by now? It’s not getting down to the rankandfile docs who treat us tho.
      Somehow the connection between folks like us and the whole medical community is NOT a connection at all. Are we to be cited for shortfalls, or should the docs be cited? The docs have access to statistical data about US that we don’t have. So….Docs -get on the ball and communicate! Please.

    • Anonymous
      July 24, 2010 at 3:24 pm

      Anybody wanna answer my question, or Elmo’s question? They are both linked, ultimately, to a discussion about anti-viral meds?

    • Anonymous
      February 3, 2011 at 12:37 pm

      Anybody care to chime in, yet?

    • Anonymous
      February 3, 2011 at 12:58 pm

      I’m on an immunosuppressant, Cellcept, so I’m also more vulnerable to infections and viruses.

      I’ve been on it for about a year now and the only thing I can do is to be very proactive or aggressive in treating any kind of sniffle, cough, or fever.

      I had a persistent cough for a couple of days back in December and I made an appointment with my GP immediately. I wasn’t going to let this thing linger. He diagnosed me with bronchitis and wrote me a script for an antibiotic.

      The good thing is that this temporary illness didn’t hit me like a sledgehammer the way I expected. In fact, it didn’t even slow me down. I continued my workout regimen and normal activities without any limitations.

      My limited experience probably doesn’t help you guys much.

    • Anonymous
      February 3, 2011 at 1:54 pm

      To the contrary, slugger. It is through the addition, stick after stick, of limited experiences that we will accumulate extensive experience. Thanks for your feedback.

      I’ve been on my maximum dose of immunosuppressant about 8 months now. I too, recently suffered from post nasal drip and sore throat. Not after my flight to Mayo and back, it was after I went to somebody’s house for dinner. No fever, no aches, yet on the sixth day, I too went to the family doc. I got meds, I got well. Also no big deal.

      My big toe fungus? That’s a different matter, but the GP doesn’t want me on any more meds!

    • Anonymous
      February 3, 2011 at 4:35 pm

      Well, Elmo, I did not find the direct link between steroids and viruses, yet. I did find this on fungus thanks to jfox- “Thrush can affect anyone, though it occurs most often in babies and toddlers, older adults, and [COLOR=”Red”]people with weakened immune systems.[/COLOR] (emphasis is by yuehan) Examples of medications that upset the balance of microorganisms in the mouth include corticosteroids…”


      for more, lots more including: “…There are five major types of infectious agents: bacteria, viruses, fungi, protozoa, and helminths. In addition, a new class of infectious agents, the prions, has recently been recognized….”

      go to: [url][/url]

    • February 4, 2011 at 9:17 am

      hi yeuhan. Kev is not on any imunosup. He did get canker sore FREQUENTLY in the begining. With some investigation, I did find that ivig could cause the canker sores. I have also read some documentation that people with autoimmunes can also be immune compromised. For those on ivig, it does not make sense, because a typical cidp maint dose is even more than a pid patient? Candida/fungus, as you offer as cause in your post, has been an issue for us from the get go. Kev had strep a few times as a toddler through about 1o y/o. We did several antibiotic courses. therefore creating at times thrush, canker sores and obviously our over population of bad candida. We subsequently had our tonsils removed. Perhaps his stress from surgery caused the cidp, maybe the aneasthetic, maybe the mono/epstein barr he contracted in this time frame? I also feel that the candida that resulted from the antibiotics could be the culprit since it caused the leaky gut situation. An unhealthy gut flora creates the lg, which allows for the mastocytis enterocolitis. Research I have read suggests that 80% of the immune system is centered around the stomach, if the gut is not healthy the rest of the body is compromised. I can tell you that Kev was doing much better with his probiotic prebiotic regimen. He just got sick of taking all the pills and honestly I wasn’t up for the fight with so many family things and deaths going on. We both agreed now to get back on the regimen because he has been so chronically sick the last three months. We also found out that there was a staph infection in the sinus cavity and are currently on another course of antibiotics for 3 months, therefore messing up our gut flora again.

      So…regarding your original post we are not on imunosup and do get sick from Oct -March, practically the entire time with only a few good days in between and it does make our cidp worse. For the first two years we just thought it was a relapse and did loading doses, now we just stay on our maint dose and wait for the season to get better. Next year I am hoping Kev will stay on the pro/pre biotics the entire year and we will see if that makes a difference regarding the healthy gut flora and immune system gut connection. At this point all we can do is trial and error!

    • February 4, 2011 at 4:22 pm

      I am no longer taking Prednisone which worked wonders for my CIDP after only 2 years. After the first three months on Prednisone I had No More Pain and after six months it was slowly reduced. During that two years I washed my hands took vitamin C and sterilized everything especially my toothbrush.
      I have never had a flu shot or a shingles shot.
      I still have not had sniffles, cold, flu, infections or any other malady.
      My Doctor expects the rest of the nerves in my feet to come back completely and I function normally now with no Meds.

    • Anonymous
      February 4, 2011 at 9:33 pm

      because of osteo issues. That’s why I went straight to IVIG, passing ‘GO’, then further other medical issues nixed other options for good.
      That doesn’t mean I do not use more than one ‘topical’ steroid application for reactions to IVIG and other issues! I don’t worry about those, because they are ‘controlled use and application’ and also for very limited periods of time.
      It is KEY tho? To distinquish between treatment for viral vs. fungal issues. Steroids can curb viral growth? But, fungal is a whole different kettle of fish. Treatments are very different, and often for fungal? Nasty to endure and harder to diagnose.
      I have explored this aspect in the past? But, never kept references as…it didn’t apply to me in the long run.
      I can say tho? That while on IVIG for the last few years? No pneumonia, or flus or bad colds…something I’ve always experienced since I was a mere kindergardener! I still have congestion, and sinusitus? But, it’s a heap better than being wiped out w/a cold every 8 weeks! My last ‘cold’ got me the pneumonia which got me the CIDP! And, a few other ‘things’. There are times to be grateful? And, thus ‘Chill!’. Hope to all!

    • Anonymous
      February 10, 2011 at 10:18 am

      Here to get IVIG should be in bed with 100% paralisis, and then I get the IVIG….what can I say…you are lucky.
      I have to get along with the azahioprine (imuran) or the ALA as I´m taking it now…