CIDP Questions Need Your Advice!

    • Anonymous
      May 15, 2009 at 9:13 pm

      Got a little question for everybody here and hope I can decipher which one it could be! I have Lupus and sometimes the Lupus attacks my nervous system. But then they told me that the lupus is also causing my CIDP!
      After going to Greenville and seeing the Rheumatologist and him taking labs which are not back yet. I wished I would have seen him today.
      I am having another attack on my nervous system. The past two days I have been really sleepy and tired. It always starts out that way with me. Then that crappy numbness and tingling starts and then the burning in my arms and feet start almost like I stepped on a lit cigarette! I have been bad off today! Gosh! I am taking a high dose of prednisone and then next week after the labs come in then they are going to place me on Imuran. I swear I think I need to be on IVIG. This stuff is eating up my nervous system something aweful!
      People with CIDP! Do they still get attacks over and over again doing more damage or do they get better while on the treatment. Meaning does this numbness and tingling ever go away. Geesh! I am taking almost 35 pills a day which some are vitamins and asthma meds and prednisone and yet this stupid numbness and tingling just seems to not be going away.
      I can’t describe it! But it feels like attacks on my nervous system when it hits and takes a while to recover from it. Then I will slowly get better to gain another attack. Over and over again.My feet are dead! Totally dead!
      The muscles underneath my feet are drawing in causing me problems with wearing shoes and standing on my feet for a short period causes pain. My right hand is drawing in and one finger is already deformed looking and won’t straighten out. This happened last summer when I had that attack after I had spine surgery. Maybe my spine caused this problem in surgery. I don’t know! How did your CIDP first start out? And does it make you feel sleepy and tired feeling. Had my thyroid levels checked and am doing great there but this numbness and tingling stuff just suddenly came back with a vengence! Bad thing too is if you have other health problems and that makes me wonder which one is being the culprit. I’m so sick of doctors and needles. But I need a break too! I just don’t understand why they are not placing me on IVIG’s. Maybe because I have Lupus?
      I’m about ready to say h.. with these doctors and just give it up and let it go and do what it wants to do. Stop my meds and let this nasty stuff just go ahead and take me on to another place. A place where this is no more pain and suffering. I just can’t take this anymore! I’m tired of trying to fight this nasty stuff! I will be talking with the new doctor sometime this week and hope that he decides to do something really fast here before I just say “I Quit”. It’s like being ding donged to death seeing all these doctors. I have Insurance but have Co-Pays an then if it’s not a provider I end up paying more money! At least if I know how your started and the reason then maybe I can figure out which is the culprit. Lupus flare or CIDP flare! Thanks for sharing with me for I could use answers right now!
      Linda H

    • Anonymous
      May 16, 2009 at 8:06 am

      Hello LindaH,

      I don’t mean to sound like a smart a**, but it seems to me like the 35 pills a day would be enough to give you a lot of those symptoms that you are talking about. Perhaps you need to sit down with someone that really knows their way around a pharmacy and try to get off some of that stuff.

      This is just my opinion and not necessarily that of the staff and management…

      Hope you can get some answers to your questions.


    • Anonymous
      May 16, 2009 at 4:39 pm

      Hi Jim! I wished I could get off the medications. And believe me I have tried and after a few months ended up getting sicker again or landed in the hospital or ER!
      I have several things going on with me. Severa Asthma with CODP mixed, Osteosporsis, A Pernious Anemia, Vitamin D Difeincy, CIDP, Lupus, Hiatial Hernia and Diverticulitis and then no Thyroid along with High Cholesterol.
      My drug list each day:

      1. B-12 Injections Weekly and the Sublingual Tablets 1000 mgs per day 1 time a day
      for A Pernious Anemia (Without it I will die)
      2. Vitamin D 100IUs 1 time a day (Vitamin D Difiency)
      3. One A Day Multi Vitamins 1 Tablet a Day
      4. Ibuprophen 800mgs 3 times a day (Lupus Medication)
      5. Plaquinel 200mgs 2 times a day (Lupus Medication)
      6. Evista 1 tablet a day for (Osteosporsis)
      7. Prednisone 40mgs right now but was at 10 4-10mgs tablets per day(Lupus & CIDP)
      8. Dicyclomine 10mgs After every meal. 3 times per day for (Diverticulitis caused by Lupus)
      9. Metoclopram 10mgs 4 times a day (Hiatial Hernia caused by Lupus)
      10. Lovastatin 20mgs 1 Time a Day (High Cholesterol)
      11. Clonazapam 1mg 2 times a day (Anxiety but using it for sleeping due to Lupus and the CIDP)
      12. Gabapentin 300mgs 6 times a day ( Nerve Damage Pain CIDP)
      13. Tylenol with Codiene Only to be taken as needed which I barely take unless I can’t stand it) Lupus Migraines
      14. Abuterol Sulfate Nebulizer Medication 4 Vials a Day (For Asthma)
      15. Abuterol Sulfate Inhaler 2 Puffs 2 times a day (Asthma)
      16. Symbicort Asthma Inhaler 2 Puffs 2 times a Day (Asthma)
      17. Synthroid ( Thyroid)
      18. Lexapro (For Anxiety but only take that when needed)

      This is what I am supposed to take every single day! Before I got sick and was rather healthy I only took regular tylenol and that was rarely. When Lupus struck me in the late 80’s and then got diagnosed in 1993. I went from regular tylenol to all these medications! 🙁 I went into remission for two years and stopped taking everything. Boy was that great being in remission. Then the Lupus came back and so did CIDP. There is no cure for my disease but it can be treated. Some Lupies though end up being stubborn cases and never really get better. I have the Systemic Form which attacks my organs. Any part of the body it can attack. It attacks the Kidney’s Heart and Lungs, Nervous System and even the Bowels! Without the stomach meds, I am in my bathroom at least 4 times a week with vomiting or upset stomachs. Very painful disease. Joint pain, Low Grade Fevers, Migraines, Lung Pain, Vomiting, Upset Stomachs and then having CIDP with it just don’t mix to well!
      I don’t wish my disease on any human being out there! That is one reason I am praying they start doing Stem Cell research and hope the Insurance companies start paying for treatment. I will never see that day! I am very disabled! And when I have a good day and can get out of my house I am like a bird that has been in prison for several months that suddenly wants to go wild and free! Not a drug addict though and can quit anytime I feel like it. Just have no choice but to take these meds. Many years ago Lupus patients only had a 5 year lifespan. Because of these medications I have been able to live 20 years. These meds have given me 20 years of extra life that I would not have had otherwise. The disease can still kill though and I have lost quite a few friends with it. Most of them were in their early 50’s and some were younger. Just alot goes on with this disease. Never know what to expect from one minute to another. I have been a fighter though! Really have and still trying to fight it! Just every now and then especially this past year seeing so many doctors and surgeries and needles. You start to get tired of putting up with it! That last friend that died from it just went to sleep one night and never woke back up. Pulmonary Edema! I just deal with it and keep on trying to live my life the best I can! Doing small projects or reading books, enjoying my container garden, enjoying looking at my flowers and best of all giving all my cats a good decent home. I have several babies that need me and as long as I am living I plan to care for them. They have shown me love that not even my own family can provide. Except my husband! He too enjoys the cats and they are our children. Believe me! I have talked to my pharmacist many times over. Just wished I didn’t have to take all these meds!
      Linda H

    • Anonymous
      May 16, 2009 at 5:33 pm

      I can’t really look over your list of meds but I do know that Lexapro is a drug that should be taken daily to get the maximum effect. I recently did quite a bit of research on Lexapro specifically.

      Lexapro (or any other anti-depressant/anti-anxiety med) has a cumulative effect. Basically you need at least a full week of drug in your system before you see the effects. If you are just taking it once a week then you aren’t getting the maximum benefits from it.

      Most people see the effects anywhere from 2-6 weeks after taking the drug.

      If you are having anxiety attacks on a regular basis then I think you need to speak with your dr about your med & your dosage. The dr may add Xanax as needed if daily Lexapro doesn’t help.

      Also taking 800 mg’s of Motrin may cause some problems. Here is a link explaining the side effects of Motrin.


      I’m thinking some of the symptoms you experience (numbness in particular) *could* be a side effect from taking so much Motrin.


    • Anonymous
      May 16, 2009 at 6:01 pm

      Hi Kelly! It’s not really anxiety attacks that I have. When the Lupus acts up it makes my nervous system hyperactive. Parkinsons type of shakes and then too I start to get panicky because I can’t get relief! The Lexapro he gave me just for when I get these side effects. It has a mild sedative effect to it and he only wants me taking it for when I need it. Not for nerve per to say but to calm me down when the Lupus flares. I was on Zanax and forgot to add that one in. I take that only as needed too but it is a very mild dosage of .25. Really trying to not take the Zanax and they switched me to Clonazapam. Which to me is just as good. Actually like that better and it’s not as addicting.
      Makes me feel like I am a drug addict though taking all these pills. But I can’t help it! I have met a few others like me taking more than I take! LOL! I hope I don’t get that far! I am praying the US also does something with Health Care Reform and actually does something decent. People that are chronically ill shouldn’t have to be paying out what they are paying. My husband and I both every single month just for me alone fork out over $500.00 a month in bills. Sometimes more! And that’s after my insurance has paid! I do the mail order pharmacy now so I can save a few dollars on RX’s! It’s certainly not cheap being sick and for those without healthcare with my disease. I certainly feel sorry for them.
      Well I am getting offline! Going to watch some TV and relax for the night. Wishing everybody a good night! Hugs
      Linda H

    • Anonymous
      May 16, 2009 at 10:18 pm

      i have read in my books that ivig is for cidp or gbs,
      As diabetes neuropathy is treated as diabetes, lupus peripheral neuropathy should be treated as lupus.
      I insist you see a inmunologist or internist, they are the best to fit a inmunosupresant treatment.

    • Anonymous
      May 16, 2009 at 11:54 pm

      Thank-you for mentioning the Immunologist! By what I have been told so far I have the Lupus with CIDP. It once was a Neuropathy but then reverted to CIDP which is rare but does happen to only a few with Lupus. IVIG is one treatment and Plasmapheris but only as a last option. They usually try prednisone and Chemo first for it and if that fails then the last option would be these two treatments. I just wished they would go ahead and try the IVIG and get it done and over with. It makes me feel like a guenia pig being sampled on here! LOL! Certain trails and errors! I normally have been lucky with my disease not doing to badly but have had some bad spells but was always able to shake it off. This past year though has been a roller coaster ride! Started right after a spine injury and has not been controlled since. If I don’t see myself getting better after seeing this new doctor that will be my next option. Hugs
      Linda H