acceptance76

Your Replies

  • March 28, 2018 at 4:35 pm

    Thanks for sharing your experience Brian. I recognize your name having been a visitor to the Forum since last year. In my opinion you provide good support to the Forum.
    I am on 2400 mg of Gabapentin plus 2 Hydrocodone tablets per day as needed. Neuro is not comfortable with prescribing Controlled Drugs and suggested that I seek Pain Management and look into Medical Marijuana which is legal in FL or GA, where I spend my time. Neuro will continue tracking and controlling spread of the disease (HOPEFULLY) and methods to reduce Extreme Fatigue.
    A family member, who suffers from Fibromyalgia, Psoriatic Arthritis, and Pustular Psoriasis suggested trying Cymbalta or Lyrica.
    THANKS
    BILL

    November 22, 2017 at 8:26 am

    IVig Experience
    About weekly I check the Forum. It’s scary that I have learned more about
    CIDP than my Neuro. In fairness, the disease if very rare and little is known. One of the current topics seem to be centered around IVig. Most recently I decided after 4+ years of Prednisone plus pain killers as needed, I would try IVig. It seemed that Prednisone was not being as effective. I should mention that before the IVig I was able to walk a short distance without aid, never fell, climbed steps using rail for balance, work in wood shop, climb ladder, was cars. lift moderate weight etc. When any of these things were overdone I would encounter pain. Sometimes bad pain but it would pass after a day or two. It is important to mention that FATIGUE was a constant battle. My Neuro prescribed Adderall, in controlled dosage. It was like getting a new lease on life. I was able to take two pills. One in the Morning and One in the Afternoon. I was not hyper or nervous, but had alertness and energy to do things and quality of life was good. As the medication wore off I would return to that tired, lethargic state.
    I tried IVig starting with a 5 day load. I used the new medication called Prevacin with no saline or steroids. I tolerated the infusions well which were administered by a Visiting Nurse. I would recommend a Visiting Nurse. However, after the infusions each evening I was generally incapaticated. After all 5 doses were completed I suffered almost continuous pain and could barely walk for three days. As directed by the Pharmaceutical Brochure. I contacted the Nurse and my Neuro and told that that I was sicker than ever . The disease was exacerbated by the infusion. They made some suggestions regarding hydration and tranquilizer but were puzzled. Out of 21 days after initian load, I had two or three decent days until my 3 week infusion. I completed the three week inusion just recently and was in bad pain that night but relieved in the morning. I am not the same person that began these treatments. I am weaker, more fatigued, and easily in pain. At this point I do not plan to go any further. I had to incur the out of pocket expense which is obscene but had to at least try. Regardless of the outcome the my continuance would have been prohibitive.
    I am now working with my Neuro to pursue the previous method with possible with some new medications, but also introducing Pain Management (medical and mental) and treatment for Anxiety which brings on the pain.
    HOWEVER, since we are all different, I would recommend that if your budget permitted you should consider this option a try. It appears to work for a number of people and I seem to be the exception. GOOD LUCK AND BE BLESSED BY THAT WHICH YOU BELIEVE IN.

    Acceptance 76 (a/k/a Bill F)

    November 8, 2017 at 10:36 am

    Bless You Collins22. Since I found out about the Forum and began to participate last October, I don’t feel alone and have learned so much to give me hope. A challenge has been my wife and others, to understand the complexity and pain that I am enduring. My wife’s daughter suffers from Fibromyalgia, Pustular Psoriasis and Psoriatic Arthritis. She relates my illness to that, which is terrible, and really does not comprehend there is a difference in how we suffer.
    Your post, which was outlined perfectly for my needs, has validated so many things that I have experienced and fight for. I felt so alone and was being criticized for my tenacity to help myself. I hope that you continue to stay with the Forum and I wish you the best on your journey. Bill F GA/FL

    November 7, 2017 at 7:58 am

    FELLOWCIDPGUY…. Hello Jeff (Andrea Marie and Chirpy). Before I begin I don’t think that you need to apologize for complaining. I hope that is what the Forum is about. It sounds like you are relatively new to CIDP and you should protect yourself in any way you can from further progression and try to be comfortable where you are. I have only recently been involved in the CIDP Forum (Oct.) and continue to learn so much thanks to your recent post and several others as well. It is similar to another Support Group which has helped me tremendously to overcome another challenge for over 20 Years.

    I am not that far along to help with my experience with IVig as has been indicated in my earlier posts (although 4 plus years on Prednisone). In addition to my learning as much as I can, I am hoping that by telling my experience as I go through IVig (starting 10/23/17) to providing updates. It might help someone else that might experience the same thing but not intended to mean that applies to everyone. It can be intimidating not knowing what to expect. I have been using a Visiting Nurse, which was recommended in the Posts, and that part of the process has been a positive experience.

    I have a great Neurologist who is overworked but is willing to do research and think out of box. He is willing to listen to what I bring to the table. I have fired two because I was not satisfied with their generic approach for treatment and lack of providing information. I don’t know if I like the answer “there are not different types of illnesses”. If your Neuro is referring to within CIDP, I would beg to differ. Just my opinion.

    Tumeric is something that I would also be interested in learning about along with other supplemental medications. As to Cramps/Spasms, I have been involved in athletic activities most of my life, and PT seems to be something that has to be approached with care. Unless they are knowledgeable about how to approach CIDP patients they can cause unnecessary discomfort. Stretching is good, no doubt. When I have spasms, usually during the night, I apply large heating pads to the backs of my legs (low to med setting). It usually works. I recently started sleeping on a heated mattress pad which has held spasms at bay. Of course overdoing it will bring it on for me.

    As an aside, I am so sorry to hear about your home being destroyed. Oh No HoustonI I have a home in FL on the East Coast and managed to escape any significant damages this past season. It’s like “who needs this?” when you are already battling CIDP ! You sound resilient. I believe that a lot of things can be replaced but the items with sentimental value are the real treasures. Hopefully you have been able to recover many of those.

    THANKS AGAIN TO EVERYONE PARTICIPATING IN THE FORUM. NEWCOMERS STICK AROUND AND LET US KNOW HOW YOU ARE DOING.

    Phew. OK I’m done.
    Acceptance76 Bill F GA/FL

    November 6, 2017 at 7:34 am

    Thanks CER100. Ironically Headaches have not been an issue for me. At best some minor headaches periodically but I have had hypertension for many years and I think the stress had more to do with it. As Participants say, everyone is different, BUT WE ALL HAVE A COMMON THREAD. Besides Hydration, I will include electrolytes going forward. Certainly no harm. Taking a 5 day prescription of Valium to calm me down also helped smooth out my body chemistry. I know that all addictive drugs should be taken with caution and only as needed of course.

    Thanks to the feedback from the yourself and other Participants I have decided to keep up the IV’s and in fact yesterday was the first day that the pain subsided and I started to feel better. That would be 8 days after completion of infusion. That might help others who experience what I have. I am a very anal person and need to have answers. Patience is not my Virtue.

    I know everyone wants to protect their privacy these days but I think it helps further to give some sense of connection…
    Acceptance76 is Bill F from GA/FL

    November 5, 2017 at 4:27 pm

    Paul G. Thank you so much for your response. I am overwhelmed by all of the responses and did not realize how deep these posts go when I came on board. Getting familiar with the navigation today opened my eyes to so much more. My wife was next to me when I read your post out loud. It almost described me to a T. I have driven her crazy over these years. Several Particpants have given me feedback and it has lifted my spirits today. I was in a downward spiral because I thought that my last resort was actually poisoning me. Ironically today is the first day after the first 5 infusions I actually feel a little better. It was really scary. I sent up a flare to my Visiting Nurse and Neurologist that I did not think I should have gotten worse after the first five infusions. They offered some suggestions which I followed such as Hydrating and Calming Down (prescribed Valium for a few days). Also to take Asprin with my pain killer to help it process. Also my emotional ups and downs were not helping to even out the body processing all this fluid.
    Thanks to all that have contacted me including yourself. I will reach out to you as I travel this journey. I can only hope that I can offer aid to others afflicted. It can be a very lonely and frightening disease. Bill F

    November 5, 2017 at 11:27 am

    Thank you BryanF and CER100. My name is Bill F. I can’t thank you enough for your responses. I have begun day 8 today 11/5. As of yesterday I was still miserable and discouraged with a lot of pain. I noticed that Anxiety is a definite trigger for me. Going to hang in and hope. Dr. and Visiting Nurse both said I must have lots of hydration and calm down.

    I am extremely grateful for this site, and It would be nice somehow if the system was able to organize not only by topic but by other CIDP types. I looked and I found we have about 14 active CIDP Participants…. Sadly how many more CIDP patients are out there not knowing this Forum exists. Considering that this is available Nationwide there are not many people involved. I think what also happens is Participants start feeling better (hopefully) and no longer visit the site. Alumni so to speak. Its too bad because they could offer so much of their experience.

    November 4, 2017 at 9:47 am

    Thank you Bryan.

    I believe your participation in the Forum adds great value. This has been a tough road for me starting at 71 years old ! Now at 76. I feel that my age vs. younger patients makes things more of a challenge. The psychological impact was devastating. The Forum has given me some light.

    To the point. I received 5 days of Previgin infusion without incident.
    But since the last infusion on 10/27 I have felt worse than I ever have and it is not improving….so far. CIDP symptoms are exacerbated. Most of all is the intense pain requiring constant painkiller. My Neuro and Infusion Nurse are puzzled. I am due for infusion every three weeks. Next shipment is the 7th. I am told it is my decision to continue or seek other courses of action.

    I do not want to discourage other newly diagnosed patients. Everyone is different and there are many good outcomes. I seem to be an exception.

    Anyone else reading this is more than welcome to provide input.

    November 3, 2017 at 9:49 pm

    I have begun the Ivig process. The initial load was five contiguous days. I tolerated it well. Since the infusion was completed on 10/27 I have felt worse than I ever have. Is anyone aware that that this can happen. How should I feel? Same, better, temporarily worse? Other? I was told by my Neurologist and Infusion Service that the decision process to proceed for each phase is entirely mine. I want to be sure I have as much knowledge as I can gather. This should not discourage anyone about to embark on this process because each person is different. .
    Retired, five years on Prednisone with flare ups (pain), still can walk, balance on each foot. have feelings in feet, never fell, work on small home projects. Recent flare up not responding as well as in the past. Decided to try IVig.

    November 3, 2017 at 9:22 pm

    Bryan F / CER100 / Paul G / Anyone Please Help Me
    I am in the process of starting the IVig process. The initial load is five contiguous days, then every three weeks one infusion. Can anyone tell me what to expect right after the initial load. How should I feel? Same, better, temporarily worse? Other? I was told by my Neurologist and Infusion Service that the decision process to proceed for each phase is entirely mine. I want to be sure I have as much knowledge as I can gather.
    Retired, five years on Prednisone with flare ups (pain), still can walk, balance on each foot. have feelings in feet, never fell, work on small home projects. Recent flare up not responding as well as in the past. Decided to try IVig.

    My Eternal Gratitude

    October 21, 2017 at 6:52 am

    Thank the great powers that be for the Foundation website. In particular the Forum. I wonder how many uninformed Candidates there are out there stressed and struggling. Neurologists are not much help in this regard. Since I found this site I have been informing my Neurologist about the Foundation and any matters of interest. He is a good man and open to help.
    In any event I am about to embark on my first IVig this Monday. Insurance, Humana, was a slam dunk approval. It will be 40mg of Previgen at home for five days and then 40mg one day every three weeks. Seems to me that this will be a lifelong process of taking the med. So what! Beats the alternative (if the ins. continues to pay)Until now I have been on Prednisone for over 4 years. Previgen has only been approved by the CDC for a couple of months but has been around for a while in other countries (of course). It is less harsh on the system, supposedly, but still has its potential side effects. Ya know, I took statins for years and now they suspect that may have contributed to my CIDP. There is not a shopping market full of choices. You start getting into maybe this or maybe that or a combination of the two. Most importantly get a Neuro that has as much experience as possible. Not easy! I am pretty fed up and hope the IVig will turn things around. I have lost some of my leg strength, but hope to salvage what is left. I can get around a bit but the pain in the feet and legs starts in about ½ hour.
    As an aside I attended a Chapter Meeting in Atlanta a week ago. It was a fantastic learning experience and a chance to meet other CIDP and GBS patients. I strongly suggested keeping your radar tuned for one near you.
    Good Luck to you. Each of us has to fight our personal physical demons defined under the same umbrella.
    The volunteers cannot get enough accolades for the work they do !!!!!

    October 12, 2017 at 12:32 am

    Although I have had CIDP since 2013, I am only becoming aware of the implications and diverse symptoms of this disease thanks to the Forum. My experience has been that the Neurologists do nothing to enlighten you about the disease because they know so little themselves. “You have blah blah blah and this is what we will prescribe. Have a nice day.” I am on my third Neurologist who finally is on board with learning and seeking proper treatment. I have been cruising on Prednisone all this time and for the most part it has controlled the symptoms and I have been reasonably functional. Fatigue is a separate matter.I have incurred some permanent nerve damage but still get around fairly well. Glad I do not have to work. Helps to be retired. There have been minor flare ups that have been treated by boosting the Prednisone and then lowering the dose gradually. That is until recently. I was experiencing severe pain that started gradually and increased over the course of a week. I contacted my Neuro who fit me in within a couple of days. He immediately boosted Prednisone to 60mg every other day which has helped. Although he prefers Prednisone, he is scheduling me for Home IVig. 5 full days to start and then determine what is necessary after that….assuming all goes well. He has treated patients with IVig not just for CIDP. I informed him of the Foundation and he was grateful for the information. I am standing by waiting to hear if my Insurance approves and when the home treatment will begin. I don’t even want to think about the cost if it is approved. If it works what choice do I have? I have seen information about Subcutaneous IVig which seems interesting. Being alone, this whole experience has turned my life into more than my worst nightmare. Finding the Forum gives me hope and a better understanding of what is happening. Thanks to all Participants in the Forum for your input.

    October 4, 2017 at 10:28 pm

    Bryan F and cer100 Thank you for your support. This is good information for me to take to my Neuro on Monday. I was a desparate man before I found this site and it has been a gift. Bless You.

    October 3, 2017 at 11:02 pm

    Thanks for the various experiences with IVig. I have been surviving on Prednisone, Adderall, and Hydrocodone. for the past 4 years. Quality of life has been acceptable but not as good as if I would have espected. In the last month my status has gone down hill rapidly. Pain is almost full time regardless of being dormant or active. Exacerbated by stress and anxiety. Contacted my Neurologist for an urgent appointment which will be next Monday. He is on vacation this week. In the interim he advised that I increase from 30mg Prednisone every other day to 60mg every day. He wants to recommend IVig as a next course of treatment. I have heard of Subcutaneous IVig becominng an inexpensive alternative and much more convenient.

    September 25, 2017 at 11:49 pm

    Good Luck Fran with your decision for a second Diagnosis. I am very new to the FORUM.From my own experience this is a vicious disease and can cause extreme pain and take away overall quality of life activities. …..but with proper and prompt treatment can be controlled. Many non medical decisions we make in our life are given through investigation, why not our health? You are fortunate to be near excellent sources for a second opinion. Reading your input, after 5 years I am going to discuss a second opinion with my Neurologist. I want to be certain that my treatment is the best available.