chirpybirdy

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  • May 11, 2017 at 9:15 am

    I was thinking about applying for the SCT program. I emailed them and they sent me the patient intake package. I have had CIDP for 6 years now. I tried Pred and it made me miserable. I have been on IVIG now every 4-5 weeks and i do really good on IVIG but i can’t stop it. If i stop my symptoms come right back so I am still have active CIDP. The criteria is that you have tried two drugs and failed to stop progression. So I think I fall under that category. I discussed the program with my current neurologist and he said he thinks that I should not go through with it at this time. He knows a lot about the program because he is one of the doctors that works on the program at Northwestern. Anyway, he said that it is such a drastic approach to treat CIDP that he thinks since I am doing ok on IVIG that I should stay my course. He said that he evaluates patients and thinks it should be used only for patients that are at the end of trying everything and are very sick. I disagree a bit. I think maybe I should do it now while I am still healthy so that I don’t progress to be that sick. Why wait until i have nerve and axon damage and then try and put my CIDP into remission. By then I will be miserable. I would rather go through a horrible, grueling procedure for a few weeks and then be done with infusions and meds. Maybe my life would go back to normal and I would not progress to being wheelchair bound or having to use a cane. But he still thinks I should not do it at this point. Too many risks involved. Has anyone else had the SCT and were not extremely sick but had active CIDP? Was it worth it? My neurologist said that some of the people go through the treatment and then regress and have CIDP again. Most people that post blogs are successful and did not regress but there are patients that go through it and regress. I did a lot of reading on SCT and I see some risks but more benefits than risk. I have shelved this for now but it is still in the back of my mind. I would like to explore it more. Any comments would help.

    April 26, 2017 at 8:45 am

    Sandy, when I was doing SubQ infusions they were successful. It controlled my CIDP and I tolerated the drug being given SubQ. I just decided to go back to IVIG because I was not having vein problems or side effects from the IVIG infusions and they were needed less often. But yes, SubQ is a good alternative if you can’t tolerate the IV infusions. You get smaller amounts of the IG more often so you probably will not have as many side effects. The one downside I did not like is I had to stick 3 to 4 tiny needles into my skin in order for the amount of IG needed to be able to be administered. The tiny needles are so small they hardly hurt (feel like a pin-prick) but I still did not like it. The IG is administered in between the skin and muscle layer (subcutaneous area) so you will have pouches of the liquid in the area you administered the IG until it absorbs. (It takes a while for your body to absorb the liquid). Also I have heard that some people have site reactions where you stick the needle. Redness, swelling and itching. I did not have this. I also heard that you might end up with hard nodules in the areas you stick the needles over a long period of time as scar tissue will form. Best thing I did like is I was in control of when I did the infusions and no nurse involved. I could do it very late at night while watching TV or bring my stuff and do it at work while sitting at my desk. I do advise moving to a 10% solution of IG as I stayed on the 5% solution and I just needed too much IG in one setting making my infusions take too long. Good luck!

    April 25, 2017 at 11:16 am

    I did SubQ infusions for one summer. I decided to go back to IV because it was less invasive on my time. I wanted to try SubQ because I wanted to be in control of when I got my infusions. But because I did not switch from my current Gammulux 5% to a 10% solution because I did not want to rock-the-boat. I don’t get any side effects from Gammulux and was afraid I would if switch to Hirzenza (sp??). So because I was on a 5% solution I had to give myself so much that it took almost as much time as my IV infusion but I was doing it twice a week now!!! So i felt like I was always getting an infusion. I did like the fact that I was in control… I did it one day at my workplace. But I did not like how often I had to get infusions. But I do hear that if you have problems with the high and low of IV infusions because the immunoglobin is given in a high dose and then depletes over the next few weeks. Well, with SubQ you keep a more consistent amount of the immunoglogib in your blood so not so much hign and low effects. Less side effects then too. But since I do not have problems with IVIG and my veins are good (so far) I went back to IVIG as I only need the infusion once every 5 weeks instead of twice weekly. But I will go back to SubQ if ever start to have problems with IV infusions. They were not hard to do once I was trained. No nurse required after training period. Good Luck.

    March 27, 2017 at 8:35 am

    I get IVIG every 5 weeks now. I was at every 4 weeks for a long time and recently decided to try and push it out to 5 weeks. so far, so good. I have been at the 5 week maintenance dose for about 4 infusions and no problems in between treatment. My hopes are to try to push to 6 weeks in about 6 months to see what happens. I too tried prednisone for my first line of treatment. I was miserable and hated the side effects. I insisted I be taken off the crap and that was when I tried IVIG (6 years ago) and have been on IVIG ever since. I don’t have any symptoms of my CIDP as long as I stay on the IVIG. I go experience very mild symptoms from time-to-time, mostly related to stress. When i get stressed my buzzing feeling in my neck returns, my feet tingle and wobbly knees. But once my stress evens out the symptoms also go away.

    February 23, 2017 at 8:38 am

    Hi Jeff, this is Chirpybirdy. Yes, I did try prednisone as my first line of treatment while I was waiting to get approved for the IVIG. I hated it!!! I was in Florida on my vacation and the side effects were driving me crazy. I was agitated and short tempered. I also could not sleep a wink, would be up all night long. I remember calling my neurologist and telling her that I stopped all the pred. I could not take it. So she got me approved for my first infusion right after I got back from my vacation. I have been on IVIG as the only treatment for 5 years now. I have been lucky and don’t have any pain in my legs or feet so I do not need any pain medication. So far I have continued to respond really well to the IVIG. I have just pushed my monthly infusions out from every 4 weeks to every 5 weeks now and am not experiencing any problems. I hope to be able to push them out even further but am also afraid to try as I don’t want to start having problems. I am also nervous. I have been seeing a CIDP specialist at the U of MN now for many years. He just left the U so I have to start seeing a new neurologist… not happy as I really liked my current neurologist. I have met his colleague and he seems nice so hopefully it will be a good transition. I also take hight levels of B12 and D3 vitamins since being diagnosed. Was told that they can help.

    February 22, 2017 at 8:36 am

    Hi Jeff, I also like you was lucky enough to be diagnosed with CIDP within 3 months of the first onset of symptoms. I started IVIG right away and have been on it now for 5 years. I am currently 52. I had some pain in the beginning and over time it has subsided. My neurologist said that it could have been the initial damage that was done to my nerves and it would take some time for the nerves to heal. Now, 5 years out I am able to push my IVIG infusions out to every 5 weeks and I don’t have any major symptoms from my CIDP as long as I get my infusion. Sometimes the tingling in my hands returns or I start to drop small items, calve cramps at night and fatigue in my legs happens close to my infusion date but once I get the infusion I am good to go again. I hope for you that once you start to receive regular IVIG your nerves will start to heal and you will start to feel like your old self. I have not changed anything at all in my life. I am a mom of a teenager, I work long 10 hour days, and I am very active on the weekends. I do notice a little bit more fatigue in my legs and have to take certain things slower such as biking but it could also be just age. So relax a bit and try not to stress too much (stress makes my symptoms worse) and let your body heal. You are lucky to have started treatment so early and probably have only minor damage to your nerves. Good luck and keep us updated as to how you do.

    January 30, 2017 at 3:01 pm

    I have good insurance. I get my infusions in the comfort of my own home. Have the same nurse now for a few years so she is really good. Since i get them at home the bill is coded under in-home nursing care and I don’t pay anything. But I do know the infusions are very expensive without insurance. My old insurance company use to bill me for the Gammunex and everything associated with my infusion separately. The bill came up to around $10,000 or higher every month. I had to pay my out-of-pocket every year and then insurance kicked in for 100%.

    January 30, 2017 at 8:42 am

    I was put on steroids at first too and had the same problem. I felt like i was going crazy and could not sleep. I insisted I be taken off them and put on IVIG. It has been 5 years since I was diagnosed with CIDP and have been on 35 grams every 4-5 weeks of Gammunux and doing fantastic. I have hardly any symptoms of my CIDP as long as I get my infusion within the 4-5 weeks. I have not had any further damage to my nerves either. So I would talk to your neurologist about putting you on a maintenance dose of IVIG and see it that is better. I was so miserable on the Pred that I decided I would never go back on that stuff again. Good luck to you.

    February 10, 2016 at 8:34 am

    I wish you luck and praying for Ceejay to get the treatment he requires to get well.

    February 10, 2016 at 8:27 am

    I get my infusions at home too. When I was first diagnosed and started to get IVIG I went to an infusion center. That way they could monitor me closely since it was a new drug. But I have been getting IVIG now for about 5 years and love getting it at home instead of a depressing infusion center. My supplies and Gamunex come via UPS two days before my infusion date. I get everything set up (I call my kitchen my mini hospital on infusion days). The nurse arrives and takes over. It is quicker (no travel and checking in) and cleaner (less chance of getting infection from germs). Also so much nicer relaxing on MY couch in front of MY TV. I will keep getting infusions at home as long as my insurance continues to cover in-home infusions. I think they are the way to go if you do not have problems or reactions. Good luck.

    February 1, 2016 at 12:16 pm

    I have this symptom too from time to time. It us usually in my neck. I tell my neurologist it feels like someone is holding a tuning fork vibrating on my neck. It is annoying!! It usually happens when I am close to the time when I need my next infusion so the IVIG must be wearing off. Nothing I can due but rub my neck to try to take the vibrations away or at least ease my tense muscles and take my mind off the vibrations.

    November 14, 2013 at 2:18 pm

    I get a weird motorized general tremor all over sometimes. Especially when I am getting close to needing an infusion. I find it annoying but now that I see others get it I feel better. I was wondering if it was only me or if it was related to my CIDP or what. Now I know that it probably is and I will relax the next time I get it. Rubbing the back of my neck seems to help because I swear the tremor originates from my neck. Feels like my body is standing on a tuning fork. Hands shake too when trying to do fine stuff. I look like an old lady and I am only 49!

    November 14, 2013 at 2:11 pm

    I was diagnosed with CIDP in 2011. I work full-time 10 hours a day. I do feel fatigued and feel some pain and tingling but not so much that I can’t make it through the day. I do notice my legs feel heavy when I have to walk any distance for running errands. But I mostly stay in the office and sit at a desk. Fatigue sets in at night but I can’t rest when I get home. I have a 10 year old daughter that requires my attention. So I am coping and trying to get along with CIPD and not slow too much. I was lucky that I was diagnosed within 5 months of my first symptoms and got IVIG started as soon as diagnosed. I think this has kept my symptoms more mild as I have not had a lot of permanent damage to my nerves. Fitting the infusions into my busy life is a drag though. I hate to give up a whole day every 21 days. Especially one of my precious days off. But I do what I have to do. Good luck to all who try and juggle work and this horrible disease. It is hard but I am blessed that I can still keep it up. I pray I continue to do so as my husband is unemployed and has been for over a year.

    November 14, 2013 at 2:03 pm

    I live in Minnesota and also have CIDP. I started with a neurologist at the Noran Neurological Clinic (Minneapolis). My neurologist did a great job at diagnosing my CIDP. My EMG and NCS showed moderate demyelination and my spinal tap was positive for the protein too. But all other tests were normal. She said since all my other tests ruled out other diseases such as MS, she diagnosed me with CIDP because of the results from my EMG, NCS and Spinal Tap. Also my symptoms came on about 10 days after I got the H1N1 vaccine so she also thought maybe the vaccine played a part in the CIDP. But once I was diagnosed I decided to start and see a specialist and looked at the U of M. It was a wait to get in and see the CIDP specialist at the UofM but once I got in he is a great doctor. I currently get IVIG at home every 21 to 28 days as I need it. I did try SubQ infusions at home administered by myself. I didn’t like them. I had to stick myself twice a week and each time I had to use 3 needles and they hurt to stick them into my tummy or thigh. It took almost as long to give the dose SQ as it took to get my IV dose. But I was constantly getting my infusion. So I tried it for a summer and went back to IV. I would revisit SQ again in the future if for some reason my veins went or I could get my dose down so I didn’t need so much of the drug. But for now, I like my nurse taking care of everything. I just have to sit there. The good thing about SQ is I could do it anytime and anywhere. I took it to work one day and stuck myself and wore it during my work day. I also liked to do it late at night after everyone was asleep. I didn’t have to give up a whole day anymore. IVIG has helped me immensely. I can tell that it helps because as I get close to my infusion date I start to get more annoying symptoms and feel worse. Then I get the IVIG and I feel better and symptoms subside for a few weeks.

    November 12, 2013 at 9:14 pm

    No, you do not have to pay any taxes on the settlement. And my lawyer fees are paid by the fund too. So there is no fee to me. If my case did not go to filing, then I would have had to reimburse the law firm for the collection of my medical records. But since my case was filed then the fund also pays for the medical recored collection fee. I am still awaiting on my judgement. The lawyer said that it is filed and in the decision stage. I will get compensated but we are hagling back and forth on the amount and trying not to actually go to trial – settle out of court. It took three years to get to this stage. But no matter what I am awarded it won’t take my CIDP away and resore my life to what is use to be. But any funds I do get in the settlement will help me with my medical out-of-pocket expenses that I now have because of CIDP. I am not sure if I filed under VICP or H1N1 – I left that up to my lawyer. They file vaccine related cases and nothing else so they have a lot of experience in this area.