Did I Do The Right Thing?

    • Anonymous
      August 8, 2007 at 5:03 pm

      Hello Everyone,

      Today, I went to my neuro that prescribed the prednisone and cellcept on
      April 3. April 23, I was rushed to the ER, stayed in the hospital 14 days. I
      came home for 2 1/2 weeks, rushed back to ER, stayed again in the hospital
      17 days. I came home for less than a week, rushed back to the ER again for
      another stay in the hospital for 4 days. All three times, I had really severe
      muscle weakness…I couldn’t move. The second time, I had a UTI, w/o my
      immune system up, couldn’t fight the infection.

      Prior to April 3, I had not had an IVIG for 2 months…switching insurance to
      another plan and waiting a month for the start date. Previously, I was only
      on the IVIG once a month, 100g. Never had to be admitted to the hospital
      during the last 10 years of having CIDP.

      So, today I told the dr. that I am almost done with the weaning of the nasty
      prednisone and stopped totally the cellcept. There had to be a connection
      with the hospital trips roughly 2 weeks apart, and the meds. Well, he got
      really agitated and said it could take months to find the “right” cocktail mix
      of the meds. I told him that I don’t want to suppress my system. I was
      reading alot of immunology reports and told him that I had alot of questions.
      He wasn’t interested in answering. He wrote a script for IVIG every 2 weeks
      until Dec. 2007. I think I should stay only on the IVIG…and dump him in Nov.
      What do you all think? I can’t afford to be in/out of the hospital this much.
      Did I do the right thing…or should I have stayed on the meds? MIAMI GIRL
      Sorry this is so long….:confused:

    • Anonymous
      August 8, 2007 at 5:42 pm

      Finding the right doctor for us, can be a long process. To me there are only so many things they can do for us, and finding a doctor willing to try different things on stubborn cases is about all you can ask. There are no magic doctors, only ones that listen and really care if you are suffering.

      So in my opinion, if you feel you could do better doctor wise, then you should try. Do not give up!

    • Anonymous
      August 8, 2007 at 6:27 pm

      Hi John

      I’ve never been in pain with CIDP, just weak before my next infusion…then, I
      am fine.

      It just seemed to me, that the dr. was miffed that I wouldn’t continue his
      planned course of meds. I told him the IVIG worked fine before, it was me
      that went to him b/c of the cost of the IVIG. Being on his meds set me back,
      the hospital bills are enormous…yes, I have insurance, but my point is, that
      no one should keep going back to the ER every two weeks. Why should I
      have to wait for his “perfect cocktail” to come into fruition, meanwhile, going
      back to the ER…he hasn’t changed the meds since I’ve known him. Yet,
      today, he dismissed me in a bad way…make an appointment for 3 months
      from now.

      Obviously, his meds cost my insurance mega bucks…so I’m really, really, sad
      that he won’t understand that my body doesn’t want the pills.

      Miami Girl

    • Anonymous
      August 8, 2007 at 7:22 pm

      there are many doctors and many theorys on how to treat CIDP. Lucky you no pain I am in severe pain alot of the time and nothing helps But rest ….. good luck and keep in mind its your body and you know what works. and there are other doctors out there that can help

    • Anonymous
      August 8, 2007 at 10:15 pm

      Just a suggestion – I don’t really know if it is helpful to you or not. It seems from reading your past posts, you do not have a lot of sensory nerve damage, but more damage to the motor nerves. Many of the medical articles on cidp indicate that steriods are much more effective on sensory type damage and less so on motor damage – for purely motor neuropathies, steriods are not advised. I am not a doctor, and would encourage you to find out from your past emg or other medical notes what type of damage you have – then you and your neuro can find the most effective treatment plan.

      The hardest part may be determing if your doctor is listening to your concerns and cares enough to give you the attention you need. Use these next few months to evaluate your relationship with your doctor while you have the ivig available. Cidp is a long journey and having a doctor that you feel comfortable with can make it much easier to navigate.

      best wishes,

    • Anonymous
      August 9, 2007 at 12:23 am

      I was on steroid infusions weekly for 21 months mostly for strength, so I don’t think that they are mostly for sensory. But I do believe they helped with that as well. I do think that because of the prohibitive cost of IVIG many neuros are turning to steroids more & more. I know my neuro is, & he is considered one of the best in the world. But from my own experience (IVIG & PP didn’t work for me), I think IVIG is still the best treatment available for CIDP. You are lucky that it works for you so well, & I think you should stay on it. Heck with the insurance companies, let them have this illness for just one month, all of them.

      I needed the steroids at that time, but I have paid dearly for being on them. Three years ago I had cataract surgery on both eyes (at age 51?), still have terrible looking scars all over my body from a rash, am still trying to take off the rest of the 80# gained while on them, the bones in my feet break sooo easily, etc. It is so easy to prescribe these drugs in large quantities, but would they do this to a family member. I think not; I think they would order the IVIG for them. Find a new neurologist!

    • Anonymous
      August 9, 2007 at 12:53 am

      Hello again CD

      Yes, you are correct, it is motor functioning that seems to be the issue at
      stake here. You really found out that steroids aren’t beneficial to my type of
      CIDP? Wonderful…I’m so glad to hear that.

      While in the hospital, I met in rehab, one of the dtr’s patients…he had GBS
      and was paralized for weeks, rehab’d, walks with AFO’s and works as a bank
      officer…he was on less predinsone and cellcept than I was, yet we both had
      different variants…the dtr. has other GBS patients, but I’m not GBS and it
      would seem unlikely that the same meds would work for both of us. The man
      I met, rebounded nicely, where in my case of CIDP, I relapse…so, I’m sort of
      wondering if the dtr. is prescribing me the same meds b/c both diseases are
      similar to some extent.

      I’m upset b/c the dtr. was agitated at me, but, you know what…something
      is really wrong to be in ER’s that much, so close together with the common
      denominator being the two pill scripts. Then, he said CIDP always has
      some other problem associated with it…I read this as well in some of the
      immunology articles…i.e. diabetic CIDP, or other issues with CIDP. So, why
      doesn’t he do something else to find out?

      This dtr. also wanted me to come to his office to do the IVIG…my insurance
      does home health, cheaper. He said I would have to do it at his office…a
      nurse of my home health company said that he would be able to get more
      back from the insurance company, by coding it as an official visit medically

      I came home…fell asleep for a couple of hours exhausted from this visit. I
      feel all alone now, without medical support. My first neuro, who is not on
      this insurance, first discovered and verified my disease…I have to wait until
      Nov. to be able to change policies. The second neuro, as well as the first,
      both said to get off immunosupressants…they did not like them…this dtr.
      today was p.o.’d that I told him that they had said that. The second neuro
      is part of a large group in Fla., that the third neuro belongs to. A neuro
      that works with the third neuro, was the one who came to the hospital the
      third time I was admitted and told me to stop using the cellcept…so with
      whom do I listen to?

      Who is correct in their knowledge…I am so sick of this, I could vomit. I’m so
      tired of all this guinea pig testing, concepts, probabilities, possibilities…does
      anyone know anything?

      I’m venting, sorry…it’s just so maddening when you go see the dtr and he
      talks over you, doesn’t let you finish your questions and then stands up to
      leave, in less than 15 minutes…then writes a script for you to see another
      neuro, his friend, for a second opinion…

      Life isn’t that hard…

      Miami Girl 🙁

    • Anonymous
      August 9, 2007 at 1:04 am

      Pam, hello…

      I crossed posts with you…lol. That is really tragic what the steroids did to
      you, the eyes, rash, and your bones. I read recently that Imuran and another
      medication used alot by people on the boards, are at risk because they shut
      down the bone marrow plasma, which leads to osteoporisis.

      The IVIG is doing wonders for me. I read about 4 subclasses of IgG that are
      different and require different treatments…these are deficiencies that we
      have due to this disease…you could have two deficiencies that require a
      different medication combo.

      On prednisone, I was starting to get the fat face, even a little dark hair
      on my upper lip, which is now going away…on cellcept, I was getting some
      double vision…steroids are awful.

      I’m just so tired of this run around…each dtr thinking the others are quacks.

      Miami Girl

    • Anonymous
      August 9, 2007 at 12:42 pm

      Miami girl,
      I too have CIDP with mainly weakness, hardly any pain, and I am only being treated with IVIG. My neuro expressly said she didn’t want to use steroids because of the long-term side effects. Immunosuppressants are kind of a last resort because of all the problems they create for your system. If the IVIG works, keep it up! Cost should not be the issue when it comes to quality of life!!

      Hope you find a new neuro that you like. In the meantime, be glad he prescribed the IVIG and stay off everything else unless you really need it (IMHO ;)).


    • Anonymous
      August 9, 2007 at 12:55 pm

      Miami Girl,
      I agree that steroids are not a great idea and that IVIG is better. My neuro avoided the steroids and would be using IVIG if I could tolerate it. I also think that if you are not happy with your relationship with this guy, get a new one. One that has no associations with him. Trust yourself. You know what you need. And if you need guidence you should have a dr. you feel confident with. I say that the minute a dr. shows irritation he isn’t right for me. Rest, meditate on it and then take action. You have to recover first from the appointment in order to make any decisions.

    • Anonymous
      August 9, 2007 at 3:57 pm

      Caryn and Linda

      I think that you both might be correct…staying off the steroids and going
      back to my original dtr. with whom I had the best relationship with. I had
      to switch to another insurance carrier inorder to see the immunosuppressant
      dtr., but being on a medicare HMO, I have to wait until Nov., when they
      allow you to switch.

      It would be nice, if dtrs. would put some faith in their patients, this time of
      internet access, that maybe, they stay afloat on their disease and know a
      little about it as well…

      Miami Girl

    • Anonymous
      August 9, 2007 at 10:00 pm

      [QUOTE=Miami Girl]

      I’m upset b/c the dtr. was agitated at me,. . . .
      This dtr. also wanted me to come to his office to do the IVIG…my insurance
      does home health, cheaper. He said I would have to do it at his office…


      Wow – after reading your response, I was angry. I had gently suggested you look for another neuro if you felt uncomfortable with him in my last post. Now , I’d get the heck out of there (if this were me in your situation). It sounds to me like he is practicing the business of medicine more than the healing art of medicine. (would he kick you to the curb if you had no insurance?) If he had developed a relationship of trust with his patients (you), then he would not have to insist on having the infusions done at his office – patients would beg for him to do it there.

      There is a huge difference between trusting someone to fix your car, and trusting someone to fix your body! Hmmmmmm, mabe he should have been a “I’ll-only-fix-your-car-if-you-buy-the-parts-from-me-mechanic”.

      [QUOTE=Miami Girl]

      While in the hospital, I met in rehab, one of the dtr’s patients…he had GBS
      and was paralized for weeks,…he was on less predinsone and cellcept …the dtr. has other GBS patients,

      I know nothing about cellcept, but I thought prednisone was NOT advised for GBS. Also, gbs and cidp are no longer considered variants of the same illness – but they used to be. I think some doctors still think of them as the same – our first neuro has never acknowledged cidp – only gbs, and that it doesn’t relapse.

      [QUOTE=Miami Girl]
      It would be nice, if dtrs. would put some faith in their patients, this time of
      internet access, that maybe, they stay afloat on their disease and know a
      little about it as well…


      I have always wondered about this – after all, we now live in the “information age”. Before cidp, I had always assumed doctors had resources to collaborate and share knowledge, experiences, etc. Isn’t that how learning (at least in the past) occured among professionals? I can understand that not many doctors have experience with gbs/cidp. It is difficult in so many cases to get an accurate diagnosis, and even more difficult to discover the underlying cause. For those who continue treating a patient for months, I think they should take the time to research it, or help the patient find someone who can. Unfortunately, this question was partially answered by Dr. Shawn when she commented on the reality that doctors are paid on how many patients they can see, not on how much knowledge they have.

      I hope your transition back to ivig is a smooth one. It may be the best way of maintaing your “normal”.

      best wishes,

    • Anonymous
      August 10, 2007 at 12:45 am

      Hi CD

      Yes, I’m having the infusions done at home, not his office. In fact, I might
      not see him ever again…three months allows me to see if my first neuro has
      an insurance that I might want.

      This last neuro hob-knobs with our Govenor, he was instrumental in getting a
      medical school for a college…but, that does nothing for the patients. My
      thought is that he has GBS patients, but no CIDP patients…so, of course I
      shouldn’t be on the same prescription. The gentleman I met, told me he was
      on prednisone. He started at 100mg. and now he is down to 30mg.

      It just seems so silly for a dtr. to ignore viable questions that we have
      about our health.

      So, you are saying we aren’t a variant of GBS? How do we fit in?

      Miami Girl

    • Anonymous
      August 10, 2007 at 11:43 pm

      I have found when I may anticipate a problem with the doctor-take a friend along as an advocate/second set of ears.My friend’s husband could be quite daunting and the doctors took a step back when he was sitting next to me with his briefcase in hand.He was always very business-like but polite. Something about a man to man thing. The doctors decided to bring their nurse in too so it became more like a meeting with real agenda.
      More than once I told the friend that it was the first time the doctor had really been listening/pleasant to me.
      Find a doctor who is experienced with CIDP. Miami should have a large selection. If not go for a consultation at a teaching hospital where staff has treated many CIDP folks.Having a consult with a doctor in the same practice as the first is not really valid.
      It took me a long time to realize I deserved good treatment-wether in a store or in a M.D.’s office. We can take our business elsewhere. It is a business. Being polite and listening is part of the job.
      When I’ve showed my neuro notes from recent medical articles he was interested or had already read them.
      I started home health IVIG 3 months ago after passing out driving home from the clinic.I drove for 2 years and I couldn’t any longer. I didn’t sleep for the 3 day/72 hours IVIG marathon and the whole thing drained me. Now the nurses show up, hook me up and I go back to MY bed. When the nurses leave I”m HOME. Plus the infusions go much faster-I’m done 2-4 hours quicker.

    • Anonymous
      August 11, 2007 at 12:09 am

      Hi Limekat

      The reason I went to the neuro from the same place (company) was that
      the dtr. had my 10 year file. Somehow most of the dtrs. here belong to
      the same group, even in different cities. This particular neuro used to be
      in a different group.

      I know what you mean about being home for the infusion. You said the nurse
      stays with you? Mine hook me up and then leave for other patients, then
      call when I’m almost done to let me know that she is on her way to unhook
      me and flush.

      Miami Girl

    • Anonymous
      August 12, 2007 at 12:37 am

      Really-the nurse leaves?? I’ve been told about the sudden shock from the IVIG and there is an emergency kit here for injection. At the clinic when I went several folks left by ambulance to the nearby hospital because of some complications.I get nauseous, dizzy and so tired I may fall-so I gotta have a nurse here.My neuro won’t do it any other way.
      I only know of one person in my city (she’s a nurse herself) who stays alone and then unhooks herself. She doesn’t have a port-just IV in hand.Most folks on this FORUM have nurses in constant attendance for home IVIG.
      The pumps from the home health infusion company act up so much it would be a miracle if infusion at home went smoothly.I’d say one fourth the time it’s been done by “gravity drip” as pump died.

      The two major hospitals own half the medical practices here. Big business/combined billing/sharing med records.

      When I lived in South Miami it was down the street from the old Parrot Jungle near Kendall/60th Avenue and 112th Street. My dad lived by Dadeland Mall.

    • Anonymous
      August 12, 2007 at 3:25 pm

      Hi Limekat

      Wow, you lived here…I live in West Kendall. The Parrot Jungle was moved
      some time back, to Miami Beach, at Watson Island. I used to live near the
      Dadeland Mall…it is surrounded now by expensive condo’s.

      Yes, ever since I started to do the IV at home. the nurse left. They visit the
      other patients they have with various needs. In the beginning, I would get
      the bubbles accummulating in the tube and the alarm would sound, so I had
      to undo the tubing from the pump and tap them back into the bag. With the
      portable pump, I don’t have that problem. They pre-program the volume and
      drips at the pharmacy. The only issue now, is that they program 1000cc of
      the medicine, when the bag is over that amount. I figured out how to re-set
      the pump so that I get all of the medicine. They have a universal code in
      home health agencies.
      I would feel funny having a nurse stay all day. Nothing has happened, but I
      do have a number to call if something would happen. Most of the time, I do
      sleep and/or tinkle the whole time…lol.

      Miami Girl

    • Anonymous
      August 12, 2007 at 9:51 pm

      First off, IVIG? An INFUSION NURSE should NEVER EVER LEAVE during the entire time you are being ‘pumped’. IF/should a nurse do so…call your insurance company, the state health board regarding blood products and then your neuro-the one prescribing the administration of IVIG…DO NOT call the home nursing agency in this all…It has to be a ‘neutral evaluation’ and not directly from you.
      Tho I agree that Home infusion is far easier -after, in the driving home part…The nurse HAS TO BY LAW be there during the whole process. I will bet you BIG bucks that your insurance co is BILLED for a whole INFUSION Time nurse time?
      Taking a friend along as an extra set of ‘ears’ does seem to keep docs, especially neuros on a higher alert state in terms of really ‘listening’ to you. Tho if the doc talks to your ‘ears’, and not YOU that’s a sign of a very lazy or insecure doc..in my feelings.
      Since you have gone to this doc for more than a while…the one thing I find that keeps them on their TOES is to regularly [yearly or 2x’ s a year] get copies of your files to date]…It might cost you..from my own neuro IT doesn’t, tho from my GP it’s $2. a page…go figger. That way, you get tests, and other reports copies to sift thru and see what all is ‘hilited’ as problems from all your different past tests…who knows? YOU who have an interest in all things about YOU mite actually find real points of concern [to you] that could help in your treatment… Don’t forget docs, don’t catch everything? SOOO….. Take all those tests, and results and go get a second opinion.. It’s really cheap, but don’t go w/another doc from that particular practice. I’d find the biggest best teaching hospital as near as you can find and go there….That sort of peer pressure could help your ‘current’ doc actually test and treat you. Depends on how far you’d have to go…If it’s a hundred miles…well If testing and all couldn’t be done at home, plan a week or a couple of days at first and then a few more at a later date…coordinating this stuff can be a pain…of effort. but usually well worth it in the long run.
      I mean, it’s that or a cattle-prod to get things moving? The first plan is far easier in the long run…Hope this helps.

    • Anonymous
      August 12, 2007 at 11:05 pm

      As was said in an earlier post, it is extremely illegal for that nurse to leave during an infusion like that. Not only could you have a nasty reaction out of the blue, but it is against the law in most states. Not only from a billing standpoint, but also in regards to the nurses license. Please check on this Miami girl and make sure everything is on the “up and up”. And, as was also said earlier, don’t call the home health company directly. Call the state health board and they can tell you what the regulations are. I would call your insurance company to find out how the time is being billed and find the name of another home health agency if needed. You are your best advocate!

    • Anonymous
      August 12, 2007 at 11:18 pm

      Hi Homeagain

      Yes, my nurse does leave…this is the second company that I have used for
      home health and the nurses both have left from each company. No, they do
      not bill for the whole day…only for the time spent…to hook up and then to
      take out the port needle. I’m not versed on the protocal of nursing, but two
      different companies have done this. Either it isn’t required here in Florida, or
      if you have had it done in the past, they might feel you aren’t at risk…I do,
      however, feel, that no nurse would jeopardize her/his job if it wasn’t legal.
      I do sign a time sheet when they come and go, with the time filled in by the
      nurse, before my eyes.

      I am going back to my original neuro at Jackson Memorial Hospital, in Nov.
      sometime, when I can switch insurance plans…he’s the assistant professor
      of neurology there. I only left him because I was interested in a cheaper
      pill form to stop the attacks of CIDP…which actually cost more by being in
      the hospital three times, two weeks apart each time. Now, I know that I’d
      rather have an immodulator (IVIG), than immunosuppressants, that shut my
      system down…the IVIG balances my immune system antibodies. It won’t
      stop a progression, but it will fight it.

      Miami Girl

    • Anonymous
      August 12, 2007 at 11:38 pm

      IVIG vs other options…I am with you 100%. no and’s, if’s, or but’s! It’s a scarey enuf decision and thus COMMITMENT without guarantees for the future not to mention PROPER TREATMENTS?
      However, in the case of you being ‘left unattended’ during infusions? It should be a matter that you first ask your prescribing neuro about…after all…should anything happen…IT”S HIS NAME ON THE SCRIPT…therefore HE/SHE should be ‘montoring’ it all..getting ‘proper notes’ and all. Second, call the drug manufacturer? They too have a very, VERY vested interest in being sure their PRODUCT is delivered properly. I’d an experience w/a reaction…at a HOSPITAL where I’d been substituted and administered a brand different from prescribed IVIG brand…There are federal laws about notifying not only the docs but the patients about ‘changes/substitutions.
      I not only called the doc, I called the mfr., I called the State medical Board, I called the FDA and well, by golly….staff got NEW training about infusion ‘reactions’. For two to three days? I even got a ‘supposed’ fee abatement [all fiction] but that that was DONE was satisfying in that I probably had one of those really bad reactions that no one wants to admit having. The updated training saved a few lives from misery tho…according to hints the hospital nurses gave me afterwards…I opted for home because I was having to wait 3-5 hours for the ‘medication’ to be mixed….I got there at 6AM and got out at 3-4pm IF I was lucky…that’s a silly, unnecessary wait.
      WE have to know the proper procedures to ensure OUR own safety. Some manufacturers provide ‘kits’ that include ‘record books’ and videos… You should NOT be left alone during an infusion AT ANY TIME! But, Let the Docs, the state boards, the FDA wrestle with it all…You are merely the patient? You should not be caught in the middle of this tussle…Let the doc preserve his reputation,…or not? Since one can’t convey useful web sites directly, please PM me for all the good sources. I’ll be more than glad to share..

    • Anonymous
      August 12, 2007 at 11:56 pm

      I’m glad to hear that the IVIG works for you. It must be legal in Florida. I can’t imagine that a nurse would knowingly put her/his license on the line either. I’m in Texas, and the administration of blood products, IVIG, and things like that require that an RN be there. The whole time. I hope you get back to the Neuro Dr. of your choice soon! Take care.

    • Anonymous
      August 13, 2007 at 12:14 am

      Hi Homeagain & One Lucky Girl

      Yes, it must be legal here. I do get a call from the pharmacy that provides
      the IVIG, if there is a recall, but they usually have the same brand, if not,
      they will buy it from another – so I haven’t had a problem with it.

      Yes, the reason I stopped going to outpatient, was the long wait for the
      mixing of the product. “It’s so expensive, the hospital needs to know that
      you are here, because it is only good for 24 hours”. So, I was able to get
      the head nurse to order it when I was ready to leave my home. Then, I
      got tired of dragging that Baxter pump with 5 legs down the hall to the
      bathroom…every half hour…lol. So, when I found out I could do it at home,
      well, what a relief.

      The neuro who issued the script, is the one I don’t want to deal with…I said
      no to his pills and he said, “See you in 3 months”. He’ll be waiting, and wait-
      ing, and waiting…lol.

      Miami Girl

    • Anonymous
      August 20, 2007 at 2:15 am

      Hi Miami Girl,
      Yes, my nurses say okay once the IVIG starts I’m your shadow when I started home health. It was strange at first to have them here but it’s the same 3 and they do their own thing.The IVIG is already mixed, just me as the patient and the drip can be faster. I finish so much earlier. I used to “run away” from the clinic and head up the street on side walks as I was so bored and the day was just too nice to be in a recliner. Dragging my cart wearing sunglasses. I still after 140 infusions have reactions.
      Florida is definitely different.Been up in NC for too long.As kids we’d ride our bikes to the Parrot Jungle. I knew it had moved-primo land for houses had to eventually do that. I went to Palmetto High School.

    • Anonymous
      August 20, 2007 at 1:16 pm


      I am so sorry about your father passing…my sympathies to you and your
      family. I love Baptist Hospital…really good for their doctors.

      I went to Palmetto Senior High as well…so did my sister. My best friend
      lives in Kennersville up there. Sounds like we have alot in common.

      Miami Girl