May 12, 2017 at 10:59 pm
As I read your description, it seems that you did not fail two drugs. You said IVIg keeps things in check, which would generally be called a success. As it is working, you probably are suffering very little axon damage, and the damage to the myelin is likely minimal too. Yes, it is a drag to be on IVIg, but at least it works. You seem to be concerned about having to use assistance; I am too. Are you noticing increasing deficits at the end of your cycle? If so, then you might consider IVIg either more often or in a bigger dose. Yes, it’s even more of a drag, but more IVIg might prevent any significant decline.
Be that as it may, another reason to consider delaying HSCT is to allow for refinement in the technique. I was reading the other day of a man with MS in the UK who did HSCT. His disease progression was severe and nothing was helping. That is why he did HSCT. It worked miraculously for him. However, after 5 1/2 years, his symptoms came back and are now pretty bad. Did it give him 5 good years, essentially resetting the clock? Yes, it did. But, given the damage done by the chemotherapy, it is doubtful is he can ever do HSCT again. So unless some new MS come along, he will only get worse. If your CIDP is reasonably well controlled, it might be a good idea to wait a few years for the process to get better.
If your doctor is working with Northwestern and is advising against it, my guess is that you would not meet the acceptance criterion.
I know I have been pretty negative about HSCT in the post. In general, I think it is a great idea, but it is still a more a last-resort option than a go-to one. Still, you know you best, so if you see thing that convince you that IVIg is not effective, go for it.
Godspeed in your decision,
MarkEnsMay 6, 2017 at 9:52 pm
No, I did not follow any specific diet. My diet would not be one that any doctor would characterize as unusually healthy.
~Mark EnsOctober 2, 2016 at 9:17 pm
First, please note that none of us here (well, maybe one or two) are doctors, so what we tell you is just from what we have read and from our own experience. Take what we say with a grain of salt.
Second, GBS and CIDP have definitions for their onsets. If your symptoms started in August, but then remitted, and now are back, it fits the definition of CIDP. However, I personally would not rule out GBS, as your symptoms seem to have come on faster than typical for CIDP. If the EMG suggest demyelination, I would not worry too much about if the cause is GBS or CIDP, I would get started on a treatment of IVIg or plasmapheresis as soon as possible.
Godspeed in finding a treatment and a diagnosis.
~MarkEnsOctober 2, 2016 at 9:01 pm
As a fellow CIDP sufferer, I had very minor face cramping and occasional difficulty with my eyes and slurring of my speech. The symptoms were always mild, so I never made much of a fuss about them. I did occasionally mention them to my neurologist, who would brush them off. I have a great deal of respect for him, so I took his “brush-off” to mean that they indeed unusual symptoms. I am confident that if they were more of a problem, he would have take them more seriously.
There are 13 cranial nerves. The terminal, olfactory, and optic nerves are considered part of the central nervous system. The other ten are considered peripheral nerves. So, while unusual (even in an unusual disease), CIDP can affect them as well. Indeed, several years ago there was a young girl with CIDP whose first sign of relapse was problems with controlling one of her eyes.
Of course, your symptoms could also have a CNS cause, just as MS patients have peripheral pain, even though there is nothing wrong with the peripheral nerves. Unfortunately, there is no good way to test these nerves. Think about trying to do an NCV test on your head. Uhh; it is bad enough on the arms and legs. A biopsy is pretty much out too. That leaves just symptom response to treatment. You might need to keep a diary of symptoms and treatments. Be objective in the symptom report, because the treatments may not work right away.
Godspeed in getting a treatment that works.
~MarkEnsApril 8, 2016 at 12:17 am
A final update is in order. After five years of remission, my status is now happily that of cured. I would not have thought it possible when first diagnosed. Nor would I have made the attempt to find out without the work of the Foundation.
If you find that your symptoms have been stable for a while, it is certainly worth discussing with your neurologist about tapering or stopping treatment. You may find that remission and cure is possible, but you will never know until you try.
~MarkEnsMay 2, 2015 at 12:16 am
I trust by now you have a treatment regimen established and have seen improvement. You and your wife are the best judges of if you still have the hands you need to be a concert pianist. God knows the world does not need to lose any, so I hope you can continue. If you find, unhappily, that your skills are what they need to be, consider Leon Fleisher. He taught well and widely, even though he could not play with both hands. Like him, perhaps you may not be able to demonstrate the fastest trills or bring out the inner lines as well as you might like, but you can still teach others the music behind the technique. If you have seen improvement, you might improve even more over the next year or two. Even if you can’t play as well as you would like now, there is still hope that you can eventually.
Godspeed in your improvement,
~MarkEns (a classical music lover)May 1, 2015 at 11:53 pm
Kelly and Emily,
Thanks for sharing your wonderful success. I’m sure, Kelly, that lifting the burden the syndrome brings to the whole family is something that you only dreamed of, and now your dream is real. Emily, as someone who also has been able to go off treatment, isn’t it great to be free of all of the daily hassle—you know, like a cloud of gnats flying around—the syndrome brings? Which of course pales in comparison to being free of infusions, and blood tests, and wondering how you were going to get your homework (in my case, my job) done (and not even caring sometimes, which is scarier still). Which pales in comparison to just knowing that, at least for now, you can be the best you can be at anything you want, rather than held back by some dumb syndrome.
One simple request. Would you please cross-post your message into the Success Stories Forum.
~MarkEnsMay 1, 2015 at 11:37 pm
An update is in order, but it can be much shorter than my first post. I am still in remission, after four full years without treatment. Residuals remain, at about the level described above, but otherwise things are fine. I have just one more year to go until we can call me cured.
~MarkEnsMay 1, 2015 at 11:28 pm
I am sorry that I did not see your post earlier. It is likely the infusion rate was too high. The rate is a rather individual thing. I know people who can tolerate 250 ml/hr and others who struggle with 75 ml/hr. I tried one time to rush things at 200 ml/hr. I got a nasty headache during the infusion. Next time, have your maximum rate be 100 ml/hr and see how you do. The Tylenol and Benadryl are good ideas, but make sure that you are well hydrated. And not during the day of the infusion, but a day or two before, during, and for a day or two after.
Godspeed with the next treatment,
MarkEnsMay 1, 2015 at 11:16 pm
I remember you from 10 years ago, when I just got started down this road. I’m sorry you had to come back. I have never had an EMG, just an NCV. NCV is like getting shocked, pretty harshly at times. Well, not like, that is exactly what happens. It is painful when the shock happens, but otherwise it is easy. I never felt like I needed any significant recovery time. If you have a mouthpiece for sports or something similar, take it along. It is safer than a lead bullet 🙂
MarkEnsJuly 27, 2014 at 10:25 pm
As has been pointed out, there is considerable variability in the disease course, the effect of treatment, and the work you already do. My CIDP was not particularly severe and my employer was accommodating, so the missed days were handled as regular sick days or I made up the work some other day. Once the treatment regime was stable, I worked full time and still do. My job is a lab job, so I don’t have to have great stamina or strength. If I had been a professional musician, I might well have had to give that up for another music job, at least for a couple of years.
As for treatment, get your diagnosis confirmed and then get treated. There is evidence that the long you go without treatment, the worse your long-term outcome will be. There are side effects to the treatments, to be sure, but unless your case is very mild, I suspect the side effects are better than the disease.
~MarkEnsMarch 17, 2013 at 10:38 pm
I am sorry that your son has acquired CIDP. I hope his IVIg treatments will bring him back to normal function.
There are no studies that I know of linking CIDP to chemical exposure. Is it possible that these chemicals caused CIDP? Perhaps; he may be unusually sensitive to them and the sensitivity expressed itself as CIDP. Proving it, however, would be much harder. There just aren’t enough of us (a good thing, really) to allow for the appropriate statistical analysis. There are between 3,300 and 30,000 people in the USA with CIDP; the number depends on which prevalence study you believe. There are about 750,000 people in plastic products manufacturing and another 750,000 in the chemical manufacturing sector. That means between 14 and 130 people who work in those areas likely would have developed the disease anyway. It would take a larger sample, I think (I am not an epidemiologist, so I don’t know how much larger) to establish a statistically valid measure.
~MarkEnsFebruary 22, 2013 at 6:54 am
The symptoms you experienced from IVIg are not uncommon. Most people get a headache. Many people have some sort of allergic reaction. A slower infusion rate and Benadryl and Tylenol (or their equivalents) helps to moderate the symptoms. If nausea is severe, Zofran could be prescribed.
Find out what the fastest rate you had during your last infusion. If you get IVIg again, insist that they do not infuse you at more than 2/3 the fastest rate. See if your symptoms improve. If they do, then you can try a somewhat higher rate. If not, then try a slower rate. There is a practical limit to how slow the infusion can be; the nurses have to go home eventually. If a very slow rate still leaves you with symptoms, you will have to decide if their negatives outweigh the benefits.
~MarkEnsFebruary 22, 2013 at 6:45 am
I guess I should read all of the fora and then answer. I already sent you a reply in the CIDP forum, but let me address some of your prednisone side effect concerns here.
Administration — there are several ways to take prednisone to treat CIDP. One is a pulsed method, in which you take a huge dose once a week. There is some evidence this might be the best route for CIDP, but it is by no means conclusive. Another is every-other-day dosing. The idea here is that the adrenal glands have a chance to recover and there modulate some of the side effects. The last is the standard, once-a-day dose. When I did the pulse method, I took the dose Friday evening. Miraculously, I was able to sleep through the night. I was an especially unpleasant person on Saturday, so I kept to myself. I was more tolerable by Sunday morning. Generally, though, predisone should be taken as a single dose first thing in the morning.
The most severe side effects you can do something about medicinally:
Stomach upset — have your doctor prescribe Pepcid
Bone loss — have your doctor prescribe Fosamax or similar, along with calcium with vitamin D. Have a bone density scan done yearly
Blood sugar — have your doctor prescribe a blood glucose meter, test strips, and lancets and then check your blood sugar daily. Keep track of it so that you know if it is starting to increase significantly. If it does, get with your primary care physician to devise a treatment strategy.
The most severe side effects you can monitor:
See an ophthalmologist every six month to monitor for glaucoma and cataracts. The glaucoma might be treatable. The cataracts may form and you may therefore have to have cataract surgery.
See an dermatologist every two years to monitor for skin cancers
See your primary care physician every six months and follow his/her recommendations for other referrals. Have him/her be especially watchful for cancer and other effects from immunosuppression.
The most severe side effects others can help you with:
Weight gain — have others help you avoid fattening foods or too much food. You may feel hungry all the time. Having others help you with the cravings will limit your calories, reducing or eliminating the weight gain.
Mood swings — warn those around you that you could suffer severe mood swings. Let them know that it is not personal, that the drug you are taking makes you slightly crazy. Some people will be understanding, others won’t. Just do the best you can.
~MarkEnsFebruary 22, 2013 at 6:21 am
I believe it is possible to have a very mild CIDP for years before a major episode of symptoms. For at least 8 years before my major episode, I had trouble getting up from a crouched position. I thought at the time that it was just age, fat, and deconditioning. It may have been partly that, but I now think it was a low-level CIDP. My major episode was not as bad as many that you will read about here, but without treatment, it would have been much worse.
As to treatment, as I said in another post, IVIg is the standard treatment, so your insurance company should cover it. However, any treatment that works is better than none at all. If you are in fact stable, you might be able to wait a bit. Make sure you are not getting worse, though. Keep a diary of symptoms and review it every few days. If you find things are worse this week than last and have not resolved the problem with insurance coverage for IVIg, I would recommend starting prednisone. Yes, the side effects can be severe. However, by not arresting the inflammation and demyelination, you leave your nerves more susceptible to damage to the axons.
As for stress, people react to it very differently. Many people here have seen a correlation, sometime a very strong one, with stress and severity of symptoms. My major episode was unrelated to stress. Once I was treated, I had very rapid improvement, returning to acceptable, if not full, function within days.
I was not physically active before my major episode, so I don’t have the benchmark you have. I was left with some weakness, such that it is awkward for me to get down to the floor or up from it. I have some minor pains and other deficits. But that is OK, because I can do nearly everything I want to do. I am content to be where I am now.
Godspeed in finding your treatment soon,