MarkEns
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February 22, 2013 at 6:45 am
Jane12,
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.~MarkEns
February 22, 2013 at 6:21 amJane12,
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,
MarkEnsFebruary 17, 2013 at 5:41 amJane,
This link has the accepted standard of care for CIDP: http://pnsociety.com/Guidelines_CIDP.pdf. It should help in your appeal with your insurance.
If you still have to try prednisone, let me know. I used it, along with other treatments, to good effect and with good control of several of the side effects.
Godspeed in your appeal.
~MarkEnsFebruary 17, 2013 at 4:56 amHello Willem,
I used nortriptyline, similar to amitriptyline, for my neuropathic pain early on. A 50 mg dose definitely helped the pain. I experienced the usual side effects of sleepiness and feeling a bit slow mentally, but I was adjusting to them. The side effect that made me switch to gabapentin was the loss of the ability to taste “sweet”. I could still taste bitter, salt, sour, and umani, just not sweet. Note that this side effect is rare; my neurologist had never encountered it before.
If you use the two together, make sure that you have a plane to deal with more sleepiness and minor loss of mental acuity.
Godspeed in your treatment plan.
~MarkEnsFebruary 2, 2013 at 12:51 amHello Larry,
Unlike your brother, my disease course was a moderately quick decline to a point, and then a very rapid decline after that. Treatment, though, would arrest the rapid decline and promptly return me to nearly full function in a week or so. I am considerably better than I was five years ago. That I am significantly better now, though, does not mean that my treatments necessarily caused a reversal of the disease, just that they kept the effects from being more severe and long lasting. My neurologist and I believe that I suffered very little damage to the axons and nerve bodies and that my myelin, while not perfect, is in decent condition. Based on your descriptions, I think your brother may have also suffered from axonal damage. His recover will necessarily be slower, just because axons regenerate more slowly than myelin. I am afraid, therefore, that my experience and your brother’s are so different that what worked for me may not work for him. Still, nothing ventured, nothing gained.
I found PE to be very helpful, even essential, in maintaining function and almost benign in administration. I had a central venous access catheter, so the process of the PE itself was painless. It was time consuming when I was getting it several times a week, but because I had such good response, it was well worth it. Maintaining the catheter was essential, and I did so with vigilance.
Godspeed in finding an effective treatment
MarkEnsJanuary 12, 2013 at 7:15 pmCathebt,
Just as a comment, I used PE as part of a combination therapy for a bit over five years. I lost count of the number of treatments, but it was on the order of 250.
~Mark Ens
January 4, 2013 at 5:57 amsherrillyoung,
I think your doctor is taking some shortcuts in his explanations to you. Yes, there is a gap between the CNS and PNS; the communication occurs across synapses. I am not sure what he means by the inflammation slipping through, but for now, I would just let it go.
As far as IVIg being a shotgun to get rid of slugs, he needs to realize that unless you take action now, things could get worse. Of course, they might not, but it seems like you should have some sort of treatment to keep maximal function. If your clinical presentation, NCV, and CSF results are consistent with CIDP, then there is no good reason not to use one of the standard treatments now. If you can tolerate steroids, suggest to your doctor that you try them now. They are cheap and often effective and could be a good stopgap while you wait for the mitochondrial results. If they work and you have no mitochondrial disease, then you should suggest that he switch you to IVIg as steroids are not the preferred treatment. Refer him to these guidelines: http://www.pnsociety.com/Guidelines_CIDP.pdf
Godspeed in getting treatment soon.
MarkEns
January 3, 2013 at 7:02 amNanakrk,
Actually, your husband did a pretty good job of it.
I wish the forum had its search function again. There was a good illustration involving spoons that helped demonstate what it is like to live with an invisible disease. Ah, I found it. It is specifically regarding lupus, but it applies to GBS and CIDP as well. Here is a link to it: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
I hope this helps,
MarkEns
January 3, 2013 at 6:48 amsherillyoung,
I just saw this post after responding to your other. The comments will overlap some.
I can guarantee that you have mitochondria, we all do. Without them, we would die. Their function is intimately linked to the energy production in the cells. My guess, based on a general understanding, not specific knowledge, is that the neurologist is concerned that you have some mitochondrial-based neuropathy, which is a common type of mitochondrial disease. Mitochondrial disease is a bit more common than CIDP, so it is not unreasonable to suspect a mitochondrial disease. I hope you get your test results back soon.
Have you had a nerve conduction velocity (NCV) study done? This is the type of study that can help distinguish between demyelination and other types of neuropathy. I believe that it is generally considered an essential test in diagnosing CIDP, so I presume you had one. Do you know what the results showed?
Godspeed in finding a clear diagnosis,
MarkEns
January 3, 2013 at 6:29 amsherrillyoung,
I was not familiar with Endep, so I did a quick search. It is, as I am sure you know, an antidepressant. Many of these drugs are useful in treating pain symptoms, but they do nothing to help with the actual demyelination or inflammation of CIDP. Your neurologist should have started you on one of the typical treatment protocols (corticosteroids, plasma exchange, or IVIg). That he did not suggests that he does not really believe his own diagnosis. I hope your appointment with the second neurologist yielded more positive results. Do not be surprised or dismayed if he wishes to repeat several of the tests. While perhaps wasteful, sometimes the second round helps yield more definitive results.
Godspeed in getting effective treatment,
MarkEns
December 27, 2012 at 4:06 amWarning to all users:
The site linked in by ReenaDesai is almost certainly a phishing site. DO NOT CLICK ON THE LINK.
December 27, 2012 at 4:02 amsherrilyoung,
The sensations you feel in your head could be due to cranial nerve involvement. Such involvement is relatively rare, but it does happen. I know, because it happened to me. My neurologist also dismissed my concerns about it. Because the overall treatment also helped deal with it, I did not press the issue. However, if the symptoms had persisted, I would have more forcefully insisted that we consider cranial nerve involvement.
The best way to get these symptoms to resolve is to get effective treatment for your other symptoms. Has that happened yet?
Godspeed in your recovery,
MarkEnsDecember 27, 2012 at 3:51 amJay,
I sympathize with your continual tiredness and your desire to get back to normal as quickly as possible. At this point, there are only two other main lines of treatment available to you: corticosteroids or immunosuppressants. It would be best to talk with your doctor about your rate of improvement, continual fatigue, and these treatment alternatives. If s/he doesn’t address your concerns, then you should seek another opinion. I did not need the services of any of the centers of excellence, so I cannot speak about them as a patient. I can tell you from talking with doctors from several of them (Minnesota, Wayne State, Johns Hopkins, UCLA, Boston) at the Foundation’s symposia, they are knowledgeable and good places to consider. However, a large medical system in your area might have the expertise you seek, so I would start there and then go to a CoE if you do not get what you need.
Godspeed in your care,
MarkEnsJuly 24, 2012 at 4:02 amJGL,
Is there any reason your neurologist gave you for not providing more IVIg? Are there financial considerations for you (large co-pay, insufficient sick time, etc)? Do you have bad side effects (days of killer headaches, days of flu-like symptoms, renal failure)? Following a standard protocol, you would get 2 g of IVIg per kg of body weight, spread over 5 days. You would then get 1 g/kg every 3 to 4 weeks until you were stable. Then either the dose would be reduced or the time lengthened. Have you had a protocol like that? If not, encourage your doctor to try it before going to steroids. Have her read this document: http://www.pnsociety.com/Guidelines_CIDP.pdf, especially pages 225 and 226 (no, the document is not that long; it is an article in a journal). Even though I took steroids, and have no regrets about doing so, I would try to give the IVIg a better shot that it looks like you have had. If IVIg does not do the trick, I would consider plasmapheresis, then steroids.
Godspeed in your treatment,
MarkEnsJuly 23, 2012 at 4:57 amJGL,
GH is right, immunosuppressants and steroids are not mutually exclusive. As he pointed out, a usual treatment course would use steroids while waiting the for immunosuppressant to take effect (3 to 6 months for mycophenolate mofetil (CellCept) or 6 months to 1 year for azathioprine (Imuran), with the steroid taper starting sometime during the window.
As for side effects, I took both CellCept and Imuran and did not suffer noticeable side effects from either. CellCept did not seem to work for me, but it does work for many. Imuran worked for me. It might have made me somewhat anemic, but not the point where it seemed to have an effect on my daily living. If your doctor wants you to take Imuran, it would be a good idea to be very closely monitored for the first month or to have a TPMT (Thiopurine methyltransferase) test done to make sure that you can metabolize Imuran properly.
Best regards,
MarkEns
