April 4, 2013 at 9:59 pm
Get your mother a new doctor!!! Obviously she is one of the people who should not be on prednisone. Is there some reason your mother is not getting IVIG?
I wouldn’t have thought prednisone causes the blisters. Has the medical team considered an additional diagnosis such as lymphoedema (sp?).
I will keep your mother in my prayers,
FlossieFebruary 21, 2013 at 3:57 pm
Prednisone was a magic pill for me when I first started taking it. My foot drop and extreme weakness were gone within weeks. I went several years using only prednisone before I needed IVIG.
Prednisone does have the possibility of many side effects. However that does not mean you will get all or even any of them. I did get the extreme mood swings but they settled down after my body got used to the steroids. I would much rather be in tears than in a wheelchair.
If you are aware of the possible side effects and keep watch for them then prednisone could be a useful drug for you.
Good luck with your treatment,
FlossieMay 3, 2011 at 4:28 pm
I am a HUGE believer in vitamin supplements to help you feel as good as possible. However, you need to research your supplements and check with your doctor and/or pharmacist to be certain you are not taking anything that will hinder your recovery.
Mannatech products come up on this forum every couple of years. Apparently there are many people who think these products help them. However, this article – [url]http://glycob.oxfordjournals.org/content/18/9/652.full[/url] – casts doubt on the science behind Mannatech’s claims. Just because they are nice people making sincere anecdotal claims does not mean there is repeatable, verifiable science involved. At worst they are scam artists with a pyramid scheme out to profit from your illness.
I personally use this multi vitamin pill – [url]http://www.vitacost.com/NSI-Synergy-Once-Daily-Multi-Vitamin[/url] – because the one pill has almost all of the antioxidants and supplements I was taking in 10 pills a day for the last 10 years. I also take fish oil pills and extra calcium supplements. (I do not have anything to do with the Vitacost folks other than being a satified customer.)
The most important things you need for your CIDP are adequate rest and a healthy diet. Before you spend a lot of money on supplements do your own research and/or discuss an appropriate nutritional supplement program with a pharmacist or doctor. My own neurologist said I could take my vitamin plan “if it makes you feel better”. On the other hand, our family doctor regularly recommends supplements to my husband and myself based on blood tests from our check ups.
It’s your health. You owe it to yourself to make educated decisions.
FlossieApril 20, 2011 at 4:40 pm
I do not believe there is an adequate substitute for prescription drug treatment of CIDP and pain. However, I am a HUGE fan of nutritional supplements to help my body heal and keep my pharmacuetical needs at a minimum. Taking just one supplement is not as good as a balanced program.
Here is another suggestion for a supplement that tremendously helped my pain – Grape Seed Extract. Start with 50 or 100mg a day and gradually increase to 200mg taken 3 times a day (600mg total in a day).
I hope this helps,
FlossieMarch 21, 2011 at 8:47 pm
I think depression is an actual part of having a disease that does goofy things to your nerves. I felt like my brain was drowning in black ink.
My neurologist prescribed nortryptalin which is an anti depressant AND a pain medication in addition to my Lyrica. It took a couple of weeks to make a difference – but now my emotions are much more even. I am still angry and unhappy to be sick but there are no more wild dips down into the ink.
Please talk to one of your medical team and see if they think an anti depressant would help you.
Take gentle care of yourself,
FlossieOctober 31, 2010 at 4:54 pm
Wow, I’m glad it is helping but that’s a lot of ALA.
I remember reading that in Europe they use 600mg a day ALA to treat diabetic pain.
I only take 100mg ALA – and now I’ve found a daily vitamin that includes my ALA as well as all the antioxidants I want. I also take 1000 mg fish oil capsules, calcium pills and glucosamine with MSM. However, my main pain pill is the Lyrica.
A healthy diet, lots of rest and medication help with CIDP symptoms. A balanced supplement plan should be a back up for traditional treatments.
FlossieSeptember 1, 2010 at 11:58 am
Prednisone does very much affect bone strength. I have been taking a “low dose” for ten years; I combat the side effects with nutritional supplements, exercise and osteoporosis medication. And I still broke my ankle just walking to the mailbox. Sigh.
Here is a terrific site about prednisone side effects AND how to control them.
FlossieAugust 28, 2010 at 8:13 pm
Thanks for the responses. It is not surprising that the PT people are unfamiliar with CIDP since even neurologists see so few of us.
The magazine I. G. Living has an article on Exercises for CIDP in the August 2010 issue. Go to IGLiving.com and sign up to read it for free. This is one of the printouts I took to be placed in my file. My therapists were glad to read something written by one of their own rather than relying on my subjective opinions.
I am being very compliant about doing my PT at home. However I am also trying to stop exercising before I push too far. There have been days when I realize I am trying too hard – I am just flattened by exhaustion. Sigh. Sometimes I think my CIDP has affected my common sense.
Throughout the past ten years I have been remarkably lucky with all my health team. I am really grateful that the PT folks have been professional and sensitive to my neuropathy. Please let me know if you have specific recommendations for physical therapists. I am being treated in a clinic that is attached to a teaching hospital so your suggestions will go to more than just my therapists.
FlossieAugust 14, 2010 at 2:28 pm
Here is the best explanation of prednisone that I have seen. There is a good section on the possible side effects and how to avoid them.
I have been taking various amounts of prednisone for ten years and have had 2 IVIG courses in the last 2 years. (I have another IVIG arranged for next week.) After much trial and error my neurologist and I found the the low dose (15mg) every other day prednisone keeps my CIDP symptoms “reasonably” in check – the IVIG is a boost for when the tremors or numbness start creeping up my limbs.
Unfortunately it takes time (and good communication with your neurologist) to experiment with the various treatment options you will need to deal with your CIDP. But remember that your life continues even while you are “sick” – save your energy for the fun stuff.
FlossieApril 8, 2010 at 5:19 pm
Thanks for writing about the weird smells. I too have had the family search the house for a non existant electrical fire.
For the last 6 months I have been constantly smelling cigarette smoke – really disgusting, even nauseating: like the bottom of an ashtray. (Why couldn’t it be BBQ?)
My family doctor said to take extra zinc and that helped for about a week. But it is back even as I type.
Sigh. This is such a bizarre disease.
FlossieFebruary 10, 2010 at 6:56 pm
Yes indeedy, I swallow a boat load of pills everyday. Right now it’s just 8 with breakfast and 1 with dinner (in addition to my prednisone, Lyrica and nortyptilin) for maintainence. I increase certain pills depending on symptoms (R-Lipoic acid for foot pain, CQ 10 for dental work, MSM for skin problems, etc). When I was really run down and symptomatic I was taking even more pills with each meal. For a while I was also taking Grape Seed Extract a couple of times a day – for me it really helped with the zingies (didn’t do a thing for Jethro). It’s important to adjust supplements periodically.
I did notify my family doctor and my neurologist of my supplements – but I am not taking a dangerous amount of anything. Also, I am not taking any herbs that might interact with my medications. In the past 2 years I have only had 2 IVIG treatments. I took a detailed list of all my supplements to the infusion center and they did not see any problems.
I did not get side effects from many of my pills. I do remember cranberry extract being tough on my tummy. If Kevie needs a huge amount of anything do be sure to increase the dosage gradually. It’s also very important that I take my pills with a meal – the few times I have tossed them down without a food buffer I was very queasy.
I assume you have confidence in the natropath. If he offers to set Kevie up with a simpler, more compact, pill program do purchase his product. It does not actually hurt to take all my pills but it is a hassle – further more, many of them are large. A compounding natural pharmacist can make a supplement regime easier by dividing supplements up through the day and eliminating the need for “filler”.
I hope this is helpful. Our own dear Doctor David considered supplements a waste of money – but I honestly feel my pills keep me operating as well as possible given the immune war going on in my body.
FlossieFebruary 10, 2010 at 5:27 pm
Alpha Lipoic Acid is a “recharger” for Vitamins C and E. If you take ALA then the E and C can do their specific tasks without having to do the ALA work as well. In Europe diabetic nerve pain is treated with 600 mg of ALA a day.
I changed over to 100 mg R-Lipoic acid because it seemed to work better for me. The R stands for “right” and just means they flipped the chemical direction to make it more bio available. I purchase my pills over the internet.
Remember that supplements should be a part of an overall health plan. Always ask your doctor before taking over the counter pills.
FlossieFebruary 10, 2010 at 5:09 pm
I went to my first neurology appointment assuming he was going to be an excellent doctor and want as much information as possible. I prepared a very detailed health history all the way back to childhood mishaps. I also provided a separate list of family illnesses. And finally I had a list of specific physical complaints. All nicely typed up and ready to go in my medical file.
I don’t know if my neurologist actually used my information when he diagnosed me. But his polite and interested attitude made me like and trust him immediately.
In following appointments I continued to take typed lists of questions and concerns to be added to my file. My neurologist would consider a complaint such as the inability to open the soda bottle and then quantify that problem using the appropriate medical exam.
I know I am extremely lucky that my family doctor was able to refer me to this wonderful specialist. However, I think all doctors should be comfortable with a well informed, organized patient.
FlossieFebruary 8, 2010 at 4:30 am
I just want to send you a gentle hug.
FlossieFebruary 8, 2010 at 4:21 am
I have been taking a mouthful of supplement pills for ages. I do not claim they are fixing my CIDP specifically but I do think they are keeping me as healthy as possible. My pill program has changed over the years as my symptoms have changed. (I have a previous post from May 20, 2006 that goes into a lot of detail.)
Currently I am taking:
1 – a high quality multi vitamin capsule
2 – a commercial antioxidant blend tablet
3 – a 330 mg calcium tablet with magnesium, phosphorus and vitamin D
4 – 2000 units more of vitamin D3 because of low D in my bloodwork
5 – a 500 mg omega 3 fish oils soft gel
6 – a 500 mg glucosamine and MSM tablet
7 – a 100 mg R-Lipoic Acid capsule (this form seems to be an improvement over ALA for me personally)
8 – a 100 mg Coenzyme Q10 soft gel
I also drink a glass of cranberry juice every day to counter act the evil side effects of prednisone.
Supplements are not substitutes for healthy eating. Please research before you start a supplement program. Just because something is natural does not mean it is safe for your particular health challenges. Try to find a “licensed natural pharmacist” to assist you.