New Kid in Town
AnonymousApril 19, 2010 at 1:23 pm
I’ll be 56 in July. I was diagnosed with CIDP last October. I was also diagnosed as B-12 deficent. Iwas taking a B-12 shot once a week until January, now once a month. I am taking 150 mg of Azathioprine a day. My condition doesn’t seemed to have changed for the better, Seems like I feel some tingling in my hands from time to time. Some days are better than ohers. I take a one mg tablet of Lorazapam a day, which seems to help with the fuzzies. I go back to Birmingham in July. Seems like I need to move to the next level of treatment. Anyone else start out this way????
Nothing about my condition has really changed in the last 6 months. I went back to UAB on Wednesday and we have decided to ask the Insurance company to approve the IVIG therapy. it will probably be a couple of weeks before we find out.
AnonymousApril 19, 2010 at 7:27 pm
Gary, I was dxed with CIDP in July of 2009 after a little more than a year of numbness, tingling and finally motor involvement in lower legs. That’s what finally got me to see a neuro. B12 and other possible culprits were ruled out after extensive blood work; CIDP was confirmed by nerve conductivity tests and EMG.
The standard treatment for CIDP is IVig and/or prednisone. Neither worked for me, but that doesn’t mean it won’t help you. You should definitely ask your neuro to start you on one or both.
Good luck and welcome to this not very fun club.
April 19, 2010 at 7:55 pm
Gary, I was dianosis in Mar.09. I had some difficulity going to several Doctors as all the pain was in by bladder and it seems most text books indicate pain should be in your arms and legs. I had none. Forturnately I findly found a good Neuroligist that when straght to the cause and started me on Neurotin,and IVIg every 28 days. This month being one year I seem to better understand what is happening and deal better then I once did. The most difficult thing for me was on my bad days I assumed my IVIg was failing and worried alot. I really suggest you ask lots of questions and hope you get lots of support. Best of luck.
April 19, 2010 at 8:56 pm
I would get to the doc ASAP, you should have started treatment last October. B-12 helps with the muscle fatigue etc, but it does not stop the process of cidp (demylienation) aka damage. You have not gotten level one treatment yet, as you mention the next level. Your doc should have done ivig imediately if your dx is confirmed cidp.THe immunosuppressant you are on could help to stop the progression yes, but typically they are used after ivig has failed or in conjunction with ivig. Honestly, in the 3 .6 years I have been on here I don’t really remember anyone mentioning being on that and for sure not as a first option. I imagine it is in the same family as cell cept. (both are anti rejection drugs) If it is, there was mention by some docs that cell cept causes cns involvement. Perhaps the doc is just trying to keep cost down with the azathop. Do you have continual weakness, pain, tingling, numbness, difficulty walking, etc? If you do and it continues, you should be on ivig. Is it possible to have a dialogue with the doc and ask for ivig? If he is not receptive, I would go to another doc. Do you have ncv/emg from the begining? If so, maybe you could ask for another to see if the damaghe is worse, this would be a good indicator for the doc or insurance that the current treatment is not working. Please keep us posted.
AnonymousApril 19, 2010 at 8:59 pm
It took a while for me to get a diagnoses of CIDP but once I did I was given IVIg. Who are you seeing in Birmingham? I was diagnosed by doctor Sin Ho at UAB. He is suppose to be the number one guy is this area. I hadn’t head of Azathioprine before, but it is an autoimmune depressant so…
Keep in touch. You might want to ask why you are not getting IVIg. It might be a question of $$$. They may be trying to find the cheapest way to fight it. Unfortunately that isn’t the best approach for the patient even if the insurance company likes it. [you mean our insurance companies put money ahead of our health :eek:, tell me it aint so]
AnonymousApril 20, 2010 at 6:31 pm
I am on 100 mg of azathiopine a day plus prednizone. However I had to do two rounds of plasmapheresis before I got to this point. Plasmapheresis is about $40,000 per 5 days so that may be the reason he has not suggested. From my experience the plasmapheresis cleanses your body and gives you a new start that medicine can control. I have been in remission for 14 months but will have to do the medicine for life. I would certainly ask your doctor about plasmapheresis before you get to the point that damage can not be reversed.
April 21, 2010 at 7:16 am
Gary, welcome to the Forum.
Even though my EMG and nerve conduction/velocity tests docs concluded I had CIDP, My 1st neuro concluded I had a B-12 deficiency and started me on a regiment of B-12 injections. I steadily became worse and pressed for a second opinion. Spinal tap confirmed CIDP and I began Plasma Pheresis. In addition to Plasma Pheresis I’ve tried Azathioprine and Cellcept but my body wouldn’t tolerate either. So I’m on Plasma Pheresis alone.
I am VERY surprised that you’ve been diagnosed and you’re only treatments are Azathioprine and B-12.
I urge you to contact your neurologist today and question your current treatments and seek additional treatment (Plasma Pheresis or IVIG). If your current neurologist is not willing to work with you and for you, seek another neurologist and start a more agressive treatment.
Good luck and please keep us posted on how you’re doing.
AnonymousApril 21, 2010 at 7:16 am
Welcome, Gary. I would like to add to others comments also that for neurologic deficits that threathen function in life, immunoglobulin, plasmapheresis, or steroids are the treatment of choice. You do not say much about function other than that you have tingling on your hands. I would think if you are lucky enough to NOT have a lot of problems with function right now nor progression (you say you are not getting better rather than saying you are getting worse), that the doctor was probably making sure that all the problems were not due to a B12 deficiency. You have gotten the appropriate replacement, it seems with shots of B12 frequently to replace levels and then to maintain levels. If you are able to live life normally and are not getting worse, then almost all neurologists would not treat. It is hard to tell if immunoglobulin or steroids or plasmapheresis are working if the deficits are limited or if there is not worsening–especially if there is a confounding and coexisting diagnosis like B12 deficiency. Make sure when you return to see the doctor that you let him/her know what changes are affecting your life and ability to do things in life. Second point–immunoglobulin and plasmapheresis work rapidly to limit damage by reversing the effects of autoimmune attack on nerves, but they do not treat the underlying disease–they treat the manifestations of it. It is necessary to use them if there are bad consequences happening–someone cannot walk–for example, because they work fast. Azathioprine often takes a year to work–it is slow because it affects the disease process itself–not just the manifestations of disease. This is really a smarter approach to disease control–it is just that many people cannot wait a year for results and that it is still really hard to come up with exactly the right dose because this is a rare disease. Rather than saying run from your neurologist, I would advocate that he/she is being smart to treat NOW to prevent future bad problems.
For those that get immunoglobulin or plasmapheresis, the CIDP can “burn out” on treatment–at lot of the reason being that removing antibody to nerve cells or swamping it out stops the cycle of antibody causing damage that exposes more sights for stimulation of the immune system and thus more antibody, etc.
WithHope for a cure of these diseases
AnonymousApril 21, 2010 at 3:50 pm
The mere thought of what’s happening to me scares the bergibbers out of me. Some days I choose not to read “posts” because the scare and often temper my hope. Currently, I have the dreaded “drop foot” shuffle and fuzzy feet. I still push my mower, walk my dog and play golf. My looking glass is hazy right now. Thanks for caring.
AnonymousApril 24, 2010 at 11:04 am
I agree with what WITH HOPE says about the fact that azathiopine (imuran) does take time to work. I was on it for 4 months before I had my second plasmapheresis and that is when it worked. My first plasmapheresis only lasted two months and my weakness started back because as he said plasma pheresis is only cleansing your boday and imuran attacks the disese. Your doctor is probably getting the imuran in your body before he tries something else. My weakness was getting much worse so I had to have something done.
AnonymousApril 29, 2010 at 8:23 am
I’m six feet tall and two hundred pounds, I wonder if losing twenty pounds would my me “feel” lighter and have more energy. I’m still trying to figure this monster out. I can’t get a handle on what triggers a good day versus a bad day. Is it rest, is it food, is it exercise or is it just the “beast”?
AnonymousApril 29, 2010 at 9:39 am
It’s just the nature of the disease. I don’t know where you fall for height/weight for your BMI, or how muscular you are…but losing weight if you aren’t above an ideal weight probably won’t have much effect. Average to just below average weight seems to be best for most.
It gets very easy to put on excess weight with this disease, so that alone is something to watch out for.
April 29, 2010 at 9:39 am
Loosing weight is not going to make any cidp symptoms go away, tired, fatigue, drop foot, etc. You might feel better with a healthier diet while looding the weight, but nothing more. Honestly, 6′ and #200lbs. is not that bad.
I would say your current treatment is just not cutting it for you. If you have drop foot, you have demylienation, the message from the brain is not getting to your feet because of the inflamatory process. While coming to the site can be depressing, it is still a good idea to keep checking, just to get different ideas and perspectives as well as encouragement to seek additional treatment.
Can you ask your doc for a few loading doses of ivig in conjunction with your azathioprine. That way you have the immunosupression covered and you are modulating the immune system with the ivig. By giving the body ivig, you can keep the autoantibodies at bay with the flood of antibodies and allow healing to begin.
Regarding your drop foot, do you have AFO’s?
They would be very helpful with walking.
April 29, 2010 at 5:28 pm
AFO’S ar a plastic device that gets molded to your shape and aids in walking. Some people say it takes a bit to get used to them but once they learn how to walk in them things are easier.
AnonymousApril 30, 2010 at 7:35 pm
AFO’s made it possible for me to walk fairly normally again and took away the fear of tripping. I tripped over my left foot 6 months ago and fractured it. VERY painful. Fortunately, the fracture was self-healing.
AFO’s will make your gait appear normal, and you will notice improved balance. Without them I adopt what they call a “steppage” gait — kind of a flinging out and marching step with my left foot (right foot has still got some ankle muscle, so it doesn’t hang like a broken hinge).
The other value of the AFO’s is that it makes walking/balancing far less energy sapping. When you have to work to avoid falling over and have to lift/fling/march to get around, you are using up tons of energy and you just won’t get very far before becoming overtired.
Finally, AFO’s keep your feet in a neutral (non-drop) position, which guards against Achilles tendon shrinkage. Try also night splints for that purpose.
AnonymousMay 10, 2010 at 4:42 pm
About 3 weeks ago, I changed my routine of taking all my Imuran (150mg) in the morning, to taking 50mg. three times a day. Seems that I was told it didn’t matter. Anyway, since I changed, it “seems” like I’m more steady, my legs seem stronger and my ups and downs are much less frequent. Was I wrong for 6 months? Anyone else familiar with Imuran? I weigh about 200 pounds, is 150mg enough?
AnonymousMay 10, 2010 at 10:10 pm
[QUOTE=Gary Erwin]About 3 weeks ago, I changed my routine of taking all my Imuran (150mg) in the morning, to taking 50mg. three times a day. Seems that I was told it didn’t matter. Anyway, since I changed, it “seems” like I’m more steady, my legs seem stronger and my ups and downs are much less frequent. Was I wrong for 6 months? Anyone else familiar with Imuran? I weigh about 200 pounds, is 150mg enough?[/QUOTE]
I was always on interval dosing at 3 times per day. Had once a day been an option for me, it probably wouldn’t have worked as it bothered my stomach too much. There are various dosing schedules depending on what the med is used for (the diagnosis). Post transplant patients only need once/day dosing for anti-rejection.
150mg is an appropriate dose for your weight, but it depends on more that…. You would have to discuss it with your dr. But there is nothing “strange” about your dose.
AnonymousMay 14, 2010 at 8:20 am
We had a company picnic yesterday. I played catch with lady and a softball. It’s easier to throw the softball than the lady. The throwing motion was better than I expected. I can probably jump two inches off the ground, so keep it low. Could move left and right somewhat effectively. I don’t want to call it my “bucket List”, but I did play rather well as a young man, and just wanted to live it again. My daughter starts college in the fall. She’ll be away from home. Pray. I can’t get my head around where I am in my life and where my life my be headed. I’m I doing well? I’m I going to get better? I’m I going to get worse? I know my words are rambling, so are my thoughts. I get a lump in my throat when I read about alot of the heart breaking issues. Pray. Thanks for letting me rattle.
AnonymousMay 14, 2010 at 3:13 pm
I regret that you have this crummy illness. I was diagnosed in 1999 and have fought it ever since. I have gone from prednisone treatment(Idon’t recommend that due to side effects) to plasmophorises to several rounds of IVIG. The first rounds of IVIG did not do much good. I think it was because they were given over a one day once a month period. I am now taking treatments spaced over several days once a month and am slowly recovering some of my lost strength.
This is the first glimmer of hope I have had in 11 years of CIDP. maybe one day I can get out of this wheelchair and walk like a normal human being.
Good luck to you and I pray that you have better results than I have had
AnonymousMay 14, 2010 at 3:41 pm
[QUOTE=Gary Erwin]We had a company picnic yesterday. I played catch with lady and a softball. It’s easier to throw the softball than the lady. The throwing motion was better than I expected. I can probably jump two inches off the ground, so keep it low. Could move left and right somewhat effectively. I don’t want to call it my “bucket List”, but I did play rather well as a young man, and just wanted to live it again. My daughter starts college in the fall. She’ll be away from home. Pray. I can’t get my head around where I am in my life and where my life my be headed. I’m I doing well? I’m I going to get better? I’m I going to get worse? I know my words are rambling, so are my thoughts. I get a lump in my throat when I read about alot of the heart breaking issues. Pray. Thanks for letting me rattle.[/QUOTE]
Gary, no one knows where/how they will end up…anyone. I’ve been an RN over 20 years and I have seen miraculous things and unbelievably horrible things.
When I was diagnosed 7 years ago, there was really little information about CIDP available compared to what is out there today. I had dramatic symptoms (like paralysis) for 2 years prior to my diagnosis and the neuro I was at couldn’t figure it out.
I just didn’t even think about how my course would go. Unfortunately, it has not gone well, but it definitely could be worse.
Keep the positive memories and the hope….there is always hope and best of luck to you!! Stay in contact:)
AnonymousMay 18, 2010 at 3:47 pm
My MD gave me Lorazepam (1mg) for anxiety last year,after I thought I was having a heart attack. I take one each morning and find it helps with the tingling in my feet as well. What other drugs would help with the tingling. I don’t really have “pain” as I have read of many of you. Let’s slay this dragon.
AnonymousMay 19, 2010 at 4:27 pm
[QUOTE=Gary Erwin]Is that another symptom I can look forward too….[/QUOTE]
Regardless of if it is this website, or any other internet search, you could easily scare the beeejabbers out of yourself. Focusing on this phrase helps me- “The course of CIDP varies widely among individuals.” It is from “NINDS Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) Information Page.” The link is here:
NINDS is National Institute of Neurological Disorders and Stroke
I agree with the recommendation to have an AFO. I’ve worn one on my left foot since 1979, or so. Ultimately, I needed one on the right foot in 2008. So, you see, nobody’s progress, and therefore treatment is “normal.” For those of you, like myself, who decide you can still walk w/o an AFO please consider the long term potential damage to your joints, ligaments and tendons of continuing to walk with an abnormal gait.
Yes, you have to pay attention to the functions that are becoming ever so slowly weaker. However, it doesn’t do me any good to do anything but have fun everyday without regard to the long list of things I can no longer do.
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