Jim-LA
Your Replies
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February 17, 2014 at 5:01 am
Those that qualify for Medicare do not have to get a policy through the Affordable Care Act (Obama care).
Just to confirm, you already have coverage via Medicare parts: A (hospital, surgery, lab tests, doctor visits, SNF, home care, more); B (ambulance, wheelchairs, walkers, clinical services, more); and, D (prescription drugs). You don’t have part C (Medicare Advantage Plan (PPO or HMO).
Many part C plans are free (no monthly premium) and each State has qualified different ones. Most of these are HMO plans, but some PPO plans are free in some States too (or have a small premium). Have you looked into a Medicare Advantage Plan where you live? Was this what you called a “supplement” where you were denied coverage? Please use the “personalized search” at the following link to find a Medicare Advantage Plan in your area: https://www.medicare.gov/find-a-plan/questions/home.aspx
Open ennrollment periods are closing fast so you will need to apply quickly. Enrollment deadline info can be found here: http://medicare.com/advantage-plans/enrollment-and-disenrollment-periods-for-medicare-advantage-plans.html
Have you looked into Medigap plans (this could be what you called a “supplement”)? Normally you have to be 65+ to enroll, but some States have made enrollment mandatory if you have already qualified for Medicare. More info here: https://www.medicare.gov/supplement-other-insurance/when-can-i-buy-medigap/when-can-i-buy-medigap.html
Each State has its own special programs to support the health of persons with low income. In California it is Medi-Cal or LIHP: http://www.dhcs.ca.gov/provgovpart/Pages/lihp.aspx You should check with your State to see what programs they offer and if you qualify for them.
Drug companies usually have special programs where they can offer the drugs to you at very reduced costs, sometimes close to free. You should check the websites of your drug makers for these programs. As an example, if you were taking the drug Ampyra, you might qualify for their help program here: http://www.acorda.com/Patients/AssistancePrograms.aspx
Going to see a Doctor in order to get current prescriptions is covered under Part A. However, there is a deductible and a co-pay that would need to be paid at some point. These can usually be negotiated and paid off over a longer time frame.
Another option is to buy your medicines from outside the USA where you do not need a prescription. I do this all the time to cover certain expensive drugs not covered by Medicare. Yes, there is some risk when buying from India, Canada, Europe, New Zealand, et all. Here are a few sites I have used (but cannot gurantee them for your drugs) that might offer your drugs for less:
http://www.canadian-pharmacy-24h.com/
http://trustedshoponline.pw/
http://www.buylowdrugs.comI hope you can find coverage and get the treatments you need to help overcome this disease.
February 13, 2014 at 1:30 amAzathioprine (Imuran) can have side affects in some that might seem like a relapse. If your appetite seems affected you should take Imuran after meals, not before. The feeling of general weakening could be related to the combined affects of Imuran together with Prednisone. It often takes a couple months for our bodies to acclimate to such strong medicines.
The feeling of certain muscle weakness could also be a result of the contrast between muscles you are using regularly, and muscles that are not used as much due to Myelin damage or possible inactivity. However, it could be some form of a slow relapse, but my thinking would be it probably has more to do with the medicines you recently started taking.
Some of the side affects of these medicines are described here:
http://www.medicinenet.com/azathioprine-oral/page3.htm
http://www.mayoclinic.org/steroids/art-20045692?pg=2As far as for telling the difference between a CIDP related weakness and muscle atrophy, CIDP weakness (Myelin damage) is usually accompanied by tingliness, numbness, and unusual sensations like zingers, crawliness, sometimes itching. Muscle weakness without these associated symptoms is less likely to be CIDP, but as you said “your mileage may vary”.
Battling this disease is not fun and I wish you the best of recoveries.
February 12, 2014 at 1:03 amHooray! Idon’t have Evans Syndrome (ES) or Idiopathic Autoimmune Hemolytic Anemia (AIHA). My hematologist had already run all those tests, plus others, and they came up negative.
The erythropoietin shots seem to be working as my RBC was up to 9.6 today. Got a 2nd shot today and am scheduled for a 3rd in 2 weeks. The goal is to get my RBC above 10.0 and see if my system will continue to climb back to normal (12-14) by itself after the treatments. I’ll post an update after Feb 25th.
February 11, 2014 at 7:54 pmThat is exactly what happened to me! I went into the ER in October, the ER transferred me to the ICU the next day, and then I was transferred to rehab at another facility in November. After 3 weeks in rehab they told me I was not progressing and couldn’t stay in rehab. I was still unable to walk, stand, or feed myself. My vision was blurred (couldn’t read anything) and I could not chew or swallow food well. They ordered a power wheelchair for me through my insurance because they said I would need it. Then they transferred me to a skilled nursing facility (SNF) in January, where I stayed until my insurance ran out in April.
I regained the ability to feed myself while in the SNF where I was given physical and occupational therapy daily. My treatments with Plasmapheresis helped me regain the strength needed to go home. I had to have my house retrofitted (wheelchair ramp, wider doorways, hospital bed, Hoyer lift, etc.) before my wheelchair and I went home together.
Many GBS sufferers have this situation and you should not be alarmed by it. Each of us recovers at different rates and to different degrees. A good deal of recovery usually comes during month 3 to 6 after being stricken. So, hang in there and things will get better. I hope your husband has a quick and full recovery.
February 8, 2014 at 4:35 amMy CIDP gave me a bonus form of itchy, restless leg syndrome (RLS). It’s an itching, twitching, squirmy feeling in my legs. It is not painful, but extremely irritating. It can keep me from sleeping at times. My neuro had me on Requip (Ropinirole) for my RLS but it didn’t help me and I was experiencing some of the side affects from that drug, so I went off it.
What I found that works for me is a low cost over-the-counter homeopathic item called “Restless Legs Relief” from Magnilife. It’s available in most drug stores. This works wonders for my itching and RLS symptoms, it usually starts working in about 30 minutes after taking it. There are always some that would say this is not a medicine. But, as far as I’m concerned, if it helps remove and/or reduce RLS discomfort it IS a medicine of sorts. I take it daily and it has worked consistently for me for a few years now.
February 8, 2014 at 4:15 amJohn, I have not heard of supplements or teas having adverse interactions with IVIg or SCIg. The only possible interaction might be with live-virus vaccines, and the interaction would be to make the vaccine ineffective. Here is a chart that summarizes the types of IVIg and any interactions that might occur: http://www.phscorporation.com/IVIGComparison.pdf
I had partially paralyzed speech with GBS/MFS, mostly on the right side of my head/mouth/throat. It took many months of speech therapy before I could do much more than whisper. IVIg didn’t seem to make a difference for me, but Plasmapheresis sure did. I had improvement 2-3 days after my 1st PE treatment. 5+ years later, I still have a slight lisp when I speak.
Here are some other member threads that talk about similar conditions:
https://www.gbs-cidp.org/topic/vocal-cord-paralysis-post-icu
https://www.gbs-cidp.org/topic/anyone-experience-vocal-cord-paralysis-from-cidpRegarding insurance coverage, each insurer has different coverage policies for the same disease. Here is a sample from Aetna for VCP: http://www.aetna.com/cpb/medical/data/200_299/0253.html Please note that it is important to choose the correct medical coding when applying for insurance coverage of a VCP related treatment, ditto for a CIDP related treatment. You should request copies of the detailed policy your insurance carrier will apply in your case.
Are you related to Loni? If so, there are alternatives to using infusion centers. You could do a home IVIg infusion or do SCIg at home. Both are less costly to an infusion center. However, if this is your first IVIg treatment, you should probably have it done in a facility that can closely monitor your reactions to it and how it is given. Some people do better if IVIg is given at a slower rate. Because it can take a very long time, you may want to request a faster rate to see what you can tolerate. Insurance should pay for the infusion center more readily if monitoring is a medical necessity in your case.
My best wishes for a quick recovery!
February 7, 2014 at 1:44 amI had a colonoscopy last year where they found a bleeding ulcer. They had me go on omeprazole to help heal the ulcer. Then my white blood cell count fell stumping my Hematologist. After doing some research on drug side affects, she asked me to stop taking the omeprazole and my WBC came back to normal a few weeks later.
Omeprazole is a drug well tolerated by most people, just not me.
JK, did they do a bone marrow aspiration and biopsy test on your friend? http://labtestsonline.org/understanding/analytes/bone-marrow
A stem cell transplant might be worth exploring to see if it could correct your friend’s condition. This is a very expensive procedure and some insurances will not cover it. There are 2-3 clinical trials that are still recruiting. Here is one to check out: http://www.clinicaltrials.gov/ct2/show/NCT00716066?term=NCT00716066&rank=1
February 6, 2014 at 2:50 amI think being itchy is just one of the many resdiuals we CIDPers seem to have to live with. In your case it may be related to the IVIg wearing off. In my case IVIg had nothing to do with it, I just itched all over from time to time, still do. The most frustrating time for me was when I first got the itchiness (with GBS in 2008), but couldn’t scratch at anything due to complete body paralysis. Now I have a cool scratching stick I use quite often.
Hope the IVIg takes your symptoms away
February 5, 2014 at 11:28 pmGH, CIDP is primarily an autoimmune disorder where antibodies attack the nerve fibers and cause neurologic damage. The connection between CIDP and anemia is in the blood where lymphocytes (from the autoimmune system) no longer recognize “self” (thanks to CIDP). These lymphocytes then go on the attack to remove invading organisms from our body. In doing so, they attack parts of the body itself. There is evidence of this in Autoimmune Hemolytic Anemia (AIHA), Evans Syndrome (ES), and other similar diseases. In these diseases the red blood cells are attacked by lymphocytes and killed off at a rate greater than the bone-marrow can reproduce more red blood cells.
Treatment for these types of anemia can be very similar to treatment for CIDP. Prednisone and IVIg are often used. More recently, Rituximab induced substantial improvement of AIHA and ES recoveries.
At this point I’m more concerned with finding and treating the causes(s) of my anemia since it is more life threatening to me than CIDP.
I hope you never get these complications, and if you do, I hope people will be more helpful than critical to you.
February 5, 2014 at 11:25 pmJK, thank you for the info! This was very helpful and I’ve learned a lot researching this. I’m planning on asking my Hematologist about ES next week. Maybe she has already done the Coombs test and can put me at ease about ES. I’m anxious about finding the cause of my anemia so I know what treatments will work best for me.
February 4, 2014 at 9:33 pmI finally got a Prior Authorization for erythropoietin treatments from my cheapskate insurance. I had my 1st shot 5 days ago. It will take up to 4 weeks to know if it worked or not. In the meantime, my RBC was up a little to 9.1. I still think my anemia is somehow linked to my CIDP.
Thank you Lori and Maddie for your inputs! All comments and experiences about anemia versus CIDP are more than welcome.
January 31, 2014 at 4:20 amHooray! I hope he continues to recover quickly, and I hope the seven year reboot is right-on. In my case, I would have about 16 months to go before reboot.
January 31, 2014 at 4:10 amGBS is a very rare disease and getting it a second time from a cold is even rarer. RGBS is even more rare. There’s no reason to worry that a typical cold or sore throat is going to trigger an autoimmune response and lead to a recurrence of GBS. Colds, sore throats, and the occasional bout of diarrhea are fairly predictable parts of everyone’s lives before and after GBS.
In the very, very unlikely event you get tingling or numbness in the hands or feet in next couple weeks following the cold, you should get a routine checkup by a GBS doctor.
January 31, 2014 at 3:56 amHave you considered having SCIg treatments? If you have adverse reactions to IVIg, SCIg could be a treatment you would tolerate much better and get the same benefits as from IVIg. You can read more about it here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2817783
Prednisone the pill – I took 60MG for about 18 months. It did help take my immune system off-line so it could no longer produce the bad lymphocytes (T-cells, B-cells, and NK cells) that no longer recognized “self” and damaged my Myelin and Axons. The PE removed the bad lymphocytes that were already released in my bloodstream. The IVIg treatments did little for me after I was on Prednisone.
I had many adverse reactions from taking the Prednisone (cataracts, shingles, fungal infections, thin skinned, more). The way I look at it, is that Prednisone is the lesser of the two evils when compared to CIDP. I would reluctantly take it again if I fell out of remission.
Are you taking Alpha Lapoic Acid? I’ve been taking 1200MG per day. There was a clinical trial last year using it to treat CIDP, the results and findings are not yet published. Other members here have reported good results with ALA. The clinical trial: http://clinicaltrials.gov/show/NCT00962429
Since CIDP is so individualized, everyone seems to respond differently to the various treatments and the outcome of the treatment will usually determine its duration of use. I hope your treatment plan works well for you and gets you back on your feet soon so you can rebuild that muscle mass!
January 28, 2014 at 11:40 pmHaving stayed in 3 SNF’s while I was paralyzed, I think few have good support for GBS/CIDP patients. It really comes down to the attitude of the CNA’s who primarily provide the care to patients. Many CNA’s just don’t care about the patients; a few are caring and will truly help. Others are very calloused having had to deal with patients with Alzheimer’s, in some kind of vegetable state, or who can no longer communicate and function well. The quality of the SNF staff can also be a reflection of patients and their abilities to deal with life (or end of life) in the SNF.
The better SNF’s have full time staffed on-site OT/PT departments, grooming departments, full kitchens overseen by dietitians. Only the very large SNF’s will have on-site doctors. SNF’s usually have a primary care doctor on-call along with several other specialty doctors. You doctors will most likely NOT be allowed to see you in an SNF, unless the SNF is run by a hospital your doctor is affiliated with.
My insurance required a re-justification of my need to stay in the SNF at the end of every 1-2 weeks. Unfortunately, the justification report writing usually fell onto the social worker at my SNF. I had to fight with her over her progress reports because she had no experience with GBS and couldn’t understand why I was not improving faster. My SNF would not accept reports or recommendations from my own doctors (including my GBS neurologist). So, the insurance justification process may not be a fair process at all SNF’s.
Picking a good SNF goes beyond just looking at the ratio.
