My husband has MS and has been currently getting Tysabri infusions once a month. Tysabri is considered one of the best medications to prevent/slow down the progression of MS. You can only get an infusion once every 28 days. This medication has slowed down the progression in my husband. He tried Rebif and the other shots available to no avail--they seemed to aggravate his system. If you are considering Tysabri then you also have tried everything else--because Physicians don't use Tysabri as a first line of defense--it is generally the last line of defense in slowing the progression of MS.
Tysabri is very expensive, around $8,000 per infusion.We are on a very limited income so we can't pay $8,000 per month. However, the manufacturer of Tysabri, does help by providing Tysabri at reduced cost or free. You will have to fill out some papers providing the income of all persons in your household. You will fill out additional information regarding your monthly outgoing expenses. All this is considered in the decision of whether or not you qualify for reduced or free Tysabri.
Then your insurance should tell you how much your part for the infusion will cost you each month. My husband and I are on a Medicare PPO--Humana and pay only $35.00 per month--this January it will be $40.00 a month.
Before my husband started Tysabri he had to get a specific blood test to see if he was more or less susceptible to PML. He was susceptible therefore every so often they need to do another blood test to be sure he hasn't contracted PML.
PML can be deadly. The rate of PML cases is very low though. Your doctor will discuss the problems associated with PML--then it will be your decision as to whether or not you wish to go forward with the Tysabri.
Showing posts with label MS. Show all posts
Showing posts with label MS. Show all posts
Friday, October 28, 2011
Tuesday, June 22, 2010
Update On My Life With Fibromyalgia
My Fibromyalgia has been hard to control. I haven't been doing any writing for over a year now-as you can see. I am going to try harder though. I had surgery on my right rotator cuff 10 wks. ago. I had injured it on a trip we took to the East coast to see our Grandchildren in January. It was great to finally see them. I am now strengthening the rotator cuff. It is taking a long time to heal and progress as I had fell on it once 5 weeks post-op. That set me back about two weeks in my physical therapy. I am looking forward to knitting and doing more with my shoulder once again.
My son and his daughter will be moving out here soon. My daughter and her family are even considering it too. It would be nice to have my side of the family nearby me for a while-it's been ten yrs. since my children have lived nearby. I have missed alot of my grandchildren's growing up.
My husband is having more problems with his MS as I have been with my Fibromyalgia. My biggest problem with the fibro is that I can't take any pain pills they prescribe because I am always being allergic to them. My body just keeps rejecting them each time and keeps being allergic each time-even the pain patches. It's difficult to control the pain with just ice and motrin. I have recently begun a regimen of Magnesium which does help "some". Also, by experimenting with foods I have found that Cherries and Bannanas also help with pain. And the Bannanas eaten before bed also help me sleep a little better too.
My son and his daughter will be moving out here soon. My daughter and her family are even considering it too. It would be nice to have my side of the family nearby me for a while-it's been ten yrs. since my children have lived nearby. I have missed alot of my grandchildren's growing up.
My husband is having more problems with his MS as I have been with my Fibromyalgia. My biggest problem with the fibro is that I can't take any pain pills they prescribe because I am always being allergic to them. My body just keeps rejecting them each time and keeps being allergic each time-even the pain patches. It's difficult to control the pain with just ice and motrin. I have recently begun a regimen of Magnesium which does help "some". Also, by experimenting with foods I have found that Cherries and Bannanas also help with pain. And the Bannanas eaten before bed also help me sleep a little better too.
Monday, June 1, 2009
I'm Back
Hi, Did you miss me?
Let me tell you what's been going on and where I've been or should I say where we are now?.
First off Russ wasn't working due to his MS..so he had to apply for SSD. In the meantime we tried living on mine. Which wasn't easy 'cause we couldn't pay our mortgage at all.
Let me tell you DO NOT BELIEVE THE B.S. THAT THE GOVERNMENT WILL HELP PEOPLE WITH THEIR MORTGAGES BECAUSE IF ANYONE NEEDED IT BADLY WE DID AND THEY WOULD NOT! They are only wanting to help those with Perfect credit and high-paying jobs! We didn't fit either category! So we made a choice to give up the house before foreclosure.
Russ finally got his SSD in March and we looked at places closer to his kids. We didn't want to be too close due to we didn't want them to decide, at the last minute, to drop off the grandkids for us to babysit. We found a fourplex that we liked. The landlords normally didn't take pets without approval, so we had to take Sammie and Jaws on an interview. They were both on their best behavior and passed. We are twenty one miles from the kids--we figured that's far enough that they will call for us to babysit. We have already babysat once and will be doing so this weekend and Monday too. It's nice to have it planned out in advance this way though.
We live outside our little town of Buhl, seven miles outside of it--near the dairies--and into the country. Three miles down the road is the Hot Springs, five miles from us is a pool, a few more miles is some of the best fishing in this part of the State (being that we live in the Thousand Springs Area). Yes, there is a Golf course nofar either as it is Russ' favorite sport. Buhl is the type of small country town that you can go get a burger and bump into farmer Frank and talk for an hour and a half about this and that and never be in a rush. Nobody at the burger joint rushes you, Frank doesn't nor do you..you just sit and relax and enjoy the day that way. It's the way of country life here. Our day begins with the sounds of cows mooing, birds chirping, dogs barking, geese cackling, pheasants crowing and the sun peeking into our bedroom window. We walk the dogs outside to the fence and watch as the cows in the pasture mosey around and the clouds drift by the sun while the wind blows through the grass. Right now spring has sprung the tulips have blossomed red and yellow. Purple and white crocuses in their crowning glory, the rhubarb is growing taller by the day, Sammie and Jaws are rolling in the green grass, the wind is softly playing the chimes. Sammie goes on point as the cows move toward home as the sun becomes lower in the sky. She's thinking this may be the time she gets herself one (haha), Russ calls her back, the first time Jaws heard a cow moo he hid behind me (not anymore though), now he tries to climb through the fence. Purple and red fill the sky as we walk to the porch and watch the sun finish setting. Sigh.....the end of another day in the country.
As for our health -- finally I found a pain specialist in Pocatello before we moved who found the right combination of meds that are working for my Fibromyalgia. I am going to keep going to her every three months. As for Russ--the shot for $5,200.00 per month wasn't working so they took him off of it a few weeks before we left. They want to wait four months and start him on anti-rejection drugs for his MS. Our total time from renting the apartment to moving was six days then we didn't have internet for so long that's part of the reason I've been gone so long too. Besides not feeling even good enough to type on the keyboard nor even knit.
Well, take care everyone.
Let me tell you what's been going on and where I've been or should I say where we are now?.
First off Russ wasn't working due to his MS..so he had to apply for SSD. In the meantime we tried living on mine. Which wasn't easy 'cause we couldn't pay our mortgage at all.
Let me tell you DO NOT BELIEVE THE B.S. THAT THE GOVERNMENT WILL HELP PEOPLE WITH THEIR MORTGAGES BECAUSE IF ANYONE NEEDED IT BADLY WE DID AND THEY WOULD NOT! They are only wanting to help those with Perfect credit and high-paying jobs! We didn't fit either category! So we made a choice to give up the house before foreclosure.
Russ finally got his SSD in March and we looked at places closer to his kids. We didn't want to be too close due to we didn't want them to decide, at the last minute, to drop off the grandkids for us to babysit. We found a fourplex that we liked. The landlords normally didn't take pets without approval, so we had to take Sammie and Jaws on an interview. They were both on their best behavior and passed. We are twenty one miles from the kids--we figured that's far enough that they will call for us to babysit. We have already babysat once and will be doing so this weekend and Monday too. It's nice to have it planned out in advance this way though.
We live outside our little town of Buhl, seven miles outside of it--near the dairies--and into the country. Three miles down the road is the Hot Springs, five miles from us is a pool, a few more miles is some of the best fishing in this part of the State (being that we live in the Thousand Springs Area). Yes, there is a Golf course nofar either as it is Russ' favorite sport. Buhl is the type of small country town that you can go get a burger and bump into farmer Frank and talk for an hour and a half about this and that and never be in a rush. Nobody at the burger joint rushes you, Frank doesn't nor do you..you just sit and relax and enjoy the day that way. It's the way of country life here. Our day begins with the sounds of cows mooing, birds chirping, dogs barking, geese cackling, pheasants crowing and the sun peeking into our bedroom window. We walk the dogs outside to the fence and watch as the cows in the pasture mosey around and the clouds drift by the sun while the wind blows through the grass. Right now spring has sprung the tulips have blossomed red and yellow. Purple and white crocuses in their crowning glory, the rhubarb is growing taller by the day, Sammie and Jaws are rolling in the green grass, the wind is softly playing the chimes. Sammie goes on point as the cows move toward home as the sun becomes lower in the sky. She's thinking this may be the time she gets herself one (haha), Russ calls her back, the first time Jaws heard a cow moo he hid behind me (not anymore though), now he tries to climb through the fence. Purple and red fill the sky as we walk to the porch and watch the sun finish setting. Sigh.....the end of another day in the country.
As for our health -- finally I found a pain specialist in Pocatello before we moved who found the right combination of meds that are working for my Fibromyalgia. I am going to keep going to her every three months. As for Russ--the shot for $5,200.00 per month wasn't working so they took him off of it a few weeks before we left. They want to wait four months and start him on anti-rejection drugs for his MS. Our total time from renting the apartment to moving was six days then we didn't have internet for so long that's part of the reason I've been gone so long too. Besides not feeling even good enough to type on the keyboard nor even knit.
Well, take care everyone.
Saturday, May 17, 2008
Montel Bids Farewell:
Friday May 16th, Montel bid farewell after seventeen seasons. He said his final goodbye as the host of the television show "Montel". We laughed, we cried, we listened to his advice, we cared for his guests. Now it all comes to an end.
Montel was diagnosed with MS in 1999, approximately in his eighth season of "The Montel Williams Show". Montel continued to host his show despite his MS. His celebrity status gave courage to others, afflicted with MS, that they could find hope in continuing to lead normal lives. He established the Montel Williams MS Foundation in 2000 for further research in finding a cure in the future. For more information on the foundation click here: MontelMS
In January 2006 he became the spokesperson for a medication program named PPA. It assists those that are under insured and not insured to be able to get medications. To date Montel has assisted over five million people nationwide get the medications they need. PPA and those people are grateful for his involvement in the program. To get in touch with this program please check out this link: PPA.
We will miss you Montel. You were more than a talk show host, more than an entertainer. You were someone who showed compassion, truly listened and gave inspiration to others. You cared as you even followed up on your guests to see how they were doing. You went beyond what normal talk show hosts have done before you. You set a higher standard to follow. Thanks, we love you and shall miss you dearly.
Montel was diagnosed with MS in 1999, approximately in his eighth season of "The Montel Williams Show". Montel continued to host his show despite his MS. His celebrity status gave courage to others, afflicted with MS, that they could find hope in continuing to lead normal lives. He established the Montel Williams MS Foundation in 2000 for further research in finding a cure in the future. For more information on the foundation click here: MontelMS
In January 2006 he became the spokesperson for a medication program named PPA. It assists those that are under insured and not insured to be able to get medications. To date Montel has assisted over five million people nationwide get the medications they need. PPA and those people are grateful for his involvement in the program. To get in touch with this program please check out this link: PPA.
We will miss you Montel. You were more than a talk show host, more than an entertainer. You were someone who showed compassion, truly listened and gave inspiration to others. You cared as you even followed up on your guests to see how they were doing. You went beyond what normal talk show hosts have done before you. You set a higher standard to follow. Thanks, we love you and shall miss you dearly.
Subscribe to:
Posts (Atom)