LEMTRADA - a new horizon
Almost an year ago I had to quit Tysabri because of the great PML risk. I had 60 infusions although I was positive since the beggining but I struggled to have that wonderful cure. In the end, after more than 5 years of infusions and 3 years with 1 in 265 risk for PML I decided I should stop. I had a 3 months wash-out period and than I tried TECFIDERA, another MS treatment, in pills. I have to say that i didn't work, from september to december I had 3 relapses and lots and lots of cortison. In one of those nasty moments I had to use a crutch in order to walk and it wasn't easy at all. In the end my neurologists decided I should have Lemtrada, the new monoclonal treatment for MS. The scientifi name is ALEMTUZUMAB and it has been used for the treatment of leukemia but now, after they modificated the concentration and the lenght of the treatment period it had been finally approved for MS.It is also an infusion and it is quite different from Tysabri. The treatment has a 2 years period divided in 5 consecutive days the first year and 3 consecutive days the second year and its benefits should last for 5 years. It has great risks and complications even long after the infusions but it has no PML risk. For now, is the new best thing.
It has been a month since I had the infusions and I am fine, no complications for now. I will be back with more informations about Lemtrada and how it works since then, enjoy the moment and live well.
domenica 24 gennaio 2016
mercoledì 5 settembre 2012
Feeling better
The magic of Tysabri is that it makes you forget this illness... at least this is what heapened in my case. I remember I have this Thing only when I have to go to have the infusion. I hope I am not the only one that feels this way... Good luck to all of you!
sabato 8 gennaio 2011
Brain parenchimal fraction
From the articles presented earlier regarding the influence of cigarettes smoke on the development and the evolution of the multiple sclerosis we came upon an interesting concept called BRAIN PARENCHIMAL FRACTION. Continuing my researches I found out another interesting article with the title: "Standardized Calculation of Brain Parenchymal Fraction: An Approach to Objective Assessment of Cerebral Atrophy" published in the American Journal of Neuroradiology 24:1492-1493, August 2003. The full article can be found here.
In essence brain parenchimal fraction or BPF is a semiautomated segmentation algorithm that combines the values of fractional gray matter (GM) and white matter (WM) volume into the ratio of brain parenchimal volume to total intercranial volume. It is used to estimate the degree of brain atrophy. As the utility in MS field it is mentioned the fact that is "a useful quantitative MR imaging marker for investigating destructive processes ongoing in relapsing-remitting multiple sclerosis and has been applied for intraindividual longitudinal monitoring."
Now that I cleared this point I hope that reading and understanding my posts has become easier. Thanks for your attention and hang on everybody, we've just started the fight!
In essence brain parenchimal fraction or BPF is a semiautomated segmentation algorithm that combines the values of fractional gray matter (GM) and white matter (WM) volume into the ratio of brain parenchimal volume to total intercranial volume. It is used to estimate the degree of brain atrophy. As the utility in MS field it is mentioned the fact that is "a useful quantitative MR imaging marker for investigating destructive processes ongoing in relapsing-remitting multiple sclerosis and has been applied for intraindividual longitudinal monitoring."
Now that I cleared this point I hope that reading and understanding my posts has become easier. Thanks for your attention and hang on everybody, we've just started the fight!
venerdì 7 gennaio 2011
Smoking can trigger or agravate multiple sclerosis
Today I came upon an intriguing article, recent studies seem to prove that smoking corelates with the onset and the agravation of the multiple sclerosis. Seems hard to believe? Well, I will present to you a short description and the conclusions of those studies together with the links of those articles.
1. The first study that I will present to you involves the effects of parental smoking at home and the risk of childhood on-set MS in children. The study involved 129 cases of MS and 1038 control cases, to every MS case corresponded 12 control cases that matched in sex, age and geographic origin, the subjects were selected randomly, the information about smoking habits were obtained from both groups using a standardized questionnaire. Conditional logistic regression was used to estimate the rate ratio (RR) of MS associated with parental smoking at home. Exposure to parental smoking was noted in 62.0% of cases and 45.1% of controls.The study demonstrated that a first episode of MS associates with exposure to parental smoking at home (RR 2,12 ; 95% confidence interval 1.43–3.15). The risk was significantly associated with the longer duration of exposure in older cases (over 10 years of age at the time of the index episode)—RR 2.49 (1.53–4.08)—than in younger cases.
The study concluded that children exposed to parent smoking have a higher MS risk. The duration of exposure also affects the level of risk.
Full article is found here.
2. Another study carried out by Women's Hospital in Boston (US) using clinical informations, MRI immages, a survey poll and longitudinal follow-up with an average duration of 3,29 years ended in january 2008 on 1465 MS pacients with an average age of 42 years old. 53,2% representing 780 pacients have never smoked, 29,2% representing 428 pacients were ex-smokers and 17,5% representing 257 pacients were active smokers.
Conclusions: the active smokers showed a considerable agravated condition in terms of EDSS (Expanded Disability Status Scale) Multiple Sclerosis Severity Score and a considerable parenchimal cerebral fraction. Furthermore, active smokers showed a higher probability to develop Primary Progressive Multiple Sclerosis than the other subjects. A longitudinal analysis brought to attention the fact that the relapsing-remitting MS turned into Secondary Progressive MS faster in the case of active smokers. In addition the volume of T2 lession enlarged faster in the smoker pacients while their parenchimal cerebral fraction dimished faster.
The final conclusions of this study is that cigarette smoke has a negative influence on the progression of the MS and accelerates the conversion rate from Relapsing Remitting form to a progressive form.
Full article is found here although in italian.
This dicoveries bring to my mind the following considerations:
- if you care about your MS quality life don't start smoking or stop smoking
- if the people close to you continue to smoke in your presence after they are informed of these new discoveries it means that they don't care about you, they don't care about your life and your health and they don't really love you.
1. The first study that I will present to you involves the effects of parental smoking at home and the risk of childhood on-set MS in children. The study involved 129 cases of MS and 1038 control cases, to every MS case corresponded 12 control cases that matched in sex, age and geographic origin, the subjects were selected randomly, the information about smoking habits were obtained from both groups using a standardized questionnaire. Conditional logistic regression was used to estimate the rate ratio (RR) of MS associated with parental smoking at home. Exposure to parental smoking was noted in 62.0% of cases and 45.1% of controls.The study demonstrated that a first episode of MS associates with exposure to parental smoking at home (RR 2,12 ; 95% confidence interval 1.43–3.15). The risk was significantly associated with the longer duration of exposure in older cases (over 10 years of age at the time of the index episode)—RR 2.49 (1.53–4.08)—than in younger cases.
The study concluded that children exposed to parent smoking have a higher MS risk. The duration of exposure also affects the level of risk.
Full article is found here.
2. Another study carried out by Women's Hospital in Boston (US) using clinical informations, MRI immages, a survey poll and longitudinal follow-up with an average duration of 3,29 years ended in january 2008 on 1465 MS pacients with an average age of 42 years old. 53,2% representing 780 pacients have never smoked, 29,2% representing 428 pacients were ex-smokers and 17,5% representing 257 pacients were active smokers.
Conclusions: the active smokers showed a considerable agravated condition in terms of EDSS (Expanded Disability Status Scale) Multiple Sclerosis Severity Score and a considerable parenchimal cerebral fraction. Furthermore, active smokers showed a higher probability to develop Primary Progressive Multiple Sclerosis than the other subjects. A longitudinal analysis brought to attention the fact that the relapsing-remitting MS turned into Secondary Progressive MS faster in the case of active smokers. In addition the volume of T2 lession enlarged faster in the smoker pacients while their parenchimal cerebral fraction dimished faster.
The final conclusions of this study is that cigarette smoke has a negative influence on the progression of the MS and accelerates the conversion rate from Relapsing Remitting form to a progressive form.
Full article is found here although in italian.
This dicoveries bring to my mind the following considerations:
- if you care about your MS quality life don't start smoking or stop smoking
- if the people close to you continue to smoke in your presence after they are informed of these new discoveries it means that they don't care about you, they don't care about your life and your health and they don't really love you.
- My advice to all of you MS pacients is to take control of your present situation, win the cigarette's fight, you only live once!!!!!!!!!!!!!!!!!!!!!!!
mercoledì 5 gennaio 2011
Fight MS using a medication as your weapon
How are you fighting MS? MS is not an easy thing, dealing with it is even harder but we should find ways to fight it. Offcourse if you are in a prolungate remission you may not need medication for now unless your medic says so but if the relapses are considerable in number, size and consequences or in all three of them you should continue to fight while there is still something to fight for and pretend the best for you from your doctor and your medication. You should not stop at doing something you should try the best thing for you. In different fases of the MS different medication are indicated for you but together with your doctor you should find the right one for you. Then there are persons that react better to one medication rather than another, you should not get discouraged after the first try. This is not publicity for a medication or another, it is only your doctor that knows what is best for you, if it is Copaxone, Avonex, Rebif, Tysabri or another medication that I am not aware of. I can only say that I tried Copaxone in the past and for two years I was very well but when the situation changed and I went fron one relapse to another in a short period of time my doctor decided that I should not wait anymore and took in consideration other alternatives for me. In this moment I am treated with Tysabri and it is going well, I gained back part of the capacities I had lost with those ugly relapses and what is even better I had no new relapses. I am very grateful to my doctor for not waiting and for doing what was best for me.
If you want you could see what others have tried and how they feel, here I present to you a video made by a girl who fighted like a true warrior. Click on the word video if you want to see it.
Bye and thanks for your attention.
If you want you could see what others have tried and how they feel, here I present to you a video made by a girl who fighted like a true warrior. Click on the word video if you want to see it.
Bye and thanks for your attention.
sabato 1 gennaio 2011
Wishes...
Let's hope that the new year will bring us better medications and why not a cure! This is my wish for all of you people that are facing this thing!
martedì 28 dicembre 2010
A little bit worst... a little bit better
Life ain't easy, it's very hard and is even harder if you have MS. I'm not victimizing myself, just that when you're not feeling your body anymore and the new year is coming... it's hard to hope. What I hope for in the new year? To be a normal person? Yeah, you're right, that's to much to ask... I just want to be again as I was, last week, a little bit better.
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