mugla
New Member
Posts: 8
|
Post by mugla on Nov 29, 2007 13:53:26 GMT -5
Hi David and everybody, You know that some families are using losartan under control of our doctors or without doctor control in Turkey.I couldn't update informations about this usage because i am not in Turkey since five months.My company sent me to outside of Turkey.But i have some informations from our website.Nearly 30 children(all duchenne) who are members of our website taking losartan under the control of doctors(.Age between 4 and 18)and nearly 15 people taking losartan out of doctor control(different dystrophy patients including duchenne,myopathy,becker and lgmd;from every age group) . Most of them wrote their observations at web site.Only one person wrote his sickness reversed after taking losartan(he was using himself and he is 34 years old myopathy.)and he stop to taking.One becker and one myopathy also thought there isnt any positive or reverse effect and they stopped, but after one-two weeks they said after stopping they understood that indeed it had good effect, they were more powerfull and more enerjic while using it and they began again.The other all families and patients thinking more or less it has good effects .I didnt talk doctors but families saying after the six months usage ,doctors did some tests and they decided to continue losartan six months more.Doctor said to them losartan working good than their hope.And for your informaton who are taking losartan under the control of doctors taking deltacortril also.And doctors thinking they are working together more powerfull.I think losartan not miracle but it has some good effects.We will see what will be next six months.
not:sorry for my english.
|
|
|
Post by MitchellsDad on Dec 2, 2007 1:23:59 GMT -5
Mugla, thank you very much for your post. In the United States there is a VERY small group of DMD boys (5 or 6) who have been taking losartan under the supervision of a Dr. Most have seen a positive benefit. My son saw major improvements in the first few weeks and this has continued over 6 months. However, he was only 4 1/2 when he started taking it and it is hard to tell how much of the improvement is due to normal growth and development. I would like to learn more about the study in Turkey. Is it possible to translate some key points of your website for us?
|
|
|
Post by MitchellsDad on Dec 2, 2007 1:39:11 GMT -5
Mugla, I had a couple more questions. I have spoken with a few parents whose children had stomach cramping and diarrhea for a few weeks when starting losartan (mine included). The interesting thing is that this is not a side effect of this drug. I think it could be an indication that the smooth muscle in the gastrointestinal tract is working better that it was before losartan. Did any parents in the study in Turkey say anything about this?
In April you said "I will send email to you about the story ." Would you mind posting this e-mail.
Thanks, MitchellsDad
|
|
|
Post by Dinc on Dec 3, 2007 13:46:58 GMT -5
Mugla: Hi. We're also from Turkey, Bursa.We're two brothers with BMD, ages 33, 38. Can you please give the web site address that you've mentioned. Thanks.
HD
|
|
mugla
New Member
Posts: 8
|
Post by mugla on Dec 3, 2007 14:42:26 GMT -5
Hi everybody, MitchellsDad i will try to translate some posts.But give me some couple days.2-3 families complained about stomach cramp and diarrhea.maybe more families have same observations but everybody not sharing their experiences.But one of them saying same thing with you.their son had constipation problem and even they used medicenes problem didnt end.but they said that after one month of begining losartan this problem finished and now he dont have any problem about constipation. about "I will send email to you about the story ." I said that to David.because he was asking about trial.And i wrote this mail to him same day.The story is our government didnt give permission for losartan trial.For this reason families and doctors began to try losartan themself.(This mean it is not official trial)and because of money problem(some tests very expensive) only standart tests (which are payable by government insurence system )done after six months.and again same reason doctors dont want somebody share their name with losartan .But after six month results they are more relax now.I will translate some posts of losartan users in few days. Dinc,I am glad to meet you at david's web site.David is doing very important job for all muscle dystrophy society of world.he is the main information source of us.God bless him..Our turkish web site is kashastaliklari.aileniz.com I am one of the moderators of this web site.My nick is himalayan at there.We have more than five hundred members from Turkey.I hope i will see you at there also.If you want to read posts of losartan users,you can find them under several title in forum pages.but mainly they are under the ''losartan'' and '' cozaar iyi bir þey'' titles.You know, cozaar is commercial name of losartan.
|
|
mugla
New Member
Posts: 8
|
Post by mugla on Dec 14, 2007 7:08:48 GMT -5
Sorry for late .I was at remote area of Nepal and finding internet connection is not possible at that area.Now im at Kathmandu.Here are some posts from our website.There are more posts but i choose samples.If you have questions to these guys i can send your questions to them.
Ismail (34 years old.Firstly doctors said he is becker,after another doctor said myopathy .he dont know which one correct and he is not care about it)he used losartan himself. - I used cozaar eight months.I didnt see any benefit.And i am thinking it has bad effect. My sickness was going worse with it and i stopped to taking losartan.I didnt use any other medicine or supplement while using cozaar.And still i am ambulant, for this reason i observed very clearly.For my opinion and observation it has bad effect for my sickness.
Frezya (teacher,29 years old,When she was 10 years old, doctors said only she is Muscalar dystrophy,Now she is on tests for learning details.She is still walking.She is using losartan herself )
- Hi everybody, I used Losartan for four months.Firstly i saw some benefits(especially at up part of my body) I was feeling myself more powerful, but after i began to feel sometimes very weak.(weakness was coming and going, same like waves).And after four month i decided it hasnt any more benefit and i stopped.After second week of stopping losartan i began to fall and i realized that i didnt fall even one time and i was not become tired quickly at school while using losartan..I decide to begin it again. For my opinion Losartan not has miracle effect but it have some benefits.I didnt see any difference at blood pressure and any side effects while using it.
Sabir (39 years old,calpoinapthy,she is using under medical observation) I began to Losartan 9 months ago with 50 mg daily.I have high blood pressure problem and i am fat.For this reason second month i increased it to 100 mg.Before begining it, i was walking with walker with difficulties.I was thinking there isnt any benefit and any side effects while using it. But because of my high blood pressure problem,i didnt stop ..At 16 october while on Losartan my blood pressure increased to very high level(This is funny,isnt it).My doctor gave me another blood pressure drug and he suggested to continiue Losartan at same time.But i afraid of being on two different medicine of blood pressure and i stopped to using Losartan.After stopping it i began to falling again .While on Losartan, i never fall,i didnt stagger even one time and i was standing up more easily from sitting position and i was standing long time but i was not feeling tired and my feet are was more comfortable.After stopping i began to feel tired more quickly and my feet are began to swollen again.After again beginning to Losartan these problems decreased. Now i can say ‘cozaar is good thing for us..’
Umit (her son 5 years old DMD,He is on steorid since one year,he is on losartan under supervision of doctors,) We are on Losartan since 8 months.I think it has benefits.My son stopped walking on toes,he is walking well now and he is more enerjic and powerfull.After six months, our doctor said to continue it more six months.I think Losartan and deltacortril are working together more powerful.For my opinion (i said that to doctor and he is agree)Losartan blocking or decreasing the side effects of deltacortril also.While he was on only delatacortril he was aggresive but after Losartan these aggresive behaves cancelled.he didnt get any extra kilos after losartan...Before he was not able to jump,now he is jumping,he is standing from floor more easily, He was not wanting to move, he was playing at same place and at sitting position long time.Now he is triying to run and he is more active.I think all these things coming from losartan and deltacortril together.our doctor said that , with six months observations of losartan group, they are thinking Losartan have more benefits on muscles than their hopes .
E.Olcer(He is LGMD,37 years old and he is not ambulant) Hello my friends.I am on Losartan already 7 months.At the begining time i was hoping miracle and very fast effects.Now i know that, it is not miracle but it is good..Before it, while laying or sitting position at the bed i was not able to pull my legs even helping with my hands,(i lost this ability more than one year before)now i am able to do it again( of course helping with my hands ) .I am more active and more powerfull now.(This is reality, not psycological) .I am using special three wheel motorcycle.Before losartan , my arms was becoming very tired while driving it (even at short distances) and i was not able holding and driving the driving wheel for more distances...Now i am driving it at longer distances without any problem,without being tired.I am feeling i am a rally pilot and i am enjoying to drive it too much now.For my idea you have to support Losartan with active and passive exercises .
Emine(Her son is 8 years old DMD,They are on cozaar under supervision of the doctors)) My son is 8 years old.Before the cozaar he was walking on his toes and he was falling very often.After cozaar walking on toes completely cancelled,his fallings are now very rare.He was climbing stairs with help and very difficult this condition didnt change.And we didnt observe any side effect.
Yildiz (Her son is 5 years old Dmd,They are on cozaar under supervision of the doctors) We didnt observe any big difference.Dmd still didn’t effect too much him.For this reason observing something is very difficult.We didnt observe any side effect also.He is more active than before.Doctor suggested continue with Losartan..I have to say that,before losartan he had very big constipation problem and doctor said this problem coming from weak stomach muscals,but after the two months of losartan treatment it is cancelled.He is doing very well now.I think this is absolutely cozaar’s effect.
Hatice (Her son is 4 years old DMD) Hi, my son is 19.5 kg.He is on Losartan ,deltacortril and protandim.We are on Losartan since six months.My son’s fallings are completley cancelled.His walking on toes completly cancelled.He is more powerfull and active than before.But these are which one’s effect i cant say.Big possibility all three are have some effects.And he didnt get any kg. although he is on deltacortril.And we didnt observe any side effect.
Bilgehan (Her son is DMD,he is on cozaar under the supervision of the doctors) We are on Losartan nearly 7 months.We are on deltacortril too.My first observation is he is going w.c. more often than before.I think his stomach working better than before.I didn’t observe any difference at his muscles and his mobility.But he had swelling problem while he was only on deltacortril, after losartan this problem decreased too much.Our doctor suggested to continue at sixth month appoinment and we will continue with losartan more six months. Figens ( Her nephew is 5 years old DMD,they are on losartan under the supervision of doctors) My nephew was walking on his toes and he was falling very often.After the losartan both problem completly cancelled.He is walking very well now.He is more active.He is not on steorid and he is not on any supplement.For this reason i can say these completly effects of Losartan.We decided putting him on protandim also, but he didnt begin yet.
We have more mails from families.I choosed some of them.The others also more or less same.If i will read or hear different or important observations i will share them.My english not very well for this reason i translate them in basic english.But means not changed.
|
|
|
Post by MitchellsDad on Dec 18, 2007 0:28:15 GMT -5
Mugla, thank you very much for talking the time to translate those. It is nice to hear that other people have had similar experiences as my son. My son has been on losartan 8 months and he had dramatic improvements within a few weeks of being on the medication. He was able to run, jump, exit the tub unassisted, open large appliances etc. within a few weeks of starting the medication. Since then he has continued to improve and is much more confident and sure of himself physically. Since he was only 4 and 1/2 when he started losartan I was not sure how much was from normal growth and progression and how much was from the drug. Also, after 2 months of losartan in the morning I started him on protandim at noon. The combination seemed to help him even more than losartan alone.
Once again thanks for the translation and keep us informed of how the group is doing.
Glen
|
|
|
Post by MitchellsDad on Dec 20, 2007 1:55:36 GMT -5
Mugla, thank you so much for your translation. It was really nice for myself and a few other parents to hear that others are having the same experience as us. The losartan trial in boys by Dr. Cohn has not even started yet and by the time it is concluded and published I fear years will have passed.
Thank you again for your posts.
MitchellsDad
|
|
|
Post by varghakata on Jan 8, 2008 3:00:27 GMT -5
Dear Dr David. I am Katalin from Hungaria. My son has DMD,He was borne in 28-07-2001. Unfortunatly here the Drs has not any idea about this illnes,they recoment Q 10,Biocarn. I found Your website at sept,the we started take losartan 12.5 mg/day. My son still walk ,play..but He is quickly tired,his CK is more than 10 000 U/l. Please advice what to do ,increase losartan ? Start with Steroid or athor ? thanks your help Best Regards Kati
|
|
|
Post by David Feder on Jan 10, 2008 18:25:56 GMT -5
Kati: In my opinion you can increase losartan dose to 25mg but I believe that your son will improve more now with steiroid therapy. Medical evidence demonstrate that steroids can improve muscle function and for me is the best choice in this moment. David
|
|
|
Post by varghakata on Jan 11, 2008 5:37:17 GMT -5
Hi David. Thanks Your replay. Iam again Kati from Hungaria. Can You be kined to mail wich steiroid ? What the dosage ? For how many month ? My son is 22 kg. Best Regards
|
|
|
Post by David Feder on Jan 13, 2008 14:12:56 GMT -5
You need a doctor to choice the best option of steroids. You can see in medical literature that there are several options of steroids dose: deflazacort - 0,9mg/Kg prednisone - 0,75 mg/Kg - every day; other options: high dose weekend or 10 days inn and 10 days off. I will send you some articles about steroid therapy. David
|
|
|
Post by varghakata on Jan 14, 2008 8:51:25 GMT -5
Hi David. Thanks Your quick replay. Unfortunatly Our Dr is not able to meet,I dont know why. but its good feel that You are try to help. about the Steriod for how many years or month We can take it ? Thair is any side effect ? best regards Kati
|
|
|
Post by David Feder on Jan 15, 2008 4:38:27 GMT -5
Kati: steroids can be used indefinite time. My son use more than 15 years. Side effects: osteoporosis, cataract, high blood pressure, hyperglycemia, obesity, moon face, glaucoma, etc. David
|
|
|
Post by varghakata on Jan 16, 2008 11:25:36 GMT -5
Thank You David
|
|