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Old 02-04-2010, 05:19 PM   #31
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shar621 HB User
Re: I was diagnosed with Polymyositis

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Originally Posted by wagdomlet View Post
Hi all. I know a lot of you have been asking about the use of Imuran. I have been using Imuran for 3 years. It takes at least a year before it starts working. I take 50 mg three times a day. This is a controlled substance medication and every month when I get it refilled I have to get authorization from my HMO. So if you decide to be put on it remember to renew your prescription when you have at least 3 days left on it because sometimes if your pharmacy can't get in touch with you doctor you might not get the renewal right away. Also Besides by Rhemutologist I also go to a Neurologist. He put me on a number of different vitamins to take along with my medications. Also he said it is very important to watch your sugar intake. Although I don't use sugar I noticed that in everything you buy at the supermarket has suger in it. So be sure to read your labels. Steamed vegetales you buy in a bag for the microwave have loads of suger in them. I only buy fresh vegetables. You must read your labels. I try and buy products that only have 7 grams of sugar or less and 250 grams of sodium or less. They are not easy to find but if you read your labels you will find them. Also only use whol grain or whole wheat breads, pasta, etc. Your diet has a whole lot to do with this disease. I never thought it did but it does. I have also started physical therapy to keep mny muscles stretched and loose. It has not been easy because it is very hard for me to lift my legs to stretch my muscles and when I get home from PT I usually crawl into bed. But you need to have a goal to work toward. Make it a small goal at first and then go from there. My first goal is to just be able to walk up a curb without feeling any pain. Once I meet that I will do a second goal. Since I seem to have this disease longer then anyone who has written on this site so far (30 years) I have tried it all and done it all but it seems it always goes back to basics and trying any new medications that come out. Hopefully they will keep doing research on this disease and find something that will work for all of us and one day we can all communicate with each other and say we are in remission. GOOD LUCK TO EVERYONE AND FEEL GOOD ONE DAY AT A TIME.
Have you heard of a low dose antibiotic treatment?

 
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Old 02-04-2010, 06:07 PM   #32
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ricky roinila HB User
Re: I was diagnosed with Polymyositis

thank you for sharing your 20 years of expeariance with us all. i hope they have some new dorm of drug out there for us, but if it does come back to the old relyable drugs that we have to take, don't you find that the ammount of painkiller has to be increased? I tend to feel that three pills of oxicodine per day is way too low of an amount. after 2 years of this same amount i now take up to 10 a day when i really feel run down. all i really want is to be pain free to at least give me a shot at exercise or activity. when i am in pain i don't even want to get out of bed. can anyone recomend another form of pain relief, so i can ask my specilist on the 10th of jan for it. and if i ask for it, do they have to give it to me or is it up to thheir discretion even thought they don't know the thresh hold of my pain. thanks for your help. ricky.

 
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Old 02-05-2010, 03:29 AM   #33
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rahatj HB User
Re: I was diagnosed with Polymyositis

Dear Kvetcher,

5phoses is the name of the medicine. You need to consult your homeopath for the same.

He is not taking any other medication. He has been asked to desist from alcohol. His CPK is coming down by 50-100 points / 3 weeks.

As he has left steroids completely, he feels much better as there are no side effects that he was suffering from earlier.

Regards
Rahat

Last edited by moderator2; 02-05-2010 at 07:25 AM. Reason: please do not offer anyone's contact information

 
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Old 02-05-2010, 08:00 AM   #34
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kvetcher HB User
Re: I was diagnosed with Polymyositis

Hi Rahat

Many thanks for your very helpful reply.

We live in Spain so we're going to try to find a local Homeopathic Doctor who can provide treatment with the medication you suggested.

Kind regards & thanks again

Kvetcher

Last edited by moderator2; 02-06-2010 at 07:17 AM. Reason: please do not ask members to post against the rules

 
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Old 02-05-2010, 05:46 PM   #35
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Re: I was diagnosed with Polymyositis

Quote:
Originally Posted by ricky roinila View Post
thank you for sharing your 20 years of expeariance with us all. i hope they have some new dorm of drug out there for us, but if it does come back to the old relyable drugs that we have to take, don't you find that the ammount of painkiller has to be increased? I tend to feel that three pills of oxicodine per day is way too low of an amount. after 2 years of this same amount i now take up to 10 a day when i really feel run down. all i really want is to be pain free to at least give me a shot at exercise or activity. when i am in pain i don't even want to get out of bed. can anyone recomend another form of pain relief, so i can ask my specilist on the 10th of jan for it. and if i ask for it, do they have to give it to me or is it up to thheir discretion even thought they don't know the thresh hold of my pain. thanks for your help. ricky.
Hi, Ricky don't take too many pain pills a day its not safe. I know how much pain you are in I think we are all going through the same pain. I have resisted pain medications for years and have been just dealing with the pain but my doctor told me this week when I saw him that its time I stop resisting taking pain medication. He said all the other medication I am taking is just to control the inflammation. As far as the weakness goes that is something I will always have and that is not going to go away that is what this disease is all about and since there is no cure the only way to deal with the weakness that causes the pain is to take medication so I can function. He put me on two types of medication one is tramadol HCL which I take 3 times a day. The other is zonisamide which I take at bedtime to help with the muscle cramps at night and the pain that keeps me up. I just started taking them this week so I will let you know if they work or not. But please DON'T take more then the recommended dose of pain pills that your doctor tells you to. You have to keep fighting and don't let the disease beat you. We have to learn to beat the disease and maybe if we all keep encouraging each other and keeping track of each others progress we might be able to beat this disease together. Don't give up. Even when you think you can't move anymore just keep moving. Believe me after all the years I have this disease i know how easy it is to just want to say forget it and give up. But I am determined not to get beaten by a disease I know nothing about. If I can do it so can you. Keep the faith.

 
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Old 02-06-2010, 01:31 AM   #36
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ricky roinila HB User
Re: I was diagnosed with Polymyositis

rhank you for your encourafement, i think it came at just the right time. i agree with not taking more then told ,nut sometimes it just seemsthat the pills are not working and i am the only one who knows it. it's so easy just to say what ever and get mad at this desease, bbut i will ask my doc if i could try these pills, the sleeping one is the most important for me bedause i am a light sleeper to begin with and if i am uncomfortable forget it, i will be up all night and then be grumpy all day. what a vicious cycle that becomes. thanks again for your i,put, i will keep you all imformed. good luck and good night, of to bed to try that sleep thing i've hurd about again.ha.ha. ricky.

 
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Old 02-08-2010, 02:19 AM   #37
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ricky roinila HB User
Re: I was diagnosed with Polymyositis

have a great coming week to this merry band of people. question for you, which one of these drugs that have beenmentioned is the leaso likely to harm the liver, mune is fine but when 3 months ago i asked for oxicodine instead of octidine which they say is the same, but i know the differance and they said it would eat away at my liver.and how hard is it to get another doctor if mine doesn't want too try anything new and seems to just blow me off and come back in 4 months??

 
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Old 02-09-2010, 05:12 AM   #38
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shar621 HB User
Re: I was diagnosed with Polymyositis

Quote:
Originally Posted by ricky roinila View Post
have a great coming week to this merry band of people. question for you, which one of these drugs that have beenmentioned is the leaso likely to harm the liver, mune is fine but when 3 months ago i asked for oxicodine instead of octidine which they say is the same, but i know the differance and they said it would eat away at my liver.and how hard is it to get another doctor if mine doesn't want too try anything new and seems to just blow me off and come back in 4 months??
I guess you are asking about the antibiotic therapy/treatment. The drug that is use is pretty safe and is given in low dose. It is in the tertacycline family. Miocin, oxycycline it is in the same family. I went to my rheumatologist and he did not give me the prescription it was my dermatologist who gave it to me. He went to website and read it and said it would not hurt to try. I have only been on it for two weeks and i have to give it time to work. You should give it at least two months to see changes. You must demand to doctors and try several if you have to one may budge.

 
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Old 02-09-2010, 06:40 AM   #39
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Re: I was diagnosed with Polymyositis

Quote:
Originally Posted by sharimagia View Post
I guess you are asking about the antibiotic therapy/treatment. The drug that is use is pretty safe and is given in low dose. It is in the tertacycline family. Miocin, oxycycline it is in the same family. I went to my rheumatologist and he did not give me the prescription it was my dermatologist who gave it to me. He went to website and read it and said it would not hurt to try. I have only been on it for two weeks and i have to give it time to work. You should give it at least two months to see changes. You must demand to doctors and try several if you have to one may budge.
The pain medication I am taking tramadohl was given to me by my neurologist not my rhematologist. As to if it is effecting my liver I don't know yet. this is the first month I am taking it. When I go for my blood work in 2 months I will know if I can stay on it or not. I know when I was on other medication I had to get off it because it was starting to attack my liver. But my neurologist says this medicaiton is safe and don't see any problems. It does however make you feel like you are in a fog so don't take it if you have to drive

 
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Old 02-09-2010, 07:20 AM   #40
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ricky roinila HB User
Re: I was diagnosed with Polymyositis

thanks guy's for the info on differant drugs. tomorrow morning i go see my doc. I am taking my wife with me cause people listen to her and she is the best witness to my everyday life and stugle,I will inform you tomorrow on the outcome. But ne assured that i am going to inform my doc. about this puylet of suport and info that comes throught this web site, and how benifitial it is and could be in the future to the hospital, it's staff and it's patients. have a great day. ricky

 
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Old 02-09-2010, 10:31 AM   #41
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levek HB User
Re: I was diagnosed with Polymyositis

"Some patients taking tetracyclines require medical supervision because they can cause steatosis and hepatotoxicity" which are serious liver problems.

 
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Old 02-10-2010, 11:58 PM   #42
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duncan1 HB User
Re: I was diagnosed with Polymyositis

Tetracycline class antibiotics are commonly given for adult acne. 10s of millions of people have taken them for months at a time. Adverse reactions do occur and people should exercise due diligence in terms of blood testing for liver function. There might seem to be lots of reports of adverse reactions, but this only because of the extremely large numbers of people who have used this class of antibiotics.

 
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Old 05-28-2010, 12:24 PM   #43
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Re: I was diagnosed with Polymyositis

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Originally Posted by CROSTHWAITE View Post
Hi,

My name is Ken (64) and I was diagnosed with Polymyositis back in 2004. In 2002 I had a blood test which showed I had slightly high Cholesterol and was prescribed Statins. I then moved to a different area of the country and registered with a new GP and was given a routine blood test, which showed that my CK levels were abnormally high (1400). I was taken off the Statins and sent for various tests one of which was a muscle biopsy which showed that I had Polymyositis.

I was told that this condition was fairly rare (1 in 100,000 people) and was prescribed (Steroids). Over a period of time the dosage was increased to a maximum amount to which there was no improvement (apparently some people do respond to this medication). The (Steroids) were reduced to a lower dosage and when the lower dosage was reached I was given a drug (Methotrexate), again the dosage was increased over a period of time to a maximum dose, of which there was still no sign of improvement. It was decided to withdraw the dosage and in 2007 I was given a different drug, (Cyclosporine) and after two tablets they had an adverse effect on me making me feel extremely ill, giving me cold sweats, extremely bad headaches, vomiting and also made my blood pressure go sky high, I was taken off this drug straight away.

In April 2008 I was prescribed (Mycophenolate) which I am on at the moment, starting off at two tablets a day going up to five tablets a day. After about a month I began to feel extremely nausea for short periods of half an hour to up to two hours a day, it was suggested that I revert back to four tablets a day.

All the medication that a have been prescribed has not improved my situation, in fact in the last nine months or so I have noticed a more accelerated deterioration. My next meeting with the Medics is in February 2009 to discuss new medication, if there is any.

If anyone has any experiences with Polymyositis and any drugs that you are taking I would be more than grateful to here from you.

Regards,

Ken

hi ken a bit of time has gone by since your post ..do hope you ok.

i to do have Polymyositis and was on methertrexate-- but after7 months had to stop ..because of the upset tummy.
the pain is killing me and just no inflammations pills seem to work
.i have been to so many doctors and tryed so many diffrent medications but still in hope .

i once again am going to the physician next week to see whats new that he has learnt since my last visit .
today i have started a new medication but only on a tryel run --COXFLAM--

THE PAIN DOES SEEM LESS today but never lasts. i will update u on any new medications.
best regards v

Last edited by venesacvp; 05-29-2010 at 07:30 AM.

 
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Old 10-15-2010, 12:50 PM   #44
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toribird97 HB User
Re: I was diagnosed with Polymyositis

Hi Sharimagia, can you please tell me what the outcome was with the antibiotic treatment (did you try this). My mom has PM, I have read about antibiotic therapy online also and her doctor says that there is no study to show that this will help. It is so frustrating because I can see what it can hurt my mother has went thru all of the medications and has had no relief now she is getting worse. I am very interested to hear of your experience.
Thank you
Teresa

 
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Old 10-16-2010, 05:54 AM   #45
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shar621 HB User
Re: I was diagnosed with Polymyositis

Well i just started my treatment and it can be a slow progress. I don't have an appointment with my doctor until December and then i will do the blood work and i am hoping that my cpk numbers will continue to go down. You have to be aggressive with doctors. Many of them prefer to only go by conventional medicine and when you tell them about another remedy many of them do not want to go for it. I actually get my prescription from my dermatologist. He said it wouldn't hurt to try and he understood that I could not afford to go visit one of the doctors in California. Like I said be persistent or go to another doctor and bring the information with you. Good Luck!

 
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