[StephLuvsMichigan]

I need some advise about prescriptions im taking. i have a laundry list of them for a Autoimmune disease i was diagnosed with. i am wondering if all these meds are really necessary? many of them are addictive and i dont want to take them if i dont have to.

[Robert_325]

Originally Posted by StephLuvsMichigan

I need some advise about prescriptions im taking. i have a laundry list of them for a Autoimmune disease i was diagnosed with. i am wondering if all these meds are really necessary? many of them are addictive and i dont want to take them if i dont have to.

I have three autoimmune diseases ( RA, Raynaud's Phenomenon, and APS .. Antiphospholipid Syndrome) and have moderated two autoimmune disease forums over the last eight years. Tell me what your illnesses are and what medications you are on including doses, frequency and for how long on each of meds. God bless.

[StephLuvsMichigan]

i was diagnosed with Mysasthenia Gravis in Feb of this year. it has been really hard for me, i am only 30. i understand this is a controllable disease, but it has been a long process. i am on Mestinon (300mg/day) for they MG symptoms, Prednisone (started at 60mg per day, and have tapered to 15mg every other day since march. i did end up with pneumonia this week and was in the hospital for 3 days. they have dosed my prednisone back up to 50mg per day for 3 days, 40mg for 2 days, 30mg for 3 days, 20 mg for 3 days until i see my neurologist.) i have been put on ativan (.5mg 3x per day) for anxiety, also klonopin (.5mg 2x per day), calcium and vit d while im on the prednisone so i wont suffer bone loss, lexapro (20mg per day) for depression, also i am on percocet (5/325 i take 2 every 4 hrs for severe joint pain from the steroids. i was also given trilisate (750mg 2x perday) forr the joint pain. since i got pneumonia i have been put on an albuterol inhaler, omnicef (300mg 2x perday for 9 days) and zithromax (250mg per day for 5 days). i guess im just thinkin this is ALOT of meds to be on.
i know the percocet, ativan, and klonopin can be very addictive. i am struggling with anxiety and depression since my diagnosis and i just want to make sure im not gettin in over my head. i appreciate your input robert

[Robert_325]

Some of that medication is for the pneumomia obviously but it's still several medications. Unfortunetly most autoimmune problems are a guessing game for drs to a great extent. Let me check a couple of resources and I will post back. Don't want to say the wrong thing here. I will get back soon.

[StephLuvsMichigan]

Originally Posted by Robert_325

Some of that medication is for the pneumomia obviously but it's still several medications. Unfortunetly most autoimmune problems are a guessing game for drs to a great extent. Let me check a couple of resources and I will post back. Don't want to say the wrong thing here. I will get back soon.

thanks robert. i do want to say that i have been on the percocet for awhile. i had a lumbar fusion in dec of 07. then in july, i had a thymectomy for the MG and was given percocet again. i was on the percocet for about 6 months before the surgery in dec, and have been on it ever since. i actually started out on vicodin, then went to the percocet after the surgery. with both surgeries so close together, i never got off the percocet, and they kept me on it for the severe joint pain i am having now due to the steroids.

[Robert_325]

Originally Posted by StephLuvsMichigan

i was diagnosed with Mysasthenia Gravis in Feb of this year. it has been really hard for me, i am only 30. i understand this is a controllable disease, but it has been a long process. i am on Mestinon (300mg/day) for they MG symptoms, Prednisone (started at 60mg per day, and have tapered to 15mg every other day since march. i did end up with pneumonia this week and was in the hospital for 3 days. they have dosed my prednisone back up to 50mg per day for 3 days, 40mg for 2 days, 30mg for 3 days, 20 mg for 3 days until i see my neurologist.) i have been put on ativan (.5mg 3x per day) for anxiety, also klonopin (.5mg 2x per day), calcium and vit d while im on the prednisone so i wont suffer bone loss, lexapro (20mg per day) for depression, also i am on percocet (5/325 i take 2 every 4 hrs for severe joint pain from the steroids. i was also given trilisate (750mg 2x perday) forr the joint pain. since i got pneumonia i have been put on an albuterol inhaler, omnicef (300mg 2x perday for 9 days) and zithromax (250mg per day for 5 days). i guess im just thinkin this is ALOT of meds to be on.
i know the percocet, ativan, and klonopin can be very addictive. i am struggling with anxiety and depression since my diagnosis and i just want to make sure im not gettin in over my head. i appreciate your input robert

The main things that I wanted to check were the maximum recommended doses on a couple of the medications as well as some of the possible interactions between the different medications. I would suggest first off that you take advantage of this web site's med notes feature and also the drug interactions checker feature. I used drugs.com for some time prior to ever posting on the forum. I have had as many as 14 prescriptions at one time with my different chronic illnesses. You can maintain an ongoing list of RX medications here and add or subtract them from your list as they change. You will always have up to date information regarding all interactions and relavant information. It's a great benefit for people with illnesses that require them to be on numerous medications especially. You can find these features at the top of this page. Check it out.

Myasthenia Gravis (MG) is a strange disease as are most autoimmune diseases. There are no known cures for autoimmune diseases and the body's natural defense systems actually attack the body.

To explain MG as simply as I can the brain sends nerve impulses throughout the body to where nerves meet muscle fibers. There are receptors at the muscle fibers that receive the nerve impulses. In people with MG there can be as much as 70-80% fewer receptors than in a normal person who is not affected. The reduction in receptors is due to an antibody that destroys the receptor sites. That is not a very detailed explanation but that is the best I can do without going into much more than what would serve a purpose here. Because these receptors don't receive all the nerve impluses those affected with MG can have slurred speech, chronic muscle fatigue, weak arms and legs. In more serious cases it can cause difficulty chewing and swallowing and even breathing. A more common symptom is a drooping eyelid. That is actually one of the first symptoms most commonly noticed and used for a suspected diagnosis. I don't know your medical history in detail but sometimes pnuemonia can be a recurring problem with MG.

When I did a check on your medications they really didn't look that bad to me considering all the facts. The mestinon is a med specifically for MG. It aids in the communication problems I described at the receptor sites. Your dose is not a high dose. It could be twice what you take and still be well within the recommended limits. The trilisate is a pain medication that helps with inflammation. I have taken it myself with the arthritic problems I have. That is where it's used most often. Again your dose is not high at all. I have taken a much higher dose than what you take. Without it you would likely be taking more percocet or some other narcotic. Unfortunately most all of us with autoimmune diseases end up on prednisone at one time or another. I have taken it on and off for years. I have been on 60mg a day and 15mg a day just like you. The way you describe the doses going up and down is pretty much normal. The recent changes are due to the respiratory problems so don't let that concern you. Prednisone is NOT my favorite medication at all. It has all kinds of unpleasant side effects and I always try to keep it at a minimum. The side effects are why drs are most always trying to taper us down like you describe after any time we have to take more.

The remainder of your medications like ativan, klonopin, percocet and lexapro are all medications that are certainly not specific to MG or any autoimmune diseases in general. They are what I would call meds that improve your quality of life only. They don't fix anything that is life-threatening and they all have potential dangers. Their doses and frequency of them being administered are all just judgement calls that I couldn't make at all. There are potential drug interactions with all of them between each other. They can all each affect how your other medications listed above work as well. None of the doses you mention are way out of line. Like I said it becomes a quality of life issue more than anything. You complain about something and the dr tries to RX something that will affect that specific symptom. It's a never ending battle.

I seriously would run a drug interaction checker myself if I were you and keep it logged in the web site. Then as your meds are adjusted you can track them here so you know exactly what is happening at all times. I don't think that I would be overly concerned with your meds considering the illness problems that you have. I am not a dr at all and that is only my opinion. Please understand that. I do always suggest being prudent about medications and become knowledgeable. If you don't look out for yourself no one else is going to. Most of what I originally learned about medications and different illnesses was due to my own circumstances. I like to know what drs are doing to me. I hope this helps you some. I know how frustrating all this can be especially when we have an illness or illnesses in my case that the dr know nothing about fixing. All they can do is RX meds symptomatically. Think about that and understand how frustrating that has to be for the dr as well. Good luck and God bless.

[StephLuvsMichigan]

wow. thanks you so much for all the checking that you have done. Since my diagnosis, i have read every article, online page, and medical journal i could get my hands on to try and help me understand my disease. i am also very fortunate to have excellent doctors who really care about me, and care about the fact that i understand what is going on.

i did take your advice and filled out the med notes. that really makes things easier, and its nice to be able to print it off to take to dr. appts. thanks for that tip.

i think that hardest part of this whole medication deal has been the steroids! i swear the devil invented them himself just to make people miserable. i know that for the rest of my life i will have to bee on and off medications, but i just hate what the steroids do. i did opt for the thymectomy in july, but the down side to that is that it can take years for a full remission to occur after having the surgery.

it is so frustrating, especially like you said, there is no cure, only medications and treatments for the symptoms. its managable, but not curable. i have tried to locate a support group, but i live in a very small rural area, and havent found one anywhere close. i am sure glad that i found this website tho, it holds a wealth of knowledge, and i have been using it to the my advantage.

i really appreciate your input on all of this. i have a loving husband, 2 small boys, and a wonderful family who support me. but they can never truly know how it feels to go thru something like this. i do have an uncle with Chrohns who i talk to alot, and that helps. at least he can feel my pain. its hard for anyone who doesnt experience it first hand to really understand the emotional and physical things that a person goes thru.

again, thank you for all your input. it has been very valuable.

[Robert_325]

Just in case you are not aware of it there is an excellent web site specifically for Myasthenia Gravis. It's the Myasthenia Gravis Foundation of America web site. Go to www.myasthenia.org. It has lots of good information about your disease including medications, treatments, etc. I first ran across it a few years ago when I was researching your disease for another person who was also afflicted. God bless.

[StephLuvsMichigan]

thank you. i have that one bookmarked on my computer! i also found a wealth of knowledge at www.mayoclinic.com. I was actually diagnosed in Rochester MN at the Mayo Clinic. What a wonderful place god has created to help so many people!

[StephLuvsMichigan]

i have been reading about this CellCept. it is an imminosupressent mainly used to help fight organ rejection. I was wondering if you have ever heard of if being used for an autoimmune disease? it doesnt seem to have near the side effects of the corticosteroids, but i need to research further. just wanted your opinion.

[Robert_325]

Originally Posted by StephLuvsMichigan

i have been reading about this CellCept. it is an imminosupressent mainly used to help fight organ rejection. I was wondering if you have ever heard of if being used for an autoimmune disease? it doesnt seem to have near the side effects of the corticosteroids, but i need to research further. just wanted your opinion.

I have heard of it for use with organ transplants but am not familiar with it's use with autoimmune disease. That doesn't mean it isn't an option though. I don't know about everything by any means. I will have to do some reading on that one.

The Mayo Clinic web site has been a favorite of mine for years. I have picked up so much information on that site. It's one of the first places I go to check out an illness I am not familiar with. And I agree that the Mayo Clinic is a gift. So many people are helped there with our related illnesses. God bless.

[StephLuvsMichigan]

Originally Posted by Robert_325

I have heard of it for use with organ transplants but am not familiar with it's use with autoimmune disease. That doesn't mean it isn't an option though. I don't know about everything by any means. I will have to do some reading on that one.

The Mayo Clinic web site has been a favorite of mine for years. I have picked up so much information on that site. It's one of the first places I go to check out an illness I am not familiar with. And I agree that the Mayo Clinic is a gift. So many people are helped there with our related illnesses. God bless.

I need to read sum more about this cellcept, but i thought maybe i would ask my neurologist. i have an appt on thurs for my 3mo med check. i was also admitted to the hospital last tues for resp. failure. one of the many downsides to MG. i had sever pneumonia, and had to stay until friday. i have to go see him and see about an adjustment on some of my meds. i just thought i would see if you knew anything about this cellcept.

the mayo clinic website is extremely wonderful. i learned so much about my disease. the doctors there were the best doctors i have ever had. my family dr actually sent me there when my symptoms first started. my husband took me to the er because he thought i was having a stroke. my speech was slurred, i had the droopy eye, and i couldnt swallow. my family dr. was on vacation the following week, but while he was on vacation, he made phone calls to the mayo clinic and to my insurance to get me in within 6 days. usually there is a waiting list. my neurologist that i work with now did his residency there, and is now at the university of nebraska medical center in omaha and manages my care. they are all just fabulous!

[Robert_325]

Originally Posted by StephLuvsMichigan

I need to read sum more about this cellcept, but i thought maybe i would ask my neurologist. i have an appt on thurs for my 3mo med check. i was also admitted to the hospital last tues for resp. failure. one of the many downsides to MG. i had sever pneumonia, and had to stay until friday. i have to go see him and see about an adjustment on some of my meds. i just thought i would see if you knew anything about this cellcept.

the mayo clinic website is extremely wonderful. i learned so much about my disease. the doctors there were the best doctors i have ever had. my family dr actually sent me there when my symptoms first started. my husband took me to the er because he thought i was having a stroke. my speech was slurred, i had the droopy eye, and i couldnt swallow. my family dr. was on vacation the following week, but while he was on vacation, he made phone calls to the mayo clinic and to my insurance to get me in within 6 days. usually there is a waiting list. my neurologist that i work with now did his residency there, and is now at the university of nebraska medical center in omaha and manages my care. they are all just fabulous!

Most everyone who has MG gets that droopy eye thing. Thats the most common symptom I know. I mentioned the chronic respiratory problems before as that is something that needs to be watched closely in your situation. You don't need to be coming down with pneumonia repeatedly. That is a bad illness for you to be dealing with considering the MG. Your symptoms when going to the ER were classic MG. They are often mistaken for a stroke. Let me know what you find out about the cellcept. I am always interested in hearing some first hand experience on autoimmune disease treatments especially. God bless.

[StephLuvsMichigan]

i dont think cellcept can be used for what i thought. i have been looking it up, and i dont think it would be an option for immunosupression in my case. oh well, it was worth looking into. if you find something different, please let me know. thanks robert

i am going to ask my neurologist just out of curiosity tho

[Robert_325]

Originally Posted by StephLuvsMichigan

i dont think cellcept can be used for what i thought. i have been looking it up, and i dont think it would be an option for immunosupression in my case. oh well, it was worth looking into. if you find something different, please let me know. thanks robert

I was questioning it myself with what limited knowledge I have about cellcept. That is why I couldn't give you any advice. I don't like to say NO though as new off label uses are found all the time for medications. I certainly don't keep up with them all. God bless.

[StephLuvsMichigan]

thanks for all ur advice and knowledge. u really seem to know what u r doing, and i see alot of people on these boards benefit from your knowledge. i see my neurologist tomorrow, to figure out a new taper for the prednisone, and just for my own curiosity, i am going to ask about the cellcept, or any other treatment that might be an option for me. thanks again robert

[Robert_325]

Originally Posted by StephLuvsMichigan

thanks for all ur advice and knowledge. u really seem to know what u r doing, and i see alot of people on these boards benefit from your knowledge. i see my neurologist tomorrow, to figure out a new taper for the prednisone, and just for my own curiosity, i am going to ask about the cellcept, or any other treatment that might be an option for me. thanks again robert

Let me know what you are told about the cellcept. I am always interested in hearing something new about autoimmune disease treatments. God bless.

[StephLuvsMichigan]

Originally Posted by Robert_325

Let me know what you are told about the cellcept. I am always interested in hearing something new about autoimmune disease treatments. God bless.

well, i went to see the neurologist today. we were right about the cellcept, it would not work in may case. it targets a specific antibody, one that is not an issue in my MG. anyways, i am tapering bak down the steroids after the pneumonia bout, and will be bak at 15mg QOD by the end of december. i will stay on that dose till feb, then i will go back and see him. he said at that time, if there are no more infections, and my levels stay good, i can go off them completely at that time! hooray!! i cant wait till feb!

[Robert_325]

Originally Posted by StephLuvsMichigan

well, i went to see the neurologist today. we were right about the cellcept, it would not work in may case. it targets a specific antibody, one that is not an issue in my MG. anyways, i am tapering bak down the steroids after the pneumonia bout, and will be bak at 15mg QOD by the end of december. i will stay on that dose till feb, then i will go back and see him. he said at that time, if there are no more infections, and my levels stay good, i can go off them completely at that time! hooray!! i cant wait till feb!

That's good news about getting off the prednisone. I hate it. I haven't taken any now in about 8 months. But I did recently refill my prescription as winter is approaching. I haven't had a winter free of prednisone in years. I am hoping this will be my first. But I am prepared either way. Take care and God bless.

[StephLuvsMichigan]

Originally Posted by Robert_325

That's good news about getting off the prednisone. I hate it. I haven't taken any now in about 8 months. But I did recently refill my prescription as winter is approaching. I haven't had a winter free of prednisone in years. I am hoping this will be my first. But I am prepared either way. Take care and God bless.

i had my bout of pneumonia for the year, so hopefully i got it out of the way and i am set for winter. i have been on the prednisone since march, so i am anxious to get off. i hate what they do to me. it will be the first time i am off them since my diagnosis. thanks for all your advice robert. you have been great!