I worry about all the medications I am taking, each doctor adds another one. I have decent doctors and they are all connected by computer now so they can see all that I take. Here's the list, first:
predisone (started at 20 mg now down to ten) added,plaquenil, then methotrexate , now gabapentin. and a pain medication. My liver must be catching hell. Don't know if anybody else is having the same uneasy feeling. I don't see in the forum much about medication for Dm.
That doesn’t seem like a lot. How long have you had it? Do you take vitamin D? Do you have lung involvement? I’ve had Mtx, Prograf, Cellcept, Imuran, IVIG, Prednisone, N-A-C, Vicodin, Gabapentin, lots of other pain meds, etc.
I understand how you feel. It is a lot compared to a healthy person! I'm on the same except the gabapentin, plus like LegoGal I'm Imuran, Vicodin, had IVIG, Rituxen, plus many other meds I don't need to go on, but I think you get the point.
I get my bloodwork tested pretty regularly for Liver function and I hope that your doctor is testing yours also! We have decide which is worse, the disease, or the side effects of the meds we are taking! It's terrible! But long story short, I do feel uneasy too. You are not alone.
I hope you didn't take what I said as belittling at all, even though you may take a little less medication than some right now, that doesn't make it any less concerning. It's very concerning.
I hope that we can all be off of all harmful medication one day!
I'm glad you're in this group!! It's great to have people to talk to who understand!
I have a hard time with this site too, especially at the beginning. Luckily I've had people help me out because it can be very confusing! If you ever have any questions just ask! I do a lot on facebook, not so much on here.
I figured you were at the beginning since you weren't on many meds, I hope you don't have to go on many more and that the ones you are on do the trick.
I started treatment in April 2012, prednisone 60 and Methotrexate 25mg. Now I'm down to pred 10mg and still Metho 25mg with Imuran and the two Rituxan treatments. Along with anything else they've thrown my way. I'm still in a "flare". But I'm not like I was when I was first diagnosed, so that's good. I was unable to do anything at all and now I can get farther and no longer look like the stay puft Marshmallow man. So there is hope.
No, not at all, it's whatever you want to do. I belong to a few different groups. They are really great. I figure the more support the better!
Here are the links if you are interested: (I labeled which ones are private and open, the private are private so you don't have to worry about friends and family seeing what you post)
The myositis Ramblers
https://www.facebook.com/groups/109789991650/ (Private Group)
Dermatomyositis
https://www.facebook.com/groups/118333201479/ (private Group)
Dermatomyositis and Polymyositis Patients
https://www.facebook.com/groups/201461863232077/ (Private Group)
Fight Myositis
https://www.facebook.com/groups/2296244717/ (Open Group)
Support for Dermatomyositis and Polymyositis Patients
https://www.facebook.com/groups/10112679261/ (Open Goup)
Hi there!
I often struggle with the amount of medication that I am on, too. I would probably benefit from taking some additional meds for my own comfort, but I'm too scared, and my Dr. knows that. We chat about it every few months to be sure that I'm okay and that we're on the same page. My rheumatologist and primary care Dr. (handles my fibro) chat every now and again as well which is really great. I take the responsibility of reminding them to talk, when I'm in for appointments.
As long as your doctors are monitoring your liver counts and other organs that could be affected by the medication, you should be okay - just be sure to know about any things that you can also do to help - for example, with DM, we are more susceptible to skin cancer and many of our medications can cause increased sun sensitivity - so be sure to wear a great sunscreen.
One thing that I try to remind myself is that of my quality of life. For me, if I fight my pain too much, or for too long, that really affects my emotional well being. I am doing myself a great disservice by not taking meds that can help me feel better and enjoy my life. It's tough though, and you are certainly not alone in this struggle to accept it all.
Nichole - thank you for sharing the FB groups! I knew that you had joined a few, but was having a hard time finding them!
To our health! Hope you two are enjoying your summer!
XO
No problem Maren, I didn't notice if you have joined them yet, but if you do I hope you find them as friendly and helpful as I do!!
Maren Holzinger said:
Hi there!
I often struggle with the amount of medication that I am on, too. I would probably benefit from taking some additional meds for my own comfort, but I'm too scared, and my Dr. knows that. We chat about it every few months to be sure that I'm okay and that we're on the same page. My rheumatologist and primary care Dr. (handles my fibro) chat every now and again as well which is really great. I take the responsibility of reminding them to talk, when I'm in for appointments.As long as your doctors are monitoring your liver counts and other organs that could be affected by the medication, you should be okay - just be sure to know about any things that you can also do to help - for example, with DM, we are more susceptible to skin cancer and many of our medications can cause increased sun sensitivity - so be sure to wear a great sunscreen.
One thing that I try to remind myself is that of my quality of life. For me, if I fight my pain too much, or for too long, that really affects my emotional well being. I am doing myself a great disservice by not taking meds that can help me feel better and enjoy my life. It's tough though, and you are certainly not alone in this struggle to accept it all.
Nichole - thank you for sharing the FB groups! I knew that you had joined a few, but was having a hard time finding them!
To our health! Hope you two are enjoying your summer!
XO
I feel very uncomfortable about my medications. I'm was on an anti-nausea medication for the effects of the methotrexate (metoclopramide) then I got a call from my doctor this week saying I had to come off it and try another as there'd be an official warning put out about the drug as it had been seen to have strange nerve effects on patients. Apparently youre not supposed to take it for more than 5 days, Ive been on it 6 months.
Im coming off prednisolone in October and hoping to try coming off Methotrexate next April and I cant wait, I hate them, yet I have to be grateful to them for my life too, just hope they dont do any permanent damage.
Wow Susie, that's scary!! 6 months, have you seen any strange side effects that could be from the drug?
I will be crossing my fingers for you and hoping for the best with the dropping of the meds! Good vibes coming your way....
Oh and by the way, Halloween is in October, what will you be dressing up as? ;-)