Posted 09 December 2008 - 05:28 AM
My name is Wendi and I have a mother who has been diagnosed with Dermatomyositis. First off I would like to give my deepest thoughts to all of who you are suffering with both scleroderma, polymyositis, dermatomyositis, fibromyalga etc. I can't imagine would each one of you go through each day. But it is very commendable that you are all on here trying to help each other.
My mother was diagnosed back in the summer with dermatomyositis (DM). Now I know this is a sclero website forum however this is the forum I have seen that people have the same symptoms as her. She was hospitalized twice and put on high doses of prednisone which she does not care for. Along with the prednisone she was given a treatment of IVIG and taking methotrexate and plaquenil. She seem to be reacting good to all of that so she decided to go off everything and start living her life again prior to DM. However we all realize that was the wrong thing to do. Beginning of November she started back up again with the rash. So she went back on plaquenil 400mg, methotrexate one a week I think that is 15mg. And prednisone she has now tapered down to 10mg/day. But she doesn't want the IVIG she thinks that doesn't help and she said it is not a fun experience to go through. I can't imagine it is BUT I think it helped her before. How can I convince her otherwise?? Now we do have an appointment setup for this Thursday and Friday for the IVIG but she doesn't want to go. Also has anyone found anything to help with the skin it is really bothering her and and very painful to her. Nothing really seems to help but vasoline but you have to wrap wherever you put it cause it is so messy. One more thing has anyone ever had an allergic reaction to prednisone?? It seemed that her rash multiplied when she went on the high doses of prednisone! Any help would be greatly appreciated. She is really going through some psychological battles right now. I am assuming that is from the prednisone but she is already prior to DM been diagnosed with severe Anxiety! So I think Prednisone is making things way worse on her mental state. She really thinks that this disease is going to kill her! To put it bluntly...and we are trying to convince her that is won't....but unfortunately we (my father and I) aren't living through the pain so she really doesn't listen to us.
Again thanks for listening to me. It felt good to get this out here to actual people who suffer with similar diseases. Hopefully you can all shed some light on this. I appreciate the time you are all taking to read this. I look forward to talking with you all. Also if you think we are missing anything in treating her any input would be appreciated on that also.
I wish the best to all of you! And Happy Holiday season!
Wendi, from PA
Posted 09 December 2008 - 11:15 AM
I'm so sorry to read about everything your mother is going through. I really know how she feels about stopping all meds. I get that feeling sometimes, but have managed to fight the urge. I do have polymyositis along with sclero, so I can't help with your questions about the rash.
In reference to treatments, methotrexate took me to a certain level, then I plateaued. My rheumatologist added IVIg which I have now been doing for over 2 years. It's the only thing that gets my CPK to normal and that has stopped the muscle weakness. I do hate getting the treatments, but the results work for me. IVIg doesn't work for everyone so it isn't a cure all. If the other meds don't work for her, she should probably give IVIg another go. Sounds like she is taking a lot, so maybe wait on the IVIg and see if what she is already taking does the job. Hopefully she has a good relationship with her rheumatologist so she can talk to him/her about her concerns.
I was on high dose prednisone for a very short time, but yes - it make me cranky, crazy and just weird. So good for you in recognizing that the attitude is probably the meds.
Hopefully some of this has helped. There are others with PM and DM so hopefully they'll chime in. Please keep us informed as to how your mother is doing and what she is doing.
Hang in there Darlin'.
Big Hugs to you all,
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)
Posted 09 December 2008 - 12:05 PM
I have polymyositis, lupus, and scleroderma. I have been on methotrexate for a year now and it's worked really well. I've never had the IVIG treatment. From the different posts I've read on this forum, the IVIG works for some and not for others. Your mother could be right in feeling like it isn't helping her. She needs to tell her doctor how she feels about the procedure (as Janey says). I think the most prednisone I have ever taken is 20 mg a day. It made me anxious and also full of energy. I had the cleanest house in town. Couldn't hardly sit still to read a book!!!
Please tell your mother we're thinking of her and be sure to keep us updated on how she's doing.
Posted 10 December 2008 - 05:48 AM
Janey I am sorry to hear about everything you are going through too! It sounds like you have been battling a long time. You seem like a strong person keep it up! Thank you very much for your reply though!
We are taking her up to get the IVIG done tomorrow and Friday she is very very weak and her skin is really really bothering her so she did give into us to do another treament. I am suprise to hear you have been on IVIG that long her rheumatologist told her she would only need at the most 6 treaments...but my father and I do believe she is going to need more than that. I just have this feeling that the IVIG helped her a few months ago and that is way she felt better and went off all the meds. So I am hoping I am right. I really can't say if the methotrexate is doing anything or not it seems like such a low dose I can't imagine it would do anything but I know that it is a stronger drug. We were going to hold off until january to do the IVIG but she keeps getting worse. She has been back on all the meds I listed before for about a month and half now and it just doesn't seem like anything is working if anything she has gotten way worse! WIth her skin and muscle weakness she is having trouble doign steps right now. The rheumatologist we go to is about 45 mins away. She is a very nice Dr however too nice! She is very compassionate which is a good and different trait for a Doctor however she is not a very positive doctor which isn't good for someone like my mom to hear. She sympathizes more with my mom then actually telling her some positive notes ya know?? The other problem with the Dr is that she is a resident so everything she wants to do has to get cleared from two or three other doctors before she can actually give us a definte answer...which sometimes get to be a little irritating cause you have to wait a day or so to get just an "okay we can do this" We have looked into go for a second opinion but the next professionals with this disease is in Baltimore at John Hopkins which is about 3hrs away. Which is a lot of traveling with this disease. Did you ever get second opinions is that something we should consider doing??
Anyway thank you Janey for your response you have been helpful and reassuring! I wish the best to you! ANd I will keep you posted.
Christy, thank you so much for your response. I am sorry to hear about all you are going through also. But I am glad to hear that methotrexate has helped you! Do you mind me asking how much you were taking of it?? My mother I think is on 15mg/week. Which liek I said before doesn't seem like alot but I also know it is a strong drug. Yes I have also read where the IVIG has worked for some but not others. SO we are going to give a whirl. Like I said she is very weak and getting worse so I guess you can say we are all desperate to just try to soothe the muscle weakness at the very least! My mother when this first started she was given two infusions of predisone of a 1000mg a piece which to me was an extreme amount. We think (now we aren't doctors) that may have kicked her muscle weakness in gear because shortly after that her throat stopped working and she had a feeding tube in. Thank god that was short lived and she is back to eating normal. Right now she tapred herself down from 60mg/day to 10mg/day. We are hoping that maybe she can either stay at that level or completely go off the predisone all together. THat would be wonderful! It is odd how predisone affects people differently...I was on 60mg/day for a severe case of poison Ivy it worked great for me and I got better super fast....and forunately no side effects. You Christy were full of energy, janey said it made her cranky and just weird and my mom can barely walk up steps since she is back on it. And it makes my mom very strange and complete lack of energy. Strange drug!!!
Anyway thank you very much for your input you have been helpful. I am taking everything into consideration right in case this IVIG doesn't work. I will keep you posted on what happens. Take care of yourself!
Wendi from PA
Posted 10 December 2008 - 06:48 AM
Welcome to the Sclero Forums. I'm so happy you joined us, but sure sorry to hear about everything your mom is going through. I'm glad she has you, and I hope you can glean helpful information and support here to share with her.
Posted 10 December 2008 - 08:50 AM
I take 25 mg of mtx once a week by injection. I give it to myself under the skin. It doesn't go in the vein. Never thought I'd be able to do something like that!
Best wishes to you and your family.
Posted 10 December 2008 - 01:39 PM
I've just read this thread and wanted to say what a great job you are doing, sorting out the best care for your mum.
Remember that you can also post here for support for yourself which youy may need being as you're giving out so much to make sure someone else is cared for.
Why ever you post keep doing so and take care.
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
(Retired) ISN Sclero Forums Assistant Manager
(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)
Posted 11 December 2008 - 09:51 AM
Christy: Thanks again for your help on the methotrexate. When she first started on that she did do the injections but couldn't stand to give herself a needle so they but her on pill form which is what she is on now once a week. I know what you mean about can't imagine yourself doing that because I can't imagine myself giving myself a needle but when you need you will do anything I guess right?? Anyway take care!
Wendi from PA
Posted 11 December 2008 - 02:08 PM
Welcome to Sclero Forums! It's great to have you with us. I'm wondering if you've seen our page on our main site yet, Dermatomyositis/Polymyositis? If you find any helpful info there please let us know.
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099
The most important thing in the world to know about scleroderma is sclero.org.