so confused....
Just saw my rheumatologist. Never thought I would come out of there more confused then when I went in.
My dermatologist wants me to start Methotrexate asap. He said it would help with my pain and rash. My rheumatologist completely disagrees. He says the whole purpose of steroids and Methotrexate is to bring down your CK levels. My CK levels have been normal since starting the steroid. He ordered more lab work today and said if my CK number is still normal he sees no reason to start MTX. I have been having more pain since tapering off the steroid but he said that could be just from "steroid withdrawl" or could just be pain from the damage already done to my muscles before I started treatment. He said that could take a year or more to resolve.
He is trying to get me in sooner with the GI doc for my stomach issues from the steroid. He said if my CK comes back ok, he is fine with me doing a quicker taper off the steroid. I'm only on 8 mg now anyway and havent been on them for very long anyway.
So...I feel like at this point, (assuming my CK numbers arent creeping back up since tapering the steroid) I just have to live with the current pain I am in. If my CK numbers are normal, my husband wants to me to get another opinion. I just dont understand how my dermatologist and my rheumatologist can have such different opinions. ???
My dermatologist wants me to start Methotrexate asap. He said it would help with my pain and rash. My rheumatologist completely disagrees. He says the whole purpose of steroids and Methotrexate is to bring down your CK levels. My CK levels have been normal since starting the steroid. He ordered more lab work today and said if my CK number is still normal he sees no reason to start MTX. I have been having more pain since tapering off the steroid but he said that could be just from "steroid withdrawl" or could just be pain from the damage already done to my muscles before I started treatment. He said that could take a year or more to resolve.
He is trying to get me in sooner with the GI doc for my stomach issues from the steroid. He said if my CK comes back ok, he is fine with me doing a quicker taper off the steroid. I'm only on 8 mg now anyway and havent been on them for very long anyway.
So...I feel like at this point, (assuming my CK numbers arent creeping back up since tapering the steroid) I just have to live with the current pain I am in. If my CK numbers are normal, my husband wants to me to get another opinion. I just dont understand how my dermatologist and my rheumatologist can have such different opinions. ???
Replies
I think a second opinion would be helpful Angie.
Remember there is not standard, so your rhumatologist has no basis for what he is saying. CK is only one component of PM/DM. The specialists in this field from the TMA conference always treat symptoms, not lab values. It should not take a year to get rid of the pain, that is a bunch of wishfull thinking. The dermatologist is on the right path, ask him or her for a recomendation. Get to a Myositis center usually at a university medical center where they actually care and research Myositis. TMA can help you find one, as can the MDAssociation in your area. My Rheum did not want to treat me either with no CK values. I was down to 10 or 15 percent of my normal activity with breathing and swallowing problems. I got to stanford and they started treatment immediately. I have no pain, i am getting stronger slowly, and i see them every 3 months with labs in between and they are available by email if i need them. Thier support has been invaluable to me. This is a very rare disorder and there is no standard, so some doctors will treat you like a human and help you and some will only treat the lab values and that is not acceptable with this disease.
Good luck, Shawna
I agree that you need doctors that are familiar with your diseases and are willing to work together and not seperately. I too go with the second opinion and I\'m so sorry you\'re going through all of this:(
Blessings,
Kim
In my case methotrexate is going to take the place of the prednisone. I am tapering off prednisone, now down to 10mg a day, from originally being on 60. I would get a second opinion. I don\'t think there is any reason why you should be in pain when there is a possibility that by taking methotrexate you would feel much better.
i have a call into my dermatologist to discuss the drastic difference of opinion between him and my rheum. i dont want to start mtx if it isnt going to help my pain but how do i know which doc is right??
I agree that you need a second Rheumatologist opinion. Your Dermatologist sounds right. My CPK was never high at all, but I was started on Prednisone, Methotrexate, Plaquenil and Folic Acid almost immediately. I\'m tapering the Prednisone now and my rash has come back a little, but from reading on here I believe the MTX will be taking over for the Prednisone and will get rid of it.
Hugs,
Lauren
My dermatologist says he would start me on the methotrexate for the skin issues I have with my DM. He says it probably wouldnt help my pain from the muscle aspect. He thinks since my pain is worsening with tapering off the steroid that maybe I shouldnt be tapering yet but I explained that with my GI issues, I am having to taper. My GP already thinks I probably have an ulcer and the longer I am on the steroids, the more likely it will perforate causing a whole other set of problems. Basically, it seems no one can help me with my pain which has me very discouraged at this point. The rash? Sure...I wish it wasnt there but I\'m not sure I\'m ready to go on a serious drug like MTX JUST for a rash. I\'m just so discouraged right now.
Angie, remember you may be discouraged and overly emotional with the rapid taper of the steroids. This is never easy. I wish you some calm so you can try to make some choices. The Methotrexate does not work for 6 to 8 weeks and if by then you are off the steroids and your rash goes away, you can stop that. I am so sorry you are suffering so much and have doctors who can\'t agree. That makes it so much harder.
Sending you strength and a pain free day.
Shawna