Hi All,
Went yesterday to my rheumy appt. Not so sure what to think. I'm feeling really blue today.
He's boosting the MTX to 25 mg, which he says is the highest you can be on. I'm really losing my hair at 20, so not thrilled to go up. However, I am trying to lower my prednisone and I'm in pain and tired, etc.
I was DX'd last December. I had hoped I'd be a lot better if not closer to "my old self" by now. Instead, I'm fatter, still stiff, still have pain, still tired, etc. In addition, I'm going bald.
What's the point, ya know? Some days I feel like chucking my bag of medicines out the window but without all my pills I can't function. It sucks that I can only have "limited" alcohol every now and again, sucks I don't have the energy to do the things I want to, just plain ol' sucks.
Okay, whine whine whine, sorry. But at what point do things "click"?
Hi, this suff does this to us!, my gosh I'm so sorry you aren't feeling better. Perhaps, the doc can add something else to your 'cocktail', of meds?!
I know how you feel when the meds aren't working, you are taking these scary drugs, and don't know what to do?! My doc says, 'your hair will grow back'! i hope he is right. I had a a bit come out when I colored my hair today!! ugh.
Please be patient, don't lose hope and ask if you can have something that works better for you! I understand how you feel. I've been on Remicade since MARCH and it is just starting to help me.......
Lynda
Sorry Debrakay...I wish I could say, but they haven't clicked for me and I have been at this since Feb. I am so sorry the disease seems to be winning. Debra, this is when I wish I had a magic wand to wave over all of us in here and make us healthy again. It's unbelievable to me that we can put men on the moon, but for RA patients there is only a series of increasingly toxic drugs being offered, that eventually fail in treating this relentless, chronic illness. And our only hope is that we can "click" (great phrase) and gain relief for X amount of time, and then on to whatever next drug combo the medical doctors will give us in a stab at the dark, as they know too its a failing situation. Or we wait patiently and hopefully to be that one in a million "total remission" patient. This is truly one day at a time stuff, and I am glad you shared and vented. This should be a safe place for us to do that, and though it doesn't change your situation, at least you could put your fears into words. I personally find the lack of urgency to find the cause and cure for this disease very disturbing. Thanks for listening to me!!! I try so hard not to be negative, but must admit, today I have stayed in bed all day and had tears in my eyes for most of the day. I just took a shower and I'm going to push myself to go out to a buddies house and watch The Red Sox. It will be a great night, but I'll be the only one without a few martinis under my belt. I may just have to have a glass of red wine tonight...I'm in need. Thanks again for listening to me. Hi Deb, ya know that does 'really suck', not being able to have a few drinks with your friends. Giving up alcohol must be terribly difficult. We give up so much! I just read though, it can be dangerous to drink alcohol and take methotrexate? Please, be careful. Lynda
< =text/>_popupControl();
Debrakay...so sorry to hear of your news of boosting the mtx. I am really losing my hair too. What you might want to think about doing is talking to your hair stylist and coming up with a style that can "hide" so to speak the hair loss. There are also shampoos that can help with the hair loss. Are you on anything else besides the mtx? Like a biologic? Humira...Orencia..Enbrel..anything like that? If not, have you talked with your rheumy about adding a biologic? Sometimes the mtx and biologics work better together. (((hugs))) to you hunny and hang in there. We are here for you!! Sorry Debra.....I hope things get better for you soon. These disease is a horrid, terrible thing to deal with. I wish I had something better for you to say or do. Just hang in there, you can do it! I would call about some pain meds if you don't already have them. If you do, TAKE SOME! Gramma, I did ask the rheumy if we should be adding something into the mix or MTX and Prednison since I'm trying to taper the Prednisone, his answer was to boost the MTX which he said he planned to do anyway. He held off on this because of my hair loss. He is upping my dose of Leukovorin a lot, going from 20 mg to 50 mg to hopefully slow or stop the hair loss. Seems like a high jump but what do I know. He also said for me to call if I have an issue with the 25 mg. MTX and we'll be forced to go to a different medication. What it is, I haven't a clue. I think I was too bummed out to ask. Dumbass me. On a side note, I did go to my buddies to see the Sox, he has a 110" flat screen high def. TV.....all my friends were there, but I was the only one to leave at 11:00. I couldn't believe it, I just couldn't stay any longer. I had to go to bed. The beauty of the Prednisone, I eat from 8 pm to 11 pm....rasberry squares, apple pie, a piece of pizza, popcorn and cheeezie puffs. Now that's depressing, lol!!!!!!!
< =text/>_popupControl();
I know the feeling about the pred munchies. I munched last night too lol. I have to say that I would kind of question more in depth why your rheumy is not adding a biologic to the mtx. If the boost to 25mg does not make a difference for you, I would think about calling your rd and asking him why he is not adding a biologic. For *most* people, mtx and biologics go hand in hand. They just work better with each other. Remicade is a real good example of that. Don't get down on yourself for not asking what the med is that the rd would switch to. Sometimes when we just have had enough, things like that slip our minds. You can always call and find out. Eh, so you had to leave at 11. At least you went out for a bit!! It doesn't matter when you left...what matters is you went out..had a bit of fun..and forgot about everything for a bit. As far as the alcohol goes...can't really say too much about that since I didn't really drink in the first place I have nothing to miss lol. Just keep it in moderation like everything else in life and I'm sure you will be ok. As long as your labs for your liver keep coming back normal, there really is no reason not to have alcohol in moderation. As long as you aren't on any other meds that really strictly say no alcohol. It can take awhile to get the right combo of meds to treat this. It can be very frustrating. But you have a safe place to vent here with people that care and understand! Debrakay, I'm so sorry you are down. I can relate. There have been many times, I've "hid out" in my bed and cried. Sometimes I think RA is a Master at depression. I've only been on MTX since July and I'm losing my hair too. I just increased to 15 mg on Friday. My husband commented yesterday about how often the shower drain gets clogged because of my hair loss. I find it odd that Rheumatologists are so different. My RD said if I didn't have a good response by 15 mg he wasn't going to try and increase, he was just going to add Enbrel. Hey, wasn't there a woman on this board that said she started having hair loss on MTX and then after a while, her hair got thicker and curlier? That's what I'm hoping for!
Copyright ArthritisInsight.com