Guest guest Posted October 25, 2006 Report Share Posted October 25, 2006 I was on MTX for 2 years with no hair loss. Sierra --- In , " tornsparrow " <tornsparrow@...> wrote: > > This group has been great so far. All of you are wonderful, in my > opinion. But now I'm sincerely worried about Methotrexate, which I am > assuming is what " MTX " stands for. It sounds like anyone who's used > it is having hair loss problems. Is this what's going to happen to > me, or is anyone out there NOT having this dreadful side effect? > I'm living in terror that my RA is going to get worse and I'm going to > wind up in a wheelchair, alone, having to rely on others to help me. > I cry so much it's pathetic. > Right now, it's mainly my legs giving me trouble - especially the > knees. When I'm laying down, as soon as I try to bend them, they feel > as though someone is trying to rip my knee caps off... > I guess my main questions are: 1.) is hair loss inevitable? 2.) has > anyone's RA ever gone dormant after a certain medication? 3.) has > anyone ever had suicidal thoughts over going from being physically > independent to being badly handicapped? (I'm not there, but I'm > curious.) > Any kind of response would be greatly appreciated... > Thank you. > " Sparrow " > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2006 Report Share Posted October 25, 2006 Hi Sparrow, I know all of your fears and they are all valid and common to most of us. Firstly, the Mtx issue - side effects are generally dose dependent. I started at 10mg for 3 months, then 15mg for 3 months, now 20mg for the last 2 weeks. The increases made me feel awful for the first week each time, but it gets better. I have not yet experienced hair loss. My Dr has always given Folic Acid 5days/week alongside Mtx to circumvent some of the more serious side effects. Even with dose increases everyone responds differently. The drawback with this is that it takes up to 3 months to tell if the new dose is effective each time...sigh. I have got by with Prednisolone but have recently stopped this - now that I am on 20 of Mtx I feel it is worth it to see how I really am with the gloves off. I guess that the best thing is to " suck it and see " (Mtx). Be positive - you may well be the one who has no side effects at all! Secondly, your fears/depression - this is understandable and valid. I went through a huge depression for 6 months after diagnosis. Basically, I was scared. Really scared. Get some help from a therapist. You deserve every bit of help that is accessible to you.Through my Psychologist I have learned to live in the now, take a good day and make the most of it. Bad days, well, I do whatever I need to do to get through them, then draw a line inder them. Be really kind to yourself, you have been diagnosed with a potentially disabling disease. In my 30 years of nursing I have seen much worse burdens to bear, and I have also witness tremedous advances in the treatment of RA. BTW my husband also has RA, he had acute & severe onset, then had Sulphasalazine/Plaqenil & gold inj. Six months later he was in remission and five years later a bit of stiffness in his fingers on some mornings. I suggest 1.Try the Mtx - see what happens and try to be positive. 2.Get some emotional support from a professional. 3.Get some decent pain relief - preferrably the long-acting type so that you can sleep at night. A good basis for Pain Management is Paracetamol taken regularly, you can add others on top of that. Speak to your Dr. There is plenty of scope available to manage pain and tonnes of literature regarding it. Phew...what a long post, sorry folks. Hope this helps you Sparrow - I'm also sending you a big hug all the way from Australia. Deb --- In , " tornsparrow " <tornsparrow@...> wrote: > > This group has been great so far. All of you are wonderful, in my > opinion. But now I'm sincerely worried about Methotrexate, which I am > assuming is what " MTX " stands for. It sounds like anyone who's used > it is having hair loss problems. Is this what's going to happen to > me, or is anyone out there NOT having this dreadful side effect? > I'm living in terror that my RA is going to get worse and I'm going to > wind up in a wheelchair, alone, having to rely on others to help me. > I cry so much it's pathetic. > Right now, it's mainly my legs giving me trouble - especially the > knees. When I'm laying down, as soon as I try to bend them, they feel > as though someone is trying to rip my knee caps off... > I guess my main questions are: 1.) is hair loss inevitable? 2.) has > anyone's RA ever gone dormant after a certain medication? 3.) has > anyone ever had suicidal thoughts over going from being physically > independent to being badly handicapped? (I'm not there, but I'm > curious.) > Any kind of response would be greatly appreciated... > Thank you. > " Sparrow " > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2006 Report Share Posted October 25, 2006 1) Not everyone has hair loss with MTX. I'm taking the max amount weekly and have the normal few hairs in my brush or comb. I'm working on a reverse Mohawk, and it's coming along nicely. 2) It can go dormant at any time, and is not predictable. 3) It may happen. Depression is a common occurance with these diseases, so I'd say that some have given it at least a passing thought. Dennis in Eastexas " It's not Rocket Surgery " [ ] I'm Freaking Out ! > This group has been great so far. All of you are wonderful, in my > opinion. But now I'm sincerely worried about Methotrexate, which I am > assuming is what " MTX " stands for. It sounds like anyone who's used > it is having hair loss problems. Is this what's going to happen to > me, or is anyone out there NOT having this dreadful side effect? > I'm living in terror that my RA is going to get worse and I'm going to > wind up in a wheelchair, alone, having to rely on others to help me. > I cry so much it's pathetic. > Right now, it's mainly my legs giving me trouble - especially the > knees. When I'm laying down, as soon as I try to bend them, they feel > as though someone is trying to rip my knee caps off... > I guess my main questions are: 1.) is hair loss inevitable? 2.) has > anyone's RA ever gone dormant after a certain medication? 3.) has > anyone ever had suicidal thoughts over going from being physically > independent to being badly handicapped? (I'm not there, but I'm > curious.) > Any kind of response would be greatly appreciated... > Thank you. > " Sparrow " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2006 Report Share Posted October 26, 2006 I've been on MTX for 2 years with no side effects. In addition to MTX I take celebrex and folic acid > > > > > > This group has been great so far. All of you are wonderful, in my > > > opinion. But now I'm sincerely worried about Methotrexate, which I > > am > > > assuming is what " MTX " stands for. It sounds like anyone who's > > used > > > it is having hair loss problems. Is this what's going to happen to > > > me, or is anyone out there NOT having this dreadful side effect? > > > I'm living in terror that my RA is going to get worse and I'm going > > to > > > wind up in a wheelchair, alone, having to rely on others to help me. > > > I cry so much it's pathetic. > > > Right now, it's mainly my legs giving me trouble - especially the > > > knees. When I'm laying down, as soon as I try to bend them, they > > feel > > > as though someone is trying to rip my knee caps off... > > > I guess my main questions are: 1.) is hair loss inevitable? 2.) > > has > > > anyone's RA ever gone dormant after a certain medication? 3.) has > > > anyone ever had suicidal thoughts over going from being physically > > > independent to being badly handicapped? (I'm not there, but I'm > > > curious.) > > > Any kind of response would be greatly appreciated... > > > Thank you. > > > " Sparrow " > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2006 Report Share Posted October 27, 2006 I've been on MTX since January with no hair loss at all, and I know MANY people on this list also take it without problems. I'm _starting_ to adjust to the idea that I'm stuck with this disease (dx'd in Jan) but I can't say it's easy. I still have a lot of " down " days, particularly because we still haven't found a combination of meds that keeps the RA under relatively good control. I started to see a therapist from time to time, and I think that has helped me prioritze what I have to do and keep things in perspective. You might want to consider something like that. As far as your knees are concerned, I an't lie with either my hips or knees flat without painful consequences when I try to move. So I sleep (and even rest) with a pillow under my knees to keep an angle in my knees and hips. This helps a lot. You'll find that the people in this group are a great support system too. Remember that when you read about side effects, the people who respond will mostly be those who HAVE had a similar problem... it doesn't make much sense for all the others to say, " Nope that never happened to me. " <g> There are lots of side effects that CAN happen to SOME people, but very few people experience them all, and the benefits for the most part far outweigh the risks. --- In , " tornsparrow " <tornsparrow@...> wrote: > > This group has been great so far. All of you are wonderful, in my > opinion. But now I'm sincerely worried about Methotrexate, which I am > assuming is what " MTX " stands for. It sounds like anyone who's used > it is having hair loss problems. Is this what's going to happen to > me, or is anyone out there NOT having this dreadful side effect? > I'm living in terror that my RA is going to get worse and I'm going to > wind up in a wheelchair, alone, having to rely on others to help me. > I cry so much it's pathetic. > Right now, it's mainly my legs giving me trouble - especially the > knees. When I'm laying down, as soon as I try to bend them, they feel > as though someone is trying to rip my knee caps off... > I guess my main questions are: 1.) is hair loss inevitable? 2.) has > anyone's RA ever gone dormant after a certain medication? 3.) has > anyone ever had suicidal thoughts over going from being physically > independent to being badly handicapped? (I'm not there, but I'm > curious.) > Any kind of response would be greatly appreciated... > Thank you. > " Sparrow " > Quote Link to comment Share on other sites More sharing options...
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