GM Everyone!! I have been in Methotrexate for about 7 weeks now.I have lost 50% of my hair all I do in the weekend is sleep because I’m so fatigued I can’t stop crying because my body is going thru so much and so am I will it get better. I need some advise and encouragement because I am getting very depressed.I don’t know how to deal with it…
Hmm that sounds awful. Are you taking folic acid with your mtx?
While MTX is a standard medication for PsA, it doesn't work well for everyone, and for some the side effects are unacceptable. I have been losing hair on leflunomide but didn't on MTX. My rheumy increased my folic acid from 1 to 3 mg, and also added in biotin. It won't necessarily regrow hair, but it will slow it down. There was recently a study posted regarding MTX for PsA. . . You can search for it.
Definitely get in contact with your rheumy about this. In the meantime, hair loss can be VERY upsetting. A nice hat or scarf can make all the difference in how you are feeling about yourself. I've been making my own hats and whatnot, because I sew, but I saw some really cute reasonably priced ones on Etsy. If you search for hair loss or chemo hats, you'll find some cute cotton ones.
And make certain that you are getting as much rest as you can while you're dealing with this. If you want to talk hats or headwear, you can either search the forum, or private message me.
Thank you all for your concerns and advise:yes Gwynneth P, I am taking 3 mg of Folic Acid… Mimi B… I just saw my Rheumy and he wants to increase my MTX from 2.5 mg to 4 mg and spoke to him about my concerns and he said it will get better but it’s easy for him to say since he’s not going thru it…I do get plenty of rest but when I take a nap on a Saturday @ 5:30 pm and wake up on Sunday at 11 am I do get frustrated and upset.i went to GNC to get a supplement for my hair,nails and skin so let’s see how that works…Stoney: I know I was looking at diffrent types of wigs and wraps but the fact that I have long black curly hair and now I went to above my shoulder length hair is depressing but yes I will keep you in my thoughts when I’m ready for the hats,thank you guys for you advise means a lot since my family doesn’t know about my condition and I just resently told my husband and he’s great…so thanks again❤
You may also want to consider sharing with more people depending on your situation. You know best for yourself, but I find that it is helpful to me, without asking for pity. And this group has been wonderful for ideas and support.
Well if your PsA goes out of control, and you can't leave the house, no one will know if your hair fell out oi not!!! :-) Okay so maybe THAT wasn't funny, but its true, and hats are back in style, just tell folks its the one wore to Will and Kates wedding. As much of your hair loss can be from being a girl than anything. The female of the species loses hair with stress, and their ever changing hormones (which with stress, meds, and changes change even more) I really don't know of anyone who's hair didn't come back eventually (at least partially) You know Dolly Parton essentially doesn't have any hair either, but that only make sense because much of the rest of her isn't real either (but her VOICE is) No I'm not suggesting a wig and Implants.
I will suggest however 2 lists of priorities with a goal after each that will mean your met it. Its important to have 2 lists not one. List one is easiest to hardest. List 2 has part A and part B part A is from most important to least important and part B is least important to most important. Now go to work making them happen but you only work off list one. Every time you check a goal/priority off list on, check it of list 2 A and B. it sounds silly but it works. Every time you accomplish one thing you actually accomplish 3.
When you go to work on your lists you need to schedule yourself. There are a few things you do EVERY DAY without fail. Exercise even if its only deep breathing or stretching ( I love the Wii for this) Decide how long you will spend on the pity pot, this is when you check out what is hurting how you feel etc. I do this in conjunction with Bens friends (this board) there is always SOMEONE who has a victory is working at a victory and there is always someone worse off than you. How can you not feel better about that??? When pity time is over its over for the day (you can back here though, try to write something encouraging for someone either on a thread or on a blog. Try to NEVER complain unless you encourage someone too (yeah its not always possible) Go through your day of course, but work on at least one of your priorities. Take some quit time SEVERAL times through the day AND MAKE SURE YOU DO IT. Pray if you are inclined but also try to learn something about your disease or just play angry birds.
Some have suggested sharing with others. That can be a good thing, BUT, I'd get myself really comfortable with it first and develop your "story" first. Chances are, other just won't get it it (unless of course you throw up from the MTX and they are in firing line) and that can be extraordinarily stressful.
Bad genes are thought to be the cause of this thing (and thats debatable) BUT we do know that the one thing that makes it bad/worse is stress. YOU can control stress (with work)
And trust me on this one. Everytime your condition comes up, there will be someone who knows how to cure it with a new diet, practice this line:
"yeah good idea, Right now I'm trying the Choclate Covered Cherry and Port Wine Diet, I have an internet Buddy who had great luck with it. If it doeasn't work I'm gonna try the par boiled tofu diet, but I'll check in to.... (what ever they suggest) A lot of foods react badly with the chemo drugs I take that keep me going...
Hi, I also had a terrible time with Methotrexate. My 4th dose was about a week ago and the day after, I was so fatigued. I slept 16-17 hours/day, was very weak. This lasted 4 days and I missed work. My doctor has switched my medication to a biologic. My body just can't tolerate it and you may be the same. Perhaps you can ask your dr for a new med and/or get a second opinion.
Wish you the best,
Good luck and let us know how it goes,
I would advise going to your doctor for advice, before coming here.. not that the advice from these wonderful folks here are invalid, its useful to read about the experiences of others and then maybe go to your doctor and ask her about it.
But absolutely nothing is more important then discussing this with your own doctor. If there is one thing I have learned through my own process of dealing with this disease, is
A. no one cares more about my condition nor can do more about it then me, and
B. no one is empowered or more equipped to help you diagnose and treat you more then your doctor.. and never, ever forget that they work for you, so don't be afraid to ask tons of questions, even offer advice, or tell them you read such and such report by folks with similar symptoms.
Most of all, I would use great caution about ever trying something you read about here, or anywhere else for that matter, before running it by your doctor. Don't mess with your dosage, don't start or stop taking anything etc. I cannot stress that enough to folks that come to these communities looking for help as it seems many are prone and willing to try anything.
Hello, I also had hair loss and terrible fatigue (and awful nausea!) even with 3 mg of folic acid daily. My doctor switched me to Leucovorin 5 mgs, 12 hours after my methotrexate dose each week. The hair loss and other side effects have improved tremendously though I do still lose more hair than someone not taking methotrexate. I wish you luck. It may be that methotrexate is not a good option for you. Good luck!
The disease AND side effects can be devastating...I know it's hard. yep- be in contact with your Dr... Can they try upping your folic acid to 5mg? I know that is the "standard" dosage my Rheumy has me on and it has helped tremendously....
Everybody's body is sooo different and responds so differently... I know for me- the fatigue was awful at the beginning and slowly over time it has gotten better. However that is me ;) Best of luck- you are not alone!!!!
Never be afraid to try a different doctor if you can’t communicate with the one you have. My first rheumatoligist dismissed everything I said and didn’t even exam me at appointments. The most I ever got out of him was show me your knees and hold out hands (from across the room). Hang in there. Sometimes just sharing with people helps.
Sometimes we need to get some extra help with therapy to get us through the tough times. A good counsellor/therapist will guide you through and suggest some strategies to help you cope. If you go down that road, make sure you get someone that comes with a very good recomendation. You may need help with acceptance and how to move forward with your life and to grieve the loss of our physical abilities and your the way it was.. You should see results after a few sessions and if not find another. Talk to your family doctor as maybe you may need some medication for depression for a while.
I also suggest a list of at leat 20 things that make you feel good. This could be listen to a favourite piece of music to coffee with a friend or a bubble bath. No spending money you can't afford or alcohol etc. Do three things off your list per day. Make sure you get some physical exercise as this helps get the endorphins working. That is what helps us feel good and regular sex helps if thats possible.
Do something kind for others also become aware of people who are worse off than us. I know at the time you may not care but do it anyway and keep on doing it until you realise your life could be worse. Right now that is probably hard to imagine but in time we can move through all this and make the most of what we do have.
Tell yourself over and over that "I can do.......I will..........which is an affirmation. Even if you don't believe it now fake it until you make it. Put up stickers all over the house at eye level to remind you to do your affirmations when you see a sticker do an affirmation
Keep a journal and use it to get things off your chest and all negative thoughts and then put it away in a drawer or cupboard and leave it there as if you are removing the negative feelings out and away from your body until you need to add more into your journal.
Plenty of fresh air, sunshine, sleep, rest and relaxation, good healthy food all help. I find Tai Chi and exercising in a heated swimming pool helps me. Learn to meditate or practice relaxation techniques or self hypnosis
Get a short layered hair cut as this will fluff up any hair you have or become an expert in making hats or wearing different styles of hats and scarves.
I do hope that you improve real soon.
Do you think the fatigue is enough reason to say you're failing MTX and you need a biologic? My rheum put me on Enbrel after only a month with MTX because according to her, the Enbrel works and MTX doesn't.
I've been on Enbrel or 14 months and I'm not having side effects. My hair is all there and I'm not tired at all.
Speak to your specialist and G.P. as soon as possible. Your side effects are somewhat severe, however, not knowing if other health issues are present, I am reserving too much comment.
I can say, PsA does make you feel depressed BUT the beauty is that there are a lot of drugs out there that can work, so stay hopeful. You also have your friends here
I’m with rusty dog, to have that level of side effect on only 2.5mg of MTX sounds pretty severe (given the standard dose ranges from 15 - 25).
I’d also suggest you discuss this with your GP or specialist (what did your Rhuemy say when you told him about the side effects?) to further explore whether upping the MTX is the best option for you.
i was having a bad time with mtx too when they increased my does to 6 pills a week. I would talk to your rhuemy about lowering youre dose or possibly switching to something else. In my case, I switched to Arava and have been feeling a lot better as far as side-effects go
I hope you will be feeling better soon and will let us know how you are doing.
My daughter had the same reaction and was taking folic acid also. She took herself off the MTX and moved home for the support (She is 21). Lauren has a new rheumy who has taken her all the way back to the beginning (ibuprofen). He wants her to stay in touch each month and he will adjust the dosage based on her symptoms. Her regular doctor also put her on prozac which I can tell has made a big difference. So, here we go - on the PsA train but at least she has a rheumy who is "on her" to stick to her meds and then call right away if it is not working - he will adjust the dosage. This is something he said she should have been doing all the while instead of just "not taking" the meds because of symptoms.He was really pretty tough with her, but he knows what he's doing - just wish his bedside manner was a little better. I've learned that what's most important is that you have a smart rheumy. He does seem to be smart.
You will find a lot of your questions answered here on this site and a lot of support.