Hi.. I am a 37 year old mom who has three boys ages, 17, 6 and 17 months. I am married to a wonderful man. My hands are in alot of pain, and i went to a rheumatologist who said i have seronegative RA. Both hands have it in the finger joints and a few knuckles.
I was put on predinosone first by my primary but I stopped that in a day because of side effects.. heart racing, bloating. The rheumatologist put me on methotrexate 2.5 mg tab (3 small pills) and I am suppose to take them once a week. I am soooo scared of the side effects and the damage it could do to my body. I stopped nursing my son in January and I haven't been eating that great, no appetite and I lost a bunch of weight. I weigh about 109 now and am 5 foot 3. I have gained a few pounds(about 4) in the last month as I am trying to force myself to eat. It is hard with no appetite.
I feel overall body weakness and the pain and weakness do radiate down to my elbows and I am afraid they are next. The dr. told me I could be in a wheelchair this time next year if I choose not to take the medicine. I am freaking out.
I did take the medicine Friday night and I had horrible throat pain for two days and that night I had terrible headaches. I was crying all night.
I asked (begged) the dr. to give me four weeks(that is when I go in again to the dr.) and I said I would try to really imporve my diet and stress and try to eat lots of green veggies, etc. I am really scared. I have beautiful ong hair and I don't want to loose it as I heard this medicine can do. Ever since I took the medicine I honestly have felt work and I know it doesn't start working right away so I don't know if I should continue the treatment this Friday or give myself a month until I really try to eat well, etc... I know they say diet hasn't played a part in the progression but I still feel I want to try. I am in so much pain and want to take something for the pain right now and have no relief from this medicine and the only thing that helps is a corn bag heated up in the microwave. I am soo young and I don't want to damage my organs by taking/not taking this medicine. Can someone please send me first a big hug and a few tissues and then help me along here. My mom is a nurse and she wants me to take the medicine. I just want to talk to others and learn about this and get on top of it and continue with my life. I am depressed thinking I can never have a glass of red wine again as I enjoy that one a week. I was told no alcohol while on the medication. I am scared that the side effects if I continue to take the medicine will just increase.
Please can someone give me a little guidance. My sisters wedding is on July 9th and I am in it. I want to feel good and have fun.
Help:
Donna
Donna, Most of the people on here take mtx. Few of them have lost any hair and if they do, it usually just thins and there is a supplement that can stop hair loss. Someone will tell you the name of it. I wish I could take mtx. It really is the most effective of the ra drugs I think and most people swear by it. I cannot tolerate mtx but at much higher doses than you are taking. MTX does make you feel bad the day after taking it, that is normal but the long range benefits seem to outweigh the side effects. You will hear back from people who are on mtx but I just wanted to say Welcome. I can't believe your rd said that. That is a little extreme. Take it a day at a time. Your ra may be mild BUT it does need to be treated because it can be very serious. I take Enbrel which when you read the side effects, it is very scary but after I got on it, I am so grateful it is available to me. Keep posting. You will find many answers here.Thanks so much for welcoming me and responding. I am scared of the metx because I have heard of shingles ,and herpes outbreaks on the face.. I hate to think of that. What is enbrel like? What happened to you while on methx?
I do think my RA dr. scared me a bit for sure but I am not ready to accept this. My right hand still has its full functionjust a bit imflammed but left esp the ring finger is bad and is curved a bit. I had to cut off my wedding rings:( Can any medicine make your fingers go back to normal?
Your support is greatly appreciated.
Donna
Hi Donna...welcome!
I remember when I was prescribed methotrexate. I was terrified like you. I even put it off for a while. But eventually it only got worse and I could barely move. So there was nothing more for me to do but start the methotrexate (mtx).
I've been taking mtx now for about 14 years. I've had no problems with it. No nausea, didn't lose any hair, no mouth sores. I'm now taking 25mg which is 10 pills a week. The only problem I've had so far is that my white blood cell count was a bit low. So I was told to stay off of the mtx for a few weeks until it went back up. You'll have regular bloodwork done so the doctor can keep an eye on any problems that may come up.
As far as the drinking goes...well...we all have different feelings on that here. There are some that don't drink at all....some will have a drink once a week...some more. My doctor tells me not to drink at all, but I have a drink of wine once in a while. If I have more than 2 glasses of wine, my joints get terribly sore.
Good luck!
Kelly
Oh I forgot...here's your hug...sorry..I have no tissues
Thanks so much for your support.
Donna
Donna, First
PS A diagnosis of ra IS depressing. I am on antidepressants and I am so grateful that they help. The swelling goes up and down, no predicting it. It will be less when your rd finds the right med mix.
yes you're right...4.0 is normal...my doctor told me they don't like it to go below 2.5..mine had gone down below that when I was told to go off the mtx. He says mine has been at about 3.0 So 3.9 is pretty much normal...nothing to worry about.
You're life isn't over...it's just taking a slight detour. It'll get back on track soon.
I was just diagnosed also. I am a 35 yr old mom of two boys, age
8 and 6. I know how you are feeling right now. I was very
active...competing in triathlons and running races and the pain became
so bad I could barely get out of bed. The x-rays show that I
already have erosion in some joints in my hands. My doctor
started me on prednisone four weeks ago and it has helped
tremendously. I started taking MTX (4 pills) three weeks ago and
I was as unsure as you are. I figured that any side effects I
might get are better than being in as much pain as I have been living
with. I can't tell you that the MTX is working yet as it is only
my 3rd week and I have not been weaned off Prednisone yet. As far
as the side effects go...I take the pills around 5 pm so I am in bed
before I start feeling bad....but I have only had mild nauseau and
headache for about a day after I take it.
It's good to know we are not alone....I am really sad about my diagnosis also...but I am trying my best to stay positive.
P.S. - Here's a hug!
Jen
Thanks Jen...
I am sorry that you have it as well. I am soo sad.. I hope we can work through it together. Maybe you can help me accept the fact that I need to take it. I am a dancer and just love to dance. I have been very active all my life and this hit me like a ton of bricks. I can't explain how inconvienient it is when you have a family and so many plans. I am so tired now and worried about my vision because it is blurry every now and then. I thought I would take these four weeks to just wait it out and hope and pray maybe I can find another way out. I just have to take it one day at a time but I am in major denial today. I keep saying... No... I am not taking that methotrexate, not ever:( I am thinking maybe if I move someplace new and warm and sunny or if maybe I just get my immune sysytem to heal itself through good nutrition... I don't know. I am so glad you responded and that I could suggest we lean on each other as much as possible for support. Does that sound ok to you? I am so sorry you are in so much pain and I hope you feel better soon. I know you are even younger than me so I can imagine your mental pain is enormous. It is so unfair.. I have a twin sister and she doesn't have it?? so why me? Not that I want her to have it but what happened this past year to make me get it?? It was a stress ful year with the kids and all.
Thanks for your support. Hugs to you too:) The best part of today was finding you all.
Donna
The medicine , Arvara... does it have any other side effects besides the poop? Thanks for the positive words. I am not usually this depressed... It has helped listening to all the feedback. Thank you so much.
I too was freaked out to be put on MTX. I held off as long as possible. It is a really horrible drug...I mean it suppresses your entire immune system!!??? However, I finally had to succumb to a life full of meds for my family. It isn't a matter of how much pain you can live with...it is the amount of permanent damage you are doing to your joints without the meds. I also have 2 boys (15 and 12) and I own a small antique & decorative arts shop. It has been a long arduous time since I got diagnosed in October. The hardest part for me is the weight gain. However, since I have been stabilizing on the MTX and Enbril I am able to exercise again. I work with a trainer 3 times a week and we do weights and stretching and cardio. I am going to add yoga and weight watchers this summer.
I also take Carlsons Cod Liver Oil (lemon flavored), Vitamin E with selenium, magnesium, multi, calcium, milk thistle and L-glutamine.
I took mtx from day 1 when my Rheumy told me to take it. Never gave it a second thought. I've never had any side affects from it or feeling bad the day after, so that's not the norm as some have said. I felt better in a few months. I am still on it, but a reduced dose. Because my rheumy treated aggresively early on, I have mild symptoms now and I was in really bad shape when first diagnosed. So, from my experience, treat it aggresively early, don't worry about what CAN happen, because it may not. If you let this disease go untreated aggresively when you get it, it's only downhill from there—in my opinion.
Good luck to you!
Susan Welcome Donna & Jen. I know this is a frightening thing handed to you gals, but take one day at a time. The girls on here have so much information that they will share with you. They know the ups & downs of RA. As far as the MTX, I also was afraid to take it, but my RD increased my dosage from 10/mg to 15/mg as of yesterday. I personally will stick with taking it as I trust my RD & I trust the postings on here. I hope you both feel better soon & get the correct dosage that you need to make you feel better. Trisha
Hi Beccy27, I did get shingles but I don't think it was necessarily from any of the medications I'm on. You can only get it if you've had chicken pox as a child . It is the herpes zoster virus that can remain dormant for years. I've had a really rough year and my immune system is not in good shape. I'm also almost 60. Shingles is more apt to attack older individuals with impaired immune systems. I've been under real stress this year tying to continue working and switching to a new job. I've had repeated colds because I'm a teacher working with germy kids. I think you should listen to your doctor and try the various regimens of medications he prescribes.It may take a while to get the right combination that will relieve your symptoms.Yes. it's a pain but if you can get the RA under control now , you can prevent a lot of damage that can't be fixed later. You are a stay at home mom which is good. I wish I were in your shoes because I'm trying to get the RA under control and continue working. I must say that athough I have horrible allergies to medications and fought taking the meds for a long time, my RA has improved and I can do things now that I couldn't do two years ago when I was forst diagnosed. Hang in there. Hi Beccy27 I'm 40 and have recently gone back onto on mtx too. I was on it 5 years ago, when I couldn't walk properly, and it was like magic - it put my disease into temporary remission. We're all different and we all have different experiences with these drugs, but be brave and give it a chance to improve your health. You could be dancing again in the future! And it's normal to be scared. All the best, Most of my pain is in my hands and feet, but today it is in my left shoulder. I can hardly wait to see what tomorrow brings.
Please reply could use a friend. someone who understands Hi and welcome. 3 pills is a very, very low dose. You can take folic acid (up to 2400mcg) each day to keep from feeling so tired, and it will help any side effects of the MTX. Many of us here are on it or have been at some time. Most of us were on much higher doses than what you have perscribed. I wouldnt advise you to wait. You are only prolonging the ammount of time until you get relief, and you are running the risk of permenantly damaging your joints. I was scared of all the things I read about it, but that is really for the extremely high doses used as chemo therapy and not the doses that are used for RA. I mean what you are reading is for people who get 500 mg + at a time vs. the usual 15 to 25 mg for RA patients. Your dose is even low by RA standards. Please reconsider. It is not as bad as you think, and once you start your treatments you will feel like you have more control of the disease. You have to be proactive, aggressive. If you sit back and just let RA take over, it will. And that is where you could end up at a point of no return. You can always switch meds or stop them if there is a problem. Good Luck! Hi everybody... Thanks you all so much for your welcoming thought. I am scared but I am no dummy. This RA is an ememy I can't ignore. Since Tuesday night, I have had pain all over ..spine, knees, feet, elbows, neck and hands starting to cripple. One finger in each hand... Gosh, I hope that goes away. I am super depressed and scared of medicine but more scared of what I felt this week witht the other joints. I am scared to death of this. I started Zoloft 25 mg today to help with depression and I am taking the Methotrexate tonight. I will have a sore throat again and headaches but I have to drink lots of water and have popsicles I quess. I am scared. I am going to see a nutritionist soon. I went and bouth a whole bunch of health food. I just want to get the right extra stuff of what RA and meds will take away. I heard you also have to stay out of the sun? I will find that difficult with three busy boys who want to do nothing else than play, play , play. Oh so does anyone have any suggestions with the diet thing(I don't want to gain weight) and what happens if you get too much sun. I am scared that the RA is attahing me in full strength. I am not going to wait. I even called drs. today and thought maybe I needed more medicine. I am scared of not walking and taking care of my kids. I am not going to let that happen. I also scheduled myself for a massage, hand parrifan, manicure and pedicure.. I have to try to feel good so I'll have to up the beauty efforts:) I so appreciate everyones support here. I am going back in 4 weeks so hopefully I will see how I react to the medicine. I am just afraid the RA will hurt me mora and more until then. Hope not but it seems to be crashing into me this week. I am also wickly exhausted all the time, and a bit dizzy. I have been trying to eat small meals throighout the day to help if I get any nausea and I bought organic ginger cookies to help. Does the methotrexate contribute to weight gain? I am not on predisone. I was told that I can take tylenol for the headaches tonight so maybe that will help. Does this site allow for buddy groups... just wondering if any of us moms wanted to do that as an easier way to stay connected. Hugs! Hope you all have a wonderful weekend without the pain! Donna Hi My name is Marie. I have RA and I am 43. I was diagnosed when I was 29 and I am now on Enbrel injections twice a week. I highly recommend that you look into taking Enbrel and or Humira. These are 2 new great drugs that help in reducing the flares (swelling & pain), and also slow down the progression of the disease. I was on the marry go round that so many people discuss in the forum. Try Methotrexate, try Prednisone, try sulfasulzine, try napreoxin with them....It goes on and on. RA needs to be treated while you are yound and the diease has not progressed. I wish someone had taken me by the arm and helped me to Insist to my Dr.s that I needed Enbrel from the beginning. I have one foot (Ankle) that has begun the deterioration process, making it a challenge to walk at any distance or any period of time. I often stay home VS limping to the mall. My kids lives have been impacted greatly because of my RA and I wish I had gotten on the newer drugs much earlier. I went to enbrel.com and I did not see anything that said you needed to try all the other drugs before starting Enbrel. Keep digging and get more answers from your Docs. We are too young to lose the fight with RA deterioration. Vicki, Wow.. thank you for sharing your experience. It is good to here that this new medicine is working better. I am afraid that I should have more right now though. I feel my body aching more and more all over. I am scared of getting that bad. Marie, Can't thank you enough for your advice. I go back in four short weeks but they will seem like a lifetime. Please keep educating us. I took the medicine tonight after having a very healthy dinner and a big salad. I then drink about three water bottles and stand up straight for two or so hours. I don't want to get that headache again. So far, I feel fine. Hands still in pain. Do any of you take regular strength tylenol? for pain... It seems to be the only thing I can take and using a heated corn bag. Vicki, I checked out that web site. Thanks for the info. I thought I could also make some more corn bags. and sew velcro around them somehow and heat them and attach to painful joints. I bet the ones you suggest would work much better but I could try that until I get them. Do you know the side effects of the Humaria and Enbrel? I want to learn about those before the next appointment. Jen, what is the Rheumy appointment like .. did you have blood work and all? I am going to try sleeping upstairs tonight in an attempt to stay in a warmer maybe less damp place. I am probably being silly but I will try anything to make this stop. I only exercised once this week. I am trying to do this low impact aerobic tape and it does help me. I am afraid to do any dancing but when I am feeling good I suppose it would help. What kinds of exercise besides swimming(which is probably the best for us), does everyone here do? I will have to check out the exercise forum and nutrition forum. So, I am adding everybody to my buddy list. I don't know how to set up a buddy group though... anybody have any suggestions for how/where we should keep posting? I have my neices high school graduation.. hope I can feel good enough to go. Donna
I agree...we do need to lean on each other...that is a great
idea. I understand how hard this is to accept, esecially when we
have busy families that depend on us being well and functional.
In my opinion I don't think there is any benefit to you waiting 4
weeks. Your RA is still damaging your body. Even if you
decide against the MTX...start taking something. If it makes you
feel any better about taking the MTX...I took my third dosage yesterday
and today I have very little nausea and a small headache. So the
side effects seem to be getting better the more I take it. I am
seeing my rheumy on Friday though and she is going to increase my
dosage and start weaning me from Prednisone. Even though I feel
so much better on Pred...I want to get off of it before I start gaining
weight. Does anyone take Pred and NOT gain weight??
Fortunately, I am still able to exercise. I do alot of swimming
and instead of running I walk.
Try not to be sad and let's focus on feeling well and being PAIN FREE!
Jen
I think if you are going to have a reaction, it will come up pretty
quickly and you will know. I have been on MTX for a few months
now with no problems, and my mom has for years. She got fatigued
from it initially, but that wore off in time and tolerance.
I think it is worth trying these meds. I had a lot of the same fears,
and I survived and am doing just great. Someone also mentioned
something for your hair, I think it is called biotin, that is supposed
to be great and help with the hair.
I worry about side effects of meds, but the deterioration of RA is much
worse, in my opinion. Just keep yourself up to speed and educated
on your choices and work hand in hand with your doctor so that
you feel a sense of control with what you are doing. It really
helps to have knowledge, because it really is power.
Good luck. p.s. I am 33 and have been on meds for about 3-4
months now. I am still in the process of finding my mix and
getting it under control. It is a long process and takes
patience. I realize it is really hard when this is new.
Your life doesn't have to be over -- it's just at a fork in the road
with new terms. I have great inspiration in seeing my mom do so
well over the years. It helped me get through the dark period in
the beginning a lot.
Beccy, I am a 37 year old mother of 4. This is my first time on the forum,
so I was very suprised to see your post. I was diagnosed when I was 36
(last May). I haven't had time to read all the responses to your post, but
the hair loss is normally for those that take a very high dose (I am pretty
sure). It is a cancer medication and cancer patients can take 100x the
dose that the RA patients take. I am on 15mg (6 pills a week) and also on
Humira (injection).
Your Dr. wasn't lying when he mentioned the wheel chair. My RA took
only 2 months from the start to me being barely able to walk. It was very
fast (not sure what other RA patients have experienced). I was put on
MTX 1.5 months after my symptoms started and it was sad, because the
MTX took about 6 weeks to kick in. I had four children under the age of
11 and my husband had to take off work to cook/do laundry, etc. The RA
affected both feet/ankles, both knees, both elbows, both wrists and my
neck. It was like I was in the Twilight Zone or something. I cried A LOT!
I haven't known anyone my age w/ RA, let alone someone w/ a few kids.
I'd love to correspond with you if you need someone to talk to (you can
send me a private message if you'd like). The very onset of RA is so scary
and I hope you find solice in the forums. God Bless You.
The medicines are your friend. The disease is not your friend. You can't ignore it. It won't go away. It WILL cripple you. The medicines are potent, and they're not good for you, but they're much worse for RA. They allow you to move.
Even now, when I'm worse off than I've been since December, I'm NOWHERE NEAR as bad as I was then, when I couldn't turn a door knob or button my jeans or walk more than 2 or 3 feet.
It really is a frightening thing. I'd barely heard of RA
before my doctor told me I had it. These boards have been a lifesaver. So many knowledgeable people give very good advice. And you'll be amazed at how quickly you become knowledgeable. In a couple of months, you'll be talking about dosages & what works and what doesn't.
Just remember, we've all been where you are now. Our lives have changed. It's an ongoing adjustment, but you will adjust.
Meanwhile, welcome!
Donna, about staying out of the sun... I have olive skin, so I still go in
the sun w/ 50 spf sunscreen. I think the concern is that MTX increases
your skins sensitivity to sun, but that may be more a problem for very
light skin or those on a very high dose. I'd ask your Dr. or nurse if you
are really concerned. I guess I should talk to my Dr., too. So far, been on
MTX a year and have not had any skin problems.
Good idea about the mom buddy system. It is hard to have RA, but
taking care of kids, too, does complicate things. The one thing that
helped me tremendously until the MTX kicked in was these support wraps
that I wore on my feet, elbows and wrists. It's a brand called, NIKKEN.
They are sold via consultants and on ebay. The ones I am talking about
are called NIKKEN Kenkotherm. They slip on like a one piece knee ace
bandage and it uses your own body heat and starts to warm your joints.
You can go to Nikken.com, I think, to find out more info. They are pricey
(about - each), that's why I got mine on ebay. The ones for my
feet were incredible. It offered suport, I could barely walk at the time, and
it had a soothing warmth.
More later, Vicki I love the idea of a moms group.....count me in!! My rheumy upped
my dosage of MTX today....now I will be taking 6 pills instead of
4.
How long did it take you guys before you felt any relief from the
MTX? My doc said it can take quite a while but I am just trying
to get an idea of what to expect. It seems that RA has so many
unknowns. You can't even predict how you will feel on any given
day. So frustrating.
Jen
Beccy -- The beginning is SOOOOOOOO hard. What you are describing
reminds me of when I was terrified. I thought I was never going to feel
good again. I really had so much fear, pain and exhaustion. I am
doing a lot better. I still have a long way to go on the
medication front, but you really will have to get over your fear of
meds. Arm yourself with knowledge -- when you are feeling better
you will have more control. It is near impossible to think
straight when you are living the hardcore degenerative process. I
was a total mess.
I am now back to work and on prednisone and MTX on my way to another
med to get down off pred. It is a crappy process and I hate it,
but it is a necessary evil. You will find your own acceptance and
your own way as you move through this journey. You just can't
think straight until you get your symptoms down. I thought I was
going to have to quit my job and be an invalid. I was a
mess. That did not happen.
You WILL feel better again. You will. Just know
that. It is temporary and a horrible part of the process of being
diagnosed and controlling this disease. I hope you feel better
soon.
I am a single mom of a 7 y.o. and it has been really hard on us.
I know parenting is a lot of work despite RA. Good luck and let
us know how you are doing.
Jen, it took me about 6-8 weeks to get some relief from the MTX. It
was an excruciating wait.
Dr. put me in a cast (left wrist, they thought it was broken), I couldn't
straighten my right arm (major elbow pain), and foot pain (of course I
thought my foot was broken). If you would have seen me, you would
have thought I was in a car accident. That's what it felt like, too.
I was on prednisone (for 2 weeks), felt almost perfect, then stopped
taking it. The Dr. wanted to see what I was like off Prednisone (this was
the very beginning). Within 1 week, the symmetrical joints swelled up,
my other wrist, other foot, other knee, other elbow. OMG, it was horrific.
I was then put on MTX and had to basically suffer through 6-8 weeks
(since I did not want the prednisone due to blurred vision).
I cried for a few months every night. I felt like I was going to die. I could
hardly walk, couldn't dress myself, couldn't do anything without pain. I
was in pain brushing my teeth, pulling up the covers at night.
I know a lot of the forum people have been through this, too. It is so sad.
I feel bad for each one of us. I thought how it could be worse, and
thought about people in this world that are paralyzed. I was so sad for so
long, but still saw that others have their own pain to live with.
I am on MTX and Humira and almost fully funcitonal. Still have wrist pain
and still can't bend my knees all the way, but I can't complain, really. It
makes you look at life in a whole knew light. I used to be a runner, then
stopped when I started having kids. I could have run, but didn't, I was
too caught up in raising kids. When I could barely walk, I wished so bad
that I could run again. What killed me was not being able to "run" to my
child when he fell off his bike. I couldn't, I was in too much pain, and
could only limp my way there. I was able to get on Humira 3 months later
and it was like a miracle medication. I was able to jog after a few months,
but it still hurt my knees a little. OMG, I could go on and on. THANKS for
listening everyone. I feel mentally scarred from this whole experience.
God bless all of you. I am so sorry we all have to meet under these
circumstances. Vicki
through. I was begging my Dr. for Humira after only a month into my RA
diagnosis (last year). They say you must wait 6 months to see if the MTX
works or not. It is great advice to let newly diagnosed RA patients know
about your story and to push for certain meds when nothing seems to be
working. Humira and Enbrel are very expensive (approx. 00 without
health insurance). My Dr. has told me that many of her patients don't have
insurance to cover such meds, and I should feel lucky that mine does (and I
sure do!). I will attest that Humira is a saving grace.
you from being stiff. I had tried to go jogging really slow, but it is too
much for my knees to take right now. I go on 1-2 mile walks sometimes.
I lift very light weights (sometimes I wear my wrist brace when I do it). My
problem is I don't do the exercise religiously. I try to cram it all into one
day sometimes. Then, the next couple days, I feel like crap. One of my
cousins has RA and she always says, "pace yourself". I guess that's the
best advice.
For pain medication, I was on Motrin 800mg, but it tore up my stomach. I
was nauseous everday, so I had to stop it. Then Celebrex. I was ok, and
then after 8 months on Celebrex, the nausea wouldn't stop and, I could
not eat anything but soup. It really sucked. I don't take any pain
medication. The Humira basically takes away the majority of the swelling
in the joints, whch causes most of the pain. After all the nausea I had, I
just deal with the wrist pain and wear my Nikken Kenkotherm wrist
support wrap at night. For all the forum people, NIKKEN sells support
wraps that use your own body heat to warm the area under the wrap. It is
a must have for anyone with painful joints. I couldn't believe my RD had
never heard of them. Check them out online or on ebay, where I bought
mine (warning, they are pricey).
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