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Update..back from Rhuemy....oh the joy of new meds

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Rheumatoid Arthritis
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Posted 3/7/2011 11:17 PM (GMT 0)
So I had my Rhuemy app. today and all of you who posted to my last post about which meds he might switch me to were right. He of course checked the joints an swelling. Gave me a cortisone shot for the torn cuff, just to see if it's actually tendinitis that is causing the pain. He figured we could at least try it since it is cheaper than an mri(I have not finished my $3,000.00 deductible this year..although as you all know with all these apps. I am sure close.
So he decided to have blood work done again for crp and ana along with liver function to see if he can start me on the methotrexate. If labs come back ok I will start it this week along with the predisone and plaquenil. Oh the fun of RA. So I asked him if he decided that this was RA and that was my dx. He said since I had results with the plaquenil if I have results with the methotrexate then he would decide it is RA. I guess since my bloodwork has, so far, just been elevated and not off the charts or to whatever standard they go by we have to wait. I am nervous about started this med. but he explained a lot about everything and spent 45 minutes with me.(he usually spend at least 20) So here I am just waiting. I guess if the cortisone shot doesn't help by the time he calls with the results of the blood work then he will order an mri for the torn cuff.
So I will be taking the pill form of the methotrexate which is good because I hate shots. So what should I expect? I have heard of people getting real sick to their stomach. I work full time and have 5 kids so should I take it on the weekend to know how I will feel? I guess me and the husband are going to DAve and Buster's Sunday for a date night and I will drink then and that will be the end. Rhuemy said I can't drink on it. I rarely drink anyways so it's no big deal but occasionally I like a good margarita shocked turn
Well any advice would be great. Thanks, and hope you are all well. Heather
Posted 3/8/2011 1:39 AM (GMT 0)
Hi Heather, sounds like your appt went well. Hope the injection gives you some relief in your shoulder. I will be interested to see what others post about what to expect with the methotrexate. My rheumy already mentioned it, so I guess that is where I will be next. I am still only on tapering Prednisone. He has not mentioned the plaquenil. What does the plaquenil do to help?

So glad that you and husband are going to have a date night! And drink a margarita for me too (also my favorite)! Weds is my birthday and I am hoping to feel strongth enough to go to Carrabas for dinner. I was sick last week with probably the flu that then kicked up my asthma. So had a rough week. Just getting some strength back. Boy, try having asthma kick up when you are already breathless from the extreme fatigue!
Posted 3/8/2011 4:04 AM (GMT 0)
Hey mama-

don't sweat the MTX. Just make sure you keep yourself good and hydrated while on it. I try to drink 3 16 oz. bottles of water a day. Make sure you take it on a full stomach. Hopefully your doctor will start you out at 3 pills a week and work your way up every 2 weeks to make sure you are tolerating it well. I never had any tummy troubles using the above methods.

I wish you all the best.
Posted 3/8/2011 4:50 AM (GMT 0)
Now the Bad stuff, i find if i don't eat well on the day i take MTX i wake up either vomiting or at best very nauseas, But on good side you can take extra Folic Acid and that helps,also maxalon tablets help, i had to lower my dose right down to a toleratable level and slowly increase then drop back again, But of Course Every One is Diffrent. just if you get sick remember Eat especilly late in evening or take a snack to bed also the Folic Acid take on Every day But Not on MTX day. it dose help, Last time All i did was Throw up and have Diahreah i'd take MTX on Monday and it was the following Sunday i felt good then due to take again! But this time i have Not Thrown up i just have Nausea and Diahrea for a few days . Sounds Bad but actually Better.So if you need to not be sick for work i'd take it on the Friday that way you have the weekend to have 2 Bad days if you have them then should ease off for the Monday
Posted 3/8/2011 1:49 PM (GMT 0)
I asked my rheumy for nauesa pills and she gave me a script for 30 promethazine 25 mg tabs with a refill "just in case" I needed it.
I injected last Monday, no nausea but for Tue. and Wed. my pain got much worse! Then Wed. it was gone, and Thur. started right back. That was very unusual as mtx usually take weeks to start. I'm having wrist surgery tomorrow and I asked her if it'd be o.k. to skip the Monday (weekly) dose and she said yes. I plan to start a curcumin regimen after surgery anyway.
Posted 3/8/2011 1:51 PM (GMT 0)
OOPS I meant to say I hope you don't have RA, but to be honest when you have something that is trying to literally destroy you it's at least a comfort to know what is is.
AND Good Luck with everything.
Posted 3/8/2011 6:15 PM (GMT 0)
Hi there,

When I first took my dose of MTX I felt as if I had the flu, it was pretty horrid, not to scare you! I also had a difficult time with fatigue to the point I could not get out of bed at 10am in the morning! Please ask your doctor for a script of Leucovorin, this will help combat the symptoms of the MTX, it is taken 24 hours after your dose of MTX.  Keep in mind you may not have any side effects from your first dose, but you may also find that you feel as if you have been run over by a truck like I did and it was only 4 pills. Do drink lots and lots of water, because if you don't it can increase your joint pain/fatigue and make you feel crummier.

Posted 3/9/2011 12:42 AM (GMT 0)
I felt sick taking it the first time too but then my rheumy reduced my dose down to 10mg and slowly built me back up to the 20mg I'm on now and I manage that fine, no nausea or anything. Drink heaps of water especially on the mtx day, take your folic acid tablet the next day and hopefully you'll be ok.
I have a couple of drinks a week without my liver being affected. Just make sure you have your monthly bloodtests.
Regards, golitho
Posted 3/9/2011 2:41 AM (GMT 0)
Songwriter,
Yes it seemed to go pretty good. I like this Rhuemy compared to the one I had for a year that constantly looked at me , smiled, and did nothing. The plaquenil, for me,mostly helped with the stiffness that I was getting. that's not to say that I don't get stiff, but for me it used to be an all day thing. Only changing if i laid down sat down, or squatted in which it would get worse and cause more pain. I also feel less exhausted with it. My pain and burning in the joints and immobility didn't change but I sure have noticed a difference. He feels by me taking all three meds (plaquenil, predisone, and the methotrexate) we might be able to finally get it under control. That would be great. I am so nervous about taking the methotrexate though. I hope they get your's under control soon too. Take care.

Weary,
I am dieting on this 17 day diet..it changes every 17 days..and I've always drank a lot of water but since this diet I have to drink even more. So I guess everything happens for a reason. I will definitely have to get a members only for the common bathroom at work, or just wear a sign stating my bathroom!!
idea Hugs!

BADDAY,
Hey love the honesty. That is the big part of what I am worried about...the getting sick part. He hadn't mentioned the Folic acid so I'm glad you did. When he calls with the liver function results and such, I will have to ask him. Thanks for letting me know.
Thanks for all the advice and cheering on..so scared but now I know. Heather
Posted 3/9/2011 2:54 AM (GMT 0)
hoghunter,
I will ask about the nausea. I have taken the prom. med before when I was getting migraines and nausea. I won't be getting the shot right now. He said he wants to start me off with the pills. He said 6? As far as I have read here I shouldn't start out that high, right.? He was explaining so much and I had forgot to take nots and my hubby was asleep in the waiting room shakehead So I will ask if they call. He seems pretty certain that it RA from the test that I have had but doesn't want to call it until he sees how I respond to the methotrexate.I hope I don't have it either.Thank you!!

momto3,
I had heard from a friend of a friend that you feel that ran over by a truck feeling. I told hohgunter that my Rhuemy talked about starting at 6 pills? I'll ask you too, does that sound like a lot. From everything I have read it just seems like a lot. Don't worry though I love honest advice. I can deal with things if i know the whole story, you know? i think all of us have so many surprise situation, anyways, that the more i know what to expect the better. Thank you.

golitho,
You are not the only one that has told me they have a couple of drinks here and there with it and be ok. I just thought wow..never..ever? He asked me if my tubes were tied,which they are, then he checked my records, I guess to guarantee. He said he would not prescribe to someone if he couldn't guarantee they would not be having any more kids. I hope I can handle all 6 of the pills like he was talking about prescribing. I suppose, like you, I can just have him back it off if I need to. Thanks for the advice. Heather
Posted 3/9/2011 2:56 AM (GMT 0)
Hi Heather,

I have been on MTX for nearly 6 years from 5mg up to 25mg (currently on 15mg) I take 5mg of folic acid daily and like everyone said I drink plenty of water.

I sometimes suffer from headaches the next two days after taking it - very random and not sure why eyes   I also have hair loss which I HATE but the MTX works so I put up with it.

As with everyone else I get regular bloodwork done and better mention that it makes you more sunsentitive so I wear a sombrero and plenty of sunscreen if Im staying out in the sun for long periods.

I once thought this med was doing nothing but robbing me of hair but had to go off it twice for surgery and then I knew that it was working - OUCH.

Good luck.

Take care

Jo

Posted 3/9/2011 11:59 AM (GMT 0)
:-)  JO,

Thanks for the sunscrean warning. Now that you mention it I do think that my Rhuemy mentioned it.

I was wondering what day is a good day to take it , for you. It's so hard to decide with so much going on.

Yeah my Rhuemy already set it up for my bloodwork to be checked in 4 weeks, so I thought hmm this is probably going to be ongoing.

Uhg my mom was dx with breast cancer this last fall and has gone through such exhaustion and loosing her hair....I've seen how much fun it wasn't. Something cool to look forward to, I guess. I just want the pain to ease for awhile. I had to go off the plaquenil for awhile because we thought I was allergic to it. It wasn't til then that I realized how much it was helping me..talk about some rough weeks shocked Thanks for the advice. Take care. Heather

Posted 3/9/2011 12:07 PM (GMT 0)
Yep get the hair loss also,i'm deciding between a wig or a Comb-over like middle aged men do -Ha Ha. i too went off MTX then back on it i have noticed for first week or so i felt sorer but where as it is normally an Overall Yuck this was more Direct i could pin point each individual joint that hurt,it has settled down now,and the Folic acid is a Wonder pill 5mg Everyday Except the MTX day helps greatly,and of course a snack at bedtime on MTX day (any excuse for a midnight snack  idea )

i hadn't heard of the MTX injection but will look into it as it would bypass the tummy compleatly.

Watch your Temperature for first week or so as the Plaquinil can also turn a nasty reaction on you it did to me and i can not take it. But Everyone is diffrent Remember.

Good Luck hope it works as Earlier treatment the Better.

Posted 3/9/2011 6:36 PM (GMT 0)
Hi there,

Yes, it seems like a lot, but you can always start at a lower dose, or if the six are too much taper down for a few weeks and then work your way up slowly. That is what I did, gradually worked my way up to the full 8 pills per week.

Posted 3/9/2011 10:36 PM (GMT 0)
BADDAY,
I had to laugh at the thought of the comb-over. I pictured myself getting a blue wig and just showing up to work that way. When anyone ask I'll just say with a straight face " what do you mean..it's the same as I always where it?"It was funnier in my head shocked I def. will like the thought of having a snack at bedtime tongue I have been on a strict diet because of the predisone weight I have gained along with some i gained all on my own. nono

mom,
That's good to know that I can taper down if need be. I just thought that i had heard a lot of people say that they had started out at 3 and worked their way up. I know he said 6 though. I guess I will find out when his nurse calls me back tommorrow. I will make sure i drink the water too!
Thanks for everything. Heather
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