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Posted 12/8/2012 2:29 PM (GMT 0)
I feel so defeated right now. I really tried to convince myself that this joint stuff was going to go away, that it was my thyroid etc....... Sometimes it will go into a remission all on it's own. Plaquenil quit working for me so it looks like methotrexate is the next step. I am worried about that b/c of all I've heard about it. Has it worked for anyone here?? I am going to ask for the injections. I just have so much fatigue and wonder if I should try plaquenil again....

My emotions have been a mess too. I just changed jobs, moved to a new city with my husband. Now, I am second guessing that decision. I am wondering if I shouldn't have just tried to go out on disability and FMLA at the last job. They were so darn mean though. I feel sure they would have fired me. I turn 58 in a a few weeks and wonder how I am going to stay in the workforce until 65 I feel so bad and have to struggle so much. At least at my new job, they are nice and kind, I did get disability insurance so I am hoping I will be ok.

And now I have type 2 diabetes on top of all of this. Arrrgh!!!!! I need some encouragement and know somebody here can help me to see some light at the end of this tunnel.

I try not to complain to friends and family.I feel like such a whiner when I do.

Thanks!!!!!!!!!
Posted 12/10/2012 6:18 PM (GMT 0)
Jeanneac,
I feel your pain. I am so sorry that you are so fatigued. I too am battling this really bad. I had the flu then bronchitius and my energy is completely gone. While trying to get ready for work this morning I had to sit down several times and rest. Its bad for sure. Stayed in bed on and off all weekend. I fully understand what you are going through. Like Sayyadina said you may think the plaquenil is not working anymore but usually it is. I am on this as well as Cimzia and prednisone. My dr. says that he may have to do infusion on me due to the fact that my sed rate and crp levels are still bad. I hate to say this but I welcome anything he can do at this time. And venting does help especially on here where we all understand what you are going through. I will say a prayer for you and hope that things get better soon.
Peggy
Posted 12/10/2012 11:01 PM (GMT 0)
I had trouble starting the mtx but once I adjusted to it I love it. It has completely got my swelling under control. My knees were so puffy before and now they look like normal knees. Honestly its a wonderful med and well worth a try. Took me about 6 months to adjust to it I felt a bit sick initially but now I'm fantastic on it. 5 years now and still happy.

Definately worth a try.

Regards golitho

Posted 12/11/2012 1:30 AM (GMT 0)
Hi i have had sero positive RA, Fibromyalgia & unknown Auto imune "issue" for about 25yrs now and yes now also type 2 diabetes and have gone thru a torrent of emotions, at one stage we packed up and moved into a motorhome and just traveled ignoring all doctors except for pain management i guess i thought i could run away from it, but hay it followed me !

after trying many drugs that did not work or i had savage reactions to i eventually gave in and went on MTX and yes had bad nausea but with extra folic acid and stagering the dose over a few days we prety much sorted that out i also have anti nausea pills, and after 3yrs on it it seems to be helping and i havent had any horrendous side effects or anything.the injection i guess would get around the nausea thing wouldnt it

i am currently going thru a downer myself (seems to have lasted on & off most of this year) so trying to give a Sunny future outlook is dificult But remember im now 25yrs on must say looking back i have had ok times

 if i were you id probably look at disability even if to put your mind to rest so your not trying to work everyday

and you can then do the thing ive found works for me - take every day as it comes try to live each day and not plan ahead that way your not disapointed if you are unable to do something.

 

Posted 12/11/2012 4:07 PM (GMT 0)
I had some reservations about starting methotrexate as well because of the bad rep it has.  That was 7-8 years ago; I can tell you now that methotrexate works fairly well (better than enbrel alone did), and I tolerate it with very few side effects, if any.  I took the oral medication for many years, but wasn't absorbing it all (I understand we only tend to absorb about 65-70% of it orally) so I was switched to the injections a couple of months ago.  So far so good.  I started orencia infusions (enbrel stopped working for me), but while I have immediate benefits from the orencia, it doesn't last but a couple of days.  I'm hoping that the RA can get under control enough that only methotrexate will be necessary. 
Posted 12/14/2012 1:57 PM (GMT 0)

I think we can all relate to those days when we feel defeated.  I just got over a few of those myself. BUT - we have to keep fighting and believe we'll get back to a place that is tolerable again.

I just had a salivary gland removed from inside my upper lip - one of many problems caused from my whacked out immune system.  thanking God the biopsy was negative and I am able to get back on my Humira.  Bad flare up for a few days but feeling better now.    I love the holidays but they also cause me a lot of stress.  Trying to rest during the day to conserve energy so I'll be able to make all the gatherings with friends and family.

It will be a New Year soon and maybe they'll find something new that really helps us w/o all the nasty side effects!   Hang in there - this too shall pass.

wink  Alicat

Posted 12/22/2012 4:58 AM (GMT 0)
I just found this site on accident. What a blessing it is... I've been so sick and diagnosed with so many syndromes these past 5 years that I almost gave up. Being able to hear about others' health challenges doesn't make me feel so isolated. I was diagonosed with Chronic fatigue, IBS, fibromyalia, Auto immune disorders, RA, chronic migraines, PTSD, Severe depression set in after being told I was on the layoff list a over a year ago. I've always worked... never been unemployed in my life. I started taking methodrexate, folic acid and hydroclor for months. Only had the stomach issues for a week or so, felt better for a few months then - bam. It started all over again. Couldn't take prednisone becuz it made me emotionally agressive. Now doc wants me to start infusions. All my issues started 3 years ago with daily migraines. NOTHING prescribed was working until topomax. But had to stop taking that because it stopped working. Then the Chronic fatique, muscle aches, lack of arm mobility began. My head felt like it weighed 90 pounds and there are days when I feel like somebody drugged me with an elephant tranquilizer. So many blood tests come back normal and I feel crazy. Only iron and vita D deficiency which I take supplements for. Overall I always feel "unwell" I'm watching my food intake too. Maybe it's the additives in food? I look normal, so I think my husband is starting to think I'm lazy and crazy. And quite frankly, I don't even care anymore. This is the only time I've share this! I'm a tough cookie, had a great corporate job and now - most of the time I can't even get out of bed before 10am.. and barely trudge threw the day. Thanks to all and thanks for this site :)
Posted 12/22/2012 7:59 AM (GMT 0)
Hi Headgames, why not perform blood test on food allergies? One such as ALCAT test. It takes a lot burden off trying to figure out the foods triggers of your RA flare-ups. With RA, foods can no longer become an indulgence. The saying 'less is more' becomes quite valid for me. If I keep my diet simple - vegans, no meat, no wheat, no dairy, no nightshades - I feel fine most of the time. The only spice I use: sea salt. Perhaps give it a try for several months and see if it helps. ** Gentle hugs to you** Things will get better if we stay positive and motivated to get well. And lastly, happy holidays to everyone in the forum! Have a merry xmas.
Posted 12/23/2012 12:21 AM (GMT 0)
Headgames...speaking of diet, also sugar plays a part in many with RA..candy, soda, sugary sweets in general will really trigger a flare for me and usually in a few hours after I *treat* myself, so if you like sweet treats you may want to watch and see if this is a trigger for you as well.
Posted 12/23/2012 10:45 PM (GMT 0)
Jeanneac, have you started mtx yet? I just restarted mtx and let me tell you it does help the inflammation, my joints are not as swollen, I use the self injections and it can be scarey at first but then you get better and used to the injections that it does get easier. The foluc acid is a must, and it might upset your stomach for a bit but it does get better, please give the mtx a try it is so worth it. I' m fighting hard to stay on it...as it does help.
many well wishes to you. And posts back okay, how are you doing?
Posted 12/24/2012 1:09 AM (GMT 0)
Chartreaux, (thanks so much for asking) I see the rheumy the first week of the new year. I am going to get my blood drawn the day after Christmas and some x-rays taken to see what he wants to do. You know, this thing can be so elusive; in pain one day and not the next. I was just thinking earlier today if he wants to start me on mtx, I don't feel like I am bad off enough to take it. Tonight, I feel like death warmed over with my joints aching and fatigue....... My knees have hurt me the last few days and they haven't bothered me in a long time.

And, get this: last Saturday, 8 days ago, I got this horrible abscess under my chin. This thing was gnarly. At first, I thought I was getting a zit (unlikely at my age) but then it turned into this throbbing abscess. It's still there and looks like a huge nasty zit but it is drying up and much better. It's one thing after another.

Headgames, I think we can all identify with you. Your story is a lot like so many people on here, so you are not alone. Sorry to hear about your job-:) At least you can rest now. Have you thought about filing for disability? I try to stay away from MSG. That will make me sick within an hour of eating anything with it. I worry every day that I will get too sick to work. All any of us can do is take it one day at a time.
Posted 12/24/2012 3:42 AM (GMT 0)
Do keep us posted when and if your doctor starts you on mtx, we will all help you along, the first 3 injections, made me feel like I had a fever and sore throat, but the 4 th injection things settled down and I' m doing so much better and not as exhausted ( was exhausted a lot with the first 3 doses) but the folic acid is helping and my inflammation is a lotbetter, like everyone said it does truly help, my feet do not get so swollen, its amazing. So you kinda have to tough it thru. But mtx can help. I love it, now.
We can help you thru it, and the more you do the injections the better you get at it. It is so scary at first I won' t kid ya on that. But you will get good at it and I say its worth a try if yourdoctor recommends it. Good luck and well wishes into the new year and remember keep us posted wedocare and can help you thru it, okay.
Posted 2/13/2013 3:03 AM (GMT 0)
I am suppose to start methatrexate and am ambivalant.I read that it can cause lymphoma. I most certainly do not want that. That is the side effect I am most worried about.
Posted 3/24/2013 9:48 PM (GMT 0)
Big hugs OOOO. There is always hope. :)
Posted 3/28/2013 3:34 AM (GMT 0)
Jeanneac, I have been on both MTX and sulfasalazine for over a year now and I am tolerating it with minimal side effects...mainly some fatigue the day or so after I take it but it is helping. The one piece of advice is...Folic acid...initially my RA had me on one Folic acid per day and when I was having some problems she lowered my MTX dose and increased my Folic acid to 3 pills per day and that has helped. If you start the MTX, and have problems , ask your RA about increasing the Folic Acid. Good luck!
Posted 3/29/2013 3:37 AM (GMT 0)
There is an old thread from about three years ago when myself and another healingweller were starting methotrexate-I was completely terrified and dependent on steroids.
We kept the thread going through the initial months so it chronicles the journey.
I was off steroids after about 6 weeks. I still take the mtx but recently went down to 6 pills and 1 plaq-I take both.
Dropping meds may not have been smart though-my hands are stiff all the time.
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