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a newbie ramble, at a low time

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Rheumatoid Arthritis
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Posted 9/21/2012 8:58 PM (GMT 0)

I am just feeling like crap and am at that stage where I am fairly new to RA and it's challenges, new to taking methotrexate, fighting the 'it's all in my head' self talk, and new to getting my life in order to get on with this as comfortably as possible. I was diagnosed with RA seropositive close to 2 yrs ago, and in hindsight realize I've had it for around 8 yrs. After my first visit with my Rheumatologist he put me on sulfasalazine for 2 mos. until I just couldn't handle the side effects. He then gave me a kenalog injection for the current flare (wow!, so effective) and put me on minocycline, hydrocodone for the bad days. For the next year I needed a kenalog injection approximately every 5 mos. which worked temporarily. And now I have been on methotrexate and folid acid for 7 weeks, and know that I have to make this work. At this time I feel like the all-over flare up has subsided, with upper back and hand pain present every day, and pretty regular big pain tweeks on and off, depending on what activity I do. I am 63 yrs old and pretty active, hiking with my husband and dogs as often as possible (3x a week no matter what I feel like), and saddened that I don't ride my motorcycle like I used to - side effects of the drugs I take and weakness being the cause, however I feel that (hope that) is going to get better. Housework puts me out of commission for the following day. I had a big going-away party at our house for a friend last weekend, and don't feel like I have recovered. aaargh. For that past week my lower back/buttocks have been hurting like crazy, and together with my metho-nausea, I am miserable. A note on methotrexate for me:  the first 5 wks I felt no nausea for the first two days, then waves that would come and go. The last two weeks I have felt pretty constant nausea from day one.

I want to be able to live with this as actively as possible.  I don't want to sit around and feel like crap. I don't want it to get to where I am today - very depressed, after eating sugar for my depression (hmmm....that does not work for me). And I want to not get impatient, pissed off, want to avoid my friends who just don't seem to get it when I am too tired to do much after the afternoon. Some of them are soooo stupid. Ok, so enough of this rant. I feel I need to get this out, to sort things out .... to get myself on the positive track.  Thanks for listening, if you got this far!!  ~Kelsey

Posted 9/21/2012 9:43 PM (GMT 0)
Hi Kelsey,

Welcome to the r.a. board. I'm fairly new to r.a. myself. Just diagnosed at the end of May. Like you, I'm seronegative and I have been second guessing myself since the diagnosis. Same thing, it must be all in my head but my pain is very real. The worst part for me is the fatigue. That's what I noticed first and then the stiffness. My hands hurt just driving to hold the steering wheel of the car.

The Nurse practitioner who saw me at the end of May suggested in might be r.a. and I immediately said, "No way". My brother has r.a. and he was really sick with it. He's had surgery on his joints and his blood work was really bad. I said I'm tired and my hands and feet hurt. Must be from all the travel I do for work. So she did blood work and also x rays. Blood work was negative and the xrays showed osteo in both hands. (so I have both) She first put me on 30mg of Prednisone for 2 weeks and no taper. I was nervous because I'd only heard about tapering steroids or you have problems yada yada but I guess they do short term bursts. Well when I was done with the 2 weeks, the day I stopped I felt like I had hit a brick wall. Everything in hurt. My spine, wrists, hands , fingers, ankles, feet , toes. So back onto the prednisone I went and more bloodwork.

Without boring you with more details. I'm not on methotrexate 5mg on Sundays. Prednisone 7.5 mg daily and tylenol w/codeine for pain as needed. They tried Celebrex but I broke out in a rash.

I'm still dealing with the fatigue. Next he's going to try hormones as he has found with some women who start with r.a. that are menopausal, the hormones will sometimes kick r.a. to remission and you get your energy back. I hope he's right. I'll find out once he starts me on them.

I don't have nausea with mtx . I take some stomach antacid and that helped. But I'm on a low dose. What is your dose?

Again, welcome. I've learned a lot on this board and have lots more to learn ! tongue
Posted 9/21/2012 10:10 PM (GMT 0)
I'm sorry that you are struggling. A new diagnosis is overwhelming. Then add in side effects of meds and it's no wonder we all want off the crazy ride.

How do you take your mtx? I've found that taking it at night works best for me. I'm able to sleep thru most of the side effects.

I hate that your friends are adding to your stress. While you may find yourself with fewer friends, I bet they will be truer friends. Wow-that's a good little rhyme :)
Posted 9/21/2012 10:16 PM (GMT 0)
Wow, I just re-read my entry above. I said "I'm "not" on methotrexate. Yikes. I guess I am wishing I wasn't so I typed it like that! freudian slip? yeah yeah

I "am" on methotrexate 1 x a week on Sundays. I take 2.5mg at 8am and 2.5 at 8pm. It makes me tired on Monday when it's time to get up for work...
Posted 9/25/2012 5:35 AM (GMT 0)
Hi Kelsey, when I first started on methotrexate I couldn't stomach it either. I ended up going off it for 3 months then starting again at a much lower dose and slowly over months building up to the 20mg I am on now.
I was also put on sulphasolasine. I found the mtx really helps with the swelling if you can tolerate it, drink mountains of water the day you take it, every hour have another glass and then don't forget the folic acid the next day to dampen down the toxicity. I can still get a headache from it but no longer get the nausea.
My sisters tell me I use to look so ill when I first started so even though it is super toxic our bodies can adjust. Its hard though, hang in there, take a day at a time, maybe go on a low dose course of prednisone until the mtx has had a chance to work.
Best wishes, golitho
Posted 9/25/2012 12:04 PM (GMT 0)
I have the best luck taking MTX in the evening after a full meal. They did have to reduce my dose, because my liver didn't like it. But the reduced MTX is working well. Sometimes you don't have to take a large dose, especially if you are also on a biologic. Hang in there!
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