Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group methotrexate update

Did the 4th dose (1st one at 15mg) last night. It gives me a funny feeling in the gut...not nausea or pain, just a weird feeling. And I'm tired for about 18 hrs afterwards. Most of these hours are spent asleep/trying to sleep. Taking folic acid on the other 6 days.

It may be working. It may be a little easier to get moving in the morning (for the first 4 days). There may be a little less pain at times or maybe it's just relocating. Feet used to be the worst...now the hip and back are the worst. Go figure. My lortab usage hasn't changed much, so I'll have to watch that 'measurement' of pain.

Got the DEXA scan last Monday, which I knew would be worse than the -2.1 I had 18 months ago. Since that time, I've been diagnosed with inflam arthritis and became menopausal, to add to my strong family history and already having a wedge fracture at T9.

The surprise came when the T-score came back at -2.4. I was expecting worse. Rheumy's office called and is putting me on Fosamax and doubling the calcium supplement. On my next visit in 2 weeks, I'll ask about Vit D testing and see if that needs higher supplementation.

I had the radiology folks send a report to my primary care doc, too. His office called me to report that he didn't feel treatment was needed at this time since it is 'only osteopenia,' which 'isn't a disease.' Maybe it's time to find another primary care doc. Had to complain for 6 months to get him to order the 1st DEXA 3 yrs ago. He said they don't screen for osteoporosis till age 65!!! I'm only 52 now....at this rate, if I was untreated till age 65???...scary thought.

Hugs to all of you....thank you for imparting your wisdom to those of us who are new to this disease.

Best wishes to you. The MTX seems to be helping my hubby. Didn't do so much for me. I hope it helps you a lot. Do get the Vitamin D testing. It seems most of us and most of the general public is Vitamin D deficient any more.

Blessings.
Possi

Hi Rumble,

I think I shared with you in another thread my progress with mtx. I'm also on 15mg. I'm still unsure as to whether it's the mtx or the prednisone that has brought my improvement. When I try to lower the prednisone, even by 1 mg, I have a notable increase in pain which makes me suspicious that the mtx is not necessarily working.

The good thing is I continue to have no obvious side effects.

Well, no side effects is good. Sorry it doesn't seem like it's helping yet. I might have you mixed up with someone else, but don't you take prednisone all the time (since you stopped and saw another rheumy, then started again)? How long have you been at 15mg? I remember you started very slowly. I was scared of the side-effects but have actually had less trouble with this than with most of the NSAIDs.

Hi Rumble,

Yes, I'm the person you're thinking of and you're right about the prednisone. The first rheumy put me on it (at 10mg daily), the second got furious at me when I tapered off it and the third wouldn't let me go back on it! In the end he agreed because I got so ill - my CRP was around 110 and my ESR in the nineties. I couldn't walk, couldn't function and was on huge amounts of pain meds. However, we've kept the prednisone at only 6mg this time and the plan was to keep it up until the methotrexate kicked in.

As I've been improving, it seemed like time to lower the prednisone and see whether the mtx was working or whether the improvement was entirely due to the low dose of pred. As soon as I lowered the pred by only 1mg, I got noticeably worse, which makes me wonder whether the mtx is working.

I've been at 15mg of mtx for about six weeks but I've been building up since July. I started on only 2.5mg per week and increased by 2.5 every second week until I reached 15mg (6 pills).

I was also terrified of the side effects which is why I went so slow. I was ready to drop it if I had any trouble at all so I'm quite pleased to have got to 15mg with no problems. Just need it to work now so I can come off the pred.

Hi, I was put on Methorexate for a while, It didn't work for me at all. Just made me feel very sick in the tummy & made allot of my hair fall out. (Gave my poor hairdresser a fright)haha.
Prednisolone seem"d to be the only thing that helped, but it was a very fine line, the disease still pretty much called the shots.
Been on Humira now for 2yrs, has been a godsend for the pain, But the stopping & starting with catching lots of bugs is a bit of a bugga.
Might be time for you to try another Doc..
best of luck
Mez