I got moved to a Biological pretty quick after being Dx'd if for no other reason than I was really overdoing the NSAIDS to the point my liver functions were being effected.
SOOOOO..... They recently decided I should take sulfazine or MTX because of my hands going to heck and increasing fatigue.. (Between my wife and Rheumy they follow everything) I thought I'd get out of it because its fishing season and the hatches are great so I am on the river every night and tying those itty bitty flys is always hard (actually I have quick change tippet because I CAN"T tie those itty bitty flys but I didn't tell the doc that) She didn't buy that excuse. The I said it must be because I have been picking huckleberrys every night behind the house so the wife will let me go fishing. (The wife point out she Knew that wasn't the case because she caught me bribing my Grandaughters hab-aids to come up with my quota - everybody should know how to pick berries right?) So I pulled out the best I had My liver was fragile from previous and I shouldn't risk the MTX.
That was a mistake. I was told if it was fragile, I had best quit the Keats club (we share drink high scotch whiskey while some gals from the U recite/read keats and we write checks for each sample for charity) We compromised with running liver levels and taking sulfazine if the levels were okay and i could stay in the Keats club
Anyway the test came back..... My once high levels were not only normal they were almost low except for ALP which WAS low. Anyway turns out it was a B-12 deficiency which was causing the extra fatigue and the low ALP.
In the course of the discussion whter we could fix it with shots, diet, or pills (they came up with shots BTW - of course, I'm already a human pin cushion) the B-12 girls asked me if I was taking FOLIC ACID supplements as so many arthritis patients do. Apparently Folic acid can reduce B-12 and mask the test results. The one little gal was actually thinking of doing a thesis study on the use of Folic Acid with DMRDS/chemo and reduction of B-12.
So MTX folks your fatigue could be B-12 related because of the folic acid you take. Might be worth asking about???
Meanwhile, Good News, I'm in the Keats club (didn't tell her about my monthly wine tastings or micro brew habit) and trying the B-12 shots for fatigue.
Bad News, no reason I can't go on MTX ( we will try sulfazine first) Oh and the fishing is good
Glad you were able to straighten that out to remain in your beloved 'Keats club', and continue fly fishing!
One of the gals on the Fibro site said that her Rheumatologist wanted to check her B12 levelshttp://www.intelihealth.com/IH/ihtIH/WSIHW000/9339/20862.html# before giving her the dx of Fibromyalgia. This is a new proceedure to me, but perhaps we are predisposed to this deficiency even before the Methotrexate, which could further deplete it. It seems anything is possible with autoimmune!
Hi Lamb, did you get an explanation of why your B-12 is low? (after all, you aren’t on MTX or folic acid).
Injections are often used when the little part of the intestine that is supposed to absorb it doesn’t - and the main two reasons are coeliacs and Crohns.
BTW, if you look like needing MTX, speak up. I’ve lost the links - but with some work I’ll be able to find them - the only decent information I could find on MTX, alcohol, and liver damage (reasonable retrospective studies in a rhuematology journal).
The punch line is exactly as my (very practical but not always right) Rhuemy advised me;
No alcohol the day before MTX, none for 72 hours after, and a max of 15 (Australian) standard drinks a week.
I’d be surprised if you couldn’t be a member (though perhaps more sober than others) of the Keats club with those guidelines!
So if I am reading this right, they put you on a Biologic BEFORE putting you on DMARDS??? How in the heck did you manage that!!!! That is great news for you, but I am just wondering how you pulled if off as I still cannot get my Rheumy to commit to a Biologic without 3 more months of MTX (I've been on it 3 now with no results as of yet...she said 3 is the minimum). Anyway, funny that you should mention that about the B12...when I started taking the MTX and the Folic acid, I started taking B12 supplements as well to help with the fatigue. I just thought it was kind of interesting that you found that out (in a much more scientific way) that I did. I do think it helps though. Hope it helps you out!!! I don't have to get the shots though...so far I am a pill eating machine, not a pin cushion.
I started my Enbrel and MTX at the same time. I was very fortunate that I didn’t have to do the step treatment. Basically the step treatment is largely in insurance thing alot tof the time. My X-rays showed that in less than 10 months I hard gone from a normal X-ray to SI joints being already grade 1+ and my cervical spine is pretty bad. I also had calcification in my feet and heels from chronic inflammation. I had been suffering for a while but had been previously mis-dx as osteo and just plantar facisitis. So she was able to make the case that it was severe enough to go straight to everything! I had already been taking way too many NSAiDs - too high a dose - so she reduced the NSAIDs to what they should have been and gave me MTX and Enbrel. It was through the insurance in less than a week.
I have good insurance and that helps. It also helps to work with whomever is writing up the justification to the insurance to make sure everything you have is included.
I
Officially I am a spondy with more than 5 joints affected.
I'm officialy a spondy too, Sharron. I'm not making lght of anyones condition, but its pretty scare that as bad as this stuff can be, that it can be so much worse.
There are TWO programs with Enbrel. Make sure you apply for the right one. No insurance etc. is through the ENcourage Foundation. Applying for One does NOT apply for all.
Mmmmmm this is the second time I have heard B12 deficiency and fatigue mentioned........my mate has diabetes and her meds have reduced her B12 and with some starting shots and now tablets her enegy levels are increasing..........Thanks for the tip :)
15 drinks a week??? wow.. who's your rehumy? I'd like a referral.. seriously though; that seems pretty excessive.. my rehumy recommended none at all but at most no more then one drink a week, and an occasional holiday bash or whatnot.. now everyone's different, but heck, even if MTX did not process through the liver, that's a bit on the high side for most folks - about twice the USDA recommended amount for a healthy woman.. and equal to a male recommended weekly amount, although that's again, considering a healthy body with no other liver risk conditions or meds
I love and miss my IPA's and Shiraz but I love life more, so I am not taking any chances..
JenAus said:
No alcohol the day before MTX, none for 72 hours after, and a max of 15 (Australian) standard drinks a week.
I am B12 (and B6) deficient and when I don't take my supplements, the fatigue is killer.
I was put on Enbrel right away due to the aggressiveness and severity of my Psa / spondylitis and my liver issues. I have it in nearly every joint, have partially fused SI joints, and have constant pain. Enbrel worked on arms and legs, not so well on spondy. Remicade seemed to be working wonders, but I may need to go off of it.
I'm on B2 (riboflavin - for migraines, also helps with energy levels), B6, B12, D, and Magnesium supplements. Vitamin D deficiency is fairly common among people with PsA and studies have shown that treating Vitamin D deficiency in people with PsA can decrease back and limb pain. Vit. D deficiency is also common in people with liver issues.
I dont know bout the b-12 shot but i took a capsule i got from gnc. Made me feel like crap. And i tried it more than once. Im afraid to get shot of the way it might make me feel. I need help so bad. I sleep all the time. I went to rheumy and they took all that blood wednesday. I woke up thurs to go to work, couldnt even function. When i got home wednes at 10:30, i slept till 4:30. Woke up and went to bed and slept again. Slept all day thurs. this is crazy. Wat can i do?
The B-12 shot has way more in it than the pills. The good thing about b-12 is that it is water soluable so if you take too much, it will release from your system (no vitamin toxicity). My fatigue is much better now that I get the shot. It has also helped my neuropathy in my feet - I feel a lot more and the numbness isn't nearly as annoying, resulting in less of a fear of falling.