I saw my Rheumy on Tues. He was unhappy that I had quit taking Humira because it wasn't helping at all. He was insisting that it was helping. He wants me to see a Pain Specialist. He faxed my GP to refer me to a pain Doctor for shots in my SI.

My GP wants me to try taking Pred for a couple of weeks first,5-10 mg /day. I go back and see him and then he will send me to the pain doc if I need to go. In the meantime he is sending me in for a Dextra Scan to see if I have any sign of Ostio. because of all the steroids I have taken over the years.

I sure wish I could find a new Rheumy. The closest one that I can find in the phone book is 90 miles away, the next closest is in Sacramento, 150 miles away. It is hard to arrange to go long distances when I have to take my granddaughters to classes at HS and collage everyday. We live out in the country and there is no public transportation.

Have you tried other aTNFs? (I'm liking Enbrel, but Remicade was a bust.) Also, a pain doc would be great for you, I imagine. Mine is wonderful--my favorite doctor. Sorry the Humira didn't work out. Hugs.

i have another idea. is there a good GI doc around that you could go to. since you have the IBD and then the arthritis presumably comes from that, could the GI doc help manage your IBD/AS?

while glad i have the combo of good rheumy and good GI doc, either might be enough.

i know my stepfather only goes to the GI doc for his crohns (other doctors for other things) but not a rheumy. though he has the enthesis and joint issues, that's only when his crohn's flares. so if the GI doc can help him manage the crohn's, the joint stuff is ok.

just a thought. maybe that wouldn't work for you.

I don't understand why your GP wants you to take oral pred before seeing the pain doc, particularly if as you say you have had loads of steroids in the past and there is a suspicion of osteoporosis. The oral pred at best is just going to give you temporary relief, and you would still have to end up going to the pain doc I would have thought, so why not avoid the potentially damaging oral steroids and just go straight for the SI injection? I've probably missed something in my thinking on this, but it does seem a bit odd to me.

This reminds me, my pain doc is extremely cautious with steroids, so if I were to show up with steroids already on board, she would likely NOT want to do any injections for 3 months. Also, it's hard to ascertain what your pain levels are on steroids, for obvious reasons. A pain doc would probably take your word for it, but it might gum up the works. But if it's going to be a while till an appt, why suffer? But on the other hand, osteoporosis is a real risk.... That's about 4 hands already, so I'll hush. Big hugs, Donna. Hope you get some quick answers and quicker relief.

We plan on keep it to 5 mg, I am starting at 10/day for a few days to get started and then go down to 5. That is less then what our bodies make naturally, just all at one time of the day. It's just that I have been in a lot of pain and the GP doesn't like to put people on the stronger pain meds. I am taking 5-6 Norco's/day.

I guess he is not too happy with our local pain clinic. Part of my problem is that I have pain in so many places, feet, knees, hips, ribs breastbone, shoulders, elbows, wrists and hands. Getting shots in my SI isn't going to do much for all the other places. I would be fine if my dumb Rheumy would just agree that I could change to another TNF blocker. He wants me on Humira and I wont take it anymore because it quit working. He is so stubborn.

My pain doc has me on various modalities. Injection is just part of it. I've tried (and liked) voltaren gel, mobic, gabapentin, percocet. Tried lidoderm patches but didn't get anything from it. She wants me to try Cymbalta, but I'll have to get back to you on that. I took one pill a couple weeks ago, but had a lot of issues with diarrhea the next morning. May try again this weekend while I'm off. Pain management is more than narcotics and injections. Hope you get some relief. Hugs.

i can't remember the exact details regarding our conversations regarding LDN, but thinking you can't consider it cause you need the pain meds. but it was really the LDN that made my enthesitis so so much better. and the flector patches like we both use for my SI. and the chiro for my upper back (mostly making sure the ribs aren't rotated funny, he pushes them gently but firmly back into place.

really now its just preventing flares that we're up against.

not sure if its the LDN and / or all the supplements i list, but they got me feeling pretty good in between flares.

i also started acupuncture. not sure if its the acupuncture or just coincidence, but my bowels have been better these last 2 weeks than they have been in some time, and today when i went to the chiro, things needed very little fixing. acupuncture may not do anything, but it probably also won't hurt. may be worth a try for pain management?

i'm with you about the shot to the SI. when i had it done in 2002 topically, it worked perfectly for a year. i consider that worth it. when i had it done again in 2009, they did it deep into the joint under fluoroscopy. it hurt while they were doing it (assuming due to the inflammation and thus fluid in there and then pushing more fluid into the joint) and then really only lasted a few months (6 tops, but not even a full 6 months), not worth it; that's when i started the flector patches. i read recently that for many of us, the topical shot is going to get to the real area of inflammation, the ligaments holding the joint together. and if the cortisone is delivered into the joint, unless there is a weak point where the cortisone can get out, its better to do the shot topically. i only remember reading that because that was my experience. but the doctors up here only do the deep shot into the joints. so instead, flector. which is great except during flares.

my only real advice is "if you can't get a rheumy to let you try another biologic, then maybe a combo of things, like i'm doing." we (rheumy and i) talked about ssz and biologics, but for now have decided to keep with the other stuff instead cause its working pretty well in between flares. and if we can just get the flares to stop.....

I am hoping that things get better when the weather warms up. It keeps swinging from good days to cold and rainy. I was much better earlier when it was warmer. I do take Mobic, Ultram and I use the flector patches a lot. I keep switching from place to place with those. I found that if I cut them in half, they fit on my shoulder or on the spot just below my knee where I have so much enthesitis. My Pharmacist called the manufacture and they said it was OK to cut them in half, unlike the pain patches. I am just afraid of over doing them.

Hi Donna, gosh, sorry you are having so much trouble getting things sorted out for max benefit, I know that must be frustrating... I do better in the warm months also, I have another friend that lives in your region and she was just saying the same thing yesterday, that yall's weather was changing back and forth constantly and it's causing her some grief, I really hope they get things sorted out soon for you...big hugs!

i've been using whole a flector patch over my SI and changing it every 12 hours, every day, for the last two years. no side effects that i'm aware of.

when my liver enzymes went up, i was afraid it was the dichlofenac in the flector patches, but they've been coming down on their own since i stopped gaining weight and stopped the oral nsaids. so the flector patches seem fine, far as i can tell.

while i've wanted to move them around at times, my SI does much better with the constant steady stream of medication. so i use ice, heat, KIP (nsaid) gel, ultrasound, etc on the other parts as needed. for me, when the SI is bad, i'm completely disfunctional, so for me, that's the most important thing to keep calmed down, but i know we're all different in that regard.

i so wish you could try the LDN, practically eliminated the worst of the enthesitis. before LDN torn tendons and ligaments every time i had a significant flare. now maybe a little tendonitis when i flare.

Hi Sue: I wish I could try the flector patch. My doc prescribed it for me but my insurance said they would not cover it. Instead, I am using the Lidoderm patch at bedtime. It helps a little but not enough .

I am like you, when my SI is bad, I am very dysfunctional . This is where I am now and cannot take any oral NSAIDs due to a stomach ulcer.

My doc said no to the LDN.

Glad to hear your liver enzymes are going down and that you are hanging in there without oral NSAIDs .

Shari

Winter - print off the LDN information and give to yr doctor. SHow him how much LDN is helping so many *including ASers. If he still refuses then can try running past yr rheumy. Or, can purchase on-line.

LDN can be rendered null by taking with other meds, so be sure to check out whatever you do take 'with' the LDN guidelines (see LDN/low dose Naltrexone in the Alternatives forum).

hi shari

writing it here too in case you miss the other post:

if i were you, i'd write a letter to the insurance company, give it to the doctor to send to them on your behalf. i did that for vioxx (back before we knew how bad it was for us) and explained why i couldn't do nsaids and why i needed the cox2 inhibitor, and i got it. sometimes petitioning the insurance company works. worth a try if you can. i'd be persistent about it with both your doctor and the insurance company. i don't know what i'd do without the flector patches; i practically couldn't walk before i started using them. things like shopping were completely out of the question. taking walks was impossible. now, except when i'm flaring, its pretty ok. so do push for it, as it really could help if yours is like mine.

as for the LDN, molly gave you some good advice. another way i was told: find a local compounding pharmacy. ask for the name of doctor(s) who prescribe LDN. then make an appointment with one of those doctors. i go to a naturpath for that reason, though my current rheumy does prescribe it. since i've shown how useful it is for me and that i haven't had any side effects, he's more than happy to prescribe it. but he tends to mix traditional drugs, supplements, alternative treatments, whatever it takes is his motto. good luck with that as well.

i definitely went to doctors who wouldn't do either flector patches or LDN, so i moved on. its nice to have someone as motivated as i am in having me feel better