Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Hey I'm New!

Hi Shannon, and welcome to KA.

1. Will the cold/rain/humidity make me feel worse?

It might. It might not. It depends on the person. I find that cold dampness hurts like hell, but warm humidity makes me feel better. Others have a different experience.

2. Do you hurt all the time, and then additionally have days that "flare" much worse, or do you have some days that hurt and some days that don't? (i bet that is a different for every person question)

You're right, it is different for every person. I haven't had a fully pain free day in almost 15 years (even tho I'm on a biologic). With me, it's degrees of pain.

3. Does anyone here take Simponi injections? Do they sting? My DH takes humira for Chron's and they hurt like a B according to him. I give him the injections so ..ya. ow.

My sweetie and I are both on Enbrel. The only time our injections sting is if we haven't left the med out long enough for it to come to room temperature, or if we hit muscle instead of fat. Then we both go through the roof!

4. What the heck is methotextrate (sp?) Some of the TFN brochures read something like "when taken with methotextrate" Does that mean the M is in the injection or is that something else I have to take in addition to the injection?

Methotrexate is an old chemo-therapy med that has been found to be very effective in people with inflammatory arthritis (Rheumatoid, AS) in much lower doses than when given for chemo. In people with Rheumatoid Arthritis, it has been found that the often respond better to a biologic med if they are also taking Methrotrexate (MTX). In people with AS, it's a crap shoot and the jury is still out as to whether MTX will give better results combined with a biologic.

5. I asked my doc for exercise recommendations and he refused to say anything. I mean really, he said, I don't give exercise recommendations, find something you like to do and doesn't hurt you and do it. Sooooo helpful. So does anyone have anything SPECIFIC that you do? I like to walk, but it hurts my feet a good deal, even with foot inserts. I can swim in the summer, but it's Sept now so....thoughts?

You'll find that most rheumatologists are the same in this; alhtough, he/she could have at least referred you for physio. Swimming is extremely good for us, but I would recommend a warm water pool. Also, your local chapter of The Arthritis Foundation will have some good suggestions for exercise and may be able to tell you where you can find a warm water pool in your area. Tai Chi and Yoga are very good for us. I recommend Pilates, which has been found to be extremely good for people with AS in a study I just found out about. But if you do pilates, find a class with a teacher who is willing to work with you and learn about AS, as there are some exercises we should not do.

6. My doc didn't say one word about diet, other than to tell me to not take calcium pills, but eat my calcium from regular food. But I see on here tons of stuff on low carb. Is there any research that backs that up or is it just well we tried it and it worked for me so you should try it too. (which is fine, I just wondered)

OK, if you can find food that will give you 2,000+mg of calcium a day, along with magnesium and vitamin D, go for it. However, I rather doubt that is physically possible. We need more calcium that other folk because our bodies abuse it. Magnesium and Vitamin D are essential when taking calcium because on helps your body absorb the calcium efficiently and the other helps your body utilize it properly.

Very few doctors will talk about diet at this point. They don't seem to think it makes much difference. Please check out the No Starch Diet forums here at KA for more information. Some folk find that they get relief only by eliminating all starches; others find that following a low or restricted starch diet is helpful; others find that it makes no difference whatsoever. Diet, like every other treatment out there, is personal and what works for one of us will not necessarily work for another.

The other thing you might do is see if your local chapter of The Arthritis Foundation is doing a class called The Arthritis Self-Help Program (in Canada it's the Arthritis Self-Management Program through The Arthritis Society). This is a six week program, two hours of class time a week, that has helped thousands of people living with arthritis take control of their lives again. It was designed at Stanford University to be taught by people living with arthritis to people living with arthritis (and to their family members if they want a better understand of what you are living with and what they can do to help). I took it in 2004 and it really helped me turn things around. I liked it so much that I became a Leader of the program six months later so that I could help other people like me learn to live with their arthritis.

And congratulations Mom!!! There are a ton of folk here who are parents to younguns. You're in good company!

Hugs,

Wendy, just thought I'd send you a hug.

Warm hugs,

Hi Tia, you've got it, you're here--perfect place. Talk all you want, ask whatever you want. We are here for you. If you look over there on the left, and up a little...there are some handy links to click on. Glad to have you here and hope you are feeling okay, let us know what's going on.
Best,

Thanks Kat! Sending one back to you.

Hi and welcome. I don't have any experience with either biologics or methotrexate, so won't comment on those. I do a low starch diet rather than a no-starch one (loosely following Carol Sinclairs "IBS low starch diet" book). It does enough for me to not want to bother with the extra effort of no starch at the moment. Itgs all individual though - some folk do seem to have to go absolutely strictly no starch for it to work, and some don't get a positive response either way.

As far as the exercise goes, there are some good stretches to do to help retain flexibility. You should be able to find these on one of the AS society sites. NASS (the Uk one) definitely has a downloadable brochure of exercises.

**We need a like button in this forum. You have some great information already.
Welcome!!
The only ting I wanted to add is it's really important to keep moving no matter how much it hurts. Pain management doctors and PTs have really helped me work through the pain instead of making it worse.
Try not to focus on what your future may hold or when you will get a break from the pain, rather focus on doing the best you can to fight AS today! Keep moving!!! Tomorrow will take care of itself worrying about it will only add stress - which can also bring on more pain (in my experience).
Carrie

1. Everyone is different but in my experience, sorry to say: yes.
2. We're all unique, but as for me, some days I feel fabulous. Some days I have awful! Many days I have a baseline of having some symptoms of spondylitis.
3. I don't.
4. I'll let others who know about this answer.
5. There is a wonderful set of exercises here that Cindy has, let me try to find it. But if you like to do yoga, pilates, and swimming in heated water, all those things are great as long as you listen to your own body and go at your own pace. If you go on SAA you can get a list of rheumatologists who specialize in AS:
http://www.spondylitis.org/
If you get special inserts made just for you, this may help with your plantar fascitis pain. Did I spell that right? I wear Sanita clogs all the time, because they help with that a lot for me. There are special stretches that help with plantar fascitis:
http://www.heel-that-pain.com/plantar_fasciitis/exercise/plantar_fasciitis_exercise.php
6. Diet. Lots of information here. A special section for people following the no or low starch diet. Carol Sinclair wrote a book about this which is very helpful and easy to understand. The IBS Low Starch Diet is the title. Don't worry if you don't have IBS, it still applies.
Dr Ebringer:
http://www.youtube.com/watch?v=ZFFmqH66ORM
************
Congratulations on your new baby!! I'm sorry you have to deal with AS, but hopefully you'll get the care that works for you, the treatment that meets your needs, and find that stretching and other exercise make a big difference.
Best wishes,

1. Will the cold/rain/humidity make me feel worse?

maybe. seems variable from person to person.

2. Do you hurt all the time, and then additionally have days that "flare" much worse, or do you have some days that hurt and some days that don't? (i bet that is a different for every person question)

i don't think i'm ever really pain free. but i manage ok in between flares. but the flares are a nightmare. so the challenge for my new rheumy is figuring out how to prevent these flares or at the least, nip them in the bud. flares suck; no two ways about it!

5. I asked my doc for exercise recommendations and he refused to say anything. I mean really, he said, I don't give exercise recommendations, find something you like to do and doesn't hurt you and do it. Sooooo helpful. So does anyone have anything SPECIFIC that you do? I like to walk, but it hurts my feet a good deal, even with foot inserts. I can swim in the summer, but it's Sept now so....thoughts?

PT is a great place to learn about exercises.

as for exercising, i walk. but more than 1-1.5 miles and my feet flare, my hamstring tendons flare, etc. so i just walk a little every day, not too much at one time. and i walk on the dirt or grass, not hard manmade surfaces.

also flat shoes work better for me than even the most expensive custom made orthotics. so play around with shoes and inserts and see what is truly best for your feet. not what is SUPPOSED to be good. my podiatrist tried to get me into the custom made orthotics, but eventually agreed with me that for me, flat flat shoes with no arch support at all, no inserts, no orthotics was best. we're all different. some here swear by the orthotics, others have chimed in with me that flat is best.

when i can't walk because of my feet or SI joint, i can still bike on a stationary recumbent bike. i also like to get on my bike and ride along the erie canal bike path. we're lucky to live less than a mile from the erie canal. and with the pretty fall leaves, its very nice. so far my body is ok with me riding a bike. so long as i don't over do it.

i used to take a yoga class, but kept pulling tendons, so now i just do it myself. since i learned how, i can do it on my own. and i know which exercises to avoid. like the bridge always throws my SI joint out, so we don't do it. even told the PT that one was out. a lot of the yoga poses and PT exercises are very similar so i kind of combine them now.

band exercises are good for me. strengthening, but not too much. my tendons always seem to get aggravated by weights, but bands are ok. learned these exercises through PT.

Kat here swears by pilates. i've done some pilates and find it similar to the yoga.

6. My doc didn't say one word about diet, other than to tell me to not take calcium pills, but eat my calcium from regular food. But I see on here tons of stuff on low carb. Is there any research that backs that up or is it just well we tried it and it worked for me so you should try it too. (which is fine, I just wondered)

i'll leave most of the diet stuff to others. i'm low carb, low starch diet, for my metabolic syndrome, and it works great for that, has lowered my blood sugar to below prediabetic range and has lowered my triglycerides significantly and raised my HDLs a bit. but i've had less success with it concerning my arthritis. maybe i'd have to be completely no starch. but with my blood sugar issues, its a juggling act. but others have had fantastic success with diet.

as for the calcium. i have to respectfully disagree with that doctor. all my doctors have me on calcium pills as i have osteopenia. diet alone is probably not enough. calcium pills and dairy were flaring my gastritis. but then i was told to try citracal (calcium citrate) and BINGO, that is great. its Calcium plus vitamin D. i take ~2000 mg of calcium a day, ~3000 IU of D a day, 200 mg of magnesium a day. all for my bones. plus other stuff.

i've also been instructed by my doctors to take a good quality fish oil and vitamin C. both for the inflammatory arthritis and metabolic syndrome. not sure how much they are helping the arthritis. though i am better in between flares. but my flares are just as bad. but have noticed a positive effect on my blood sugar and cholesterol numbers.

speaking of diet. my naturpath doc had me get blood work done to test for food sensitivities. and i am very sensitive to the casein in milk and egg (protein?). the theory is that the inflammation in my gut (seen via a colonoscopy up into my illeum) has produced leaky gut (where food antigens can pass through to the blood stream) and then they cause inflammation in my joints (for me that's specifically the entheses where the tendons and ligaments attach to the bones). so i'm off dairy and eggs. we'll see how much that helps. my gastritis does seem better when i'm dairy free. so maybe there is something to this.

1. Will the cold/rain/humidity make me feel worse?

For me, I don't do well in winter. Every winter I dream of moving south for 6 months...i.e. "Winter Texan." But since the weather patterns are similar (low pressures and storms), just a little warmer, I suspect I wouldn't really feel better. Cold doesn't help much, but I dress in layers.

2. Do you hurt all the time, and then additionally have days that "flare" much worse, or do you have some days that hurt and some days that don't? (i bet that is a different for every person question)

Yup, different for everyone. Right now, I hurt all the time. I've had 2 injections of Enbrel and have been back on MTX for 7 doses after a 3-month break in all treatment because of an infection. I've got a pain mgmt doc who is getting my SI joint and lumbar pain under control and she does my narcotics, too.

4. What the heck is methotextrate (sp?) Some of the TFN brochures read something like "when taken with methotextrate" Does that mean the M is in the injection or is that something else I have to take in addition to the injection?

Rheumy started me on MTX when sulfasalazine didn't do anything. It took some time, but it DID help some. But not enough for me, so he added Remicade last year, but that didn't help either. Now trying Enbrel. There is varying opinion on MTX for AS. At the low dose that we take, there are few side-effects. Doc will likely track your blood counts and chemistries to make sure all is well. MTX is taken once a week, very small pills. I take it at night on Friday. I've taken it in the day and had no problem functioning, though. Some people mention tiredness or a little nausea. Other than the first dose, which gave me some weird feelings in stomach, I've had no problems.

5. I asked my doc for exercise recommendations and he refused to say anything. I mean really, he said, I don't give exercise recommendations, find something you like to do and doesn't hurt you and do it. Sooooo helpful. So does anyone have anything SPECIFIC that you do? I like to walk, but it hurts my feet a good deal, even with foot inserts. I can swim in the summer, but it's Sept now so....thoughts?

I spend most of the time at work on my feet, so I have little energy to do anything else but stretching. But do what you can when it doesn't hurt and stretch during those painful times. I know what you mean about the foot pain. It is my worst pain right now. Maybe those inserts aren't the right fit for you. You might ask for an adjustment if they are custom or look for over-the-counter versions to try. I like the NewBalance cushy insole that I find at the NewBalance store, or they are online.
insoles

6. My doc didn't say one word about diet, other than to tell me to not take calcium pills, but eat my calcium from regular food. But I see on here tons of stuff on low carb. Is there any research that backs that up or is it just well we tried it and it worked for me so you should try it too. (which is fine, I just wondered)

Since AS can cause osteoporosis, it is important to make sure your bones get all the calcium they can. A body can only absorb up to 600mg at a time, so it has to be divided. Vit D helps with that absorption. I take calcium at night, but take strontium citrate in the morning for osteoporosis. I couldn't tolerate the Fosomax or Atelvia that I've tried in the past. Like someone said, it's tough to get the minimum calcium your body needs in your diet...and that minimum changes from time to time. Not sure if it's 2000 or 1200 right now, but there is a lot of discussion on what it should be in the medical community.

I tried the low starch diet for a time and didn't see any results. Some foods I just didn't want to part with (bread) because I didn't want to sacrifice another part of my life (to fuss with a diet). But there are some who have had stunning successes with the diet. There is a forum here regarding the diet. You should check it out.