Hey folks - I'm new here. I'm a HLA B27 positive ank sponder who also experienced occasional inflam bowel disease and autoimmune autonomic neuropathy.
I've got the post Xmas rush flare happening at the moment. My usual techniques to calm it
include diet, fasting and licorice tea as well as NSAIDs.
anyone got any other obscure techniques? Bed rest? Bitter gourd?
Bed rest does us more harm than good - rather, try to keep moving, but nothing too vigorous or exhausting or painful.
I've not seen any "obscure" techniques that panned out unfortunately. Sometimes if you flare from overdoing it, the main thing to do is to dial it back and ride it out. Heating pad is good too!
Hi, and welcome!
The only effective technique for really slowing down flares (that I'm aware of) is the drug we love to hate- prednisone.
Biologics have definitely reduced the severity of my flares, but I still have them while on Remicade.
If you are asking about IBD flares, that's a different matter. For me, that would require a call to the gastro.
For me, alternating lying down and frequent moving around does help.
Moving gently helps. I usually set some sort of idiotic goal, like getting rid of paperwork but making myself move to do it. Or doing slowly, housework. One time I woke up in the middle of the night, and couldn't sleep. I cleaned the toaster oven and first took it outside to shake out the crumbs. Almost got it from a skunk!!!
Fasting is worse for me, eating a lot of small healthy meals. Califlower soup this time and pasta.
Like has been said, tiny doses of prednesone. Half a 5mg pill for a couple days. But I don't have bowel issues.
Definitely not bedrest for me - that will just make me seize up completely. I have fairly constant inflammatory pain, but over the course of a few months it will build up to being just about intolerable. At that point I have been hitting it with a short course of prednisolone (15 or 20 mg a day for no more than 10 days), which is enough to give me a break and get me back to being able to function. If I was still able to take NSAIDs, I'd be using those first at full dose. I don't do no starch, but try to keep low starch (does me just as much good as strict NSD), so in a flare I will be a lot more careful with my diet (cutting out grains completely, when I normally eat some rice, and reducing sugar), perhaps take a short afternoon nap (no more than 3 hours), and decrease the distance I walk but increase the frequency of short walks, getting outside in the fresh air as much as I can (I do use crutches, so am probably more limited than many folk here).
It takes patience to fast the four or five days to break a flare, but oils and especially GLA from borage seed oil can help very much. I have mentioned fresh wheatgrass juice often in this context, also.
During very bad flares, I could sometimes sit them out in the sauna alternating in water temperatures and rarely working out but seems that lactic acid and ketone bodies could have some beneficial properties, if not anti-inflammatory. I would not touch NSAIDs with a bargepole--they greatly accelerated my AS and haven't gone near them in 15 years, oddly coinciding with the amount of time I have not had 'active' AS symptoms!
Remicade greatly decreased my flares, but steroids is what I normally take for them. Heat is always good - hot tubs especially since you can get your whole body in 104 degree F water!
Getting into a hot tub as suggested above has been my go to for 3 decades. socks scarf at night. Aleve and arthritis strength tylenol at bedtime with a little snack.
I love my hot tub (wished I had gotten one sooner). But the relief from inflammatory pain is pretty temporary. However, it often makes me feel better overall, so easier to deal with AS pain.
Movement is definitely good, though finding the right balance between too little and too much is hard. Walking is definitely better than standing. I try to remind myself to get up and walk around the office at work often during the day. At home on weekends, I force myself to walk on the treadmill a couple times a day - even if it's not very long, I need to loosen up or I get bad.
Prednisone for the mega flare-ups that just won't go away. Heat (bath tub and microwavable pads), gentle stretching, and menthol back patches for thoracic spine and SI joints (Absorbine brand). Good luck finding your cocktail!
I see a few of you on anti tnfs take prednisone when you have a flare. I was wondering - does it help stop the flare or just help you get through it?
I was also wondering what dose helps you? Before I was on humira or methotrexate I responded best to 40mg pred, and not quite so well to 20mg, but I'm thinking (hoping) I might get away with less than 40mg on top of the other treatments?
I'm struggling at the moment and my crp is up to 18. Humira always wears out during the second week of the fortnight, but at the moment even the first week is a problem. Apparently moving to embrel's the only other option here in NZ - increasing the frequency of humira's not an option here - and my rheumy's loath to move me off humira until it stops helping completely.
Shirley, when I am in a flare, I will often start a long term steroid taper. usually starting at 4 pills for a few weeks, then 3 for a few more, then 2, then 1, then 1/2 ect. its about a 4 month taper and when I am off the steroids, the flare is typically gone.
I'm too scared of the side effects to try prednisone for more than 10 days or so at a time, but I'm glad that works for you.
Fasting plus high dosing of probiotics. finally broke a nasty Iritis flare for me
It seems like fasting does help alot of people. Unfortunately, fasting's not really an option for me as my stomach tries to digest itself...
It would be much easier for me to count the weeks I've been off prednisolone than on over the last three years. I think the longest might have been something around three months. The last year has been tapering off a two-ish year stint on the stuff and going through several ~one month tapers to head off flares.
I wouldn't be too worried about using it for longer than a couple of weeks, but that's something worth talking with your GP and Rheumy about.
As to the rest of my strategy. I allow myself to ease into the day, loosening up slowly and dealing with any bothersome hotspots. I make sure to go for a walk or run an errand at some point, even if I need my walking stick. In the evenings, I'll vary my sitting position from the sofa, to the floor, on my back, side, etc and use the wheat bag on joints and frozen bottles on the feet.
In a nutshell, prednisolone tapers and as much movement as I can manage.
Shirley, I can not tolerate pred, I take methylprednisolone (whats in a medrol dose pac) and get none of the side effects.
I've tried various steroid tapers several times over the years. Unfortunately, they don't seem to help in my case.