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Joined: Oct 2014
Posts: 47
Member
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OP
Member
Joined: Oct 2014
Posts: 47 |
Hi all,
I started enbrel, it helped with AS somewhat but I recently stopped taking it as I have small fibre neuropathy already and scared of further nerve damage. Having been on it for a few months then stopping I now find myself in the worst state I have ever been. The AS is ten times worse than ever was and I have iritis that will not respond to steroids eye drops two months down the line. My head is hurting so much. I was on naproxen and then after two weeks of it having awful tummy probs and toilet issues.so stopped that and suffering massively. I'm desperate for a bit of respite and asked my gp for a steroid injection - she said it is not known to help AS unless we target a specific inflamed joint. I need a little respite desperately as am caring for my 3 year old as a lone parent. Please can anyone advise regarding steroids? Can a corticosteroid shot provide some systemic effect and relief including for my iritis? Is my gp right. Any thoughts on steroid tablets? I've been trying to get to grips with NSD. I'm on LSD and have been for a number of weeks but no effect and just feel worse and worse. :-(
Last edited by SunnyD1979; 09/29/15 09:39 PM.
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Joined: Nov 2008
Posts: 13
New_Member
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New_Member
Joined: Nov 2008
Posts: 13 |
I've used prednisone tablets a few times to kick particulary nasty cases of iritis. My experience is that it's actually awesome for all the symptoms for a very short time. But I end up paying for it later, because kicking the steroids is really really challenging and I get all kinds of flare ups shortly after reducing the amounts or even stopping. Not to mention all the adrenal problems and blood sugar problems they can cause. I still have to use it every so often to keep my eyes from going too wonky. I wish I didn't.
Long story short -- My experience has been this: Awesome short term relief. Long term? Not worth it.
Last edited by edsger; 09/30/15 06:12 AM.
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Joined: Oct 2014
Posts: 47
Member
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OP
Member
Joined: Oct 2014
Posts: 47 |
Thanks. That's kind of bad news. There is a real rebound effect when you stop meds. Puts me off everything.
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Joined: Jan 2012
Posts: 229
Second_Degree_AS_Kicker
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Second_Degree_AS_Kicker
Joined: Jan 2012
Posts: 229 |
On previous bouts of iritis, I have always used prednisone eye drops which sorted it out for me within a week or 2 and there was some other gel stuff I put in my eyes before bed (it stings from memory). I haven't had any iritis for years now.
_________________________________________________________ Diagnosed AS year 2000 age 26; First onset of major symptoms came with severe food poisoning leaving me in chronic pain hardly able to walk/sleep/sit - never been the same since; HLA-B27 positive; bouts of iritis; no biologics ever, controlling with NSAID's and diet but trying to get off NSAID's through various "biohacking" experimentations; Live in Auckland, New Zealand
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Joined: Jan 2010
Posts: 2,105
Major_AS_Kicker
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Major_AS_Kicker
Joined: Jan 2010
Posts: 2,105 |
I've had better relief from oral steroids than the injection. I take them as a short course (2-3 weeks) two or three times a year and it definitely helps me feel a whole lot better while I'm taking them. However, within days of stopping, I'm back to square one. If I had an alternative I wouldn't take steroids at all, but right now I don't have any other treatment options. I definitely wouldn't ever consider taking them long term, even at low doses (though doses below 15 mg prednisolone don't really seem to have any real effect) because of the huge risk of side effects, including adrenal and osteoporosis.
I wonder if you have tried other NSAIDs though? I went through about five different ones before I gave up completely, and switching definitely allowed me to keep using them longer, as they were very effective with me. We are all different, and some people will tolerate one better than another, so its definitely worth trying more than one.
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Joined: Jan 2008
Posts: 21,346 Likes: 2
Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
Joined: Jan 2008
Posts: 21,346 Likes: 2 |
When I take steroids, its methylprednisone, for 6-10 days, 4 mg pills, the most on the first days, stepping down day by day til I'm at 1 pill on the last day.
That short course of steroids was always miraculous for me. I felt wonderful and the short course always knocked out the flare.
but i needed them every 10-13 weeks, so finally got on humira.
But I have diabetes and so steroids do raise my blood glucose. Thus now glad that humira has kept me off them largely. But in a pinch, I think they are awesome...except for the blood glucose thing...but if you don't have diabetes or prediabetes, that shouldn't be a problem.
I know some people have short term negative side effects, but I felt great on them, they stopped the flare, and I was better til the next flare.
sue
Spondyloarthropathy, HLAB27 negative Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.) LDN/zanaflex/flector patches over SI/ice vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K. chiro walk, bike no dairy (casein sensitivity), limited eggs, limited yeast (bread)
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Joined: Oct 2014
Posts: 47
Member
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OP
Member
Joined: Oct 2014
Posts: 47 |
Thankyou. I have small fibre neuropathy so am not sure how they might impact that but j have to try them. I understand they won't be the cure all but temp respite will be something. I have resistant iritis for 2 months and have developed extreme headaches and facial pain which I know is inflammation. Bit worried about it as its causing lots of problems, the pressure in my head is extreme. Thanks all for the replies.
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Joined: Jan 2012
Posts: 229
Second_Degree_AS_Kicker
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Second_Degree_AS_Kicker
Joined: Jan 2012
Posts: 229 |
I know that pressure and aching.....it's bloody awful! Do your eyes go blood red as well? I looked like some sort of demon once back when I had no clue as to what Iritis was and my doctor just thought I had an eye infection.
_________________________________________________________ Diagnosed AS year 2000 age 26; First onset of major symptoms came with severe food poisoning leaving me in chronic pain hardly able to walk/sleep/sit - never been the same since; HLA-B27 positive; bouts of iritis; no biologics ever, controlling with NSAID's and diet but trying to get off NSAID's through various "biohacking" experimentations; Live in Auckland, New Zealand
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Joined: Feb 2006
Posts: 1,178
Steel_AS_Kicker
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Steel_AS_Kicker
Joined: Feb 2006
Posts: 1,178 |
Hi Sunny, I agree as far as the uveitis/iritis, you need the steroid eye drops. As for the rest of the body, I've been on steroids quite a few times. At first it helped a lot, to the point that it's possible to over do it while on them. As far as side effects, mine were stomach issues, burning face, insomnia. Oh and they can cause you to eat more/gain weight or get the rounded face. Now after having used steroids all these years, they do not help nearly as much, if any. I still have to have them from time to time though not as often. I'm also on Humira. Good luck Sunny, I hope you get relief soon.
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Joined: Jan 2008
Posts: 21,346 Likes: 2
Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
Joined: Jan 2008
Posts: 21,346 Likes: 2 |
Hi Sunny, I agree as far as the uveitis/iritis, you need the steroid eye drops. As for the rest of the body, I've been on steroids quite a few times. At first it helped a lot, to the point that it's possible to over do it while on them. As far as side effects, mine were stomach issues, burning face, insomnia. Oh and they can cause you to eat more/gain weight or get the rounded face. Now after having used steroids all these years, they do not help nearly as much, if any. I still have to have them from time to time though not as often. I'm also on Humira. Good luck Sunny, I hope you get relief soon. Ah yes, forgot about the burning face. For me, it was only day 2 and 3 while on the highest dosage that my face was red and oh so hot...lots of cool compresses to the face to cool it down. But for me, that was minor compared to the relief I got overall. Good luck! 
sue
Spondyloarthropathy, HLAB27 negative Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.) LDN/zanaflex/flector patches over SI/ice vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K. chiro walk, bike no dairy (casein sensitivity), limited eggs, limited yeast (bread)
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