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Joined: Feb 2010
Posts: 1,127
Steel_AS_Kicker
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OP
Steel_AS_Kicker
Joined: Feb 2010
Posts: 1,127 |
Went to my doc today. After my rheumy said he had never heard of LDN and that he couldn't prescrib it if there had been no studies done, I was feeling a little defeated.
But I thought what the heck, may as well ask my GP and see how I go.
He had never heard of it either but googled it while I was there and asked me all these questions about it.
To my pleasant surprise he said ok. He said I have obviously done my research and there doesnt seem to be too many side effects at such a low dose so he wrote me a script.
All I have to do now is find a compounding pharmacy somewhere close and I will be sailing.
I know this is not the answer for everyone but after developing a fear of conventional treatments/drugs for AS I thought it is worth a try.
So yeah I have new found optimisim and if nothing else it may at least have a placebo effect.
If anyone knows of a compounding pharmacy in QLD please let me know.
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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 |
good luck with it! hope you do notice some improvement on it.
i think it helps my body heal itself faster,
like if i pull a tendon or ligament, or develop a tendonitis,
it seems to recover sooner.
so not a miracle for me, doesn't seem to prevent things,
though every time i tweek my SI, like today,
its less intense than in the past,
maybe that's the LDN?
but i can say, i've been on LDN since september,
and haven't noticed any detrimental side effects.
started at 1.5 mg, then 3.0 mg, then within a month 4.5 mg,
which is where i've stayed though have thought about upping it to 6.0 mg.
can i ask your dosage?
again, glad you have a forward thinking doc,
willing to try something new.
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: Feb 2010
Posts: 1,127
Steel_AS_Kicker
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OP
Steel_AS_Kicker
Joined: Feb 2010
Posts: 1,127 |
I am going to be on 4.5mg. That is what I read on most sites so I asked for that. The doc had no idea so I just asked for what was most commen LOL
I think my doc trusts me a lot.
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Joined: Apr 2009
Posts: 1,595
Gold_AS_Kicker
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Gold_AS_Kicker
Joined: Apr 2009
Posts: 1,595 |
Hi Trish, Did a bit of googling for you! Didn't unearth anything up Bribie way (yet) but have a look at the website of the first one on Wickham Terrace - they would be near quite a few rheumies on the Terrace, so are probably pretty big and experienced... OK - I just re-googled and added "near Caboolture" and "near Redcliffe" and they both come up with the Dallas Pde, Keperra one - like *that's* near you!!!  (although their website says they deliver Aust-wide...) You could try phoning them and asking if they knew of anybody out your way. There is one lower down in Mitchelton, but will go back and search for something closer to you. I know that some of the LDN folks go in to the pharmacy initially, then the pharmacist will agree to post... Oh yeah - it says on the Wickham House site - phone our pharmacists: 1300 MORTAR so you could start there. Wickham House Compounding Pharmacy157 Wickham Terrace Brisbane 4000 PO Box 10233 Adelaide Street Brisbane Qld 4000 Tel: 1300 667 827 (1300 MORTAR) Fax: 1300 737 853 (1300 PESTLE) info@whcp.com.au www.whcp.com.au Normal Trading Hours Monday-Friday 7.30am-5.30pm Ladhope Compounding Pharmacy131 Wickham Terrace, Spring Hill QLD 4000(07) 3831 3242‎ Ashgrove Chemmart Day & Night Compounding Pharmacy219 Waterworks Rd, Ashgrove QLD 4060(07) 3366 1740 Keperra Chemmart Day & Night
ChemistGreat Western Super Centre Corner of Settlement and Samford Roads Keperra QLD 4054 Phone: (07) 33517600 Opening Hours Monday to Friday 8:30am - 9:00pm Saturday 8:30am - 5:30pm Sunday 9:00am - 6:00pm Samford Chemmart Pharmacy3/37 Main Street Samford QLD 4520 Phone: (07) 32891559 Opening Hours Monday to Friday 8:30am - 6:00pm Saturday 8:30am - 12:00 noon Arana Plaza Day & Night ChemistCorner Patricks Road and Dawson Parade Arana Hills QLD 4054 Phone: (07) 33516100 Opening Hours Everyday 8:30am - 9:00pm Garozzo Mitchelton Pharmacy41 Blackwood Road Mitchelton QLD 4053 Phone: (07) 33552828 Opening Hours Monday to Friday 8:30am - 5:30pm Saturday 8:30am - 12:30pm Dallas Parade Compounding Pharmacy'Tailor Making Medicines To Suit You' Dallas Parade Compounding Pharmacy deliver medications Australia wide. Dallas Parade offer medications for Women's, Men's, Children and general health plus a range of vetinary medications. Call the team at Dallas Parade Compounding Pharmacy today to discuss your individual compounding needs.15 Dallas Parade Keperra QLD 4054 Phone: (07) 3354 3992 Fax: (07) 3355 6373 Opening Hours Monday to Friday 8:30am - 6pm Saturday 8:30am - 12 noon
Last edited by inkyfingers; 03/23/10 09:31 AM. Reason: refined search - added more info
Louise Happy to be a physio by day, not happy to be a Spondy 24/7! 
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Joined: Feb 2010
Posts: 1,127
Steel_AS_Kicker
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OP
Steel_AS_Kicker
Joined: Feb 2010
Posts: 1,127 |
Wow thanks for that Louise.
Was going to google search myself after dinner, just thought I would ask in case anyone knew already. But thanks for taking the time to look it up for me. I realy appreciate it.
Will make some phone calls tomorrow and see how I go.
One more question if I may.
How much should I expect to pay?
I have no idea and I understand costs will vary but dont want to be completely ripped off.
Thanks again.
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Joined: Jan 2004
Posts: 9,848 Likes: 6
Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
Joined: Jan 2004
Posts: 9,848 Likes: 6 |
Terrific news Trish - and an enlightened doctor! I had to go privately in the UK to get my LDN...NHS not permitted to script! Daft. A drug that is so cheap, that works, yet they baulk, but don't baulk at the biggie drugs (rue the day I ever let em RX me for that Sulfasalazine: EEEeeek. Now got tinnitus, and prob got it for life.) Hope you can find a dispesnsing pharmacy near to you - mebbe yr doctor could help? Just a thought. But with all that info Louise has sent you, you've prob got it cracked. Go well -  Molly C (France)
MollyC1i - Riding OutAS
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Joined: Feb 2010
Posts: 1,127
Steel_AS_Kicker
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OP
Steel_AS_Kicker
Joined: Feb 2010
Posts: 1,127 |
Hi Molly,
Yeah I realy didnt want the sulfasalazine and so glad I choose not to get it.
Have emailed one of the pharmacies Louise posted. Hope to hear back from them tomorrow or I will give them a call.
Will let you all know how I get on.
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Joined: Jan 2004
Posts: 9,848 Likes: 6
Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
Joined: Jan 2004
Posts: 9,848 Likes: 6 |
Oops - wasn't aware you had been 'looking' at the SSZ. Well, it 'does' suit some people, but not for everyone! Might have been right up your street... X'ed fingers for the dispensing.
MollyC1i - Riding OutAS
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Joined: Feb 2010
Posts: 1,127
Steel_AS_Kicker
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OP
Steel_AS_Kicker
Joined: Feb 2010
Posts: 1,127 |
I was so scared of the possible side effects of the SSZ that I went to my doctor before I filled the script the rheumy gave me for it. My doctor agreed for me it may not be a wise idea so I didnt get it. So I was back to having nothing and just try and deal with all the pain.
I had been reading a lot about the LDN and the big thing that attracted me to it was the lack of serious side effects.
Anyway here's hoping. Wish me luck.
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Joined: Jan 2004
Posts: 9,848 Likes: 6
Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
Joined: Jan 2004
Posts: 9,848 Likes: 6 |
LUCK - LUCK -LUCK..........
MollyC1i - Riding OutAS
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