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  •   mmorewood @jrrg I suffer from 2 of the above so I felt I had to post something. More fun stuff soon x 2w
  •   duncanbalcon I've personally found with customers that drinking 100% natural aloe Vera leaf gel can also help all of the above - except it won't kill you...interesting x 2w
  •   stephanemartin Megs, I was a experimental patient for rituximab which belongs to the same family of antibody therapy. Considering it was effectively chemotherapy and the drug is used to treat things such as non-hodgkins lymphoma, leukaemia, post-transplant care - you can imagine it's pretty strong stuff. Similar side effects were presented to me but you have to accept the risks for the hope of longer term good health! It's not exactly over the counter medication... I had to go through weeks of tests and screening before treatment. I have loads of information on it if you need any x 2w
  •   mmorewood Interesting @stephanemartin however nutritional & emotional therapy has also been proven to help prevent and heal cancer patients and ailments I mentioned before. Also interesting that the large pharmaceutical companies make too much money from sick patients therefore nutritional therapy is illegal in most countries. X 2w
  •   katejrichards This drug saved my best friends life. She wouldn't be here without it x 2w
  •   mmorewood That's amazing your friend survived @katejrichards I just don't feel these drugs should be used in cases where there is an alternative that's never even considered. 2w
  •   mmorewood There are too many of these drugs @duncanbalcon and even doctors are warned before buying them to prescribe. We need to be more aware of alternative and emotional therapy. Few people are made aware of the benefit of healing cells through emotional and nutritional therapy....but we all SHOULD be. 2w
  •   katejrichards Absolutely however at such an enormous cost to the health service this drug and it's side effects are last case options for many I'm sure. I know Hannah wouldn't be on this if she had a choice. This drug was the only option x 2w

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Amaro The Spondylitis Association
spondylitis Calling all AS Warriors!!! This is truly important. In case of an emergency could First Responders cause you harm in working to save your life? They could if they don't know you have AS. Please visit our page at www.spondylitis.org and read this article. Make sure you have something on your person that says "Ankylosing Spondylitis: Brittle Spine Disease". #spinalcord #spondylitis #infusion #ankylosing #inflammation #invisibledisease #arthritis #standtall #emergency #911 #autoimmune #spoonies 2w
  •   familyfirst28 That reminds me of when I went to a chiropractor (before I found out I had AS ) he kept pushing down on my mid back. I would be as relaxed as can be and breath appropriately but to no avail. I still had more back pain and he would be frustrated. It was bad 2w
  •   spondylitis @familyfirst28 it's so sad. That's a common experience for many AS warrior dealing with various types of physicians. 2w

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noladawn_ #Fibromyalgia #ankylosing #spondylitis #chronicillness Silent diseases make it harder for loved ones to understand. 3w

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  •   spondymom The never-ending medsI so feel your pain, on every level! Hope life is treating you well, keep kicking AS one day at a time! 4w

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Rise The Spondylitis Association
spondylitis What a powerful image...“I didn't know my son took this photo until this morning when downloading from my camera. This was 2 weeks ago when I was barely able to get out of bed due to AS. Makes me want to cry thinking about what might have been going through his thoughts that made him decide to take the picture.” ~ Melissa Levanduski #ankylosing #spondylitis #arthritis #inflammation #invisibledisease #chronicillness #rheumatoid #autoimmune #spinalcord #infusion #standtall 1mon

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Lo-fi The Spondylitis Association
ashleysloan7 Remicade Infusion Day! Had a good appointment with my rheumatologist - he's great! Getting my magical drug now As always, Ankylosing Spondylitis fact to raise awareness thanks to @spondylitis 1mon
  •   ashleysloan7 Oh my goodness @freshsnapped ! So sorry to hear! How frustrating. I am definitely not paying that a month. But I am surprised the nurses at your rheumatologists office haven't helped out more. There is a patient assistance program - Remistart - for Remicade which they pay up to around $7-8k a year of what your insurance doesn't cover. Basically, you don't pay more than $50 an infusion. BUT you also have to pay for the service to administer the IV. For me, a year ago, I was paying about $50 a month (if you spread out the service costs too. Enbrel & Humira also have patient programs - one of which I think you only pay $5 per shot. I would ask your nurse about these ASAP & if she isn't helpful, call the drug companies patient assistance programs number - all over their websites... 1mon
  •   ashleysloan7 @freshsnapped -The shots you have to do more frequently though. But, with my new plan this year (just started 1 in feb.), my deductible is $750. I met that with my 1st infusion in February so the rest of my infusions the year are ALL paid for. Remistart is covering a chunk of the February infusion too so what I pay for my infusions are actually less... Hopefully this makes sense. But call Remistart & talk to your nurse again. The people at Remistart can explain everything - they want to make it affordable for us bc no one can afford thousands per treatment every 8 weeks. If you have any other questions let me know: good luck! 1mon
  •   freshsnapped @ashleysloan7 my nurses have actually been really helpful. but my insurance is making every option unattainable. they won't cover humira or enbrel. I've tried their support plans but even after that it would still be over $2500 per month for those injections. I haven't tried the remistart though. I'll have to look into that. thanks for your reply! 1mon
  •   ashleysloan7 Ohhh good! At first, I wasn't sure & thought you had to get all the info yourself! @freshsnapped I feel like there are maybe a couple newer biologic but I don't know much about them - Simponi? Cimzia? Well, I sure hope they can get you on one of those. I had tried everything before Remicade & after avoiding it a few months, I decided to do a trial & it totally worked for me. If your insurance is still difficult, maybe another plan would be better. So sorry! Insurance is the worst. Good luck! 1mon
  •   freshsnapped thanks again for your info @ashleysloan7 we're actually looking into simponi right now. of course, everything takes mountains of paperwork. this time they want my tax return!! it's insane what some people have to do in order to get life changing drugs!! 1mon
  •   ashleyatillman I haven't had any major side effects either but it's always on my mind with a 2 year old in the house! And I want another baby but I'm worried about being pregnant on Remicade so we'll! 1mon
  •   ashleyatillman we'll see! Lol 1mon
  •   starfallz @ashleysloan7 about how long is the IV treatment. My daughter is Dx with AS and she's 10 yrs old. She's been taking Enbrel for 7 months now. So greatful for it. But she has now started with stomach issues which Enbrel is not helping with that. Her GI Dr was suggesting Remicade. Buts first he's gonna do a upper and lower GI procedure. 1mon

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2mon socaljules
Normal Julia Ferguson Andriessen
socaljules #100happydays air drying after a long shower after gardening my arthritic ass off. A great Sunday so far. 2mon

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mommacat6 So sleepy today. Early morning Dr appointments/procedures such! :(
#as # hospital #ctscan #x-ray #ankylosing # spondylitis # spondy
2mon

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Mayfair The Spondylitis Association
spondylitis Meet AS face, Alex Rockwell. She is 16 years old and in the 10th grade. She just recently discovered she had AS after a bad case of Uveitus thinking it was only pink eye. Although her life has dramatically changed since hearing the news her motto is "There will always be good and bad days, arthritis or not." Wow how courageous and positive! #aspatient #aswarrior #spoonies #arthritis #ankylosing #spondylitis #spinalcord #inflammation #invisibledisease #chronicillness #rheumatoid #standtall 2mon

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2mon socaljules
Normal Julia Ferguson Andriessen
socaljules #100happydays sadly I have had #ankylosing #spondylitis for over 15 years with fusion in my spine hips and sac joints. 4 years ago I found an acupuncturist whose treatment truly helps. #Cupping is one that is excruciating at the time but makes such a difference the next day. Dr Lee of Orange Acupuncture is wonderful 2mon

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