So the doc applied for me to get on Humaria and told me to expect to get... — Behcet s Disease Syndrome

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  • Yes. Last year. And my dr said same thing. My son was denied. Then the dr appealed it. It took about one month. The colchicine never really worked. But it has now been one full ur. My son on humira every other week and he has no symptoms

  • Patient assistance program for humira won't work Bc in humira a right up Behcets is not listed as an approved illness for the drug. Coupons you will not get

  • I have been in the patient assistance program for both Colcrys and Humira for over a year. I paid $15 and $5 respectively.

    I also just applied a month ago with my 2015 tax return, and since I was on short term disability most of the year, my taxable limit put me in the bracket to get it for free. They just mailed a three month supply to my home. I'd encourage you to ask your doctor to submit the application.

Hello So happy to find all of you My daughter Bri 16yrs was diagnosed with... — Behcet s Disease You Are Not Alone

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  • Feel free to PM me and I'll give you my email so she can send something if/when she feels comfortable! I was diagnosed because of 'downstairs' ulcers and there were about 100 questions I had at the time that I was too embarrassed to ask my doctor.

  • I just showed Bri this comment and it made her day

  • Hello Bri! ❤️

What info should I take to my doctor to ask if he will put me on LDN — Sjogrens, Lupus, RA, Scleroderma Low Dose Naltrexone (LDN)

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Some thoughts to ponder it seems there is a real art to listening to your body... — Osteoarthritis sufferers and rumatic arthritis suffers

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  • Thanks for writing it. Wise, true and what I needed to hear today.

  • Thank you as well

  • You are right on with your writing. Thanks for sharing. When I finally realized that for me to heal I have to have surgery. We each come to our own realization .

My dr added Cymbalta 30mg qd to see if it helps with my depression and my... — Amyloidosis Support Forums Inc

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  • I take loperamide and codine for Daily Diarrhoea,Have leg and feet pain as I have Neourophy, I feel very Angy lately with my Desease, But cant and wont give in,Just want my life back which I no will never happen.

  • Ok now that we all have these symptoms what caused it the Amy or chemo?

  • FYI - was at a support meeting last weekend & the question was asked if the Amy or the chemo caused neuropathy. The MD's there said if there was numbness without pain it was caused by Amy. If there is pain & you had Velcade, the Velcade caused the neuropathy

In the 10 years since I have been diagnosed with Sjogren s the countless tests... — Sjogrens Sister s Support Forum Private

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  • So would you rather not say???

  • My eye doctor wanted me to have an amniotic membrane lens for each eye done if it works twice a year to get me through the really dry months. It's only put on for 1 week then removed.

  • Thanks for sharing. That's something I've never heard of. I hope it works out! Please keep us posted

Has anyone here seen Dr O keefe before I see him Friday and am curious as to... — CT Zebras Ehlers-Danlos CTD Support Forum

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  • true, it was odd, but he's been pretty uptight at every visit. lol. ;/

  • Sounds like it! My gosh... I think you've had a strange run of things. I bet it'll be no big deal bringing him to this appointment. I hope not, anyway! It's not like kids are *supposed* to be convenient lol. People just have to kind of accommodate them and their needs! Kind of an unwritten rule.

  • thank you!

Hi all So I know Lyme thrives on sugar With that being said I know diet is... — Bee Venom Therapy for Lyme Disease

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  • F

  • I am diabetic.......curse yes. We need glucose to do the bugs. It's a balancing act. Simple ..........stay away from junk food and added sugars, and stick to natural sugars in fruit and the sugars we convert from carbohydrates.

  • Don't over eat

PTL my insurance covered the Restasis at only 25 copay While I m thrilled I... — Sjögren s Christian Support

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  • YES. My eye doc said to be careful to not touch the tip and use it till gone. He said they had never had a case of infection or anything else doing it that way.

  • My doctor told me once opened place in the refrigerator with the cap on or in a sealed plastic baggie and use until vial is gone. Tooooo expensive to waste. Hope this helps!

  • Just put in fridge and use in the evening, too.

UPDATED — RSD Reflex Sympathetic Dystrophy-A place for Support -Stop the Burn

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  • Fascinating! I would love to talk about this with my neurosurgeon considering the actual physical mess that are the nerves in my right leg. Anything that doesn't involve drugs is absolutely worth a go!

  • I see my pain management Doctor tomorrow I'm going to ask about it

  • <

Please only ever use water to clean your bee house bee excrement is very easy... — Bee Venom Therapy for Lyme Disease

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  • Someone said they use plain sandpaper and it works well too.

  • no we dont need to sand bee poop just water . it comes off with water

  • All I know is the last time I cleaned mine, 1/2 the next batch of bees died the second day after I put them in. I had even dried my buddy for over an hour with a fan after cleaning it with just water and paper towels. Luckily though the next 2 batches have done fine being in there. Idk what actually happened.

One thing I have noticed about the methotrexate is I am cold I have always... — Behcet s Disease You Are Not Alone

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  • I didn't do well with Methotrexate at all, many reason's...I've been on Remicade now for 5 years, I no longer have pain at much at all, got my sight back, and have few symptoms...except still tired a lot, but truly a miracle drug for me.

  • ooo I want that ;)

I ve just had the best two days in a long time — Hypermobility UK Chat

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  • I'm glad you had a good few days, just make sure to rest and look after yourself if you're struggling after :) I had a good couple of days for a change too, on sunday I went to a 4 hour dance rehearsal which I got through without too much trouble and then yesterday I went shopping to get a new house for my guinea pigs

  • Precisely x

  • He he

I made a doctor appointment for my husband Frank in Nashville It s for late... — DART - Dupuytren s Advocates for Radiation Therapy

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  • Xxxxxxx Yzzzzzz, I'm sure someone has but he isn't listed in our Files doc as having treated a DART member. I would ask about prior DD treatments. As long as he is familiar with the established protocols and you are comfortable the diseased part of the hand and fingers can be identified (the area needing RT) all should be good. I was the first treated by my RO in Alabama six years ago and all is as good today as it was back then.

  • Great news. He may be a new one to add to our list if he does treat Dupuytren's. We want to keep updated and especially since we do not have him listed. How did you find him?

I wanted to ask anyone if they have high prostaglandin levels and if they are... — Ehlers Danlos Syndrome and the Cusack Protocol

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  • Does your son have eosinophil gastro disease too?

  • I wonder they haven't gone in to look. They scoped him when he was around 3 but they didn't know about eoe at that time. They were just looking for reflux which he had. One doctor wanted to start him on eoe medication just to see how he would do......but we declined..

  • Have them pull the slides from that scope and have pathology h and e stain for eosinophil count per hpf

Ok had a second opinion from orthopaedic dr today After doing a series of... — Behcet s Disease You Are Not Alone

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  • Yeah for some reason certain anti inflammatory meds make my legs swell. Tramadol didn't really touch my pain I'm using percocet until we can figure out something better. I'm really sensitive to meds like gabapentin at a low dose made my tongue go numb. Lyrica made me severely depressed and amitriptyline made me hallucinate that the dog was eating my hand off. Good times. Lol

  • Oh my goodness. ...

    I had to laugh. ..all I could do at your response x

    Hugs xx

  • We laugh about it now too lol

I ve been wanting to post this information. Last summer the pariteal. sp — Sjogrens Sister s Support Forum Private

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  • my right one swells and sometimes the pain is unbearable. I hope you feel better soon

  • Prayers with you and thanks for the heads up. I swell on my left side and have an inflamed fat cell in my left breast. They do tests every year and I knew to keep a close eye on both.

  • hugs and healing prayers

My funniest EDS moment lately I went to a lovely afternoon tea party yesterday... — Ehlers-Danlos Syndrome Vermont

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  • So sorry Sarah! You make me feel better about faceplanting in BOTH Boston and Providence. I was lucky that 1 I wasn't alone, my hubby was with me and 2 a few people were kind enough to stop and offer assistance.

    Some time ago a very special person I knew (he has passed) had ALS. He was out with his son to lunch. ALS being another invisible issue made him shaky. His son helped him steady himself but not before someone nearby insulted him by making a comment about it being early in the day to be in his condition. I don't remember the event exactly but you get the idea. His son was fit to be tied but the Dad told him not to waste his energy on ignorant people.

    Gentle hugs to you.

  • Sounds like my dear deceased husband.

  • Loraine Sweetser Clark probably because it is I didn't want to do names because I wasn't sure of the total accuracy but knew I could get my point across.

Its so hard to know what to do for work when you health is constantly up and... — Christian Lyme Disease Support

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  • I only have 6 weeks. Really need to see how I do after this next monthly cycle. And after the next IV. ???


    It is the worst insult for people who are completely disabled by pain and fatigue to have to wake up every painful morning and try to figure out easy to still earn a living. I wish we had understood some of these concepts about money and illness.

  • A friend of mine recommended using Flexjobs website to look for flexible, part time, and/or telecommuting jobs. Disclaimer: I have very little personal experience with this site. There is a membership fee but they do weed out the scams so all the opportunities are legit. Again, just putting it out there. But my friend has had success with it. She doesn't have Lyme but has young children so needs flexible work

Hello my sister in law has been diagnosed with vasculitis about a year ago — Vasculitis Wellness Forum

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  • I don't think it's the drugs that cause it but the vasculitis itself. I had emergency surgery in May last year, as ct scan was showing blood flow loss in the small bowel area. Luckily enough they found huge amounts of inflammation and did not remove anything but put me on a very high dose of Iv steroids and changed my medication to azaithioprine. X

  • Well prednisone really helped me against the block as Remicade does as well. What really caused my blockades was the many inflammation from Vasculitis the way I've lost part of my small intestine. I wasn't on any medication back then. I know also that opiates can be s cause for a blockage.

  • Thank you Diana . All this information I'm sure will help her. Also make her feel a bit better that she is not alone.


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  • Right back at you Buddy

  • Nancy, you must keep on keeping on!

  • Continuing prayers Nancy! One of my clients just had spinal surgery done at Abbott Northwest in MN. It is rated either #1 or 2 in the states, I was told. It is quite a ways from you but just throwing that out there in case you are able. Of course wait a while as it is snowing hard today,

Hi All. I just want to update on the crazy muscle weakness I ve been having — The Low No Starch Diet for Ankylosing Spondylitis

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  • Hmm. I didn't know that either. Glad you got some answers

  • I got the RX got the unit. Great idea buddy. I appreciate YOU!!

  • Sweet! I hope you find it helps!! I love wearing mine for 30 minutes when I crawl into bed at the end of the day! Totally relaxing in the best way.

I know this question has been asked before We are going on our first trip... — Mothering Juvenile Arthritis

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  • I wouldn't put an uncapped needle in a soda/water bottle. They aren't thick enough to prevent a stick.

  • We would bend the needle back so it's facing the opposite direction and recap until we got to a Sharps container to dispose of properly. This helped us from poking ourselves when recapping and also helped us to make sure the needle wouldn't be reused accidentally.

  • Thank you! I didn't think that using a pop bottle would work without recapping. Thanks for the info.

My daughter was officially diagnosed with JA Feb 11th It s March 14th I looked... — Mothering Juvenile Arthritis

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  • We met our our deductible 12 January. We met our out of pocket max for him 28 January.

  • 1 refill of enbrel and its met, 3 refills and out of picket max is met. Really depends on meds and disease activity.

  • The year Jaxon got really sick and was diagnosed was the same year my middle son had his tonsils out, we met the deductible and the max out of pocket so everything was free early on. I was pregnant with my daughter and due Dec. 28th. I told my doc I was having her that year, luckily she agreed and was going to induce me the 26th but Sofia had her own plan and came the 24th. When we first started that insurance I remember thinking, we will never meet that amount, hahaha!!!

ARe any of you using magnesium for tight sore muscles in neck and arms — Ehlers Danlos Syndrome and the Cusack Protocol

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  • Magnesium malate is what I take...I have absolutely no problems with it!

  • I purchased mine on Amazon. Some people make their own. You could Google recipes for magnesium oil spray if you wanted to go that route.

  • That's the one I'm buying next. Been using Citrate come in small divided doses but its not enough pain relief so im on top malate

For those of you who have tried Lifeway Kefir and didn t tolerate it just... — Ehlers Danlos Syndrome and the Cusack Protocol

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  • Xxxxxxx Yzzzzzz, here's a FODMAP site that talks about mollasses. Molasses can be made from sugar cane or beets or other ingredients. C&H brand is made from Cane Sugar for both brown sugar and white sugar. Walmart carries C&H sugars, but Target only carries beet sugar in our area except for at X-mas time, they get C&H in there stores because people like it better for their holiday baking. The only thing I would question in this ladies post is she mentions using sorghum molasses to make your own brown sugar if needed. Sorghum is questionable. It's lower in fodmaps than spelt but higher than quinoa. But everyone if different in what they tolerate better. So, it's just something to watch for to see how your GI system does with it. er/

  • Xxxxxxx Yzzzzzz you-I do not have a Fresh Thymes or a WF's unfortunately. I'll ask our Fresh Market to carry it!

  • Xxxxxxx Yzzzzzz Ross they might have it. I have not looked there.

— Sjogrens, Lupus, RA, Scleroderma Low Dose Naltrexone (LDN)

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  • What kind of riding do you do?

  • Thanks honey havent had my butt on a horse for 30yrs but swimming I can manage Blessings and yep painkillers are my best friend right now xx

  • I do dressage mostly and groundtraining in western style :-) atm training a horse who stood still for 2 years, because of an illness in his leg.

I honestly don t know how I would have gotten through this day without all of... — Vasculitis Foundation Discussion Forum

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  • So glad that you were seen by a really caring and professional doctor who knew what he was doing. Hopefully the pain will subside now and you will start to feel better.

    I have experienced the vacuuming - I used to say that I was going to have my ears 'detailed' (here in Australia you take your car to a detailer to have the care detailed, as in professionally cleaned). I had Aspergillus Niger, which is a fungal disease. It was incredibly painful and the ENT had to suction out all the fungus and he gave me special drops to get rid of it. Most unpleasant.

  • Really pleased it's getting sorted, try sucking on a strong flavoured sweet or mints to help take taste away.xx

  • Mints are best if you feel nauseous - helps takes that sick feeling away

Hi again I posted yesterday and as a follow up post I wanted to reach out... — Henoch Schonlein Purpura support forum

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  • My 8yr old was diagnosed on 29 Feb, after the initial swelling had gone down he went off his food and felt nauseous. After 3 days he was considerably dehydrated, and severe abdominal pain. Then our doc sent us to the hospital. An ultrasound revealed swelling in the bowel in several places.

    All they did was pump him full of IV fluids, and deny any food or drink. After 2 days the swelling had reduced enough to send us home. Now we are battling the feet/ankles swelling (his poor feet are so discoloured from many stages of bruises). Poor kid can't walk and has a wheelchair for the afternoons.

  • Just wondering Shar L Smith how things are going?

  • They are sending us home today as they feel we can manage the symptoms at home. She will start taking the oral prednisone tonight, at home. She will take it for three more days and then we are done. The steroids seems to be helping. It hasn't been a night to day change but somewhere in the middle. Which is better than where we were when admitted. I am nervous as to how her body will react when the steroids are done. I'm praying we don't go back downhill!! We have a GI follow up in one week. Thank you all for your help, thoughts and prayers!

Hi Sherry — Giant Cell Arteritis Temporal Arteritis GCA

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  • I am usually not in this position financially but these past 2 months my daughter and I have both had medical issues come up that required the use of more cab rides instead of bus rides. But I just might check into these and see what is out there for a back up.

  • No worries Jamesw Rupp I saw the 1st one in an earlier post.

  • Jamesw Rupp just wanted to give you an update on my ear issue and the GCA-Vasculitis involvement with it. I had a call in to my rheumy but unfortunately he is away this week at a research conference and the rheumy subbing for him knows squat about vasculitis. I already had a call in to my GP and he called me Monday afternoon. When I told him what had been happening he wasn't sure if my ear problem was due to my GCA or not but he told me he would do some research at his office and call me back. This is what I love about my GP, if he doesn't know the amswer he doesn't just leave me hanging, he will find the answer. He has done this ever since I have been his patient. Anyways, he called me back and said to me that if my vasculitis is the cause of my ear issue then I should be having another flare like I did a few weeks back when my rheumy had to up my "preddy" to 100mg for 3 days to keep me from being admitted to the hospital. I was having pain and it was no where near my left ear, it was closer to the blood vessels above my eyebrow and going a bit back along the side of my head. He told me he wanted me to take 2 of my pain meds he prescribed for me and if after 1 hour they didn't take away the pain, I was to take 20mg extra of prednisone. So I did what he said and the pain meds did not touch the pain I was having at all. So I took the extra prednisone like he said and within 45 minutes the pain had lessoned A LOT!! That was Monday, so on Tuesday morning at 7am when it was time to take my daily "preddy" dose I took 65mg instead of 45 and it really helped a lot. Even the ear pain was better with the higher dose of preddy. So yes I do believe that my ear issues was due to having GCA and not something else. My high blood pressure at the ER could have been from just being on prednisone, or the fact that I was really worried and stressed about what was happening to me..I was really scared when I saw all that blood come out of my left ear. Same as the infection part of it, could be from being on prednisone. My GP also told me that with GCA there are a lot of blood vessels surrounding the ear and when they become inflammed it puts a lot of pressure on the ears. To much pressure can cause a lot of different issues...and just because there is no research done on this area yet does not make it any less true or real to the people experiencing it. I have talked to a lot of people who have GCA and have ear issues with it. The papers may be hard to find online but the facts speak for themselves. I have also talked to people who have other types of 'V" and they also have ear issues and some have permanent hearing loss from it. Thank you again Jamesw Rupp for your concern and wanting to help me as you do. Don't worry about the email/FB issue...I'm sure it will resolve itself soon.

My surgery went great I want to thank everyone for their thoughts and prayers... — Osteoarthritis sufferers and rumatic arthritis suffers

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  • I am so happy for you Beverly! Sending continued prayers for your recovery and healing...hoping for a new beginning for you with much less pain if not completely pain free. :)

  • Glad u ok

  • So glad all went well; wishing you a speedy and gentle recovery