Trying hard to have positive thoughts today I truly believe if you surround... — Butterflies - Lupus Survival Forum

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  • Just what you need a boss who dosent have your back. I hope the web conference goes well

  • Don't quit. Outlast them. :) Good luck today!!

  • Web conference went well. I shut the uncooperative employee down multiple times during the meeting when he attempted to steer the topic at hand to his own agenda. Called my boss immediately after the meeting--surprise, answer. I've left him a message to return my call but I won't hold my breath waiting. Would be much easier if we worked in the same building so I could walk right into his office where he couldn't avoid me.

Photos from Sarah Lorenzen Rice's post — Mothering Juvenile Arthritis

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  • Tay is the same way. We did not take the shot.

  • My daughters swelling and pain was always worse when sick. Think it throws their whole immune system upside down.

  • I'm so sorry to hear so many little warriors aren't feeling well. We haven't had a good day in a long time here either.She's been off the humira for a while and I'm thinking that needs to be reconsidered. Major knee and shoulder pain;(

— Gout and Arthritis ( all chronic conditions)- helping ourselves to health

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  • Just like to say thanks to the people who recommended me the cherry tablets. It has done wonders to my sore foot. I'm now back on my feet. Trying to control my diet from now on.

  • yay :)

  • Apple Cider Vinegar helps, cherries, blueberries, even aluminum free baking soda mixed with an alkolid water

I wonder if there are other adults with jIA on here I m 32 and have had jRA... — Juvenile Idiopathic Arthritis

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  • I am 29, dx at 3 years, symptoms from 12 months. I used to be part of the support groups for adults here, and understand your frustration. I used to become angry at hearing people in their 50's and 60's complain about how it was frustrating they had the illness when they had been healthy during their younger years. As much as there are days when having this disease really irritates me I am doing a lot to try and help others through a website I am building. I look at myself as lucky because I have met so many awesome people and am being given the opportunity to teach others about JIA. I would hate to have been diagnosed at a later stage in life as I have become an expert in knowing my limitations and how to medicate so that I can still (for the most part) do what I want to do. Feel free to PM if you ever need someone to talk to. Hugs to you :)

  • Xxxxxxx Yzzzzzz, thanks. If you need help with the website, pm me... I do freelance website design professionally as I'm able. is me.

  • T Hamboyan Harrison your website looks great :) well done. The website I am constructing is underway with a company here in australia, but I will keep you in mind for future developments :)

Happy Thursday i hope everyone is having a gentle day It s kinda cold here... — Reflex Sympathetic Dystrophy- Need a friend who has R.S.D

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  • no problem

  • This 50+ year old just loves being schooled by a teen! I most certainly will if I think of anything else.

  • Xxxxxxx Yzzzzzz please let us know how the TMS and ketamine treatments work. Michele has been working with many different pain management and primary care doctors to try to get this pain from the RSD under control. She has had it since she was in a car accident at age 19, she is now 48 and it continues to spread on her. Your in our prayers and we hope the best for you. Also please keep us up to date on the new treatments out there we don't hear enough about them. Thanks.

Hi — parents of children with hypermobility syndrome

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  • Yea we was told there a difference between hypermobilty and hms, I think we out a diagnosis so early as her other condition nearly always have hms as a co morbid condition xxx

  • Although we have HEDs in the family, we still get told it is unlikely a diagnosis will be made on a young child.

  • Same here Sara Walsh .my partner and son have a diagnosis of hypermobility syndrome. Gp says I have it (not officially dx'd yet).

I am new to the group and wanted to share my experience with my new friends — Costochondritis is a pain in the chest... literally

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  • Welcome...Bless you too.

  • This group is so helpful with ideas to try. We are all different and what works for one does nothing for someone else.

  • I am new too, I went to the drs today and got given stronger co-codamol and she said to use heat packs and cold too. Alternating! She also wished me the best of british! Way to fill me with confidence:/

I have high blood platelets and yesterday my hematologist said he thinks I may... — Osteoarthritis sufferers and rumatic arthritis suffers

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  • I will see my gp and push him for MRI thanku Clive and sue for ur comments and advice ☺ sue I like the name you given those random pains "arthritis bites" the name fits in well with pain ill be sure to use it

  • I have OA in my back, hands, feet and hips along with fibromyalgia and have same symptoms and platelet counts were also high, but doctors didn't seem to think anything about it.

  • I have pains like you shooting pains from my feet to neck, some days my fingers hurt more some days its my feet or knees .its just diffrent all the time somedays I hurt everywhere its awful

Hi everyone My costochondritis used to be much worse than it is I went to a... — Costochondritis is a pain in the chest... literally

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  • DO means Dr. Of Osteopath. He used a combination of different things (injections, supplements, adjustments, antioxidant drips, acupuncture, etc.) My costo was caused by a virus that was lodged in my chest. He also employs other people with different medical specialties who help him out and treat patients too (see above treatments that I had.)

  • how long did the treatments take? (weeks, months) and how much did it cost?

  • You know a do is a perfect specialty to treat costo. Why did ins not cover it, DO s are pretty mainstream now

So a couple weeks ago I hurt my back while bending over and had to get an MRI... — Antiphospholipid Antibody Syndrome, supporting each other on our journeys

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  • I have a similar problem, cant get a spinal block bc of APS, and cant get prednisone bc of diabetes. I have had controlled sugar for 8 yrs now, but they don't mess with it.

  • Xxxxxxx Yzzzzzz... why no spinal block bc of APS? Because a clot could form in the spinal cord? Just curious...

  • they want you off your Coumadin and Plavix to do it, my cardiologist wont allow it, my gp wont allow the steroid, so they offered me only pain killer, that wont help, only mask the pain. I will go without and use the cane to help take weight off my back

Just need to vent because I am exhausted I lost my job and thus my insurance... — Antiphospholipid Antibody Syndrome, supporting each other on our journeys

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  • I'm in Texas. The cheapest insurance I could find was $225 per month with the income credit. At this point I can't even put food on the table some days. I did find that there is a sliding scale clinic nearby so I'm going to contact them tomorrow to see what options they might be able to offer

  • Xxxxxxx Yzzzzzz I wish I could take asprin :( I'm anaphylatic to it. The good news is my lupus anticoag levels were down to normal about a month before losing my job and my sed rate was only 95.

  • Also the pharmaceutical companies that manufacture these drugs may give you a discount

Sorry in advance for this long post but I feel the deep need to share this with... — Butterflies - Lupus Survival Forum

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  • Very well said. I agree 100%

  • Xxxxxxx Yzzzzzz I went through the same thing with my 17yr old. Growing up he had learning disabilities, suffers from alopecia universal. He tried commiting suicide at age 8. I found him hanging in his room. I know this is a lot of information Im sharing but I want to give you hope and your son as well. Please if you need to talk I'm here for you. Also my son is an inspiration and mentor and would love to have contact with your son to give him hope.

  • I applaud you both for being so forthcoming with the truth that could really help a lot of people who are going through the same issue. God bless you and I wish you and your son many blessings.

home from new critical care dr. s he seems nice and knowledgeable the only dr — Vasculitis Social Forum

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  • I love a thorough doctor! I hope that he is able to draw some conclusions from the tests that will help you to feel better!

  • He sounds like a good doctor.

  • Mark been through every test known to man now back to respiratory doctor ,a different one over the course of 14 years this is the 3 rd one ,all the tests again lungs are good for a lady of my age ,now he has come up with sleep apnea test overnight hospital stay. Family all say I don't snore I do have very bad lungs in winter I am getting fed up with all these tests .

home from new critical care dr. s he seems nice and knowledgeable the only dr — Vasculitis Wellness Forum

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  • Sounds like he's looking after you Mark. Will be praying for answers that can make a turn-around happen!!

  • I've had the sleeping O2 test which confirmed I had severe sleep apnea I now use a machine at night and feel loads better x

  • Ditto what Amanda said...also I plug oxygen into the CPAP machine so when I'm sleeping my O2 doesn't drop Mark...I'm glad you're getting out even if it is walks with strange ment...

Saw the Rheumy today My 12 yo s fingers have been swollen and her enbrel is... — Mothering Juvenile Arthritis

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  • My daughter was on plaquenil for a couple of months, then switched to Enbrel. Med was fine, no major side effects. Can affect eyes over time, so just have eye doc check at visits.

  • Md mentioned the eyes.. Thanks Jennifer fey Jennifer Fey Gill

  • My dd was on it for two years alone. It worked awesome for her it took 3 months to work though. We had to stop due to remission n also side effect of headachs sadly a year after stopping it arthritis came back harder. Good luck for your lil one.

Hi just wondering if any of you have had a spleenectomy due to itp — Idiopathic Thrombocytopenic Purpura ( ITP)

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  • its an injection you get once a week to get your platelets around a 100000 it worked great for me for 3 yrs but seems to stop now. i was put on it after the spleen removal. took around 3 injections and boom they were above 100000 and even went as high as 350000. it takes a while to get the doses rigth. my started out at the lowest then it was adjusted. just dont miss the next dose because it bottoms out quick. good luck..

  • Nplate is also known as Romiplostim. It helps bone marrow to produce more platelets to keep ahead of their destruction. I've been on it for about 4 years. I've had regular Dr, visits for the injection at first once a week, then once every 3 weeks, now once every 2 weeks since the counts have been more stable and the dosage determined to be the proper one for me..

  • I was on prednisone for 3 years, many IVIG treatments. Infusions. Winrow, Rituxin,....finally I had 2 ablasions & a splenectomy! Since my adrenal glands were so suppressed it took some time for it to work. I stopped taking prednisone since it no longer worked....I freed myself from all medications my body could heal. I've been doing great ever since (2 years ago)!

I see and read a lot of post about kids getting mouth ulcers or cold sores — Mothering Juvenile Arthritis

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  • We did acyclovir for my daughters cold sores and it worked wonders but now these sores are different.

  • My son has been tested for lupus, Ibd, celiac, herpes simplex and more. All negative

  • My son has had them for quite some time. Off and on. It is one of the symptoms of his SJIA.

Who all has taken methotrexate or cymbalta. My PA wants me to research them — Oklahoma s Lupus Support Forum

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  • It makes me sleepy so I take mine at night. But dr said it doesn't make most people sleepy. I'm just super sensitive to sedation stuff. Benadryl leaves me hungover for 2 days. Lol! But basically... None!! Loving it!!

  • I take 90mg of cymbalta at night and i have no side effects from it.

  • I'm on methotrexate now and have been for only nine weeks. So far my joint pain is way down. Haven't lost hair. Fingers crossed! The only down side was week six. I had taken the first full dose. It took me three days to get out of bed. Felt the kind of tired you have during terrible flu and your body feels too heavy. With the exception of that one time I've actually been improving. Im optimistic for the first time since diagnosis this last spring. Much luck and success with it!

I ve never posted before but need some input I was diagnosed with LCV summer... — Vasculitis Foundation Discussion Forum

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  • Presley and traci- how was your Cns vasc diagnosed?

  • I had a brain biopsy but the surgeon got the wrong piece and wasn't able to diagnose me with cnsv. But because of all of my symptoms (skin lesions, strokes cause by inflammation, headaches, etc) they came to the conclusion that it has be cnsv.

  • So since my post I have had an mri of my head and neck and emg. Head looks fine. Neck has lots of deterioration and some spinal stenosis. Emg showed no peripheral neuropathy. Continue to have sensations in my muscles throughout my legs and weakness at times. My left side of my face get pins and needles, numbness and some eyelid drooping. Neurologist is reviewing all my records. May send for muscle biopsy to check for small fiber neuropathy. May do xray of the rest of my spine and possible neuro surgeon. Any ideas if this could still be vasculitis related?

Probably changing to Remicade soon What can you tell me about it I know it... — Mothering Juvenile Arthritis

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  • Yes you will need a few weeks to purge the humira. Your child will be given Tylenol and benadryl before the infusion starts and his/her bloodwork will be screened. They start the infusion slowly dripping only 5mls per hour but increase it every 15 minutes when they check blood pressure until.the rate iscat max...not too sure what the max is but probably near 60ml per hour. My son started with a modest dose but now is at his max at 400ml, he weighs 90lbs. Oh...also the first dose and second dose are done in two week intervals then you will move to 4 or 6 week.

  • We changed to Remicade in March and it has been so much better! Once you have few doses, and tolerate it well, they typically run the meds faster. We started with about 4 and a half to 5 hours and now we are down to roughly 2 and a half to 3 hours. We bring lots of stuff to do, but don't expect to get anything done. :0) My angel typically falls asleep for part of the time.

Is it just me or does anyone else feel totally useless to their families — Costochondritis is a pain in the chest... literally

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  • Your NOT ALONE !

  • You still have so much to give! Just showing up is half of life! Your presence is a present :) Just because you can't do chores for someone doesn't mean you can't share love and encouragement. Kids don't remember how mom washed their underwear, they remember how mom loved and paid attention to them <3

  • Yep feel useless always super fit and family still think I can do everything I used to do

I have a question Has anyone that has had velcade in an IV push experienced... — Amyloidosis Support Forums Inc

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  • are you on cy-bor-d? for some reason a lot of doctors will automatically go to the iv version of cytoxin but there is an oral option. I used the oral drug (with oral dex and subcutaneous injection of velcade) for a year. I am in remission now.

  • Thanks for all of the input.

  • I believe the standard procedure now is subcutaneous injection as it was accidently done that way by a nurse in the UK and the results were actually found to be significantly improved. Check with your Dr...he/she may not be aware of this finding.

To all those of you who are struggling financially the Salvation Army and DHS... — Sarcoidosis Online Sites FORUM

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  • You know it is OK to take help and to need help. You can always donate a hamper when things are better for you and pay it forward. It's a hand up if you need it not a handout. I hope any of you in need gets help. :) <3

  • That is right, Naida Perez "a hand up". I always donate my newspapers, and plastic/paper bags, and all household items and clothing to the Salvation Army. Plus my husband donated over 30 years of his time there. We stuff envelopes for them every year as well for their donation campaign. They can always use volunteers and have things you can do without a lot of physical strain. :) Paying it forward is always good.

  • On Vancouver Island, (Victoria BC) British Columbia, you are welcome to contact me, regarding a food program, that my daughter and I co-facilitate

Day 2 of the prednisone taper I am not feeling it like I do with the Medrol... — Butterflies - Lupus Survival Forum

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  • I usually start at 60 and taper over 3 months.

  • I am on a round myself. 10 mg. tablets. 5 for 2 days. 4 for 2 days. 3 for 2 days. 2 for 2 days. 1 for 2 days. Just finished a round of the same about a month ago. Doesn't seem to help much for very long

  • It's not doing anything for me at all this time. I feel like I'm wasting the Prednisone taking it this way.

I have had this costo on and off for 3 plus years now I have learned the hard... — Costochondritis is a pain in the chest... literally

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  • Awesome I'm often thought it helps me understand others suffering better, develops patience and increases faith in God not man.

  • Sorry this seems to have posted several times, it was only supposed to post once but my computer had an issue, sorry if you saw it multiple times, I deleted the rest

  • This is beautiful! Thank you