Guest guest Posted July 26, 2003 Report Share Posted July 26, 2003 Hello, I don't have time to read every thread on the board---------there are just too many for me to get through so I thought I would respond to this one since it has to do with the Peg Intron injections. I have a few questions I would appreciate anyone being able to help me with. I noticed that the responses to the original post made references to an end date for the interferon therapy, Am I the only one here who has been told I may be on this for life? I've been on it for 14 months so far. The first few injections were bad as far as immediate reactions but I'm now suffering the long term side effects, esp fatigue, really severve fatigue at times. Of course over half my hair is gone, skin problems, mad headaches, adn they wonder where the depression comes from? Are you all automatically on Ribivarin too? I don't qualify for that drug as of yet. I've noticed that quite a few people on other sites presume if you are on Peg you're on Ribivarin, which makes the side effects refered to and the advice not very helpful to me. One last request -- I know I must sound like a really demanding bitch but I'm having serious focus problems so please excuse me ---if anyoen responds to this could you please add a -K to the response so I don't have to wade through a bunch of posts that don't have anything to do with me? Thanks, Kay > Greetings All > > I started my peg intron Fri. night ,,,what a rollercoaster that was ! > > I feel fine now (for the most part) I wonder am I going to > > Shake, rattle & roll every Fri. night for the next 51 Fridays ??? > > and so it goes > > Ya might as well call me Hoot every one else does<G> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2003 Report Share Posted July 28, 2003 Thanks Sharon My 2nd wasn't that bad at all just a low grade fever and felt beat all weekend if this is as bad as it gets (side-effect wise) I feel I can deal with it. This is an active list! I don't think I'll be able to keep up with all the e-traffic. We'll see. Be Well Re: [ ] and so it goes Welcome Hoot. I definitely found treatment a roller coaster ride. Different sides would come and go. The first shot was the worst though. Sharon-----------------------------------------snip---------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2009 Report Share Posted July 25, 2009 Hi Jo, We are sending prayers up for Bayly. We don't realize how many times that we use our hands or our joints at all until we are not able too. There are so many things that we take for granted, like simply holding a cup! Gentle Hugs from Iowa! Diane, Maggie and Ally Maggie age 12 (OI,CP, JRA, Bacet's Disease, Uveitis, Primary Immunodeficiency,Type 1 Diabetes) Allyson age 15 (Lupus) From: Grant & Jo <joking70@...> Subject: and so it goes Undisclosed-Recipient:;@invalid.domain Date: Saturday, July 25, 2009, 11:45 PM Need some positive thoughts for young Bayly please. He just can't catch a break with his arthritis. Or rather, I should say he can't get over this latest break! Since March this year he has had the use of two hands, for just two weeks. Out of plaster last Tuesday and his left hand all puffed up again by yesterday. He's asking for painkillers, which is a BIG thing for Bayly- he hates them usually and has quite a high pain tolerance. Jo Bayly, 7, extended oligo " I am not afraid of storms, for I am learning to sail my ship. " http://www.everyday hero.com. au/baylys_ wish Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2009 Report Share Posted July 25, 2009 Hi Jo, Sending some gentle virtual hugs for your brave little guy. I hope the healing speeds up. I hate to hear that he's in pain again Love & Aloha, Georgina and so it goes Need some positive thoughts for young Bayly please. He just can't catch a break with his arthritis. Or rather, I should say he can't get over this latest break! Since March this year he has had the use of two hands, for just two weeks. Out of plaster last Tuesday and his left hand all puffed up again by yesterday. He's asking for painkillers, which is a BIG thing for Bayly- he hates them usually and has quite a high pain tolerance. Jo Bayly, 7, extended oligo " I am not afraid of storms, for I am learning to sail my ship. " http://www.everydayhero.com.au/baylys_wish Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2009 Report Share Posted July 26, 2009 Sorry to hear of his troubles. He'll be in our prayers. Amy and Lucy, 7, poly On Sat, Jul 25, 2009 at 6:58 PM, Georgina <gmckin11@...> wrote: > > > Hi Jo, > > Sending some gentle virtual hugs for your brave little guy. > > I hope the healing speeds up. I hate to hear that he's in pain again > > Love & Aloha, > Georgina > and so it goes > > Need some positive thoughts for young Bayly please. > > He just can't catch a break with his arthritis. Or rather, I should say he > can't get over this latest break! > > Since March this year he has had the use of two hands, for just two weeks. > > Out of plaster last Tuesday and his left hand all puffed up again by > yesterday. He's asking for painkillers, which is a BIG thing for Bayly- he > hates them usually and has quite a high pain tolerance. > > Jo > Bayly, 7, extended oligo > > " I am not afraid of storms, for I am learning to sail my ship. " > http://www.everydayhero.com.au/baylys_wish > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2009 Report Share Posted July 26, 2009 Diane, Georgina, Amy, thank you for replying so quickly with your thoughts. I admit I am currently struggling with the ongoing challenges of Bay's arthritis (and related illnesses, fractures, etc). It just keeps going pear-shaped, and he's " supposed " to have the " best " and " easiest " form of JIA, if you believe all the articles and advice. Ha!! Nothing about this lttle man's JA journey has followed the text books. But still the Doctors are holding off putting him on Biologics, basically due to cost, but I have to ask (and this is what breaks my heart) how much pain for how long and how much disability does my son have to face before he 'qualifies' for these apparently awesome drugs? My darling niece also has Type 1 diabetes and I know my big sis is having trouble with that too right now (considering an Insulin Pump to better manage it), so it's not the funnest time for the kids in our family at the moment. Seriously, what price can you put on a child's childhood? Jo Bayly, 7, extended oligo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2009 Report Share Posted July 27, 2009 Thoughts and prayers going out to you all! and , 6, poly (04/09) > > Need some positive thoughts for young Bayly please. > > He just can't catch a break with his arthritis. Or rather, I should say he can't get over this latest break! > > Since March this year he has had the use of two hands, for just two weeks. > > Out of plaster last Tuesday and his left hand all puffed up again by yesterday. He's asking for painkillers, which is a BIG thing for Bayly- he hates them usually and has quite a high pain tolerance. > > Jo > Bayly, 7, extended oligo > > " I am not afraid of storms, for I am learning to sail my ship. " > http://www.everydayhero.com.au/baylys_wish > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2009 Report Share Posted July 29, 2009 So sorry to hear Bayley is having pain issues. You are right, at what point does the cost not matter? Are they hesitant because of the fact the insurance may not pay for it? I am not sure how your health care system works there in Oz, exactly. Does the government have to pay for the biologics so they are reluctant to move to the next obvious step? If so, is there no appeal process you could go to? Sorry for the questions, just that health care is such a big issue right now in the States, I am curious how others work. I hope he gets some relief very soon. I hate to hear of the kids in such pain. On a lighter note, I enjoyed the little Australia discussion we had. My niece has been in Sydney for an internship all summer (winter) and has posted many pics and info on her blog. She is rather enjoying herself - she is working with a men's rugby team, as an events planner. She is a rugby player herself and is quite enjoying the young men! LOL Hope Bayley is doing better soon, Michele ( 22, spondy) ________________________________ From: [mailto: ] On Behalf Of Jo & Grant Sent: Sunday, July 26, 2009 5:39 PM Subject: Re: and so it goes Diane, Georgina, Amy, thank you for replying so quickly with your thoughts. I admit I am currently struggling with the ongoing challenges of Bay's arthritis (and related illnesses, fractures, etc). It just keeps going pear-shaped, and he's " supposed " to have the " best " and " easiest " form of JIA, if you believe all the articles and advice. Ha!! Nothing about this lttle man's JA journey has followed the text books. But still the Doctors are holding off putting him on Biologics, basically due to cost, but I have to ask (and this is what breaks my heart) how much pain for how long and how much disability does my son have to face before he 'qualifies' for these apparently awesome drugs? My darling niece also has Type 1 diabetes and I know my big sis is having trouble with that too right now (considering an Insulin Pump to better manage it), so it's not the funnest time for the kids in our family at the moment. Seriously, what price can you put on a child's childhood? Jo Bayly, 7, extended oligo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2009 Report Share Posted July 30, 2009 G'day Michele, Most Biologics (Enbrel, etc) is one of the drugs on the PBS, or Pharmaceutical Benefits Scheme. So instead of the thousands of dollars it can cost, you only pay around $5 per script, if you have a Health Care Card. But you have to 'qualify', and that is apparently a dozen small joints, or 4 major joints, all in flare up. Now, Bayly has over a dozen joints all up, including major joints, but the doctor says he wants to " keep it up our sleeve " (actual words) in case Bayly gets worse. I mean, he's in and out of a wheelchair (hip), has to be carried up a lot of stairs or after a big day (hip, knees, ankle), has trouble eating sometimes (jaw), or dressing/feeding/toileting (wrists/elbows). All of it is incredibly heartbreaking to see, but what can we do- we can't get him the drugs unless the doctors approve it. So we make do with NSAIDs (which give him explosive diarrhoea), Prednisolone (which makes him ravenous and susceptible to fractures), and the Methotrexate (its own bundle of fun), plus paracetamol and codeine for pain relief. Tocilizumab is still in 'trial' phase, so is not readily available as yet, but those who are on it, are getting it free! It's so exciting to see how it helps the kids. As far as the health system goes. There is Medicare which is the government funded (taxpayer backed) national health system which provides bulk-billing (i.e. no gap) for some, and a sliding scale of refunds for other treatments/specialists. For example, we get around half back what we pay when we visit Bayly's Paed Rheumy in Sydney. But once you reach the 'Safety Net' in a calendar year- i.e. a certain figure for singles/families, of out-of-pocket expenses, you then get most if not all back. Medicare will get you treatment in a public hospital, but there are long waiting lists and beds are short. We also have the option to take out private health insurance, which is mighty high on an annual basis out of the family budget, but it is vital to have in case of tests, treatments, hospitalisations. Private Health Cover will get you into hospital quicker, but sometimes it still relies on if/when beds are available! The Aussie health system is in the process of undergoing huge reforms too. It's rare to have insurance as part of an employment agreement, which I understand is fairly common practice there in the States? On top of all this, if your medical expenses are over $1500 in a financial year (ours is 1 July-30 June) you can claim the extra as an offset on your tax return. Last year (which I'm still to file) we had $3000 out-of-pocket, mostly for Bayly, so we can use that to offset Grant's annual taxable income, which basically means more money back to us (or at the very least, no tax bill!) If you feel the urge to be more enlightened, check out http://medicare.gov.au/ <http://medicare.gov.au/> [] Jo Bayly, 7, extended oligo PS: I bet your niece is enjoying herself! Better tell her to watch those rugby players though, there's been a lot of brouhaha over bad behaviour of footy players here in Australia lately. > > So sorry to hear Bayley is having pain issues. You are right, at what point does the cost not matter? Are they hesitant because of the fact the insurance may not pay for it? I am not sure how your health care system works there in Oz, exactly. Does the government have to pay for the biologics so they are reluctant to move to the next obvious step? If so, is there no appeal process you could go to? Sorry for the questions, just that health care is such a big issue right now in the States, I am curious how others work. > I hope he gets some relief very soon. I hate to hear of the kids in such pain. > On a lighter note, I enjoyed the little Australia discussion we had. My niece has been in Sydney for an internship all summer (winter) and has posted many pics and info on her blog. She is rather enjoying herself - she is working with a men's rugby team, as an events planner. She is a rugby player herself and is quite enjoying the young men! LOL > Hope Bayley is doing better soon, Michele ( 22, spondy) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2009 Report Share Posted August 7, 2009 ....so I took Bayly to the Orthopedic surgeon for the fortnightly follow-up after the cast came off. Guess what, his left hand is still swollen! And that doctor couldn't explain it, either (we saw the physio and OT last week about it). It doesn't seem to be presenting like a 'normal' arthritis flare-up, but the Doc got in touch with our Paed Rheumy who wants to see Bayly ASAP. Luckily those new clinics are here next week, because I doubt my car would've made the trip to Sydney again. [] He's still having trouble doing nearly anything with his hand- so hard to watch him try- and now his hip is hurting (after a full day of sports at school yesterday). I just feel like screaming! But, hey, if Bayly isn't, I don't suppose I have any real excuse now do I?! Still can't believe he's had the use of two hands for just two weeks since March- it's now August for crying out loud!! Thanks for the prayers and positive thoughts everyone, Bay could probably use a few more of them. Hugs and best wishes to those who need it too. Jo Bayly, 7, extended oligo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2009 Report Share Posted August 7, 2009 Our kids are amazing aren't they. With my own flare lasting more than a week I have so much respect for all our little ones and all they endure so young. Arthritis sucks...period. Let us know what the dr thinks about Bay's hand. Beth & Hannah, 12, OA, HMJS, vitamin d deficiency, asthma, allergies, migraines Beth " We can't direct the wind, but we can adjust our sails " -author unknown ________________________________ From: Jo & Grant <joking70@...> Sent: Friday, August 7, 2009 5:18:53 AM Subject: Re: and so it goes ....so I took Bayly to the Orthopedic surgeon for the fortnightly follow-up after the cast came off. Guess what, his left hand is still swollen! And that doctor couldn't explain it, either (we saw the physio and OT last week about it). It doesn't seem to be presenting like a 'normal' arthritis flare-up, but the Doc got in touch with our Paed Rheumy who wants to see Bayly ASAP. Luckily those new clinics are here next week, because I doubt my car would've made the trip to Sydney again. [] He's still having trouble doing nearly anything with his hand- so hard to watch him try- and now his hip is hurting (after a full day of sports at school yesterday). I just feel like screaming! But, hey, if Bayly isn't, I don't suppose I have any real excuse now do I?! Still can't believe he's had the use of two hands for just two weeks since March- it's now August for crying out loud!! Thanks for the prayers and positive thoughts everyone, Bay could probably use a few more of them. Hugs and best wishes to those who need it too. Jo Bayly, 7, extended oligo Quote Link to comment Share on other sites More sharing options...
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