lesley
Drama Llama
My best friend Turriff, desperately missed.
Posts: 7,172
Location: Scotland, Scotland, Scotland
Jul 6, 2014 21:50:44 GMT
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Post by lesley on Oct 14, 2016 13:56:26 GMT
Another RA sufferer here, and at the moment, I am really suffering. I've been on Enbrel for about six years, and it has made a huge difference, but the flare up I'm having just now is awful. I actually got stuck in my car two days ago, because of the pain in my hip. I just couldn't move! Thankfully we were parked in the town, so I was able to send DD down to the pharmacy to get me ibuprofen, and wait a further twenty minutes for it to kick in before I was able to move my leg and drive. My next car is definitely going to be an automatic! This flare-up started because I had to take a week's course of antibiotics, as my mole removal and biopsy wound became infected. I hate taking antibiotics because it means coming off my RA meds, and it upsets my equilibrium so much - but as my GP pointed out, not as much as septicaemia would. I also suffer from a condition called hidradenitis suppurativa, which causes terrible abscesses, mostly under my arm, on my breast and in my groin. It's very painful, and limiting. And I'm in a bit of a hard place because my dermatologist wants to put me on a three-month course of antibiotics - see above.
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Post by wallyagain on Oct 14, 2016 14:08:58 GMT
I'm sorry for all of you dealing with pain. Knock on wood, I don't have a lot of pain. I'm lucky, I am still able to work, 30 hours a week. I have an incredibly supportive DH. He's my angel on earth.
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Post by gypsymama on Oct 14, 2016 14:29:14 GMT
Fibro and psoriasis along with psoriatic arthritis here... Finally doing subverting about it.. Saw a dermatologist and rheumatologist a few months back... Prescribed humira but my insurance wanted me to try methotrexate first so I'm 3 months into that and things are better but not great.
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pridemom
Pearl Clutcher
Posts: 2,843
Jul 12, 2014 21:58:10 GMT
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Post by pridemom on Oct 14, 2016 16:59:33 GMT
Scrappintoee, I am taking Xeljanz.
I am sad to hear of so many dealing with Fibro, RA, and other chronic pain. My mantra is " I will do as much as I can for as long as I can." I saw my rheumatologist yesterday and I told her that I know how fortunate I am to be able to do the things I can. I wish that those who don't live with limitations appreciated their mobility, lack of pain, and energy.
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Post by sillyrabbit on Oct 14, 2016 17:25:21 GMT
I have RA and Ankylosing Spondylitis. They're not supposed to happen together, but I got lucky. I had xrays last week and the AS has progressed so my Rheumatologist is starting me back on Humira. I too developed liver issues and stomach ulcers from NSAIDs so they are no longer an option. I have had terrible joint pain lately so here's hoping the Humira helps better than it did my first go around.
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pridemom
Pearl Clutcher
Posts: 2,843
Jul 12, 2014 21:58:10 GMT
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Post by pridemom on Oct 15, 2016 1:26:11 GMT
I have RA and Ankylosing Spondylitis. They're not supposed to happen together, but I got lucky. I had xrays last week and the AS has progressed so my Rheumatologist is starting me back on Humira. I too developed liver issues and stomach ulcers from NSAIDs so they are no longer an option. I have had terrible joint pain lately so here's hoping the Humira helps better than it did my first go around. My daughter has Spondyloarthritis. It affects her joints and tendons, so she has enthesitis. www.rheumatology.org/I-Am-A/Patient-Caregiver/Diseases-Conditions/Spondyloarthritis
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Post by ahiller on Oct 15, 2016 3:10:40 GMT
I have RA and Ankylosing Spondylitis. They're not supposed to happen together, but I got lucky. I had xrays last week and the AS has progressed so my Rheumatologist is starting me back on Humira. I too developed liver issues and stomach ulcers from NSAIDs so they are no longer an option. I have had terrible joint pain lately so here's hoping the Humira helps better than it did my first go around. I have Ankylosing as well, you're one of the few people I have found "irl" who have it/know what it is.
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Post by scrapmaven on Oct 15, 2016 4:07:17 GMT
I have a host of issues, but the biggest is a non-working gut. I have a feeding tube and a gastric pacemaker. I'm a 3 time sepsis survivor. My pain issue is RSD. I also have a wicked sense of humor and great support.
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Post by MsChiff on Oct 15, 2016 4:09:55 GMT
Fibro and psoriasis along with psoriatic arthritis here... Finally doing subverting about it.. Saw a dermatologist and rheumatologist a few months back... Prescribed humira but my insurance wanted me to try methotrexate first so I'm 3 months into that and things are better but not great. I'm on both Humira and methotrexate. I started Humira first for my Crohn's and then developed RA and was put on methotrexate. (My Rheumy was quite perplexed that I developed RA when I was already on Humira which is supposed to treat RA.) I'd advise not going on Humira unless absolutely necessary. Humira is a pain in that it needs to be refrigerated. This means that if you want/need to travel over a time when you are due for injection, you must pack the pen in a cooler on ice, make sure it stays cold and ensure that wherever you're staying has a way to keep it cold. (I have to inject Humira every other week.) It also means you have to be available to receive the package when it's delivered so that you can put it in the refrigerator. That was a huge issue for me until my insurance changed to CVS Caremark and now I can have to delivered to my nearby CVS where they store it in their refrigerator until I pick it up. Finally, you have to deal with proper disposal of those pen cartridges and they are not small like a methotrexate syringe. One more note -- My doctor told me that once you are on Humira and stop, you can't ever take it again. Consequently it's very important that you take each injection on the scheduled date. If you are currently on methotrexate pills and not feeling great, you may want to try methotrexate injections. The pills didn't work for me but the injections have managed my RA symptoms fabulously (although I do have occasional periods of flare). Methotrexate does not need to be refrigerated. If you do methotrexate injections, know that the syringes come in packages of 10 or 12. The first time I went to buy them, the pharmacy tried to sell me a package of about 100! After questioning them further, I learned that there were packages of 10 or 12 so that's what I get now. I also tried Otrexup instead of methotrexate because my doctor said it was the same as methotrexate just in pre-dosed injection pens. I can assure you it was NOT the same as the methotrexate because it didn't help my symptoms. When I told my doctor, she said that she had heard the same from some other patients. I stopped that and went back on the methotrexate, which continues to work well. If you do get put on Humira, know that the co-pay for Humira is fairly high. I have insurance and my co-pay was quoted as $90 for a 3-month supply. Lucky for me, after the first shipment I got a customer service rep who asked if I was interested in the "co-pay assistance program." The co-pay assistance program is a program where the co-pay is greatly reduced for those that qualify. As near as I can tell, the only qualification was that you have to have insurance to qualify for assistance. There is no cost to participate in the co-pay assistance program. I qualified and my co-pay was reduced from $90 for 3 months to $5 for three months! Another thing I was unaware of at the time I started on Humira -- my doctor said that because I am on Humira I have to have a special blood test. Of course, there is only one lab in the US that processes these blood tests and the lab is not on my insurance so it cost me hundreds of dollars out of pocket for the blood test. You can be sure that my doctor heard about it and that he and I will be having a serious chat before I have that blood test again! SaveSave
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Post by kkrenn on Oct 15, 2016 4:33:33 GMT
I have RSD/CRPS in both of my arms and I'm currently waiting for insurance approval for a pain pump implant. There is no cure for my condition.
I hope everyone is having a "low symptom day"!
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Post by mellyw on Oct 15, 2016 4:55:54 GMT
Don't like reading about all of us with these painful conditions, but it's nice to chat with people who get it.
I have Rheumatoid Arthritis, Sjogrens Syndrome, Raynauds Disease, & Ulcerative Colitis in the auto-immune column. Fatigue is my constant companion, unfortunately. I have 3 small anomalies with my heart, something that I most likely would never know about, but inflammation has set in. & just doesn't want to leave, making me feel like I'm having heart issues (went thru the gambit of tests to rule other things out). It all ties in with the now chronic Costo-Chondritis, for whatever reason, inflammation in that whole area is bad for me.
My causing me, bring you to your knees pain, right now is a nasty case of Trigeminial Neuralgia. Mine is caused by dental issues, & I've had plenty of those. Had over 30 root canals trying to save my teeth, finally decided enough was enough, & I'm in the process of getting permanent dentures put in. But that requires dental surgeries, so I've been in a bad flare-up of TN since May. One of the dental implants failed, & had to come out Tue. It's fairly straight forward to have one removed (they are mini-implants), but for the past 2 days, the electrical shock's bouncing around by brain have been intense. Tonight I'm finally feeling them back off, thank goodness.
Here's hoping everyone has a fairly pain-free weekend!
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Deleted
Posts: 0
May 5, 2024 16:28:22 GMT
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Post by Deleted on Oct 15, 2016 7:05:47 GMT
scrappintoee: Thank you so much for thinking of me. Prayers and gentle hugs to all whom have posted on this thread. I swear, I'll catch up this weekend! AS far as my story, I haven't been online too often because I've run into one medical issue after another!!! My headpain issue is at a standstill. I just don't have the strength to FIND another OculoPlastic Surgeon. I got a referral for one from my PCP (for some reason) and before I laid out the $40 copay, I figured I'd email them, explain my backstory and see if we'd be a good fit. Turned out they don't even "work on orbital issues". Ha!!!! Now I'm back to ground zero........ Pain factor with all of that has been the same, so I can't complain. I forgot my meds one morning and had a 10 hour shift, helping out with an infant. By 2 pm I was in excruciating pain. DH had no way of getting to me, 40 minutes away. It sucked. By the time I met him at the car at 5 pm, I was crying, took my pills (that he remembered to bring!), laid back in my seat and had a vomit bucket. Lovely. I SHOULD NOT be working in any capacity, but if I didn't put some hours in, we honestly wouldn't have food on our table. Ugh. On top of that............... I had severe stomach cramps last week. It's normal for me to only have a bowel movement 2x/week, but I went more than 7 days without going!!!! I wound up in the E.R. from the pain. They checked my diverticulosis and it was okay, but I was backed up more than 1/2 way up my intestine. NOT.GOOD. They gave me their protocol to begin the next day. I did it (after work, because now I had a $75 E.R. fee to pay!!!) as soon as I got home. I took Ducolax every hour for 5 hours. NOTHING. Nothing for 4 hours, but the pain increased. Honestly, it felt worse than childbirth (and my first baby was 30 hours w/o ANY pain meds!!!!!!!!!!!!!). So.............. back we went to the E.R.!!! I was crying, screaming, worried. My poor, poor DH looked so helpless. I worried about him! He's a heart patient and the LAST thing I wanted was to be his worry!! We sat in the E.R. which was packed! There were a few gunshot cases, a few rapes... Fun night. They said they'd give me something for the pain (they never did), but they DID call me in the back to get an emergency x-ray done to see if there was blockage. I waited an additional 3 hours and by then I started having even more extreme pain (felt like I was being shot in the stomach!). I doubled over and then had to run to the bathroom, and the diarrhea began. This went on for at least 90 minutes and I decided (at about 3 am!) just go to home at this point. My PCP called me in the next morning, yelling at me for not calling her first (it was the weekend and I would have gotten another doctor, which would have been USELESS!!! They'd send me to the E.R. anyway!)......... She told me to take 1-2 Colace daily + 1 dose Miralax every morning and see what happens. I did it for 1 day and I couldn't stop going!!!!!!! I had to wear a diaper because it was just uncontrollable at that point. Lovely........... So, now I have an "emergency" appt with a gastro next week for a colonscopy. This new gastro mailed me the routine list of prep. With my previous record, I'm scared to take this stuff and then be "stuck" again, at home, in the middle of the night!!!!!!!! Best part is that they asked me not to take any pain meds for 24 hours before the colonscopy. ARE YOU KIDDING ME??? I asked, "Well, will I be taken exactly at 2 pm?? Because, if not, I'll be vomiting in your office from my head pain." I'll probably take my meds later than the 24 hours since they're always so far behind with their schedule.......... Hoping this isn't a mistake. I'm taking the Ducolax laxative pills (4 at once!!!!) and the 20 oz drink later than they said to take it b/c I don't trust them! Hope that's all not a mistake too. LONGGGGGGGGG story short, I know that my opiods are most likely causing this stomach pain and severe constipation, but I've been used to it! My appetite is so limited, but again, that's kinda a + for me (sick, I know!!!). I guess I'll find out more after next Thursday!!! If this is all side effects from my opiods, I don't know what my choices are. It's obvious that I can't function for more than 6 hours without the meds, and that's not an addiction issue; it's a pain issue. I'm at a loss. I'll have to read through and see if anyone has similar experiences. I have to get to bed--I've been up for 24 hours now. I will check in tomorrow, hopefully! Again, prayers to everyone who posted above me. I'm NEVER, EVER "down" about this whole pain thing, but this really brought me to my knees!!! For the first time, I felt like I couldn't do it!! The head pain is enough. It's too much! But to add another major pain like the stomach thing? Nope, I felt like quitting. I'm planning on doing my docs so that my DH has it all in order. There's no way in the world that I'd want to live in severe pain if I get even worse. Nope................
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Post by scrappintoee on Oct 15, 2016 8:39:19 GMT
I just wanna offer MORE and MORE ((( hugs )))) and prayers to ALL OF YOU !!! I wish I could comment on SO many posts; but we all know that is impossible! @bergdorfblonde-- glad you checked in, and....wow.....just ....WOW! What horrible ordeals you've been going through recently!!! You mentioned being awake for 24 hours .....ugh.....I hope you're having some PEACEFUL, GOOD sleep right now!!!
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Post by lesserknownpea on Oct 15, 2016 9:40:41 GMT
It does help to read the situations of others. It inspires me that you lovely ladies are carrying on, and keeping as positive as you can. It's also interesting to learn which meds or treatments help manage.
As many of you know, XDH broke my vertebrae almost 4 years ago. the healing was slow, as there was a lot of nerve issues. And because the bone was crushed, it will never of course be the same. I am so annoyed that I have to be careful each day, and avoid many activities. But it could have been so much worse, I seriously thought I'd be a paraplegic when I was first injured.
And I've had Fibro for 20 years.
Walking really helps both issues. It also helps with depression and anxiety, which I fight with. I take gabapentin, which has been a real blessing. Dr gives me Vicodin for the really tough days, but I only use it once or twice a week. Flexeril is great if the back issue just gets too stiff and needs a reset.
I have changed my eating and lost 22 lbs. that has helped the back pain also.
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Post by gypsymama on Oct 15, 2016 14:42:26 GMT
Fibro and psoriasis along with psoriatic arthritis here... Finally doing subverting about it.. Saw a dermatologist and rheumatologist a few months back... Prescribed humira but my insurance wanted me to try methotrexate first so I'm 3 months into that and things are better but not great. I'm on both Humira and methotrexate. I started Humira first for my Crohn's and then developed RA and was put on methotrexate. (My Rheumy was quite perplexed that I developed RA when I was already on Humira which is supposed to treat RA.) I'd advise not going on Humira unless absolutely necessary. Humira is a pain in that it needs to be refrigerated. This means that if you want/need to travel over a time when you are due for injection, you must pack the pen in a cooler on ice, make sure it stays cold and ensure that wherever you're staying has a way to keep it cold. (I have to inject Humira every other week.) It also means you have to be available to receive the package when it's delivered so that you can put it in the refrigerator. That was a huge issue for me until my insurance changed to CVS Caremark and now I can have to delivered to my nearby CVS where they store it in their refrigerator until I pick it up. Finally, you have to deal with proper disposal of those pen cartridges and they are not small like a methotrexate syringe. One more note -- My doctor told me that once you are on Humira and stop, you can't ever take it again. Consequently it's very important that you take each injection on the scheduled date. If you are currently on methotrexate pills and not feeling great, you may want to try methotrexate injections. The pills didn't work for me but the injections have managed my RA symptoms fabulously (although I do have occasional periods of flare). Methotrexate does not need to be refrigerated. If you do methotrexate injections, know that the syringes come in packages of 10 or 12. The first time I went to buy them, the pharmacy tried to sell me a package of about 100! After questioning them further, I learned that there were packages of 10 or 12 so that's what I get now. I also tried Otrexup instead of methotrexate because my doctor said it was the same as methotrexate just in pre-dosed injection pens. I can assure you it was NOT the same as the methotrexate because it didn't help my symptoms. When I told my doctor, she said that she had heard the same from some other patients. I stopped that and went back on the methotrexate, which continues to work well. If you do get put on Humira, know that the co-pay for Humira is fairly high. I have insurance and my co-pay was quoted as $90 for a 3-month supply. Lucky for me, after the first shipment I got a customer service rep who asked if I was interested in the "co-pay assistance program." The co-pay assistance program is a program where the co-pay is greatly reduced for those that qualify. As near as I can tell, the only qualification was that you have to have insurance to qualify for assistance. There is no cost to participate in the co-pay assistance program. I qualified and my co-pay was reduced from $90 for 3 months to $5 for three months! Another thing I was unaware of at the time I started on Humira -- my doctor said that because I am on Humira I have to have a special blood test. Of course, there is only one lab in the US that processes these blood tests and the lab is not on my insurance so it cost me hundreds of dollars out of pocket for the blood test. You can be sure that my doctor heard about it and that he and I will be having a serious chat before I have that blood test again! SaveSavethis is all really good info, thank you so much!
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Deleted
Posts: 0
May 5, 2024 16:28:22 GMT
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Post by Deleted on Oct 15, 2016 16:48:45 GMT
scrappintoee: Thanks! Pretty decent sleep. My kitties woke me up a few times, but I slept until about 12pm! I'm sure I'll still be tired.
Off to catch up on this thread now! Prayers to you all!
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Post by Lexica on Oct 15, 2016 18:06:59 GMT
I have RA and Ankylosing Spondylitis. They're not supposed to happen together, but I got lucky. I had xrays last week and the AS has progressed so my Rheumatologist is starting me back on Humira. I too developed liver issues and stomach ulcers from NSAIDs so they are no longer an option. I have had terrible joint pain lately so here's hoping the Humira helps better than it did my first go around. My ex fiancé has Ankylosing Spondylitis so I know a little bit about the condition. I'm sorry that you are having to deal with this issue along with your RA. Do you do regular exercises to try to maintain the flexibility in your spine? I could not get my ex to do this. He was a cyclist and really, remaining in that hunched over position for hour upon hour and then not doing any exercises to strengthen it in the reverse has taken a toll on his posture. He was the most comfortable bent over like that, and when he saw his spinal X-rays for the first time, it became quite apparent why. He was fusing in that hunched position. He didn't admit that he needed to start stretching exercises to try to keep what mobility he had until he tried to lay backwards on a large ball that I have for stretching out my spine. He absolutely could not bend backwards on the ball. I am no longer with him, so I don't know how he progressed. I have read that it is much more common in men than women. Do you have a parent that has this? I know it is hereditary and my ex passed it to his boys. When I last knew him, his oldest son was showing symptoms. SaveSave
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Post by Lexica on Oct 15, 2016 18:11:35 GMT
I have RSD/CRPS in both of my arms and I'm currently waiting for insurance approval for a pain pump implant. There is no cure for my condition. I hope everyone is having a "low symptom day"! My cousin has this and I have seen how very difficult it has been for her. Hers began in one hand after falling while skiing, but has progressed to her entire body now. You have my heartfelt and compassionate sympathy and very gentle hugs. SaveSave
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Post by M~ on Oct 15, 2016 18:12:13 GMT
I have RA. been in remission going on 3 years at this point. I will pray for everyone here.
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Post by Lexica on Oct 15, 2016 18:23:48 GMT
The co-pay assistance program is a program where the co-pay is greatly reduced for those that qualify. As near as I can tell, the only qualification was that you have to have insurance to qualify for assistance. There is no cost to participate in the co-pay assistance program. I qualified and my co-pay was reduced from $90 for 3 months to $5 for three months This is excellent to know! I am going to pass this information along to a few friends. I went in to refill my morphine prescription a few weeks ago and just about fell over when the guy told me it was $2,500 (I forget the exact number, but it was around this) I had just gone through a mixup with my insurance and the card he scanned did not reflect the addition of the new policy yet. Fortunately it was reduced to $45, but that is still a hefty sum when I have multiple prescriptions each month to fill. I am going to look into whether or not there is an assistance program for morphine. That $45 is the reduction with an insurance policy that is $765.02 per month! I would have preferred a much cheaper insurance policy, but the others did not offer any coverage for prescriptions at all, so my monthly outlay would probably be well over $3,500 per month just on medications alone, and I require regular appointments with my doctor and blood work to add to that monthly cost. It is well worth the more expensive insurance policy. When I was a child, my mom, a nurse, used to tell us to always be thankful for our health. I tried to be, but didn't really get it until I became sick. What I didn't realize was in addition to the things you have to deal with depending on your particular malady, the financial burden of having a health problem is something that people don't seem to talk about. It is atrocious! It is good to know that there are programs out there for assistance on these necessary drugs. SaveSave
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Post by phoenixcov on Oct 15, 2016 18:24:15 GMT
Congenital Scoliosis childhood Polio and now PPS Post Polio Syndrome. Recently found that my curved spine has damaged part of a lung so now have breathing problems and new pains from the PPS. High nighttime BP and can`t sleep longer than 2 hours at a time. Can`t take strong painkillers only an occasional muscle relaxant for the spine cramps. I have just entered a S.A.D. stage and felt a bit sorry for myself until I read your stories. Pity party over for now.
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theshyone
Pearl Clutcher
Posts: 3,405
Jun 26, 2014 12:50:12 GMT
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Post by theshyone on Oct 15, 2016 20:09:58 GMT
I'm at the end of my rope dealing with multiple chronic medical conditions and how they interact with each other. Both for myself, my daughter and my son. It's pushed me to the point of just ..... No hope. It's been a very bad week for pain, with the early freezing rain and snowfall.
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basketdiva
Pearl Clutcher
Posts: 3,615
Jun 26, 2014 11:45:09 GMT
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Post by basketdiva on Oct 15, 2016 23:22:12 GMT
I've been on Humira for 2 years and it's turned my life around.
Humira can be left out if the refrigerator for up to 24 days ( per the mfg) in a dark place. I have a travel case for mine that comes with an mini ice pack. Since I've not been away from home or a refrigerator for more than a week it's not a problem. All my mail comes to a UPS store and they place it into their refrigerator until I get there.
Someone mentioned a special blood test. Curious what it is fir. I have blood tests every 3 months and s TB test once a year. . This is sent elsewhere but the cost is very low.
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Post by sillyrabbit on Oct 16, 2016 2:45:55 GMT
I have RA and Ankylosing Spondylitis. They're not supposed to happen together, but I got lucky. I had xrays last week and the AS has progressed so my Rheumatologist is starting me back on Humira. I too developed liver issues and stomach ulcers from NSAIDs so they are no longer an option. I have had terrible joint pain lately so here's hoping the Humira helps better than it did my first go around. My ex fiancé has Ankylosing Spondylitis so I know a little bit about the condition. I'm sorry that you are having to deal with this issue along with your RA. Do you do regular exercises to try to maintain the flexibility in your spine? I could not get my ex to do this. He was a cyclist and really, remaining in that hunched over position for hour upon hour and then not doing any exercises to strengthen it in the reverse has taken a toll on his posture. He was the most comfortable bent over like that, and when he saw his spinal X-rays for the first time, it became quite apparent why. He was fusing in that hunched position. He didn't admit that he needed to start stretching exercises to try to keep what mobility he had until he tried to lay backwards on a large ball that I have for stretching out my spine. He absolutely could not bend backwards on the ball. I am no longer with him, so I don't know how he progressed. I have read that it is much more common in men than women. Do you have a parent that has this? I know it is hereditary and my ex passed it to his boys. When I last knew him, his oldest son was showing symptoms. SaveSaveI don't have a parent with AS so it is really odd. I have had hip pain since I was 15, and it took until I was 40 to be diagnosed. My sacroiliac joints are nearly fused and there are several places on my lumbar region that have ankylosis.My neck is beginning to show calcification as well. I am fairly diligent about my posture but sometimes when the pain kicks in I find myself slumping as that relieves the pressure. I try to stretch daily and I am thinking of trying yoga. I was a runner before diagnosis, but had to give it up due to the impact on my joints. My older DS has started having back trouble so I am making him an appt to get tested to see if he might have AS as well. I don't want him to have 25 years of progression before he gets treatment like I did.
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pridemom
Pearl Clutcher
Posts: 2,843
Jul 12, 2014 21:58:10 GMT
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Post by pridemom on Oct 16, 2016 3:44:40 GMT
I've been on Humira for 2 years and it's turned my life around. Humira can be left out if the refrigerator for up to 24 days ( per the mfg) in a dark place. I have a travel case for mine that comes with an mini ice pack. Since I've not been away from home or a refrigerator for more than a week it's not a problem. All my mail comes to a UPS store and they place it into their refrigerator until I get there. Someone mentioned a special blood test. Curious what it is fir. I have blood tests every 3 months and s TB test once a year. . This is sent elsewhere but the cost is very low. I get DD's Humira delivered to me at work. Peace of mind for handling and It can't be stolen. Her pediatric rheumatologist at the children's hospital runs kidney and liver blood tests quarterly. I follow multiple groups for RA and JA, as well as belong to a group of parents that work with the doctors, and there is no mention of a blood test that only one lab can run. I am sure I would have heard about that. My connections with the research group for JA would surely know if this was the case. For travel, I learned about this today and will order one. www.frioinsulincoolingcase.com
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Post by wonderwoman on Oct 16, 2016 5:06:34 GMT
I'm at the end of my rope dealing with multiple chronic medical conditions and how they interact with each other. Both for myself, my daughter and my son. It's pushed me to the point of just ..... No hope. It's been a very bad week for pain, with the early freezing rain and snowfall. Hugs~ Hope you are feeling better soon.. I know the dark days of pain.. Prayers some light will shine though for you soon~
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Post by scrappintoee on Oct 16, 2016 9:38:24 GMT
I've read every post here, and am thinking of, praying for, and sending gentle ((( hugs ))) to all of you!!! lesserknownpea .....wow, I just read your post about your XH breaking your vertebrae----I am SO very sorry !!! (( hugs )) phoenixcov .... (( hugs ))....I know what you mean about a pity parties......since we all know that we're "not supposed to" feel sorry for ourselves. I've fought it (and still do!) many, many times! And like probably ALL of you, I always try to tell myself how much worse OTHERS have it, and that I should ALWAYS be grateful and upbeat. But, last week, there was a day that everything was just SO PAINFUL, I couldn't hold the tears back anymore, and just cried and cried to my dear hubby. It was actually very cathartic and I have felt SO much better ever since ! I would've felt guilty for "feeling sorry for myself" by giving into the pain and crying before, but I think sometimes, we have to allow ourselves to. And, I have to add, phoenixcov ....on top of EVERYTHING else you're dealing with....if I couldn't sleep more than two hours at a time---wow---I would be a total wreck!!!!! I hope it gets better for you!!!
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Post by phoenixcov on Oct 16, 2016 11:42:07 GMT
Thank you Scrappintoee for your kind words. I must admit that the sleep problems are the biggest drain on what little energy I have now. Has anybody read "The Spoon Theory" by Christine Miserandino? I came across the website below when I was researching PPS and I just think the way that she describes living with pain and disability is amazing. My OH and Son were both stunned by the article and they see me in pain every day. I use the Spoon Theory in my everyday life to prioritise how I will use my energy. Try it ladies and it might help you. I hope so. www.butyoudontlooksick.comclick on The Spoon Theory tag top right.
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