Guest guest Posted February 4, 2003 Report Share Posted February 4, 2003 Hi Pat, Boy, I wish my doctor would give me the choice of injecting myself with Enbrel or having his nurse do it. I'd be at the office door first thing in the morning. I hate the " pokes " . I've been doing it for a year now and it does not get any easier. But.............a lot of us can do it without a shudder..... ) I aim for my tummy where I have a bit of a fat roll so I can grab it. Brrrrrrrrrrrrr...... a shiver up my spine just thinking about it. xxoo Ca. Carmen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2003 Report Share Posted February 27, 2003 Lorie and anyone who needs it I will be happy to come for a party. I can bring my paints and we can paint each others walls with glorious scenery and it could be a place we could go whenever we feel bad. Big hugs and smiles to make you happy, Melt My name is Lorie and I > have been in a severe flare for about 12 days now and I am slipping > even farther into a dragons cave. I think a pity party might be in order for me today.. 8( > Lorie in Seattle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2003 Report Share Posted February 27, 2003 Lorie, So sorry you are feeling so bad today. Is there anyway you can see the Rheumy on an emergency visit today or tomorrow? If not hang in there the best you can. Sometimes sleeping is a blessing Hope you feel better real soon Ann K LI NY Hi everyone > Good morning friends, > I thought that I would hop online for a bit this morning. I am a > wee bit behind in reading all the posts, so welcome to anyone who is > new and welcome back to those who came back. My name is Lorie and I > have been in a severe flare for about 12 days now and I am slipping > even farther into a dragons cave. All I can do is sleep 18 hrs a > day. I do this because I have to take a ton of pain meds and > therefore I sleep. I see the rheumy next Tuesday and hopefully we > can begin some form of treatment then. I had been taking the > conservative approach because I was feeling better, but now I see > that it is still here and hanging on in the body. Somedays I just > wish that I would die and be done with it. It has to be better then > this. I think a pity party might be in order for me today.. 8( > > I just wanted to say thanks for listening to my whining this morning. > I hope that everyone else has a beautiful day and pain free. > > Lorie in Seattle > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2003 Report Share Posted February 27, 2003 Count me in, I could use a goos, make that good, party, I will bring my favorite treat-PINEAPPLE, Thats all I get to eat this weekend, lol. I have a few walls I will fold up and bring, they need paintin'. No dancing this time for me but I love to watch and dream, is there a hot tub close? Party party party...... LOL...Louise. Melt wrote: > Lorie and anyone who needs it I will be happy to come for a party. I can > bring my paints and we can paint each others walls with glorious > scenery and > it could be a place we could go whenever we feel bad. Big hugs and smiles > to make you happy, Melt > > My name is Lorie and I > > have been in a severe flare for about 12 days now and I am slipping > > even farther into a dragons cave. I think a pity party might be in > order > for me today.. 8( > > Lorie in Seattle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2003 Report Share Posted February 28, 2003 If there is a hot tub involved count me in too. I'll have to bring the cold cuts. I'm on Atkins and can't have most other treats. Ann K LI NY Re: Hi everyone > Count me in, I could use a goos, make that good, party, I will bring my > favorite treat-PINEAPPLE, Thats all I get to eat this weekend, lol. I > have a few walls I will fold up and bring, they need paintin'. No > dancing this time for me but I love to watch and dream, is there a hot > tub close? Party party party...... LOL...Louise. > > Melt wrote: > > > Lorie and anyone who needs it I will be happy to come for a party. I can > > bring my paints and we can paint each others walls with glorious > > scenery and > > it could be a place we could go whenever we feel bad. Big hugs and smiles > > to make you happy, Melt > > > > My name is Lorie and I > > > have been in a severe flare for about 12 days now and I am slipping > > > even farther into a dragons cave. I think a pity party might be in > > order > > for me today.. 8( > > > Lorie in Seattle > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2003 Report Share Posted March 26, 2003 it is good to hear you talked with your fiancé. Always keep those lines open helps a lot. Also, remember when you have an emotional time or upset it often causes the Still's to be worse for a bit. I'm hoping you can do something happy together and feel better. With good thoughts for you, till soon, Melt ----- Original Message ----- From: " jenniferking3378 " > I just want to say to everyone who emailed me, posted their opionions > on here thank you! I take everything that people say to heart and > think about them. My fiance' is a good man, he just goes about things > that aren't in such a good light. We talked a lot last night, I > cried, and he listened and we're fine, I just need him to listen and > understand what I am going through. We're communicating and that's a > start. > Last night I had a fever, and felt really bad, this morning woke up > and felt ok, but not great, tonight it's bad! Fever, stomach cramps, > my tummy is not settling down, my liver hurts and my spleen is huge, > because I can feel it. I am barely making it to the bathroom, and > feel like I am going to vomit, I really hope it's not a GI virus, I > had one of those in the beginning of this whole ordeal and it SUCKED. > AHHH 2 more weeks until the colonoscopy, I can't wait! Seriously I > have decided to watch them preform the procdure, because if I have > ulcers on my colon I want to see them, so I can tell people what they > look like! I think I am going to take another 600mg of ibprofren > before I go night night, I just ache. My arms were splotchy tonight, > but I can't tell if it's the infamous rash, my poor skin is sooo > sensitive......... I can't tell......... > ANyways, off to bed. > In a better mood and spirits > Jen#2 > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2003 Report Share Posted March 30, 2003 Hello Pat, I do hope that you begin to feel better and that the swelling in your feet and hands go away soon with relief from the Remicade and your other medications. I find that if I don't put my feet up during the day then they will swell up especially around the ankles and go upwards. I too use to be on Remicade perhaps for over a year but like you I found that it wasn't lasting as long as it should and certainly wasn't lasting until my next infusion. I use to get my infusion (after the initial loading dose) every eight weeks but had to switch to every six weeks as it was lasting the eight. After a while I noticed it would only last four weeks, so the benefits to my body were getting shorter and shorter so I went to see my Rheumy and he decided to switch to Enbrel. My last Remicade was last August and my first Enbrel injection was in December so I have been taking it for a few months. It does make a difference but not a huge one. When I spoke to my doctor about it and other drugs he told me how excited he was about the drug Humira and I think once it's approved in Canada that I will be switching to that drug. I do hope things get better for you. Take care, Marilyn mhogg69@... Canada Question: I have lately been having trouble with my feet..they ache alot and are swollen on the top so I cant wear certain shoes and when I walk my right foot hurts near the joint of the big toe although it is not inflamed at all,,they also feel like they are on fire, the balls of my feet also hurt to walk on..this is new for me although I read in one of the posts that someone else has had this..the same with my hands, they ache but are not swollen or inflamed its just a constant ache..Im due for my remicade on tuesday but it only seems to hold me for 2-3 weeks(I get it every 4 weeks)but at least It gets me through a few weeks of work before I feel I have to take a day off..I look forward to the remicade infusion so I can take a few days off from work every month except they usually are not pleasant days and then I have to go back to work but by then I can tolerate work a little better..I guess what I m asking is it normal(whats normal) to have the remicade work for only 2-3 weeks then I can tell I need it again? does this happen with anyone elses meds that you can tell you need it? Im also on 15 mg IM of the MTX weekly and prednisone daily..not sure if I should mention to up the mtx or the remicade(I get 5 vials every 4 weeks)I dont want to increase my prednisone.I take 20 mg day before my infusion and 20 mg day of it and 2.5 daily. sorry for the long post, Thanks for all your support take care love Pat from MA _________________________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2003 Report Share Posted April 5, 2003 Hi Kathy, thanks for replying..do you feel better on it..I guess I ahtought that when I was on something that worked then all symptoms go away..maybe thats because thats how it was for me before on just the mtx..now its not doing it. Its great that it keeps the fever and chills away , but I wish it took your pain away also well I know we will all hang in there, but like everyone its time to get back to really living again with out pain take care love Pat > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2003 Report Share Posted June 25, 2003 Dear Pat, I wish you the best of times. You sure do have it coming. Thank you for letting us know how you are and please make sure you get your rest as well as all that fun. I do hope your cough will leave soon. Till soon with a smile, Melt ----- Original Message ----- From: " chocluv20 " <chocluv20@...> wanted to let you know I will > be at the Cape rest of this week till Sun night for my daughters > dance competion(maybe Cyn will be there dancing). Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2003 Report Share Posted July 4, 2003 Dear , Thank you for letting us know what is happening. Sometimes a medication or even the anesthesia can make a person " not themselves. " Hopefully things get better for your dad soon, and you can all breathe easier. You know what ? This might sound weird, but whenever I get really stressed, my lower back pains. I don't know why, but it does. I think maybe everything sort of tightens, and the muscles in the lower back seem to be where it hits me most...that and headaches. Praying you can relax this weekend, and you *don't* go into a flare., and your dad improves more everyday. ((((((((((((()))))))))))))))) Love, tricia Wisconsin ***************************************************************************** * -- Hi everyone First I want to say thank you to everyone for their wishes and support.. Sorry to hear that Lynn's claim was denied. ((((Sue)))) for being.. Jul's I do hope they get you feeling better soon dear and stop that all theat weight loss..and everyone else, I haven't forgotten you, I promise. My prayers and thoughts are with everyone.. I have been trying to keep up with my emails, I just haven't been posting. I think I spoke a little too soon when I spoke about dad.. I have decided I am not going to let this weight go off of my chest until he is out of the hospital... Well the surgery did go fine on Tuesday. Wednesday there was complications with his lungs and heart. His heart rate was way up there and his breathing was really rapid, they had him on 100% oxygen and it still wasn't helping. At first they thought possible collapsed lung or pneumonia starting, they decided to try the NG Tube and got out 3 liters of fluid, don't know where it came from, after that he started doing much better.. Stats levelled out.. He has been very confused!!!!! I felt pretty good last night when I left him..I am soo stressed and soo tired.. I went to bed about 10/1030 only to get a call from the hospital at 230am this morning. Dad was really freaking out and no one could calm him down.. He is pretty disoriented..I talked to him on the phone and he got pretty pissed at me because I wouldn't take him out of the D___ place lol.. so they asked me to please come in, so back I went. Just got home.. I am at my wits end.. I really haven't been able to cry through any of this, I think I am trying to stay strong for my mom so she can break down, I don't know. I do know that no of this is good for me though.. I feel that I am going to snap at any minute. I want to thank everyone again for their well wishes and prayers.. Hopefully this weekend will be much better for him and me.. We are going to do grandma's ashes on Monday so hopefully after that I will finally be able to rest, I am so afraid right now that I am going to go into a flare again. My lower back is starting to really hurt, and I have never had this problem before.. Well thanks for listening that helps me some.. Take care and I hope everyone has a nice weekend.. Happy 4th.. Love to all Kel Kelley in Colorado Kelleyak31@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2003 Report Share Posted July 4, 2003 Thank you Tricia.. I got some much needed sleep today.. It is pretty hot here, and we are dry heat so that doesn't help much either.. I am not going back to the hospital today, I am going to take a break from there.. Mom is coming over and we are going to BBQ some steaks and do my shot, woohoo fun.. lol.. (the shot part, I could do without) With her here I should be able to cry, and we will sit and cry together like a couple of babies, guess I should go warn the neighbors incase there is a flood.. lol.. Hope you have a great 4th weekend. That is pretty weird about the back, so far I have been able to keep my headaches pretty much at bay, started to get one last night but it went away when I took the vicoden for the knee, ankle and back pain lol.. Love Kel Kelley in Colorado Kelleyak31@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2003 Report Share Posted August 14, 2003 (((((((((((((((((((((((((((((((((((((())))))))))))))))))))))))))))))))) LOVE too! ~~~tricia~~~ Wisconsin ********************************************************************** -- Hi everyone Hust wanted to touch base with everyone and say hi.. Well last week I started out with the throat, neck and ear pain and thought " oh no here we go again " . Went to my PCP's office and he didn't see anything and said that it was probably the stills.. he increased the pred up to 20 again to see if that would help, if it didn't then it is probably a bacterial infection. Well the increase didn't help, so he put me on an antibiotic on Friday night.. Was told by him and the pharmacy that it wouldn't have any affect on the MTX and to go ahead with my shot.. Starting on Sunday night, I ended up in soo much pain in my legs. Kind of that numb feeling, pain, tingling, weak.. Unable to stand or walk that much. Finally called my Rhuemy's office yesterday and talked to his partner. He stated that the antiobiotic can cause tendon swelling and/or rupture.. and to stop taking it..needless to say I am not taking it anymore or again.. Been up since 230 am in so much pain.. I was doing so well until all of this...... The vicoden isn't helping with any of the pain, been living in my bathtub lol.. and soo many headaches now.. Maybe it is just my body, but anyone taking MTX please don't take Levaquin. I know we are all different, but I wouldn't want any of you to go through anything like this.. Take care and love you all.. Kelley in Colorado Kelleyak31@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2003 Report Share Posted August 14, 2003 Thank you Dot... Hope you are having a good day and feeling okay from the humira shot..love ya Kelley in Colorado Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2003 Report Share Posted September 7, 2003 It was great meeting with Lorie and her husband . It is the first time that we have ever met anyone with this Dragon. and I really enjoyed sitting over lunch and talking about so many things. We seem to have quite a bit in common and I am hoping that we will keep in touch for a long time to come. I am looking forward to meeting many more people that I read about and " talk " to on line here. I do love to travel and feel that it is important that I take every opportunity to see new things and meet new people. I don't know how long I will be able to do this (before my body or my money give out), so I will just continue as long as possible. If anyone is interested in my travels, I have my scrapbook from my Alaska cruise with me and about 100 pictures on my laptop that represent the highlights of our recent trip to Ireland. Just let me know when we are in Vegas and I will gladly bring them out. Ann K Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2003 Report Share Posted September 24, 2003 Sounds like a plan to me Dan.. hehe.. Can have the party here anytime .. Love to party .. Come one come all.. So what do you say Caroline?? it is pretty nice here.. hehe Kelley in Colorado Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2003 Report Share Posted September 24, 2003 Sounds like a plan to me Dan.. hehe.. Can have the party here anytime .. Love to party .. Come one come all.. So what do you say Caroline?? it is pretty nice here.. hehe Kelley in Colorado Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2003 Report Share Posted September 24, 2003 Hi Kelley Thanks for the update. Hope the new medicines do you some good. Caroline has been looking for a place to have a party tonight. How about hosting the pitty party at your place?? How about it Caroline? Colorado Springs sounds like a great place to have the party tonight to me. Dan > Sorry I have been so quiet lately.. Have not been up to par lately.. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2003 Report Share Posted September 24, 2003 Hi Kelley Thanks for the update. Hope the new medicines do you some good. Caroline has been looking for a place to have a party tonight. How about hosting the pitty party at your place?? How about it Caroline? Colorado Springs sounds like a great place to have the party tonight to me. Dan > Sorry I have been so quiet lately.. Have not been up to par lately.. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2003 Report Share Posted September 24, 2003 Kelley- sounds like you are having loads of fun. Hope you get to feeling better soon. Please inform your doctor (the one doing research) that I am here in NW New Mexico, and I would love to be a part of this research thingy, too. I am not a sucker for punishment, but if it would further the chance of finding a better treatment for us all (or even some) I would be willing. Anyway, hang on tight to that sense of humour, and you will kick that dragon right in the head. Love and hugs....... Traci > Sorry I have been so quiet lately.. Have not been up to par lately.. > > Well I went to Denver yesterday and seen the Dr.. We are going to start the > Kineret on an every other day schedule for a month and see how I do.. woo hoo.. > hehe.. Looking so forward to that.. lol I am keeping a journal/diary for him > and will talk to him on the phone every week until I go back to see him in a > month. He is going to arrange for me to go to my rhuemy's office to get my lab > work done instead of going back up to Denver each week.. On to other news.. > hehe.. We are doing all of this and we had started on the research part of it > all also.. We did a skin biopsy off of my back yesterday too.. He is going to > grow the cells and see what grows and test different things.. His hope is > that once he can get enough information and testing together he will be able to > reach out and test other still's patients and come up with better info.. and > more help for all of us.. I know I have to you all before I dont mind being the > one to do all of this, and I dont, I am so glad to be part of this process and > hope to be able to help all of us here and the ones in the future.. My > appointment was 3 1/2 hrs long yesterday.. lol.. Never been at a dr's that long > before lol Mom said I am special.. hehe > > I have been in a lot of pain the last couple of weeks, that is why I have't > been posting much. Hopefully this will change soon.. Got my papers back, > finally from my rhuemy, so will see what happens with work.. He did recommend a > handicap sticker for work as not having to walk so far.. > > Okay I am off again.. I love you all.. Where is the party???? Waiting for it > to get started hehe > > Kelley in Colorado > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2003 Report Share Posted September 24, 2003 HI Everyone.. Ok..I'm feeling really down in the dumps today..it's my 45th birthday and I got out of the hospital yesterday. My BP went up (200/176)..stayed two days there. Went back to work today..stress land..I'm not real sure how long I can stand all this without just yelling.. Thanks I feel much better now that I have let off steam. You all are great to just listen (read) all of this. The dragon has also hit in a big way, the rash is really bad today..OH I have it..it's the Red Dragon...LOL..ok the meds have me a little crazy..but then again I could have been that way for a while. Love hugs and all that good stuff to you all Re: Re: Hi everyone Sounds like a plan to me Dan.. hehe.. Can have the party here anytime .. Love to party .. Come one come all.. So what do you say Caroline?? it is pretty nice here.. hehe Kelley in Colorado Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2003 Report Share Posted October 20, 2003 from Dale, Mom to Katy, CVID, age 19 Hi, , >I told him we haven't seen the immuno since Hunter was diagnosed almost five years ago. > > You may want to check in with your immuno if you feel good about him, just to keep that relationship because Hunter is preparing for adolescence and there may actually be some improvement. So, I would certainly see an immuno approximately once a year until you get through puberty. Katy's immuno's want to see her once a year -- but, we only schedule the visit about once every two years, etc. just because she's so stable. >Is there a genetic test to see if we carry the gene for cvid, > No. Not yet and as far as I know, no one is even close. They have done some work with CVID that is definitely familial (showing up in families through several generations) but nothing on the random cases -- and most CVID is random. >and are kids supposed to be retested periodically? > You should be getting trough levels (drawing and checking the levels just before IVIG to see what the absolute lowest numbers are every 6 months. That's because IVIG is very dependent on body size -- so, you wil need to recheck the troughs and adjust the dosage accordingly and because the body may increase or decrease it's need of IVIG. If you regularly check the troughs you should be able to see any improvement in the body's production of IgG -- according to Dr. Lederman of s Hopkins. He said that there is no reason to ever trial off someone who has shown by lab test to be low on IgG - because the trough levels would reflect any increase. However, many immunologist believe that trialing off (going off IVIG for 3 months and then rechecking all the levels -- including vaccinations -- is a better indicator. Katy started IVIG at age 13 and we've never trialed off and have no intention of doing so! I say if they are doing really well -- why change it, and if they are doing really poorly -- you can't risk taking them off! Dr. Lederman reported on a case where a 20-something young lady spontaneously began producing higher and higher trough levels with no change in IVIG -- they took her off IVIG and she continued to improve all her levels -- so she stopped IVIG altogether and is doing fine! That's his basis for not trialing off and risking infection. > IVIG to 10 g. He weighs 58 lbs. > >I'm just wondering if we should see the immuno to see if there is anything different that we should be doing? Any input would be great! > , I would certainly want to see the immuno if your new pediatrician is talking about changing things that you are not comfortable with. The immuno could support you (or explain why) so that you could be comforable with his care. REMEMBER, if you will call IDF national number 1-800-296-4433 and give them your new doctor's mailing address, they will put him on their mailing list to help him come up to speed with PID. Best wishes. I'm glad Hunter is doing so well! In His service, Dale Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2003 Report Share Posted November 13, 2003 Kelley, thank you for writing. You have been on my mind so much lately. I will hold the highest hopes that the drug company will pay to try the Humera. Some here have had good responses with it. It sounds real nice to be able to stay at a house in the mountains. Just be sure they have forced air for you so you don't get cold if snowed in, lol. Once again it is good to hear from you and even when we don't your in our hearts. Smiles for better days, Melt Hi everyone First off... Sorry I haven't been around much. I have been up and down. I do think of you all often and read all the emails. I hope Sue2, , , anyone I missed, are doing better and feeling alot better.... good luck with your surgery. You are in my prayers. I talked to the Dr in Denver yesterday. He has talked to the drug rep, and everything is looking good so far that they will give me the drug for free. They want to be part of this study. He is talking to his "big boss" out of state, so have to wait for him to come back to know when things are going to happen. The new drug they want to try me on is Humera. (sp) So any advise would be helpful lol.. If this works, hopefully I can get off the MTX and my hair will start coming back lol.. I am starting to loose it now that my Rhuemy increased it to the 10cc's... pout pout lol.. Good thing I keep it short. lol.. I see the Rhuemy again, the one here, in December and last time he had talked about tappering the prednisone also... Again I am sorry I haven't been around much. I dont know if it was coming off the Kineret or not, but I have been in a lot of pain. Got my flu shot last week, now I dont know if I am fighting off something or if it is the Flu shot. uggg lol.. Blasted Dragon.. hehe.. I am going to take a mini break at the end of the month, after thanksgiving. I am going to the mountains to house sit for my aunt and uncle, but will still have access to my email. I think it will be a good get away.... hehe.. Hopefully I wont get snowed in lol.. Love you all and think of you all lots.... Kelley in Colorado Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2003 Report Share Posted November 18, 2003 Hey Kim...Christmas 2004 you will be asking Santa to bring you a ton of new Cloths! Yeeee hawwww! Jo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2003 Report Share Posted November 18, 2003 > Hi, my name is Kim (even though the email says megafone - its my > daughter's) I am having surgery on Dec 10, 2003 with Dr. K > > I live in Texas and have UHC insurance that approved me last Friday > YIPEE > > Anyway just wanted to thank you guys for inviting me to join the > group and this time next month... I'll be post op tee hee > > Kim Welcome, Kim Congrats on your surgery date!!! that's fabulous! Joy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2003 Report Share Posted November 20, 2003 Hi Kim! Welcome to our group and congratulations on getting your date! I look forward to learning more about you. Hugs and blessings, Ann Quote Link to comment Share on other sites More sharing options...
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