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Posted 4/4/2008 3:23 PM (GMT 0)
I knew it... I knew it would happen. When I started taking MTX my doc wanted me to try to stop Plaq, we also tried this when I started Imuran (which didn't go well). Well instead of stopping all the sudden I tapered down to 1 tab for the last 2 weeks and I am feeling it. For more than a week when I wake in the morning or in the middle of the night I hurt from head to toe.... I mean every single part of my body hurts and it goes on for hours!!!!!! skull I have been so tired at work that at any time during the day I could have taken a nap and I found it very hard to get motivated to do my job. I decided to take some time off, so I go back to work on Wed. I hope the extra rest will help me get out of this flare quicker.

I went to the rheumy yesterday and she said I could start back on plaq, but now I have to wait to get my meds in the mail, I knew I should have went ahead and refilled the rx. I just called my local pharmacy to see if I could get a partial rx, I may have to pay out of pocket but the way I feel right now I don't mind at all. The good thing is I started to feel the MTX working on my joints so I am very hopeful. My liver enzymes are back to normal and she doesn't think it was due to myostis, not sure what is was. Now I am wondering what else can cause muscle pain, weakness & spasms which I have been experiencing for the last couple of weeks.

We are leaving for Florida to see our son for a couple of days, I don't do well in a car for more than an hour so I don't know how I am going to make this 4-5 hour trip, please say a prayer for me.

Thanks for listening (reading). I hope everyone has a wonderful pain free weekend! Hugs to all
Posted 4/4/2008 3:42 PM (GMT 0)
awwww....i hope u get to feelin better sweetie....guess whut tho...i got a call frum ur drs office yesterday...i have an appt for the 17th of this month...im estatic!!!! i also have an appt next week at grady...im tryin to get in to see dr lim in their lupus clinic...do u know anyone who has been seen down there?
Posted 4/4/2008 3:49 PM (GMT 0)
Thank you! Yes I have heard great things about Dr. Lim too. Were you able to get in to see Dr. Kim?
Posted 4/4/2008 4:55 PM (GMT 0)
Hi Stacie,

   I'm sorry to hear you have been in so much pain....((Hugs)). I hope once you get back on your regular dose of plaq you will feel much better.

   I hope your trip goes well also. It is hard to ride in a car for hours for us. Please take care and rest. You will be in my thoughts and prayers.

                                                     Babs

Posted 4/4/2008 6:30 PM (GMT 0)
i go on the 17th
Posted 4/6/2008 5:11 PM (GMT 0)
Hi Stacie,

   I'm just checking on you to see if your feeling any better. Update us when you can. You are in my thoughts and prayers.

                                                      Love, Babs

Posted 4/7/2008 2:19 AM (GMT 0)
Thank you Babs, I am feeling a little better. I was able to get a partial prescription of Plaq on Friday so I've had a couple of full doses of it and can tell a difference. I am anxious to see how well my new cocktail of meds is going to work. Hugs and luv
Posted 4/7/2008 9:18 PM (GMT 0)
Stacy,

I hope your new meds work for you. It's good news to hear that you got some relief when you went back on plaquenil. I've had two rheumys tell me that I'll never go off plaquinil and I don't have any desire to! It's cheap and I experience no side effects from it. Let us know how you're doing. You sounded like you were feeling awful.

Pat
Posted 4/7/2008 10:51 PM (GMT 0)
Thank you Pat, I said the last time she tried to take me off Plaq that I would never do it again but I thought maybe this time would be different because of the MTX, but it wasn't. Hopefully she won't ever try it again, I just hate feeling that miserable, living with lupus day to day is bad enough.

I read in another thread that you are going gluten free, how is it going? Are you cooking all your meals separate from the family or just one meal? I have found a website with some really good recipes.
www.gluten.net/recipes/ . I have tried different brands of bread, cookies, etc. let me know if you have any questions on products.
Posted 4/8/2008 3:55 PM (GMT 0)
Stacie, it's going real well. I feel so good now and am getting back to myself. I've even had my hair cut so I look like my old self again, have lost 13 pounds, shopped for a few new outfits which makes me feel even better, and am getting around a lot more. Yesterday I stopped by the health food store and picked up a few more things and am enjoying cooking. I make a lot of soups like lentil soup, and bake four or five sweet potatoes at a time so I can pull one out whenever I want one. We don't have kids at home so if my hubby likes what I've cooked he'll eat it and if not he'll make something for himself that is on his weight watcher's diet. When the grandkids come over I'll make them something and eat my food because they're not into the stuff I like. So it's working well. Most of the things I make can be refrigerated so I just have to pull out something and heat it up when dinner time come. So even if I were cooking for a family it wouldn't be hard to incorporate this kind of diet. It would be good for anyone but kids take a time to re-train.

Thanks for the website. I'm sure I'll enjoy the recipes. I didn't know you were gluten intolerant. Are you? How do you deal with cooking for your family?

Pat
Posted 4/8/2008 4:19 PM (GMT 0)
Pat, oh yes my daughter and I both have Celiac (gluten sensitivity) and been on a strict gluten free diet for almost 5 years now. My hubby still eats things like pop tarts and sandwich's but as far as dinner and other meals we cook at home, we all eat gluten free. He is also very careful with his bread crumbs etc and doesn't use my toaster for his food.

I hope you continue to have good luck with the gluten free diet. Take care
Posted 4/9/2008 3:34 AM (GMT 0)
Stacie,

  I'm glad to hear your getting some relief now that your back on plaq. Hopefully, you will feel much better over the next few days or so.

  Now you and Pat have me curious about the gluten free diet.... :-) . How do you tell if your sensitive to gluten? I don't even know what gluten is....lol. Is it in all the good stuff like bread, pasta, and chocolate? Sorry for the questions, just wondering if everyone benefits from this type of diet and how hard it is to stick too. It sounds like you and Pat are doing well with it.

  You take care and keep us updated on how your doing. You are in my thoughts and prayers.

                                                                   Babs

Posted 4/9/2008 6:29 PM (GMT 0)

Stacie...  <<<<<<<<<HUG>>>>>>>>>>

  sad   I am so sorry you are flaring.  Im praying it passes quickly and the Plaq kicks in immediately.  I do the aching all over thing when I flare and its just miserable.  Ive even tried putting the feeling into words so my family will understand, but its very hard to do that.  Ive been in this latest flare for about six weeks, but I think its finally beginning to let go of me a bit.

Rest as much as you can, you are in my prayers.

 

Posted 4/9/2008 9:35 PM (GMT 0)
Thank you Babs and Victoria for your hugs and prayers, they mean a lot to me.

Babs - if you are intolerant to gluten you would know it, some of the symptoms are diarrhea, nausea, cramping, abdominal pain, vitamin deficiencies, some have weight loss (like me) and others don't. There are some blood test that can be done but they aren't 100% accurate (mine were all negative), docs can do a biopsy of your small intestines to check your villa but even that is not 100% accurate (mine was negative) the REAL test is trying the gluten free diet for a couple of weeks, if you see an improvement in your GI symptoms / vit def then you are gluten intolerant.

Gluten is a protein found in wheat, rye, barley and oats. Doctors think it's a rare condition and often misdiagnose it as IBS. Here is a summary from a great website: www.celiac.com/articles/572/1/A-Summary-of-Celiac-Disease-and-Gluten-Intolerance-by-Scott-Adams/Page1.html

I have no idea if being on the gluten free diet helps my lupus symptoms or not and will never know because I will be on a GF diet for the rest of my life because gluten makes me very ill. It literally happened overnight and I lost 40lbs in 2 months. I had never been a sickly person before this and it seems like it snowballed from there. I am sure I am leaving something out, so feel free to ask me anything.

Victoria - Thank you for your prayers and hugs. I think this was the first flare where every part of my body hurt, don't want to ever go through that again. The only way I could describe it is, it felt like someone beat me up while I was sleeping. I pray you are coming out the flare and start feeling better now!
Posted 4/9/2008 11:16 PM (GMT 0)
Stacie,

   I took a look at the link you posted. I'm sorry you have to deal with that...((hugs)). It sounds miserable to me.

   The only GI problems I have is some diarrhea, alot of roaring and rumbling in the tummy after eating and history of diverticulitis and polyps.

   Tks for all the info and for answering my questions. You are so sweet.... :-) . I sure hope you start feeling alot better soon. Please keep us updated. I'm still praying for you.

                                                        Babs

Posted 4/9/2008 11:49 PM (GMT 0)
Babs, after I went on the GF diet I improved a lot but still not 100% (like I should have). Like you I still had diarrhea and audible bowel sounds so I looked it up on WebMd and guess what was the only link it pulled up........... you got it..... Lupus. That was the beginning of my journey in Jan 2004.

You are in my prayers too! Luv ya
Posted 4/10/2008 12:03 AM (GMT 0)
Wow Stacie,

    I was shocked when you said lupus was the only link that pulled up. So, you have been on the GF diet for 4 years now? I know when we first met here you were having alot of problems with diarrhea and wt loss. We have been here quite awhile now haven't we...lol.

    Take care sis!

                                                  Love you too, Babs

Posted 4/10/2008 12:37 AM (GMT 0)
Babs, this Sept will be 5 years that I've been on a GF diet, I can't believe it's been that long. When we first met lupus was causing my GI probs and weight loss. When I was finally dx in May 2005 and my doc started me on Imuran shortly after that, the diarrhea stopped and I gained 20lbs (which I needed to gain). It seems like forever since I was a healthy person.

We have been here awhile and you are such a great friend!!!
Posted 4/10/2008 1:21 AM (GMT 0)
Stacie,

   Five years is a very long time to suffer....(((Hugs))). Your a great friend as well sis..... :-) . Us southerners need to have a meet up one day this summer. There's several of us not that far apart..... scool .  I'm game!!

                                                            Babs

Posted 4/10/2008 1:25 AM (GMT 0)
I made it to Florida and back.......... I'm game too!!!!!
Posted 4/10/2008 1:33 AM (GMT 0)
Stacie,

   Sounds good to me. We will have to see if we can make a post for a meet up and make some plans...Maybe Atlanta???

                                                         Babs

Posted 4/10/2008 1:36 AM (GMT 0)
sure, sounds good.
Posted 4/10/2008 1:39 AM (GMT 0)

Okie Dokie!!  :-) yeah scool    Maybe one of the Mods will see this and let us know if we can start a tread....if not we can email them.

                                                             Babs

Posted 4/10/2008 3:12 AM (GMT 0)
Looks to me like the thread is already started! LOL. It's not really permitted in the rules, mostly for our own protection -- it's better to do through email rather than have real names, addresses, locations, illnesses and the like floating around on the internet for all kinds of wackos and spammers to find. That aside, there does seem to be quite a number of us scattered within 2-3 hours of Atlanta.... Cheers,
Posted 4/12/2008 2:55 PM (GMT 0)
LOL Lynn,

   Sorry about that.... :-) . Maybe we can figure out some way to do this. Most people don't have their emails in their profile and I can't remember who all is around the general area. Maybe between the three of us we can get it planned.

   Stacie, will you email me please about this?

                                                              Babs

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