I have lupus.
#254278 - 03/24/06 04:43 PM
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lalala
Reged: 02/14/05
Posts: 2634
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Well, yesterday I got my diagnosis: lupus. I actually had a positive anti-dsDNA test, which is specific for lupus, in addition to the RA factor and ANA. In two weeks I start plaquenil, but first I have to get my eyes checked. I also had to have a urine test done, to check my kidneys, so I'd appreciate it if you could send me some positive thoughts/vibes and prayers that the test comes back normal. Thank you, thank you, thank you! 
I feel both relieved and sad.  My rheumy seemed confident that the Plaquenil should help me feel less fatigued and less pain. Wow! I am a little nervous about starting it because I've heard it can cause D and fevers the first few days you're on it.
I probably won't be posting as much, so I just want to thank everybody for your support and for showing me how to be a better advocate for my health!
Wow -- it's been 10+ years of dealing with this and I can't believe I finally have an answer!
Edited by Maria! Maria! (03/26/06 12:49 PM)
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Oh my gosh!
#254279 - 03/24/06 04:50 PM
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Nelly
Reged: 08/06/04
Posts: 4381
Loc: Within stray mortar fire of DC
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M!M! I am stunned. {{{{{{{{{BIG HUGS}}}}}}}}}}} to you for banging down all the doors to get this answer. Lean on us as hard as you have to. We're all here!
I can't believe it! How old are you, and what symptoms match up? I'm going to read up on Lupus as much as I can right now...
~nelly~
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Finally some answers! I hope the "plaquenil" does the job for you. It must be an incredible relief to know what the problem is now. I hope this isn't a stupid question, but I'll take the chance: does this mean you don't have IBS after all?
Will you stay with us or move on to a Lupus support board? I hope you do both.
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<img src="http://home.comcast.net/~letsrow/smily3481.gif">Bevvy
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I know you feel relieved that at least you have a diagnosis.
I have a friend that has Lupus and she has had it for many years. She is doing great and still working.
Hopefully with your medications you will be fine. I hope you will stay on the boards and keep us updated on your condition.
Good Luck
Barbie
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I'm glad you found answers, but I'm sorry for the answers you found!  Hope your eyes and kidneys check out OK and that the Plaquenil helps you feel better! If you're nervous about having problems when you start it, try to make sure you start it when you've got a couple days off work, just in case (I always started new meds Friday afternoon/evening).
I'll be thinking of you. I hope everything goes well.
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jen
"It's one of the most serious things that can possibly happen to one in a battle -- to get one's head cut off." -- LC
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I'm so very sorry. I just did a quick google and it's no walk in the park. But if the meds you give help you at all then it will be an improvement.
Getting diagnosed with a serious disease is not an easy thing. We're all here for you and you can get through this.
I found this, you might want to check it out:
http://www.uklupus.co.uk/cope.html
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I'm really sorry, Maria. You have tons of prayers coming your way.
I pray you gain some relief from your symptoms...and the determination to know you will have a wonderful life despite having an Auto Immun diagnosis.
What are the symptoms/treatment?
I hope you decide to stay on the boards and allow us to continue to support you emotionally. Many of us have come to love you and we want to continue to have you in our lives.
Big ((((((((HUGS)))))))). Love, prayers, and well wishes coming your way, sweetie.
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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I'm shocked--and yet it makes sense. I'm glad that you're no longer in the dark & I hope you are on the journey toward increasing wellness. Whoever would have thought...I suspected your immune system was shot, but lupus? I'd better read up on this. I don't know very much about it.
I'm glad you finally KNOW!
Kate.
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Sweetie.....please hang in there. If there's anything besides prayers we can do for you, please let us know.
Hugs, maria. I'm sorry about your diagnosis. Tkae excellent care of yourself OK?
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Keep on keepin' on...
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I'm sorry to hear that, I hope you end up feeling better.
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IBS-C and Bloating
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I hope you start feeling better. The sister of a very good friend of mine has lupus and she is able to lead a pretty normal life. She just has to be a little more careful about staying healthy than other people. I'm glad you finally have an answer. Now you know what direction to go in. Good Luck.
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***********************
If you're not dead, you've still got time.
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*gentle HUGS*
#254380 - 03/25/06 08:37 AM
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melitami
Reged: 02/23/04
Posts: 1213
Loc: Ewing, NJ, USA (IBS-D, Vegetarian)
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I'm happy for you for getting a diagnosis, even though it's not what was expected. I can recommened the butyoudontlooksick.com message boards, they're a great group and several of them have lupus. It's an awesome support group.
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Melissa
Friendship is thicker than blood. ~Rent
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my mom discovered she had lupus, went on medication, and it made a HUGE difference, and now I even forget she has it because she basically has no symptoms. So yes, it's GREAT you got a diganosis because now you can start treatment. Good luck!
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Wow.... I had no idea you were even being tested...guess that is my fault for not being around much....
My Mom has lupus...and has since I was in grade school.... but she has it very much under control now with medications...there was not much available for the first 10 years of her having it
Best of luck to you... {{hugs}} and keep us posted on your progress....
--------------------
www.facebook.com/shell.marr
www.myspace.com/shellmarr
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Thanks for the hugs! 
I'm 29, but I've been experiencing these "flare-ups" since I was 19, about two years after my IBS started. My symptoms have included extreme fatigue, severe muscle and joint pain, joint swelling, sun sensitivity and skin rashes (which I always thought was just sensitive skin or acne that I only had during the summer). I've had other symptoms over the years, but they were so mild that I never really bothered with them (some mouth ulcers, a bit of hair loss) and never thought that they were connected. Now I see that they're probably all part of lupus.
The last two years have been really bad, which I don't like to talk about, especially with the severity of fatigue and pain. Anyway, a lot of these symptoms finally had been showing up at the same time, so I think it was easier for my PCP to refer me to a rheumatologist. I really thought I had RA or fibro when I realized I couldn't explain the constant pain and fatigue on IBS (especially once I got stable). I've learned that a lot of people with lupus also have GI problems and lactose intolerance! But it's not something that's used to diagnose lupus with - just overlapping syndromes.
I've just been reading up on lupus and wondering what the future will bring!
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No, you could never ask a stupid question!!! Actually, I've been reading up on lupus and am learning that A LOT of lupus suffers also have overlapping syndromes - including IBS and other digestive problems.
Right now I'm not sure about boards. I really love these boards and I feel that my IBS is probably separate from lupus, so I can use the continued support here. I'll probably end up doing both - depending on my energy levels. I might take a break for a while...
Thank you for your support!
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It's good to hear that your friend is doing well and still working. I love my library job, but before I knew what was wrong I really thought I would have to quit at the end of this month. Now that I have some answers, I have a lot of hope that I can continue working.
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Quote:
I'm glad you found answers, but I'm sorry for the answers you found! Hope your eyes and kidneys check out OK and that the Plaquenil helps you feel better! If you're nervous about having problems when you start it, try to make sure you start it when you've got a couple days off work, just in case (I always started new meds Friday afternoon/evening). Yep, I'm already planning on taking some time off when I start the new med. I'd like to have at least five straight days to test it out - and be at home, near my lovely bathroom.
I'll be thinking of you. I hope everything goes well. Thanks, Jen!
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That was great information to have, especially the section on coping and living with lupus. It'll be helpful while I'm waiting for the Plaquenil to start working.
Thanks for your support, Tina!
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Re: Beth
#254459 - 03/25/06 08:00 PM
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lalala
Reged: 02/14/05
Posts: 2634
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Beth, thanks so much for your prayers and support. It means a lot! You know, I think about you a lot and I hope you'll get some definitive answers and treatment for what you've been dealing with. Have you been checked for any autoimmune disorders?
Here's some info about lupus if you want to know more: Lupus Fact Sheet .
From what I've read and heard (just in these past two days), it seems like a lot of lupus sufferers lead great lives. I'm excited to think that I might really get my life back - and my vitality!
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Re: Kate
#254461 - 03/25/06 08:03 PM
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lalala
Reged: 02/14/05
Posts: 2634
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That's exactly how I feel - surprised, yet not surprised once I learned more about lupus. I never thought there was anything really wrong with my immune system...I think I was in denial.
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Shannon, thanks so much for your support and prayers. I think it's enough just knowing that there's always someone here I can talk to.
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Thanks, Naturapanic. I hope I'll feel better too!
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It's really good to hear about all these people w/ lupus who are leading normal lives. Thank you for sharing that!
I'm really hoping to have enough energy to make it to any future IBS meetings in Woodburn. It would be great to meet other IBS sufferers. Maybe I'll see you there!
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Thank you so much for the gentle hugs! I sure need them.
I spent most of today reading through past posts on lupus and Plaquenil at the BYDLS boards. Wow! What a great group of people! Sarala (Ruchie) had mentioned them before, but since I didn't know what was wrong I had no idea where to start. Thanks for the recommendation! You'll probably see me post there in the next week or two.
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I was so glad to hear that your mom is practically symptom-free since starting her treatment. Wow! I hope she continues to do so well.
Thanks so much for your support.
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Quote:
Wow.... I had no idea you were even being tested...guess that is my fault for not being around much.... Don't worry about it. I haven't talked much at all about it - I think in the last month or so I've only posted twice about it. I was thinking I had fibro or RA or that maybe it was just in my head.
My Mom has lupus...and has since I was in grade school.... but she has it very much under control now with medications... That's good to hear! there was not much available for the first 10 years of her having it That must have been so hard for her - especially having children and everything. Well, I'm glad she's getting treatment now. I wish her the best!
Best of luck to you... {{hugs}} and keep us posted on your progress.... Thanks, Shell. I'll probably be posting a lot if I get D when I start the treatment!  I'm stocking up on extra-safe, mostly SF food and snacks right now.
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Post deleted by Jeano
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Thank you so much!
I hope you're in good health. I remember you posting about suffering from chronic headaches - I hope that you're finding relief and feeling much better.
Take care.
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You will get through this sweetie. Treat your body with the utmost kindness. Now more than ever, eat healthy. Hmm, tongue in cheek, I should take my own advice...
But really, hopefully you can stave off the self-destructive body stuff...ok? Love ya!
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Keep on keepin' on...
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Hi Maria,
I am sorry that you have lupus, but I am so glad that you've found out what is going on and that your doctor has already got a plan that he/she thinks will really help you.
I don't know anything about lupus, but I really hope that you end up feeling better for the medication and everything and my thoughts will you be with.
Good luck,
**hugs**
Steph
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~~I'm not crazy, I'm just a little unwell-I know right now you can't tell~~Matchbox 20
IBS-D,pain.
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Maria,
I was given the same diagnosis. Some days i feel like #@&%, but other days I feel OK. Mostly i don't think about it too much because there are just so many other things pressing - kids. I take Aleve as needed and I get by. My doctor told me that his wife tested positive for lupus and RA, same as me (and you too, i guess). A year later she tested negative for both and no longer has problems. I know it's just one person's story, but it gives me hope. Like you, I have had strange symptoms for at least 10 years before seeing a rheumatologist. It just comes over me off and on, but I figure that if I was going to be truly debilitated by this, it would have happened by now. I sincerely hope you find relief with the plaquenil. Let us know how it goes.
Laura
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Maria-
I am glad that you finally got some answers. I know that Lupus is not something anyone wants to hear they have but when I did some researching on it when they were testing me I found out that it is very managable and you can live a pretty normal life with it. Not only that there are some great medicaitons out there to help with it. *hugs and prayers* for you my friend. You have always been such a strong and positive person that I know you will handle this well.
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I'm sorry about the diagnoses but at least now you can start treatment and hopefully feel better soon! I started placquenil just over 3 months ago. I started on 200mg a day for one month than increased to 400mg a day. The first 2-3 days on it and when they increased it, I felt funny. It didn't really effect tummy too much, it just made me jittery and I couldn't concentrate and I just felt wrong! It wasn't too bad and only lasted a couple of days.
The eye test they are going to do is a dozy though! Bring sunglasses because you will be dilated and your vision will be blurry and light sensitive for a few hours. They will also do a visual field test in a big machine with red lights, this caused a reaction in me and I passed out, thats not the norm though!!  There is a certain ratio they use, so many milligrams of placuqneil for your weight. As long as they keep it under this particular ratio, which I can't remember this second, its very unlikely to damage your eyes but you will need thorough eye exams once a year.
I hope you start feeling better soon! Hugs!
--------------------
Taking it one day at a time.....
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I'm also starting on 200 mg/ day and then after a month increasing it to 400 mg (200 twice a day). I currently weight only 110-112 lbs, so the rheumy said he'd like to see me gain some more weight (I'm trying!). He said I should be fine on that dosage, especially if I take it with a meal. So that's what I'm doing. Everytime I start a new med I really worry about D as a side effect!
Thanks for the tip on the eye exam. I wasn't sure how intense it would be and was planning on driving myself and then heading to work directly after (about a 50 minute drive). I'll make plans for it now!
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Quote:
Maria-
I am glad that you finally got some answers. I know that Lupus is not something anyone wants to hear they have but when I did some researching on it when they were testing me I found out that it is very managable and you can live a pretty normal life with it. This is what I've been hearing and reading too. It does make me feel very hopeful! Not only that there are some great medicaitons out there to help with it. *hugs and prayers* for you my friend. You have always been such a strong and positive person that I know you will handle this well. Thank you! 
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I'm so glad you replied. Are you taking anything other than Aleve? I've tried to keep busy, but there have been so many days that I couldn't even get out of bed or fully wake up or even move comfortably. But I have had some good days too! Those days are great! I'm really hoping the Plaquenil provides some more relief.
How often do you have to check in with your rheumy and get retested?
Take care, Laura!
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Thank you so much, Stephie! *Hugs* to you too!
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I'm sorry. But like you said, at least you know what it is now. I hope the treatments work for you! take it easy...
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Kiwi
IBS-C
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No problem. I doubt you will want to go to work after that eye exam though! I had an awful headache and felt terrible afterwards! Luckily, I only work 5 minutes from the eye dr I went to but I wasn't able to do much at all that day! If you can take the day off, I would!
I also take 200mg twice a day, one in the am and one at bedtime!
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Taking it one day at a time.....
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I sent you an e-mail. I'm shocked...and I'm sure you are too. Hang in there...and lean on us as much as you need to. We all love you and this is ahome for you *hugs*
Love and gentle hugs,
Sarala
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Formerly known as Ruchie
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Oh, honey. I'm sending you TONS AND TONS AND TONS of hugs. I know it's difficult to swallow, but at least you know what you're up against. And besides, a few days of discomfort at the beginning of a treatment may be worth it in the end.
Let us know how you're doing. You've been so helpful and kind to me. Let me know if I can do anything for you. You can always e-mail me. I'm ready to listen ANYTIME!!!!
Love and hugs, Alicia.
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Formerly HanSolo. IBS, OCD, Bipolar, PTSD times 3.
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Maria,
Like the others I am sorry to hear you have Lupus.
I hope with the knowledge you have now and meds you will be able to start to feel better.
Terry
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Oh Maria, only reading this now.
It must be a great relief to finally have a diagnosis and something that you can now aim to overcome and work towards treating your symptoms properly. I can also imagine the anxiety at your illness being diagnosed and finding out that there is definitely something medically wrong.
Hope you are doing ok.
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S.
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No problem at all! I looked up Lupus for myself (to get more information on it) and I saw that there was a coping section and wanted you to see it.
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Maria
#255563 - 03/31/06 12:36 PM
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Sand
Reged: 12/13/04
Posts: 4490
Loc: West Orange, NJ (IBS-D)
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I was away when you posted this, so I'm a little late but...
I'm so glad you finally have an answer, although I wish it was a better one. I don't know anything about lupus, but I'll be thinking of you as you begin finding what works to help you feel better.
If there's anything I can do to help, please let me know.
Take good, good care.
--------------------
[Research tells us fourteen out of any ten individuals likes chocolate. - Sandra Boynton]
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I'm really sorry that I'm so late in posting a response to this, but I just wanted to say that I'm sorry that you have lupus I am glad that you finally have an answer though and (by the sounds of it) a good rheumy who can help you feel better.
Take care of yourself
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I know I already responded to your email...but I just wanted to thank you again for your support! It does mean a lot to me! *hugs*
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Sorry I'm so late in responding, but I've just been in this weird brain fog for the last week. I'm doing fine - just dealing with a flare-up and busy with work.
Thank you SO MUCH for your support. *HUGS!* I'm feeling a lot better now about taking the Plaquenil (I start on Sunday). You're right - any side effects will only be short term and in the long term I should be feeling better and have more energy!
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Did I respond to your response? I can't remembrr now? 
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Formerly known as Ruchie
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I'm doing pretty well, other than the lupus. LOL! But it's a mild case, I think, and I'm getting a lot of support from my friends and family. It is good to finally know and understand what's going on with my body.
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Re:Yep!
#256260 - 04/04/06 02:12 PM
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lalala
Reged: 02/14/05
Posts: 2634
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I just haven't been responding to any emails lately. I've mostly been sleeping and eating - oh, and doing some spring cleaning!
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Re: Sand
#256265 - 04/04/06 02:19 PM
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lalala
Reged: 02/14/05
Posts: 2634
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So good to hear from you! And thanks for your support. *hugs!*
I'm glad to have an answer too - I was just at that point where I was going to give up and say, "Maybe it is just in my head." Now, I feel like I don't have to quit working or always keep track symptoms or feel so guilty about not being able to do everything I want to do.
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I really like my rheumy. He whistles a lot while he's thinking, which is cute and unsettling at the same time. LOL!
I know you've been going through a lot lately, and I really hope you're getting the help you deserve from your doctors. Please keep us updated on how you're doing! Oh, and I love hearing about your wedding plans - such a beautiful dress you picked out!
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Give us an update as to how you're doing.
XOXO, A.
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Formerly HanSolo. IBS, OCD, Bipolar, PTSD times 3.
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Maria
#256279 - 04/04/06 02:35 PM
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Vicam
Reged: 02/24/04
Posts: 1955
Loc: Ontario, Canada
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Thanks You're really sweet to be thinking about me when you're going through this. I think I'm finally on the right track...hopefully I'm right. And thanks for saying that you like the dress...I'm really excited about it! There probably won't be a lot of other plans for awhile just because the wedding isn't until 2008, but who knows?
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I got tested at the free clinic and just came home from getting my lupus tests results back (ANA and RA). I don't have it. Thanks for being so brave and giving me the courage to get tested.
I hope you stick around to keep inspiring me and others and keep us informed regarding your treatment!
~nelly~
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My urine test came back normal! Whooo! Thanks everyone for your good thoughts and prayers. (I can't believe I'm so excited about my pee.)
I have a "med check" appointment with my PCP and my eye exam this week. I start taking my new lupus med on Sunday. I've stocked up on my safest (for IBS) foods, teas, and Imodium, in case I feel nauseated or have other GI side effects. I'm also working with my work supervisor and someone in personnel about getting on long-term disability; I'm almost out of leave and I want to make sure I don't lose any pay or benefits if I continue to feel so bad or if I get worse.
Here's something strange: I thought I was dealing pretty well with this lupus diagnosis. To me, from what I've read and from what the rheumy said, it's not as serious as it used to be. I mean, it is (the fatigue, pain, and arthritis SUCK), but there are a lot more treatment options and ways to manage it than 20 years ago. I am hopeful that the medicine will work.
Anyway, when I went to pick up the Plaquenil and was talking to the pharmacist I started tearing up! I don't usually cry in public, so it really surprised me to feel so...emotional. I was really happy when I first got the diagnosis ("An answer! Finally!"), but as the days passed I felt stuck and anxious - as though by having lupus I was being forced into a relationship or commitment. Isn't that weird?
I don't remember what I was thinking when I was at the pharmacy, but getting the medication just made the diagnosis REAL.
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Nelly! I'm so glad you got tested for lupus poopus, and I'm happy to hear you don't have it. Do your symptoms sound similar to mine? Did the folks at the clinic say anything about getting retested later? What's your sed rate like?
Thanks so much for your kind words!
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Re:Yep!
#256293 - 04/04/06 02:59 PM
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Ok *phew* I'm working extra hard on returning e-mails when I'm depressed...so I'm glad I responded you. And don't worry about responding to me....as long as you are taking care of you that's all that matters to me right now *hugs* I love you!
--------------------
Formerly known as Ruchie
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Sed rate normal, blood came back negative. I don't have any arthritic issues, but for a long time my hair fell out (before I gained weight to get to a "healthy" BMI of 23). I get skin rashes in the sun, but not at other times. And I have other fibro things going on, which could overlap with lupus symptoms-- sores on my mouth, gums and tongue, widespread pain and fatigue, plus major sleep problems.
I talked at length about getting tested with Mel last week. We were both shaken at your diagnosis. With the blood they drew at the MD free clinic 2 weeks ago they tested me, so when I asked if I had it, they replied with a definitive NO. I will definitely get myself tested if my symptoms change!!
How are you doing? Have they offered councelling/support activities? Thanks for hanging around here. Your presence would definitely be missed.
~nelly~
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Re:Update
#256501 - 04/05/06 11:37 AM
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michele
Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan
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Oh sweetie, I understand, I went through the same range of emotions with the RA and fibro dx!! At first I was just happy to have an answer to to know it wasn't all in my head!! Then, as you said, its like wow, I've got to deal with this FOREVER now!
I've tolerated the placquenil pretty well. Just a few days in the beginning that I felt "off" it didn't seem to upset my tummy too much it just made me feel unable to concentrate and a bit jumpy and edgy. Those things seemed to go away in 3 or 4 days. Remember though that it takes 3-6 months to really start working If you need some pain relief in the interm, ask about Indomethacin, its a prescription nsaid but its really helping me with the pain and swelling and hasn't been too hard on tummy although they did put me on previcid just in case!!
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Taking it one day at a time.....
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