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Posted 7/3/2008 2:03 PM (GMT 0)
Hi everyone I hate to gross, but I have a question.  I have only been having problems for a little more than a year.  I guess you could say I'm in the process of getting sick.  I thought that by getting in to the Rheumy soonest that this could treated more effectively, the only thing I've found is that finding a DX is more difficult.  Anyway, the gross part is that every single month I get my period it seems like whatever AI I have surges forward and I get sicker.  It does not improve when my cycle is complete.  I just keep getting worse.  It makes me want to have a hysterectomy and hope maybe it all goes away, but I know that that will never happen.  Anyone else have this type of experience?  Anyone else have symptoms that increase with each menstral cycle?  Anyone tried any kind of hormone therapy? and last but not least, Anyone no if any research has been done in the relationship between females hormones and AI's?  I know that's a lot of questions but I'm getting really scared.  I've gone from being strong and healthy to barely leaving my house in a span of just over a year.  Thanks so much,  God Bless you all.
Posted 7/3/2008 2:16 PM (GMT 0)
(((((((((( Puccini ))))))))) That IS really scary! I think most, if not all, of us are worse during our period. That is because inflammation in our body, in general, increases. So . . . those with Chron's are worse, those with arthritis are worse, etc. But . . . to STAY worse and accelerat the disease each month is really scary. There are lots of studies that show increased inflammation during the monthly cycle . . . but I haven't seen this. I'll see if I can find one by Dr. Graham Hughes (THE lupus guy). I think there is one in "Lupus Resources" . . . link in my signature. Blessings!
Posted 7/3/2008 2:24 PM (GMT 0)
http://www.lupus-support.org.uk/Crit.htm The above link has a tiny bit on monthly flares. Dr. Hughes says "All rheumatic diseases are clinically influenced by the menstrual cycle, and none more so than lupus. Some patients are almost immobilised during the 2 to 3 days preceding menstruation. It is my practice in some cases, to alter the dose of medication during this time." Hmmmmm that might be your key . . . if your doctor would allow you to increase your meds for certain days. Some of those taking pred do increase their dose for stressful times (dental work, etc.). I hope some of the others have some help for you. Blessings
Posted 7/3/2008 2:41 PM (GMT 0)
Jennifer, I can always count on a flare up of my symptoms the week before and for the first few days of my menstrual cycle, but then I get some relief. I completely agree with that quote that Rosie posted from Dr. Hughes. It must be so frustrating to not get any relief though. I remember the frustration of being in diagnosis limbo and getting sicker and sicker and my rheumy not really doing anything about it. I finally switched rheumies and found a better one on the recommendation from someone on this forum. Hang in there and I hope your doc can figure out something to give you so you get some relief. It's a terrible feeling to be getting sicker and sicker and to feel like nothing is helping.
Posted 7/3/2008 3:04 PM (GMT 0)
((((( Jennifer )))))) I usually flare around my cycle too but like the others it passes. The only time since I've been sick that I've continually gone down hill was while I was in the dx process and before I got on the right combo of meds. You are on 2 really good meds for lupus but it sounds like your disease is NOT under control, your doctor may need to modify your meds. It's very important that we communicate all of our symptoms to our doctors, be honest with them and let them know how you are really feeling. If he/she does not listen or attempt to help you get better then I agree with Hippi it may be time to move on to another rheumy, I went to 2 rheumy's before finding mine. I have to drive about 45 min and I'm usually there for a couple of hours but it's totally worth it.

I sure hope you get some relief soon, we know what you are going through and are here for you. Take care
Posted 7/3/2008 4:04 PM (GMT 0)
Thank you all for your imput, it may be time for a new Rheumy, I see mine next Wed, and I'll let everyone know what happens. As it is, I live in a very rural area in the North Georgia Mountains, I drive an hour and 45 min to see mine as it is and anyone else is going to be that much or more. Anyone linving in North GA that has a good Rheumy, who is takinig new patients and will take someone who is uninsured, self-pay and not made of money,
please let me know. Thanks again for all your thoughts, prayers and hugs. God Bless
Posted 7/3/2008 4:13 PM (GMT 0)
((((Jennifer))))

 

I am exactly in the same place you are right now.  I HATE being a woman sometimes.... My periods make me so physically ill I can't leave the house for 5 or 6 days during it.  The flow is so heavy and the cramps are so bad, I just want to cry.....This is really bad because I'm a wedding photographer!  If I have a wedding and I feel like this I have to suck it up and go.  It's a nightmare...

 

I'm seeing my gyno on the 15th.  I'm scheduling an endometrial ablation for the fall. I'd LOVE, LOVE, LOVE to have a hysterectomy too, but I'm on blood thinners and my lupus is a bit active right now, so the risks are too high.  If the ablation works, great!! If it doesn't, then I'll bite the bullet and get a hysterectomy.

 

I know exactly what you're going through.  For me, the really bad pain and sickness ends when my period is done, but it all starts back up again about 10 days later.  I have a very lengthy PMS cycle.  It sucks!!

 

So you're not alone in this at all Jennifer.  Menstrual issues are extremely common in AI diseases. I actually got a lot of great information about this by seeing a high risk obgyn.  She's awesome and has many lupus patients so she knows what she's talking about.  This might be a good option for you too.  Get a referal to a high risk gynocologist.  In the meantime, you have to get your disease under control.  You might see some vast improvements with your period once you're disease is controlled.

 

Lots of encouragement,

Ginny

Posted 7/3/2008 6:21 PM (GMT 0)
Jennifer, There is a link in my signature "Lupus Chapter Locater". Click on that link, find your nearest chapter (may be a bit of a distance) and call them or email them and ask for a referral to a rheumy in your area. I found two great rheumy's that way. If you are driving THAT far, you want to make sure the rheumy you use is really focused on lupus. Not all are. Its a huge topic and it takes a real desire to work on put all the little pieces together to determine a good mix of meds and treatment. Keep us posted about your next appointment. Make sure to take the time to prepare well for that appointment. Type out a symptom list for the doctor and include your questions and what you expect to get from that visit. These docs can read a list a lot faster than listening to us try to remember the things that have happened since last appointment . . . and when we are talking, they often interrupt. The list gets it all out. There is a post about the list in "lupus resources" . . . link in my signature. Blessings!
Posted 7/3/2008 6:38 PM (GMT 0)
Jennifer, I live in N GA too. My rheumy is down by Piedmont Hospital in Atlanta, her name is Dr. Kimberly Wilson. She is wonderful. She is on the list that Rosie mentioned, if you can't find it let me know and I will be glad to give it to you.
Posted 7/5/2008 1:01 PM (GMT 0)
I'm glad I read this post as I am useless for a several days every month too.  I think that my cramps are getting worse each cycle.  Last month, I was in so much pain.  I was running to the bathroom all night then at one point, I also felt like I was going to faint.  I was literally frantic - not knowing what to do...

I'm wondering why my rheumy didn't tell me that Lupus can affect the menstrual cycle??? I know I've mentioned the intensity of pain to her but I am definitely going to do a little research on the subject. 

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