Still having issues- please help

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alli sunshine
Regular Member

Date Joined May 2009
Total Posts : 40
   Posted 6/2/2010 7:50 PM (GMT -6)   
I have been in and out here, and am coming here because I am at the end of my rope. Last year at this time, I had a positive ANA test (1:640), joint pain and swelling, have Raynaud's, and have a strong family history of RA. Saw a rheumy. He did DNA testing which came back negative. He said I didn't have anything right now, but might be brewing something. Also have had chronic anemia and underwent 10 IV iron treatments this spring. I have seen a neurologist and cardiologist this spring as well, with no results too far out of normal.

Here I am now with the following stuff added- In the past 3 months, I have had increasing pain in my right hip and now some in my left. It is to the point where I am in a lot of pain throughout the day and especially in the evening. This scares the crud out of me, because 2 years ago a friend of mine started having hip pain. It turned out to be metastatic lung cancer (she was not a smoker). She passed away last summer. I know it is unlikely to be cancer but it is in the back of my mind, though I am more wondering if it is related to some autoimmune issue. I have also been experiencing a great deal of joint pain in my knees and feet. Additionally, I had a uterine ablation last summer and hadn't had a period since. However, in the last 3 months also, I have started having 5-6 days of bleeding every 2 weeks or so. I have an appt. with my gp for my hip next week and have an ultrasound scheduled with my gyn on the 14th.

I am thinking of getting a second opinion from another rheumy. I am soooo tired of being in pain, which I know many of you relate to.

Can anyone tell me of similar experiences with hip pain? Can autoimmune diseases affect your uterus or cycle?

I feel like I come here and complain a lot, for which I am sorry. I just don't feel that my friends understand. Thank you for any thoughts.

Veteran Member

Date Joined Feb 2003
Total Posts : 5514
   Posted 6/2/2010 10:04 PM (GMT -6)   
Hi Alli,

Oh yes, autoimmunity can cause a lot of issues with our periods. I had a hysterectomy 2 years ago to rid me of the curse. LOL. Ablations don''t always work 100%. The uterine tissue can grow back and start periods again. That's why I went the hyster route. I didn't want to deal with the problems down the road.

Hip issues are very common too. Any joint can be affected by Lupus. I have a lot of hip and lower back pain. It's really hard to manage sometimes. I find that Diclofenac cream works very well. It's 10% cortisone cream (prescription only). I rub it on where the pain is and it goes away in relatively short order.

If you're doubting your current rheumy, definitely get a second opinion, or third, fourth, whatever it takes. Your ANA is a fairly high positive. With your symptoms added to that, I don't know why your rheumy isn't going full bore into this. The anti DNA test is not conclusive to a diagnosis. It's part of the blood work up, but lots of Lupus patients have a negative DNA. I think you should see someone else wink

Keep us posted okay!
Moderator of Lupus and Fibromyalgia forums

36 years old, diagnosed in 2000. SLE, Fibromyalgia, APS, Sjogrens, Raynauds, Thrombocytopenia, Vasculitis, Stroke – 2002, Bilateral sacroilitis, Clinical Depression/PTSD/Anxiety/panic disorder, Optic Neuritis. Prednisone, Imuran, Plaquenil, Coumadin, Cozaar, Zoloft, Didrocal, Seroquel

Regular Member

Date Joined Apr 2009
Total Posts : 122
   Posted 6/3/2010 9:07 AM (GMT -6)   
Hey there Alli,
You didn't say if or what you are taking to help alleviate any of the pain that you have right now.  I'm assuming you are, but I have found that most over the counter meds don't do much for me, so that is why I take darvocet periodically to take the edge off.  I hate taking all the drugs daily to be functional, but I also feel that no one deserves to be in pain on a daily basis.  Not only is it hard physically, but mentally after awhile.   Have you talked to your current rhuemy about the pain at all?  If not, you need to call them asap until you can get into another rhuemy if that is the path you want to take.  I also use the voltaren cream that Ginny mentioned.  It can really be a great help on many days in between popping the pain meds.  As far as the hormones, that was a definite issue for me up to a year ago.  My ob/gyn had me on the pill for years to help me stay regulated and also it is proven that you need the estrogen to protect your bones but then I started signs of perimenopause and she felt is was best to put me on cenestin and prometrium daily.  I don't have any periods now and notice a big difference as to how I feel with not having a cycle.  Everytime I went off the pill for the 4th week and had a period my body would flare.  My rhuemy told me that the immune system can act up with the fluctuation of the hormones and start to attack the cells again.  Anyways, hope this helps somewhat.
Hugs and Angels,
DX - sle and carpal tunnel
RX - plaquenil, prednisone, lisiniprol, folic acid, darvocet as needed, etolodac, hormones and vitamins

Veteran Member

Date Joined Jun 2008
Total Posts : 1470
   Posted 6/3/2010 10:49 AM (GMT -6)   
Hey alli! I would deffinatly get a 2nd opinion from another rhuemy! I am sorry you are havnig so much trouble and I hope that you can get some relief from the pain you are in. Sending positive hugs your way!

Veteran Member

Date Joined Sep 2005
Total Posts : 2573
   Posted 6/3/2010 4:50 PM (GMT -6)   
A second opinion is always worth the trouble as long as it is a lupus specialist and not just a regular old rheumy who specializes in old people diseases and arthritis. I would definately bring up the pain to SOMEONE. I am considering have ablation done and later a hysterectomy does it hurt much?
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, cozar
"Those who dream by night in the dusty recesses of their minds wake in the day to find that it was vanity: but the dreamers of the day are dangerous men, for they may act their dreams with open eyes, to make it possible." T. E. Lawrence

alli sunshine
Regular Member

Date Joined May 2009
Total Posts : 40
   Posted 6/3/2010 9:42 PM (GMT -6)   
Red Rose- The ablation was the best thing I have done in a long, long time. My doc uses general anesthesia to do it, so I was out. Some do not use general, only local. I would not recommend that. I was down for 24 hours or so and on vicodin, and then limited on what I could do for about 3-4 more days. I had minimal bleeding from the procedure and haven't had a "real" period since. Mine were so very bad, so this has been a blessing.

If you have any more questions about it, let me know.
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