Help! I'm Confused!

Welcome Greetings and Introductions
1

Dear Lupus Friends,

I am new to this site and I appreciate the support I see you sharing with everyone. Many years ago when I first became ill, it started with horrible sinus infections every three weeks…102-103 temps, etc. My allergist/immunologist thought I might have Wegener’s, but I was negative, as well as having a negative ANA. What I did have was a positive Rheumatoid Factor. I found a Rheumatologist and began making my way through all the RA drugs, which were all ineffective.

Fast forward two years. I was rushed to the hospital with bilateral pneumonia, bilateral pulmonary emboli, and a pulse ox of 54. When my labs came back, in addition to a positive RF, my ANA was positive at 1:480. I was immediately taken off Enbrel and Methotrexate, and spent six weeks in the hospital, three of that in ICUS on a ventilator.

My Rheumatologist put me on Imuran, Plaquenil, and Sulfasalazine. After dropping Sulfasalazine, I have been on Imuran and Plaquenil for the past ten years. Along the way, I started taking Reclast because I broke the same arm twice in a year.

Fast forward again to this summer. Because my old Rheumatologist stopped taking insurance, I have a new, very conscientious Rheumatologist who has started all my testing over again. I still have a strong positive RF, but now my ANA is negative. I’ve had MRI’s on both feet and ankles which had no evidence of rheumatoid changes. And now, in addition to being very anemic, my calcium is elevated and my gamma globulin is low. Is anyone else confused yet? The Rheumy says that Imuran is a Lupus drug and should have had very little impact on RA changes and that my disease is behaving like Lupus. (I have several Lupus markers…malar rash, sun-sensitivity, antiphospholipid syndrome, etc.)

Here are just a few of my questions:

Does anyone here have lupus and a negative ANA?
Has anyone else’s ANA been positive, then negative?
Do your joints hurt even though there are no changes on your x-rays?
Does anyone here take Reclast?
Does anyone know why my calcium would be elevated when the old Rheumy was giving me Reclast for osteoporosis? Doesn’t osteoporosis mean that you are losing calcium?
Does anyone know if long-term use of Imuran and Plaquenil can depress gamma globulin? The pathologist’s notes kinda freaked me out because it said that hypogammaglobulinemia could be a marker for multiple myeloma and/or pre-leukemia. So, does anyone here have depressed gamma globulin? I sure hope someone can help me be less nervous about this.

I appreciate anyone who struggles through this post and can answer any of my questions. If no one has any answers, I would certainly appreciate your positive thoughts and prayers.

Martha

2

Most of this is beyond me, but if temperature changes significantly affect your ankle pain, it might be Reynaud's. Apparently this is frequently seen in Lupus patients. My wife had always described it very much like the scene in Terminator where the robot walks through liquid nitrogen and its ankles start to crumble. I don't know about treatment for it, it seemed like she just added it to the list and worked on ignoring it, but maybe what she was taking for Lupus was also the treatment for Reynaud's.

3

I'm one of those with lupus and negative/positive ana, my joints hurts all the time caused by inflamation. interesting question about the gamma globulin, mine has run low in the past, never really gave it much thought. I hope you get some better answers. Will hold a good thoughts for you.

4

Yes it is fairly common for the ANA to become negative especially with treatment But you can still have aches and pains with a negative ANA A hallmark of lupus is exquisitely painful joints without xray findings- very frustrating trying to convince your doc you have a problem when nothing shows up. I have been on Reclast for years- the calcium loss is from the bones- your serum level of calcium, which is what is tested does not reflect on how well your bones are holding onto calcium,

Don't know about Imuran but apparently long term use of plaquenil can have a depressant effect on the bone marrow- something I am dealing with now Don't know about the depressed gamma globulin but recent research does show that the autoimmune diseases can have an increased incidence of various cancers

5

Thank you all SO much for your answers and suggestions. Again, I realize that my post is TMI. Bless each of you who slog through it. Poobie, thank you for your explanations. They made me feel more at ease.

6

Thank y'all for letting me join the group. I'm new to the lupus issues. My chief complaint is joint swelling with terrible pain. I have lots of weird things that happen to me and not sure if it is part of the process..perhaps you can help

Fatigue..it will hit so quickly I can hardly hold a fork to my mouth

Bone aching pain...like the bone is being stabbed or scrapped

Low grade fever

Visual disturbances

What do you think?

I'm on malaria meds for swelling as I can't take steroids.

This seemed to help in about a month to my relief

7

Martha

I don't have any real answers to your questions , just a firm belief that things will turn around for you. That's the thing about this sneaky trickster disease it is so hard to catch and treat. sometimes just treating the symptoms is the best we can do. I know you are scared and feeling like your body has betrayed you and in a way it has just know we are here for you. God Bless Julie .

8

Thank you, Julie. Over the past ten years I felt like I had been fairly stable. I’m not sure that’s exactly true, however, after seeing all the avenues my new Rheumy is exploring. She’s had me see my GP, a hematologist, (repeatedly,) a Pulmonologist, my dentist, my pain doctor,and my eye doctor. I’ve also had lots and lots of blood tests and four MRI’s. I even had a bladder infection without knowing. (See, I can ignore any kind of pain.) She was aghast when she realized that my old Rheumy did none of the testing or labs that should have been done after being on the same meds for so long. He was happy if I showed up every six months for prescription renewals. When I did go, he would ask me what I wanted to do. I kinda expected him to know what to do. I knew that it all should be done, but I just stuck my head in the sand because I was tired of people poking and prodding me. She says that there has been a lot of progress over the last ten years. I guess my point is that if there is anyone else out there who is avoiding new rounds of testing, give it a shot. I learned some new things. Maybe you will, too. LOL



Julie said:

Martha

I don’t have any real answers to your questions , just a firm belief that things will turn around for you. That’s the thing about this sneaky trickster disease it is so hard to catch and treat. sometimes just treating the symptoms is the best we can do. I know you are scared and feeling like your body has betrayed you and in a way it has just know we are here for you. God Bless Julie .