Hi there, A while back I went to my PCP because I was having muscle pain up the back of my legs and in my hips that just would not go away and I was so tired all of the time. I am very active I run and play soccer and I am 42 years young, a wife and mother of two boys (12 & 9 years old) and i work full time out of the house so I figured I just needed to slow down. Even as I cut stuff out things did not get better (felt this way since last november). My PCP drew blood and a few days later called and said my rheumatoid factor was 95 and refered me to a rheumatoligist. I went to see the rhuemy and she did a ton of xrays and pulled more blood. Later she said my sed rate was at 30 which is a little high, still showed a positive RF and I have a slightly elevated ANA. She has me taking naproxsen(?) twice a day and a muscle relaxer at night. I go back on the 16th but have to have my blood drawn before that. The blood slip that she gave me is asking for , CBC with diff, RF, ANA, Anti-DNA, heptic function test, BUN, LV, ESR. So I know what the ESR, ANA and RF are for. Do you guys think she is looking for Lupus with these tests? When I left her office last time she basicaly said I dont want to put a diagnosis on you yet because i dont want to over treat you but I dont want to under treat you either, I need more information. She wanted me to make sure I was getting plenty of rest and to stay out of the sun. After searching some of this stuff I am worrying myself sick. I have been feeling better with more rest, my pain is still here but the tiredness is better. I went for a walk one day and got a kind of weird rash on my chest and back, it was like little tiny water blisters, I swear I was only out in the sun for 15 mins unprotected. It stuck around for about a week and the blisters went away but my skin looks like it is kind of permentaly changed in those areas. Is this photosensitivty? Im am just trying to get prepared for my next apointment so i can ask good questions and know what to do for myself. Also to know if the doc is doing what needs to be done too.
Anyone have any adivce. I would love to hear it.
It does look to me as if she suspects Lupus, or more likely Rhupus. I say Rhupus because it is a condition where a person tests positive for rhuematoid factor and also has Lupus. The two diseases overlap. What you are describing does sound like a photosensitive reaction, there are several different types of rashes a person with Lupus can get from the sun.
The good news is, your Dr. seems to be competent, and is being very careful about getting a correct/exact diagnosis. I am sorry that you are having to deal with all of this, but, it sounds to me like your Dr. is on the right path. Hopefully these new tests will give her all of the information she needs to make a solid diagnosis and set a course of treatment for you. Proper treatment can make a world of difference
Thanks, That does make me feel much better. It seems from reading the posts that finding a doc who is copetent is half of the battle. I have a friend who is a drup rep who specilizes in rheumatology drugs and she wanted me to go see a certian doc but I feel like this doc I trying and I hope doing everything she can so I thought I would stick here. I will keep his name just in case though.
Rhupus is scary sounding. Do they use the same drugs to treat both RA and Lupus? This might be a stupid question but do you think that if the anti-DNA comes back indicating Lupus she would diagnose me at that time or will she wait until there are more symptoms? Should I be concerned if it comes back elevated and she dosent start me on something? If she does start me on somethign should I be concerned because I am not showing any mores symptoms and I am taking these heavy duty meds? I am just so nervous about what the future will hold. I have a job that I need and an opossing mortgage and two children. What if I cant work or climb the stairs in my house or help my husband with the yard work? This is scary, scary stuff.
This Lupus thing scares me to death as does RA. My coworker has RA and she has been to he** with it. She is at the point where she can barley walk, she is in extreme pain. She is scared of the meds and wont take anything. It has been 2 years and she has only gotten worse. This week she finally gave up and started with the new rheumy and started meds, thank goodness. I just hope to see her improve.
I know I am rambeling, thanks for listening. I dont really have anyone to bounce things off of. I havent told anyone at work what is going on and my husband is just plain worried so I dont like to talk with him much about it.
Hi Brenda, I totally understand how you're feeling. I've been feeling the same way for about 5 weeks, and i have this headache everyday that just wont go away, more like a tension headache. I think your doctor is on the right path ordering all those labs for you. I absolutely believe that if your labs come back positive even if you dont have anymore symptoms you should be started on a treatment. From what i've read on Lupus I hear it's pretty hard to diagnose, not everyone has the same symptoms, and not everyone's labs are the same. I wish you the best outcome, God bless u!
I will try to answer your questions as best I can, please remember that I'm only a patient, and drawing on what I have read and experienced
From what I've read Rhupus is treated with drugs that are usefull in both diseases, plaquenil, prednisone, NSAIDS and Methotrexate to name a few.
If the anti-dsdna comes back positive, I think she would make a diagnosis then, anti-dsdna being positive is a real clincher for Lupus. If it isn't positive she may want to take a wait and see approach, and re-check it periodically.
I would be concerned if the results are positive and she doesn't start you on something. In fact, were it me, I would flat out ask her about Plaquenil. If she didn't take action, I would use the number your friend gave you for the other rhuemy.........you deserve treatment and relief from your symptoms.
If the results aren't positive and she starts you on something, if the something is Plaquenil, Take it! It has very few side effects, and is safer than other drugs including NSAIDS. That one little pill can help with fatigue, joint pain, sun sensitivity. You won't notice a difference though for about 6-8 months, it has to build up in your system to take effect. It is not a "heavy duty" drug. If she offers you a dose pack of steroids, it may be worth it to take it and see if they work for you. If they do, or don't, it will be a clue to your Dr. as to what is going on. I wouldn't go on them long term though without a firm diagnosis, and good reason to, i.e. organ involvement.
Hopefully, treatment will give you a lot of relief and you will be able to do the things you need to for a long,long time. If the absolute worst were to happen and you were to be disabled, then, you cross that bridge when you get to it. You will adapt and learn to do things differently, you re-prioritize, and, accept/ask for help as needed. It is far too early to be worrying about things that haven't and may never happen
As for your co-worker, watching her ordeal must have scared the bejeebers out of you........but, there is one important thing to learn from her experience: Where these two diseases are concerned, the disease itself poses more risk than the meds-take the meds. With RA, you have to get ahead of it with the meds because once the damage is done, it's done. The same with Lyupus organ and cns involvement. I hope your friend does improve soon. You however, are going to come out better than her in all likelyhood because you are seeking treatment, and will actually take the meds
This board is a great place to meet people in similar situations, and you can gain a lot of knowledge and different perspectives As for your husband, maybe you could take him to a Drs. appointment with you It may help him understand and put his mind at ease. Take Care
Thank you so much for the info. I have my next apointment on June 16th. I am getting my blood drawn today and she should have the results. Glad to hear that some of these drugs are not as scary as they are made out to be. I had alwyas said that I would handle things differently than my co-worker if i were in the same boat. Kind of ironic huh? It seems I may just be putting that statement to the test. You know she has messed around without taking the drugs for 2 years since diagnosis (should have been diagnosed before that if she would have gotten herself to the doctor) and I am so afraid that she already has permanate damage done to her hands and feet.
You know the strange thing about my symptoms is that I do not have joint pain, just muscle pain and mostly in my legs and butt. It seems everything I read indicates joint pain. I know that is what my rheumy is looking for. If i had that it would probably sinch up something for her. I dont feel miserable either but I know I dont feel right either. It is tough right now because all kinds of summer plans are being made and I am acting just like I always have "sure I can do this and sure I can do that" when I am not really sure at all. How do you all deal with the uncertianty of it?
What do you thinks the chances of me having muscle pain, high rheumatoid factor, high sed rate and a slightly elevated ANA and not having something Maybe just hopeful thinking but wondering if this could all just be a fluke.
Peacequeen, There are quite a few "close cousins". In his hardcover, Dr. Daniel Wallace discusses lupus, including various "subsets"; also "close cousins" and crossovers (rhupus being one). Also, how symptoms & tests results vary, how drs. sort thru everything to arrive at a Dx, etc. FYI, most libraries have his book & I really recommend that you borrow it. Dr. Robert Lahita is another excellent author you could borrow.
Hoping you get more clarity soon, Vee
P.S. HANG IN THERE!