Two Rheumys .. First, the Hare ... saw me for 5 minutes, took one look at my psoriasis, swollen hands and nails and said I have PsA and wants to start me on Humira right away - told me the MTX was killing me.
Secondly, the Tortoise (who I saw originally and saw again today). I finally asked him what he thought I had ... Definitely R/A (not P/A, I asked?) - No - not typical of P/A even with the nails, skin issues, etc. Got new labs back today, too. In addition to kidney issues (proteinuria), I now have elevated liver enzymes, elevated WBC, elevated neutrophils. I asked if these are symptomatic of R/A - nope. Due to infections I had to go off MTX 6 weeks ago so the liver enzymes cannot be that (they were fine last labs, as was WBC).. in process of doing another 24 hour urine to see how my kidneys are doing, as well. Definitely does not want to start me back on the MTX since it is doing much more harm than good ... wants to start me on Plaquenil ... gave me a pamphlet to read and we will start it in three weeks. Also, gave me Lyrica in hopes that the nighttime pain subsists so I can get a good nights sleep. I asked him if the liver would be indicative of lupus since I know this is what he is waiting for, especially with the kidney involvement (still negative ANA). all he said was the Plaquenil will be good for both R/A and Lupus... That's my Tortoise!! To be honest, at least it is something. So, I am open to learning about Plaquenil - everything I have read so far seems it is really a calm drug compared to MTX or Injectibles ... Just praying it helps the inflammation in my spine, as well.
Does the increase in WBC, liver enzymes, Neutrophils sound like lupus (along with kidney involvement)? Or sound like something else? This all started 8-10 years ago (early 40s) and I ignored it. I guess I am too old (now 52) to be diagnosed with Lupus, correct? I certainly don't want it but if I have it I want to know I have it. Thank you for listening :).
When I first had a doctor that finally would listen she said psoriatic arthritis because of the exact same issues you have. So she started to treat it with Orencia, it did not do much help. Then as time passed and more tests she upgraded me to psoriasis with RA then as more issues and infections and more and more tests and she saw how sick I got and flares came up she finally suspected lupus. Then when she finally had to order a brain spect and verified abnormal brain activity it verified CNS lupus. So psoriasis is where I started but it is for sure not all I have, I wish! But it helps to start somewhere good luck!
Thank you, Michela, for your response. I should have paid more attention years ago when things really started .. been brave like you. Part of me, I think, really did not want to know and as long as I could push and work and get those kids raised (with time off here and there, downing pain meds), I was OK. I am on the right track now and the answers are coming ... God bless you, sweetie! It sounds like you have a great doctor :).
You definitely aren't too old to be diagnosed with Lupus. Sounds like whatever you have, you've had for quite some time. I am in my 50s and the doctors aren't sure what I have either. You are right about plaquenil being very mild as far as side effects. It is not completely devoid of them, but much easier on your body than some others. It will take at least 3 months but up to 6 months to kick in. It took me 6 months. It does help but doesn't completely alleviate the symptoms. In any case, I hope the treatment helps! Welcome!
HeyMJ - Thank you... Tried the Lyrica last night and it is definitely a no go.. did not help the pain and felt like I was loopy all night (again up all night!) ... anyway, it seemed to finally leave me 22 hours later so I could take my regular meds :). Looking forward to the Plaquenil since I definitely cannot go back on the MTX due to infections and I think after looking at what doctor ordered, he thinks the elevated liver enzymes are due to the MTX, as well, and the high WBC to the infections. Looking forward to finishing my next 24 hour urine this week to see how my kidneys are fairing :). So, you are my age and you are where I am... Thank you so much for taking the time to write ... Hugs, Dee
52 is not too old to be diagnosed with lupus. I was diagnosed last year and I am 72/ Probably not what you wanted to hear . I guess it's rare but that is just another wacky thing with Lupus. I am not all that sick. mouth sores and the hair loss has gone away with the plaqueil. The sun sensivity is not fun, but the fatigue is the worst. Today was the worst day I've had. I'm so glad I have the luxury of being able to rest A LOT. I have a small business = I do bridal alterations so I can pace myself. My husband is very helpful around the house. I guess one of the side effects with plaquenil is glaucoma. I had that before I started on it.
If you have it you may have had it for awhile and was not diagnosed/ Good luck to you. We're here for each other/
Thank you, Freightliner. I am hoping for good things with the Plaquenil, as well :). It is great to have this site to be able to discuss these things. Hugs to you! Dee
My rheumy told me it is not possible to have both PsA and Lupus. I did research and it says that both have similar symptoms but they do not place themselves in a position saying it is impossible to occur. I am between them both, too.
Tests have confirmed my Coutaneous Lupus and PsA, no doubt about it. My liver enzymes are elevated, too.
Very interesting, Latina... Do you also have Parathesias (facial nerve pain) and elevated kidney proteins? I have looked at pictures of Cutaneous Lupus and it looks similar to some areas near my psoriasis (silvery patchy circles). Do you know what causes the liver enzymes to increase? He did not seem to want to talk about it so I thought it was the MTX even though I was not on it long. Definitely kidney issues, though. The Rhuemy I am staying with says PsA is typically only on one side (is yours?) - mine is symmetrical on both sides - he says that is R/A more than likely ... Oh well, starting on the Plaquenil and getting off the MTX is a start for me and I could not be happier, although it treats R/A and Lupus lol ... hoping not PsA now. Something is better than nothing and so many issues arose on the MTX, I was off it more than I was on it lol.
I am 52 and they can't decide Lupus or what. ?????? Leaning towards Lupus. what kind of dx is that. Certainly not worth 40 .00 co-pay... So had lots of blood tests, my spine has osteo on it but not enough to do surgery on for now. Changes have occurred since 2010, Bone movement. according to the neuro surgeon.Pain in legs and bottoms of feet. I am so tired of all of this. But I need to start learning how to not dwell on it and move on. (hard to do) Trying to enjoy life. (TRYING) very hard sometimes. I fel sometimes as though I am in my 80's what to do.????? I have bulging disc disease which is common. ANd lord what I wouldn't give for a good nights sleep......
Well I am done for now. Oh I forgot the altered ana pos/neg/ liver enzymes elevated. Why is this so hard for docs to decide on. ?I probably will never know.
All my fellow friends have a good weekend, and try to enjoy life the best way we can . We are a work in progress, trying day by day....... Love JR
JR You are not alone here ... I finally pushed and asked him like I said. My back is beyond gone .. no surgery option and first film done on it at age 32 was already really bad .. ortho said no way am I a candidate for surgery (now includes entire spine, not just lumbar). Oh well .. like you, I just want to know what it is so we can get on with it, treat it, and feel better and do the things our friends do. I get so jealous sometimes when my friends have all this energy, go all these places and if my husband doesn't get dressed quick enough (lol) I am down for the count ... hate being this tired/fatigued. So we are together in this process. The closest my doc came to saying "lupus" was that Plaquenil treats R/A and Lupus. But I still have the parathesias (nerve pain in face) which I am not sure is related to Lupus? I will start a discussion and see .. that is what I like about this site :). Hugs, Dee
My psoriasis is on the finger and toe nails and it's secondary to PsA, which has disfigured my hands and toes. The use of my hands diminishes rapidly. It is assymetrical in some areas and symetrical in others. My sister has RA and her knuckles and not her fingers seem the affected area. We both have it everywhere in the body as well. Her internal organs are not affected but mine are.
No, thank God I do not Parathesias, and I don't want it either. Got enough in my bag.
The liver specialist says my liver enzymes are elevated due to liver damage because of my high levels of blood pressure, glucose, cholesterol, and triglycerides. What's funny is that I never had any problem with either before this ailment showed up. ????
Up to now, my kidneys are okay. Dr. says that when my kidneys go, so will I, if my heart can handle it. Many PsA patients die of a heart attack. An ER dr. recently told me I was a heart attack/stroke ticking bomb. In my case, I'm trying for the liver or pancreas not to kill me first. I insist on living alone but my family calls me every day to make sure I made it through another day. Hey, the way I see it, we all have to go sometime! No one leaves this place alive! I'm just trying to leave my footsteps on the sand before I go so others know I was here.
Tootles said:
Very interesting, Latina... Do you also have Parathesias (facial nerve pain) and elevated kidney proteins? I have looked at pictures of Cutaneous Lupus and it looks similar to some areas near my psoriasis (silvery patchy circles). Do you know what causes the liver enzymes to increase? He did not seem to want to talk about it so I thought it was the MTX even though I was not on it long. Definitely kidney issues, though. The Rhuemy I am staying with says PsA is typically only on one side (is yours?) - mine is symmetrical on both sides - he says that is R/A more than likely ... Oh well, starting on the Plaquenil and getting off the MTX is a start for me and I could not be happier, although it treats R/A and Lupus lol ... hoping not PsA now. Something is better than nothing and so many issues arose on the MTX, I was off it more than I was on it lol.
but it is for sure not all I have, I wish! But it helps to start somewhere