New lab work

[Trish10]

I posted a couple weeks ago with a question regarding C3, C4 levels. Thank you for the responses. From the suggestions given at my last appt. with my rheumatologist he decided to run a complete panel for everything rheum autoimmune related.

I was having so much pain a couple weeks ago that I increased my prednisone by 5 mg. to 20 mg day. It made quite a difference. I have been seeing this new doctor for aboout 6 months, and he says I am a "puzzle". He has been having me come in monthly. It was actually my suggestion to do the blood work, as he keeps trying things without any solid data to fall back on.

I return in 3 weeks. He has talked of Imuran, but I would prefer to stay away from that if I can. Right now the prednisone is helping quite a bit, but he says he doesn't want me on it for too long. But if the alternative is not being able to function and feeling awful, I would rather stay on it. I do not like some of the side effects, but I will live with it.

Thanks again for the suggestions, and better questions to ask my doctor.

[Lily]

Hi,

I'm glad he's running more tests, its a shame that you have had to be the one to suggest that. Is he also running urinalysis, its quite common with Anti-dsDNA antibodies that you have and low complements for kidney problems to occur.

I'd have to disagree about preferring to stay on Prednisone long term as opposed to either being able to reduce the dose or go off it completely if Imuran would help you. Its definitely worth a shot and the long term effects of Prednisone may not bother you now, but if you should end up with osteoporosis, diabetes or any of the other things that it can bring then you may wish you had given the Imuran a shot. Your doc is wise to advise not staying on it long term.

http://www.thelupussite.com/forum/index.php?showtopic=16674

Hope your tests turn out alright and let us know how it goes.

love
Lily

[Trish10]

Thank you Lily for your suggestions. I read the attached link that you provided. I do take daily calcium supplements. And do have periodic bone density tests. So far, they are satisfied with the results of the bone density results.
I guess I see Imuran as a powerful drug and it scares me to take it. I could have misconceptions that need to be cleared up. I have taken methotrexate a long time ago and it did not seem to do anything. Maybe another try with that would do something.
Anyway, I do have to go back in 3 weeks for a re-eval with the lab work results. I hopeful that we can come up with a course of tretment that will keep my pain level to a minimum and allow me to function.
I have a fairly high pressure job, which I love, but I need to be able to feel good in order to do it.
After having this for ~10 years, I get so tired of living with it everyday. I just wish I could make it go away so I can have my life back.
Sorry, got off on a tangent there.
Thanks,
Trish

[Lily]

Hi Trish,

Yes I fully understand you wanting to make this go away, we all feel like that believe me (((((Trish)))) And if you are working and trying to carry out a stressful job then yes you need to be feeling at your best!

Imuran is a strong medication as are any of the immunosuppressants, but Pred is the drug we and our doctors love to hate as well. Symptom wise it gives us great relief, but that can come at a price longterm. However some need it to function and some cant take the Immunosuppressants for one reason or another, although with careful build up and reaching your maintainence level they are very helpful for controlling disease activity and preventing further involvement. Some need both, in that we all differ.

If its mainly joint pain then Methotrexate may be worth revisiting, thats its forte after all, Imuran is used more for other organ threatening disease on the whole or where Plaq is not enough on its own. I've never been on Metho but like all our drugs it takes a bit of fiddling to find our right dosage. And things could be different for you this time around with it too. Your Plaquenil has had time to do its job? I presume and the Metho benefits may become more obvious on a second try.

I guess you have considered some of the pain to be from weaning pred because that can certainly happen? Much more noticeable if someone also has Fibromyalgia. We do face a period of adjustment when lowering dosages, regardless. Some mistakenly think that it will last forever but usually as the body adjusts lower dosages are fine and the increased pain at changeover does go. But I'm only throwing out a suggestion there, not sure how your problems manifested so may be talking through my hat style_emoticons/<#EMO_DIR#>/laugh.gif

Whatever you decide you and you alone need to be comfortable with, just thought I'd throw my 2 cents worth in because yes today is all important for us but we do need to look at the big picture too and the best way to manage our diseases in the long term.

Good luck with your decision, but talk extensively with your doc you have to feel right about it.

love
Lily

[Trish10]

Thanks Lily,
I think I will suggest revisiting methotrexate at my next visit as it has been years since I tried it. I do also have fibromyalgia and my doc sometimes isn't sure which one is acting up, however, my C3, C4 compliments have been low for 6-8 months, which I believe is more related to the Lupus. I also have localized Scleroderma which seems to be spreading, no comment from the doc on that either when I tell him.
We'll see what this new lab work reveals. I will be doing more research, again, before my next visit to discuss things more intelligently.
Thanks again.

[Lily]

Hi,

Yes its often hard to tell some people say if its Fibro pain or lupie pain. I dont have Fibro thank goodness but I do get a lot of muscle pain and arthralgia. For that I have to take NSAIDS and also codeine and a muscle relaxer, the muscle relaxer is especially helpful because as part of my CNS stuff I have a movement disorder called dystonia, it helps that a lot.

The C3 & C4 levels are often indicative of more active disease and was the main reason they put me on Imuran, that and the fact my kidneys decided they would permanently play up instead of every now and then. Its also helped my CNS Vasculitis I feel and I'm not sure what my readings are now on those tests but I am certainly feeling better than I was.

Has he checked your urinalysis lately, that might be a good idea as well as those blood tests. Good luck with the results btw style_emoticons/<#EMO_DIR#>/foryou.gif

love
Lily

[Trish10]

Yes, a UA is included in the labs I will be having done. The last UA I had showed +3 protein. I then did a 24 hour collection, which came back fine he said. Over the years, I have had protein in the urine sporadically, he's never quite sure why as the 24 hour collections have been fine.

I guess nothing is simple with this disease.

Trish

[Lily]

Hi,

<div class='quotetop'>QUOTE</div><div class='quotemain'>I guess nothing is simple with this disease.
[/b][/quote]

Never were truer words spoken !! style_emoticons/<#EMO_DIR#>/wink.gif

love
Lily