I appreciate that dr. R Swamy replied and I'm not posting the following to be in anyway against him and his dedicated help to this site but more so from the poll question posted. Most people in the medical field are lucky to have a full day of educating materiel on lupus. It is actually something very briefly covered since there is so much they have to learn about everything in general. I believe they were trying to pass that a little more training and detail go into lupus and other autoimmune diseases. For the students that may have skip class that 1 day is what really scares me but also reminds me to educate myself to be able to talk to my doctors at a similar level and at times even get a more genuine honest answers and solutions from them. I don't mean for this to be hurting in any way but only hopefully helpful.View Thread
I've been on Benlysta for a year. I've notice it does help with my chronic pain in my leg due to AVM's vascular malformation and due to the extra unneeded veins growing they seem to press up against nerves causing chronic pain but I think it's also due to inflammation from autoimmune system that likes to over produce. In my case it reduces the pain sometimes for part of the month but never takes away my pain completely and or the whole time. The closer I'm due for my next treatment it seems I can tell the difference of inflammation coming back and pain increase and or having to pop more pain pills. Now my pain levels are well over 10 normally and without pain meds. With pain meds my levels would still be between 5-8 and now I get times of maybe even being down to 2. Another example of temparary improvements. I was bed ridden with pain and variuos symptoms a year and a half ago and or dependent on wheelchair/electric scooter where as I may walk short distances with my cane sometimes now. Hope this helps!View Thread
Hi weavebee Lisa! Yes long time. I got to the point of receiving home care nurses for treatement, labs and PT for over a year I want to say almost 2years and that was closed out only a couple months ago. I think my body has finally flushed out most of the chemo over time, therefore helps feel a little better. Plus Benlysta seems to give me a boost for the 1st couple weeks then I'm feeling back to the dragging, achy etc.... Lupie! I wish it would last or I could get it twice a month. At least it seems to be helping and doing a little better then any of the other drugs. I'm actually going to visit family again in Ohio. I fly up later today. I'm excited about that!
Responding to LupyLisa; we definatly tend to learn how to listen to our bodies best so if the 2000 dose is what you feel comfortable with then do it and more power to you in hopes it works right for you. I'd always been given the 500 pill forms but recently found out they come in 250 capsules also. I'm trying the capsules now to see if they'll absorb better and then maybe The Dr. can even reduce my dose. I guess if you have to you could even try increasing by the 250 amount instead of 500's. Just a thought I had, but again whatever works best for you.
Nice to catch up with both of you.View Thread
If this helps physicological wise, I'm little and take a lot too. I range between 100-110 and I was on 1500 twice a day when I was barely reaching my 100lbs mark. Currently I'm taking 1000 a.m. & 1500 p.m. Equalling out like your dose. I'll take the Pepsid/Prilosec type medication to help coat throat when I remember to or I notice it starts bothering me but all in all thank God Cell Cept doesn't bother me that way. I do have to take the name brand though. When they went generic it didn't do well with me so I stayed on the original.View Thread
First I wanted to congratulate you on being assign for WeMD! I'm only checking it back out for that reason. Go figure I already typed a few sentences and by 1 tap lost and am now having to rewrite. The back ground is still blinding to trigger headaches so not sure how much I'll be on here but sorry, I don't mean to be gripping. I'm actually happy for you! I know it can be hard having priority things to take care of and staying on top of them while dealing with Lupus. I myself have been getting more involved with the Florida lupus foundation and Shine org. Which of course takes spoons.
Regarding the survey; I do have anti-phospholipid antibodies 2ndary to SLE and I'm on anticoagulant, (rat poison). I've had a couple DVT's and a few PE's and I think I had a TIA. My routine follow-up with the Hemo. happens to be today. Since my blood has to be checked so often they did finally approve and get me my own finger pricier testing machine for the PT/INR which has helped a lot. No more constant nurse visits or me trying to get to a lab.
I wanted to also mention to Joan, depending where in Florida you live, the Florida Lupus Foundation has support groups that meet every month. Let me know if you're interested in attending and maybe we can find one close to where you live.View Thread
Hello I haven't been on here as much as I used to due to a lot of physical health issues I've been dealing with plus frankly I never liked the changes they made to this web site. It's too blinding to be on here for long now. Lisa told me via face book about your post. I just recently got diagnosed with avascular necrosis in my knee area. I been on medrol steroids a lot this year & each time unable to completely wean off. Well July I was put in the hospital due to DVT in left arm because my PICC line got infected & the blood clot. I was complaining of pain also in my left leg & they first thought it was just the infection than after finally doing a MRI they realized it was the dead bone in my knee. So far I've been told it's not bad to the point I will need a replacement & they finally had taken me off the steroids at that time but my labs are still so awful this last week they said I have to go back on steroids so I have to be closely monitored to make sure it doesn't damage more or kill more bone. Let me know if you have any other questions but so far that is my experience. You can also check out my web site I blog & update everyone on @ www.ezrasarticles.com
Thank you guys for your replies. I think a lot of people stop logging in here since they made that last change it kind of discourages me still. I still hate how bright white it is that makes it either blinding or brings on head aches. Lisa, I think your idea about everyone posting the Oprah link on there facebook is a good idea.
I just finished the I.V. antibiotics they had me on so next week I start back up on my chemo for the Lupus Nephritis. I still have 3 months of treatment left for that. Then we'll see where I stand.
Hello everyone, It's been a while so to some of you I'm new & others may remember me. Well I was hospitalized for 5 weeks this past time due to another DVT in my right arm & really bad infection due to P.I.C. line to treat my kidneys with chemo. I was half way through my 6 months of treatment when I got interupted with the other problems so I'm still on antibiotics from home twice a day through another PIC line. Besides my usual chronic pain from my AVM & AVF's in my right leg now I also have pain in my left leg. The hospital also diagnosed that I have some bone death around my left knee. That's a brief update of what's kept me from posting.
I looked through previous post & didn't seem to see anything about Oprah. Some of us know it's been hard to get on her show about Lupus. Well I guess she's finally going to be supportive of SLE. You can now go to her site & she has a section specifically for us. I've pasted in here what I think should take you directly to the page. • Click here to go to Lupus on Oprah.com
Let us prove how many of us are here with Lupus & it's great she finally put something together to support us.
I miss you guys & it's been forever since I've chatted.
I wish I could have responded sooner. I haven't been able to log in for a few days so of course you should have already had the procedure at this point. I actually had my Thyroid removed a few years ago. I had 2 nodules on my Thyroid. They did end up being malignant so they took the whole Thyroid out but didn't have to take any lymph-nodes. 2 months later they stopped all my Synthroid medication so they could give me the 131 radiation pill that is suppose to kill any cancer nodules left in the body. That was a 2 or 3 night stay in the hospital. I think the surgical procedure was an overnighter. At this time you may not have a voice. I know I couldn't talk at first. Then I had a deep raspy voice (I actually got compliments that it was kinda sexier & I was almost hoping it would stay that way) but I think within a month my voice was back to normal. I myself do have a blood clotting factor 2ndary to my SLE so I always have to change my coumadine to lovenox shots & make sure everything is OK blood thin/thickness wise prior to any surgery. I can't really think of anything else I went through but if you come up with any other questions I might be able to answer. You can either post it on here or email me firstname.lastname@example.org Hope this still helps even if it's late.
P.S. I did use Vitamin E Oil like even better than Mederma Cream on my surgical scars that makes a big difference. My doctor was also smart to do the incision along the same crease area on the neck so it's not noticeable anymore.View Thread
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