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Life With Lupus

My Rheumy visit


#1

Hi everyone,
Went to my Rheumy for a follow up on the progress of the medications, she was happy with the progress with the Hydroxyclorequine. This is my second visit after starting treatment for SLE Lupus 6 months ago. I have probably had this for 30+ years, but was never tested. This is the first doctor to actually listen to me.

I explained that the Celebrex stopped being effective, she told me that the Glucosamine/ Chondrotin were canceling each other out, so I should take less Celebrex or stagger the Celebrex with the supplements. She was the one that added the supplements, but I guess it was just overlooked. I am off the Celebrex for a couple of days, as I am going to see a Orthopedic surgeon about my back pain, thought It would be better to gauge where the pain is. I showed a couple of x-rays to the Rheumy of my back, one seems to show the bottome floating ribs, to be detached from the vertebra! The T11 and T 12 are both fractured, from a old injury, and I have OA in my Throacic spine. The rest is lupus arthritis, my knees show no Spurs at all. I was a little concerned about the ribs, if they moved and punctured a lung, might get messy… She is just dumping the pain management onto the new doctor, as no one wants to deal with that, thanks to the new laws that make chronic pain suffering into criminals.

I have had some rash on my face, but will get a non steroid cream for it at the dermatologist.

One thing she was concerned about, I described the side effects of the Cymbalta, I am taking for neuropathy pain, it is causing symptoms similar to prostrate, so now I get to go to another specialist, a urologist and get the prostrate and kidneys checked out. To make matters worse, I lost my wallet, containing my drivers licence, and credit cards, DMV said it would be over a month to get in for a appointment, I guess I am supposed to sit at home and wait? As you know, we don’t need stress like this in our lives…

A plus of the anti malarial, my brain fog and blurred vision has almost gone away, (except yesterday, when I had a flare from losing my wallet). I used to think it was blood sugar that triggered it, but my blood sugar is normal during the episodes.
Sorry for the long winded post…


#2

nice message. I think I had Lupus also for 30 some years. Got diagnosed at age 62.

Ellen


#3

Great message, Jon. So glad you found a rheumy that listens. Some day I hope this town gets one that listens. Even my PCP and pain managemnt docs say there are no good ones in town. I hope you get to feeling much better soon.


#4

Thanks, it is a slow process, feeling better...

Tomorrow I see the Orthopedic doctor, it will be interesting to get his thoughts. I went off Celebrex, it is good to do now and then to get a feeling of the normal pain levels, I guess it is reducing a lot of pain, as I feel like a 7 level pain at the moment.

One of my problems with Celebrex, (besides the cost) is I try to do to much, as I don't feel the consequences of my actions until later. If I feel them through the Celebrex, then I am in trouble! I may try tapering off on it and using more natural anti inflammatory supplements. This is another thing to ask the Orthepedic doctor... Not many choices out there, that don't have a lot of side effects.

Monday, is the scary Urologist... Never liked the glove treatment.


#5

Hi Jon, did you go to the same rheumy? Sounds like you are doing better and that is good. The celebrex situation drives me crazy...it costs too much! I have taken 2/200mgs a day forever, I keep trying to cut back, but the pain really is bad.

I have many back and neck problems too. I opted out of surgery for awhile as the lupus flares make it worse and I can manage better now unless I flare.

Good luck to you at the Urologist and keep us posted.

Can't the DMV give you a temporary note? Darn too much for you at once!


#6

Yes, same Rheumy, the anti malarial is helping, and hopefully I will not have anymore serious side effects from Cymbalta. Thanks, I don’t look forward to Uruologists, picking and proding, but I guess it will be good to check out the prostate and kidneys. Then next month it is the dermatologist…
The trip to the Orthopedic doctor was a waste of time, he looked at the Throacic spine, that has virtually no disc space and the vertebrae starting to fuse, and says “your back looks normal”, normal for wahat? I think he saw “cash patient”, SLE Lupus, and throacic spine, and decided to try to get me out of the office as soon as possible. I showed him the dislocated ribs, he said, “well I can’t operate on that, what do you want me to do, pull them out?” I can really pick them… He recommended that I consult with a Rheumy, I told him that she referred me to him! Don’t you sometimes feel like a ping pong ball? He did have one good point, he said any surgery would probably make me have worse pain!
Anyway, he is referring me to Pain Management", that seems to be the new norm for doctors since Obamacare.
Had to start up the Celebrex again, pain was unbearable. I am going to get it from Canada, it is less then half the price for the Generic.
That is what I need, a temporary licence, you have to go to the DMV for that. I forgot that the doctors also want to see a drivers licence, to prove I am me, they were out of luck today…


#7

I have a appointment with a pain management doctor tomorrow, even though my Lupus pain is doing better, I still have Polyneuropathy, damaged spine and OA to deal with. Looking for alternative methods, like acupuncture and massage, maybe a injection here and there. This seems to be how doctors are trending now, to get away from pain treatment, instead refer you to pain management clinics.

This is the doctor I am going to see, Dr Yogi! http://www.painworld.com/

Having a pretty bad malar rash on my face, it was triggered by a dermatology Rx to burn off some precancerous spots.

My GP doesn't believe I have Lupus, I should send him some photos...


#8

Jon, Dr. Yogi looks very interesting I will be interested in hearing how it goes.

Yes, take a photo of your malar rash to show the Rhuemy. I never did and I wish I had so I can remember how bad it was.

I have a cat named Yogi....actually Yogananda, he is an AKC registered Abyssinian who thinks he is a dog!

Sorry to get off track!

Good luck tomorrow and let us know how it goes.


#9

Yes, he seems right up my alley, been doing a lot of alternative things for years, meditation, trying to have a right attitude, yoga, etc. but with the lupus, it caused muscle tension all the time, no matter what I did. I also like that he wants you to study up on everything, usually the older doctors will resent this.

Have been a yogi for years… Nice name for your enlightened cat! Yogananda would be happy…
Take care
Jon


#10

Whatever bright light thought up the new pain pill rules hasn’t ever had chronic pain. And I don’t think it’s going to stop one person from getting the meds, either- it’s just going to slow them down, too. Keeping antihistamines off the shelf probably helps stop meth making, but getting a prescription in writing twice a month- if they were writing illegal scrpts in the fist place, they still are, and they get to skip the trip to the doctor’s office. Dumb idiotic law. Especially mean to punish people with chronic pain.
I’ve had those pain management shots. Since my back pain was really a hip problem that aggravated my back, it wasn’t a great solution, but it helped my back, and taking out my bursa helped my hip. Now I have chronic lower back pain, probably related to the fact that I’ve lost two inches in height, and I didn’t even think to mention that to my rheumy at my appointment because it is so low on my list of health issues right now. I’m going to get X-rays of my hands, to see whether the two deformed fingers have what kind of arthritis (I think it’s uric acid deposits, since they got that way when I had gout)- he’s checking for RA. My grandma had RA, that’s my genetic link to auto-immunity,


#11

Yes, idiotic is the word for the new drug laws…
My Rheumy did a ultrasound image of my hands and feet, it shows soft tissue involvement, but x- Ray will show signs of deformity and RA erosion, my doctor said it looks like tiny mouse bites in the bone of the joints.
I don’t think cortisone will do much for my damaged spine,I have OA in all the thoracic vertebrae and two fractured vertebrea: T11-12, the two “floating ribs” are dislocated from the T12 and literally floating…


#12

Saw the pain doctor, he agreed that the pain it primarily coming from the floating ribs, he will do three nerve blocks, and see if that helps. Very nice doctor, he even cut the procedure price down to $500. Sure hope it helps, because surgery would just make it worse.


#13

That sounds pretty good. Nice of him to give you a deal too. Sure hope it
Works for you.


#14

Wanted to mention that there is a generic for celebrex available in the U.S. now -- I was given it last time I refilled my prescription.

I had a horrible reaction to cymbalta. I am now taking neorontin for nerve pain and lexapro for anxiety and they both are doing their job without the horrible side effects I had from the cymbalta.

So glad you are happy with the pain doctor-- do keep us updated on your progress.


#15

Yes, my recent batch was generic, at Costco they charged me more then the name brand! Now I am getting it wholesale #90 for $120 versus 60 for $600!
I had a terrible reaction to neorontin, and no problem with Cymbalta, so I guess it is different with everyone.


#16

BTW, I know this isn't the question you asked, but i gather you are in the San Diego area, and if you are looking to consult another spine specialist, I would recommend Dr Robert Eastlack at Scripps. I found him to be a very kind, compassionate doctor. He really takes the time to listen (unfortunately this means there can be a long wait in his office) and truly seems to want to help.


#17

Jon, do you take 2 celebrex a day? I do last time I got 60 for $86 instead of $120 at Vons. It is my preferred pharmacy.


#18

The back doctor sounds terrible, I can’t believe he said that! I had an eye doctor once who shouted at me when I said two of the choices looked the same! I started asking friends who they went to until I found someone who loved hers. That worked out. I wouldn’t go back to that guy you saw. Dr Yogi sounds fabulous! They can do a lot these days . On the celebrex issue, tell the doctors it costs too much. There are a lot of cheaper, effective ansaids out there. I took celebrex but had to switch after a couple years for side effect issues. The new new is just as good, and much cheaper.


#19


Thanks, I will keep him in mind, right now I will stick with Dr Yogi and see if the epidural injections help.
ranin02 said:

BTW, I know this isn't the question you asked, but i gather you are in the San Diego area, and if you are looking to consult another spine specialist, I would recommend Dr Robert Eastlack at Scripps. I found him to be a very kind, compassionate doctor. He really takes the time to listen (unfortunately this means there can be a long wait in his office) and truly seems to want to help.


#20


Yes, I am taking 2-200mg caps a day. Good price at Vons!


geneva21 said:

Jon, do you take 2 celebrex a day? I do last time I got 60 for $86 instead of $120 at Vons. It is my preferred pharmacy.