Degenerative disc disease, degenerative joint changes, lupus and CKD

[lowraind]

Over the past few months I have been experiencing chronic pain in my legs, shoulders, hands, back and neck. I have long been diagnosed with osteoarthritis, but when I was diagnosed with ckd, I was taken off Celecoxib and have been making do with Tramadol and Tylenol, and when the pain became too intense, Prednisone, which provided me with relief for six months or so.

The last time I went with the Prednisone tabs, they worked for 12 days. My personal physician prescribed an appointment with a pain management doctor who sent me for an MRI and also had me see a rheumatologist. The rheumatologist sent me for x-rays and also had me see an orthopedic surgeon. The rheumatologist has me scheduled for Occupational Therapy and the orthopedic surgeon has me scheduled for Physical Therapy.

MRI results--Multilevel degenerative disc disease and spondylosis of the lumbar spine. The dextroconvex scoliosis contributes to severe left foraminal stenosis at the L2-3 and L3-4 levels.

X-ray results--frequent use of terms such as: moderate to severe degenerative changes; degenerative changes and severe degenerative changes.

After two levels of blood work, and after my first nephrologist diagnosed that I did not have lupus, the rheumatologist left me a phone message saying there are indications of lupus and that we would discuss this at our next appointment, which is Sept. 9th. In the meantime, I am trying to learn all that I can about lupus and what that means in regards to ckd.

I would be interested in hearing from anyone who is dealing with lupus, severe degenerative disease as listed above, and what medications you are able to take to not worsen the ckd.

Thank you,

lowraind

[Bassetmommer NKF Ambassador]

HI Lowraind,

I have Psoriatic Arthritis. It has caused deterioration in my ankle, toes, lower spin, neck, hip and hands....for now. It would continue to destroy my joints if I did not take the very strong medication I am on. I have a monthly infusion of Orencia. I am not allowed to take most pain medication, no tramadol or ibuprofen, or opioid. I rarely if ever take Tylenol as it does nothing for arthritic pain. I do use, with all three doctors' permission, CBD oil. It does help me sleep. For me, it does not really do much for pain, but it relaxes me and takes the edge off. I use a pretty strong dose, and I only take it at night right before bed. It does not make you stoned, there is only a trace of THC in it.

For pain in the day....well... I just muster through. Some days are better than others. I rest when I need to, meditate and breathe when it is bad. There is a lot on mindfulness and pain relief and you might want to learn more about it. I actually participated in a study years ago when it was just becoming popular. I took classes and I went on to actually teach it to clinicians as an alternative process for pain management.

mindful.org/jon-kabat-zinn-...

[orangecity41 NKF Ambassador in reply to Bassetmommer]

I empathize with you. Thanks for link to mindful.org. I have been trying a homeopath rubbing oil for neuropathy, which my Doctor approved of. Thanks for info on CBD. Do they make an oil?

[Bassetmommer NKF Ambassador in reply to orangecity41]

Yes, I use Hemp tincture, 2000mg CBD oil. Tastes terrible (unless you like "weed") but they do make flavored but it is not as strong.

[orangecity41 NKF Ambassador in reply to Bassetmommer]

Thanks for info. Another option in case the rubbing oil is no longer effective

[Bassetmommer NKF Ambassador in reply to orangecity41]

Some people use the oil as a topical. But because what I use is so expensive and I would have to rub it all over... I went with the dropper full under the tongue at night.

[lowraind in reply to Bassetmommer]

Is there any research regarding what impact taking it internally has on the kidneys? I have been using cbd cream topically, but question taking it internally.

[Bassetmommer NKF Ambassador in reply to lowraind]

Good question and one I vetted out completely before I took any. I asked my PCP. She was fine with it. I asked my nephrologist and rheumatologist and both agreed it was a safe alternative for me. But I went to see a top hematologist to see if my inherited blood condition can be treated with something else other than coumadin. I told her my thoughts about CBD oil for pain. She knew my history and complete blood work and she said it was the best choice for me. (FOR ME) She has both her parents on it also for pain. I went to see her because now they are finding that coumadin, warfrin has a huge impact on the kidney.

The truth is all the prescribed medications are what caused my kidney to fail in the first place. There really is no safe medication. As my nephrologist says, it is like a cascade. A medical issue appears, and they fight it with the knowledge they have at the time. But inevitably, it will cause an effect somewhere else. Most medications do not cure, they mask the symptom so you think you're better. And when you inherit something, like I did with a blood condition, called Factor V Leiden, and my Psoriatic Arthritis, you get a bad roll of the dice.

I am not saying be cavalier about medications. But as Rosanna Danna said, "It's always something."

[lowraind in reply to Bassetmommer]

Thanks much. I do have some information from Jon Kabat-Zinn. I will follow up more on it. Regarding the CBD oil, is this external or internal? I have used CBD cream on my hands, legs and shoulders. Not sure how much it helped, since I started using the cream before seeing the 3 doctors. I did discuss it with the pain mgmt. dr. who said to use it if it helps. My personal physician said she did not know enough to comment. This disturbs me.

The rheumatologist prescribed Diclofenac Sodium Topical Gel 1%, but I am waiting to use it until I have further input from nephrologist, pain mgmt. dr. and orthopedic surgeon. I do not want to be caught in the middle of three drs. treating pain in three different ways with no communication between them. Besides, the gel came with 6 warnings--I am allergic to sulfa, have ckd and am elderly (whatever that means), so, I am apprehensive.

[orangecity41 NKF Ambassador in reply to lowraind]

I agree, whatever elderly means. Many factors involved. Things can get medically complicated too sometimes involving CKD.

[orangecity41 NKF Ambassador]

Sorry to hear of your medical conditions. I know it can be a challenge with CKD, as I have other medical issues to deal with also. I too have osteoarthritis and scoliosis. I too was taken off mobic, a cox 2 inhibitor. I empathize with you.

[lowraind in reply to orangecity41]

Are you using anything besides the homeopath rubbing oil? Does it help?

[orangecity41 NKF Ambassador in reply to lowraind]

I take gabapentin for neuropathy. Am using the neuropathy rubbing oil for my neuropathy pain and it does help. Take tylenol as last resort.

[Zazzel]

Oh, I’m so sorry you are having pain! I don’t have osteoarthritis, but have similar pain as you described mostly in neck, shoulders and hips and have some degeneration in my spine. Also what they think is small fiber neuropathy in my feet. If the osteoarthritis is putting any pressure on your nerves than nerve glide exercises might help. They are very simple and non-strenuous.There are lots of videos on YouTube. I do them throughout the day. They help ease the pain. I also use an essential oil spray called “Intense Muscle Spray.” I got it at a craft show, but the woman sells it on her site skinsenseorganic.com It’s got essential oils and such. It says it’s good for arthritis, bursitis, back, neck, shoulder pain, fibromyalgia etc, so maybe it would help. It helps some of my pain a lot, but not all of it.

I hope the physical therapy helps. It did help me somewhat. Seems like we all have to do a combination of lots of different things. No one nice easy solution yet, but I’m still hopeful it’s out there someday.

[VE7590TH]

I have the degenerative disc disease and ckd. All I can take is Tylenol