Update on my phone appt. with Neph. last Wed.

[Sophiebun11]

3 months ago myNeph. had said he may take me off Prednisone in Jan. as an experiment to see if my kidney numbers stayed up since when I started Pred. they jumped from eGFR of 28 up to 50. It had been 35 - 30 the previous 4 or 5 years.

My Jan. labs showed I'd dropped to 42 which is still my best in 8 years. But the Neph said stay on Pred. and urgently see a Rheumatologist to get on CellCept. He said that without the Pred masking my eGFR it is really down to 20.

He's a very nice and funny guy, I told him I didn't like that "new math" he was using. Then he said my Potassium and Sodium are dangerously low so I have to take that horse pill 2 times a day now. He told me not to curse him. I said if I did it would be in the privacy of my own home. It's not that horrid to take, I take 13 other pills, and one is nearly that large.

I finally got an appt. with a Rheumatologist. The appt. is for Feb. 23rd. I hope she will work with my Neph and figure out something to deal with my autoimmune disease attacking my kidneys. The Neph is in favor of CellCept but wanted a Rheumy approval. I hope it will be in place of the Prednisone, not in addition to it.

The the bad news. The Neph told me that even though my problem is autoimmune, that I need to cut out my Migraine meds as they are harmful to my kidneys. He told me very bluntly that "either live with a daily Migraine or keep some kidney function". He said it's that serious.

I told him that if I have to pick between spending the rest of my life in a dark room vomiting from daily migraines, I will opt to keep the migraine prevention meds. I think anyone with Migraines would do the same.

Then we compromised; I'll go see a Neurologist to see if there are any newer or other migraine prevention meds I could try.

I found a study that oxygen can help chronic Migraine. So maybe the Neuro can give me a prescription for that if there aren't any meds that will be safe.

I can't imagine how pure oxygen through a nasal canula, or mask, could harm my kidneys.

Well, that's the latest update. I did start physical therapy for my balance problems. I haven't had any more falls since I got my Raven head crown cane Reggie. He is a big help. Today I ordered one of those buttons for my wrist like a watch to push for help in case "I fall, and I can't get up again" LOL

That's my novella for today, kudos if you read all the way to the end!!!

[Bassetmommer NKF Ambassador]

HI Sophie, You definitely have some serious challenges ahead. I cannot imagine the choice is an easy one. Hopefully they will find something that can help the migraines and protect the kidneys. Having an autoimmune disease is a real challenge. I know, it is what has caused all my issues with my kidneys as well. If it wasn't the disease, it was the medicine for it. You will be in my thoughts and prayers.

[jodaer]

Hi Sophie, ugh! One of those choices we were talking about yesterday only this is a big and hard one. Sending lots of positive thoughts that the neuro can come up with an alternate medication.

[Sophiebun11 in reply to jodaer]

Thanks for the good thoughts. I hope if nothing else the oxygen may help, the studies are very promising for Cluster and Migraine headaches.

🐇❄️🐇

[jodaer in reply to Sophiebun11]

Let us (me) know about the 02 treatment. I'm mostly interested if in if insurance will pay for it. There are guidelines for it when one has COPD. It does seem as if it could help. It would definitely be worth a try

[Sophiebun11]

I remember when I had asthma really bad and got pneumonia my arterial blood gas had to be below a certain number for the O2 to be approved, which I was low enough.

The nurse at my PCP said she used to work in Neuro and the Dr. used to prescribe it and the ins. paid as long as he put in a script for it. It's off label use so it may take a couple tries. I have Medicare/MediCal(Medicaid) so most things are covered by one or both.

I'll update after Rheumy and Neuro and Neph figure it all out. Maybe with 3 prescriptions I will get approved since I can't take meds that harm my kidneys. O2 is cheaper than dialysis!!! That is how they will see it at the Ins.

Thanks, jodaer

[jodaer in reply to Sophiebun11]

That's interesting info. Thanks. BTW have you tried acupuncture for the migraines? After the discussion yesterday I ran across a couple of articles on migraines and how to prevent. One was a slide show, i don't do those but the other was on acupuncture and how it helped.

[Michael__S]

Sophie, I have to say your fortitude is truly inspiring! I whish you best with your upcoming appointments.

Since you mentioned oxygen, have you ever tried an hyperbaric chamber? I don't know whether it's contra-indicated but it might be worth a try. It might be worth digging around for prices, I ended up finding one away from the big city that was less than 1/2 the price.

[Michael__S in reply to Michael__S]

Another thing to try might be a TENS device. It doesn't appear to be widely used but some research appear to show some benefits. I am not certain how it got used (i.e. targeting a specific nerve), stimulating blood flow in the neck area might be helpful. I big might.

neurologylive.com/view/tran... (the research paper itself pubmed.ncbi.nlm.nih.gov/319...

[Sophiebun11 in reply to Michael__S]

Very cool, Michael. Thanks for that research. I used to have a TENS for my carpal tunnel and my kitten chewed the wires. I've seen them on Amazon for under $50.

I really appreciate that. I'll run it by the Neuro. I don't have my referral yet, it should be soon though.

[Sophiebun11 in reply to Michael__S]

Is the hyperbaric chamber something you buy or do you go to a place that has them to rent by the hour or 1/2 hour? It's an intriguing idea, thanks, Michael. I appreciate your ideas and will certainly pursue them with the Neuro.

[Michael__S in reply to Sophiebun11]

They comes in all shapes or form but they are quite pricey. I went to a facility to give it a try, it was in an attempt to recover faster from my surgery and it exceeded my expectations. It was unfortunate that we had fuel rationing at the same time so I stopped after 1 session, I was planning to go there 4 or 5 times.

[Sophiebun11 in reply to Michael__S]

I'll look into it and see if there is a facility like that in my area. Thank you so much. I'm sorry you didn't get to go as much as you'd hoped.

[drmind]

Hoping and praying that the med changes and the O2 work. Sounds as if you have a good nephrologist who is interested and invested in your care. Maybe you'll be fortunate to get a good neurologist as well and some genuine help comes along. Please keep us posted. There are a lot of people out here who care. Best always

[Sophiebun11 in reply to drmind]

Thanks drmind. As always, I appreciate your kind words. My Neph is a great guy, I believe he wants the best for me too. I seem to have a great medical team on my side so I'm hoping my new Neuro will be a winner too!!!

Thanks again!!

[Blackknight1989]

I would definitely listen to your nephrologist. However, there are several meds for migraines. Surely there is a migraine med you can take that isn’t harmful to the kidneys. It seems a little unusual for your nephrologist who seems easy going on other meds to draw a line in the sand over your migraine meds without offering a different med or telling you to talk to your doctor who prescribed to get a different med.

I have little experience with migraines as I don’t have headache problems (thank goodness) but I have close family who suffer with migraines. I can’t imagine having a daily migraine without meds because you are trying to save kidney function. I am sure there are several CKD patients who have migraine issues and can take some kind of meds to help the headache. I’d ask. Just my .02 cents!

[Sophiebun11 in reply to Blackknight1989]

The Neph and my PCP cut back and cut out various migraine meds and I'm still dropping my eGFR. He doesn't know what else to try besides CellCept for my autoimmune disease. But that is an immune suppressant very serious med and to spoil it's work with other meds is something my Neph doesn't want to do.

I understand from his specialty where he is coming from. My PCP told me the same thing 6 months ago and the Neph tried switching things to help.

If my autoimmune disease wasn't so aggressively attacking my kidneys I could probably remain on low dose prevention meds for migraines.

Thanks for the input. I'd like to hear from anyone in the same boat with autoimmune and migraine and see what they do to not harm their kidneys yet not feel like they want to buy a guillotine and cut off their head LOL!!!

[Blackknight1989 in reply to Sophiebun11]

Well that is a lot at one time. I appreciate the well thought out and through explanation but it was not something you had to give me. I misinterpreted your posts and thought you had your levels stable. Also, I thought your nephrologist was being either a hardass or lazy about your migraine meds. So you could and probably should have just called me an idiot and moved on…lol! I would assume once you get through this period and decide on meds for autoimmune to help kidneys you can readdress the migraine. Again, never had one, had a bad headache or two, but nothing comparable to a migraine. Just have close family who have them infrequently thank goodness. I can’t imagine living with one every day. Much luck and keep us informed. I hope you find a fellow CKD patient who’s disease is caused by autoimmune disorder. As a CKD sufferer and because I am a geek and read actual PubMed research I am familiar with CKD caused by autoimmune but it is not my story and thus I cannot help with those specifics. I can offer my support and prayers, and I do. Thanks again!

[horsie63 in reply to Sophiebun11]

My autoimmune disease is Graves Disease which causes hyperthyroidism. It's in remission for several years now and I don't think it's affecting my kidneys. I used to get migraines that lasted a week every month but since menopause they have mostly stopped. The one time I got them daily was when I was on statins and that lasted 3 months and it was awful. Currently the only meds I take are for my BP and losartan to try and help the protein leakage.

[Scrabbleaddict]

Wow...you certainly are inspiring! I totally understand your decision to continue your migraine med. I have half of my neck fused and my back is "inoperable". Taking my pain meds allow me to be able to have a life. My friend who suffers from migraines gets Botox injections...she has had tremendous relief from that therapy. I hope you are able to get the pain relief you need and keep your kidneys functioning.

[Sophiebun11 in reply to Scrabbleaddict]

Thanks so much for your encouraging words. I'm sorry you are suffering with pain as well.

[Nana16]

Thank you for the update, and for showing us how you handle all of the things you must juggle. I completely understand that migraine situation. While I do not have migraines, I have had to make the same decision in regards to two other issues. My cardiologist and PCP want me on cholesterol meds. I have two blockages, most likely more related to CKD and Hashimoto's that isn't well controlled than my cholesterol levels. I have tried to take the statins, but they kick off my IBS, and I told my doctor I didn't care if I had an extra few years added on to my life by the statins if I had to spend the rest of my life in the bathroom.

I will pray that you can find something that will work to reduce migraines without damaging kidneys, and that you can continue to keep such a great attitude through all of your challenges. Best of luck to you!!!!

[Sophiebun11 in reply to Nana16]

I understand the IBS, I have that too. The Neph took me off Omaprozole due to CKD and I now take metaclopromide which effects my IBS in an explosive way if you get my drift.

It's always one step forward and two steps back. We have to keep hoping for a better way to handle things.

Thanks for your reply Nana16.

[jodaer in reply to Nana16]

Nana, Agree with you about the statins. I'm in same boat, had a bad muscle pain reaction, i refuse to take them. Living in misery if it can be avoided is not for me.

[Kbressler NKF Peer Mentor NKF Ambassador]

I missed how much prednisone you are taking. Prednisone is a front line medication for many chronic conditions. It is often used in the treatment of Kidney diseases such as FSGS just to name one. It also in the treatment plan for autoimmune diseases. You multiple issues need constant and concise medical attention. I would stay the course with your nephrologist and rheumatologist. Your main goal given your age is preservation of kidney function and that is something that you and your treatment team should focus on. In respect to the migraines; there are meds now on the market that can help. Migraines are the bane of many patients with chronic kidney disease so your seeing a neurologist is spot on. I speak to you from experience as I have had kidney disease my whole life and currently 72 years old and have had my brothers kidney for nearly 35 years. I have been on prednisone my whole adult life. I offer you prayers and hope that you stay the course trusting in your medical team. I offer a kidney support on line go to kidneysolutions.com to sign up. Blessings

[Sophiebun11 in reply to Kbressler]

Thanks for your kind reply. I'll check out the link. : )

[Sharam]

I have migraine too...Headaches all the time... Maybe not as severe as yours. But I don't remember the last time I had no headache... Oh, wait, maybe I do. It was 6 years ago!

I only took pills for one month, so I don't think I can blame my kidney disease on them!

I sometimes think to myself, the hell with my kidneys... Hand me those pills, I wanna get rid of these headaches! Lol

[nellie237]

Oh Sophie,

I'm so sorry the appointment was so disappointing. I sincerely wish you all the best in finding a solution. Sending you virtual 🤗🤗🤗🤗's