going to scripps instead of mayo

I am sorry for your suffering, Tara, and I hope Scripps can help. About the pred I was told to always eat something when I took prednisone, so I first coated my stomach with olive oil and then ate a snack or a meal. My Doc gave me Ratatindine (nor sure it’s called that exactly), but I never needed it.
Stay determined and persistent and I believe in you and I know that you will get the help you need and that you will find the solution to this mystery.
My prayers and good thoughts are with you!

My father in-law has had great results with Lyrica for his tri-geminal neuralgia, a very painful nerve disorder of the tr-geminal nerve. He is on maximum dose. There is weight gain involved, over time, he has been on it for years. Some people w/cidp have also used cymbalta for pain besides as a anti-depressant. Some love it, others hate it. Good luck at scripps, what is scripps?
Dawn Kevies mom

😮 Hey Tara,
I feel your pain. Literally…
I also have Lupus and CIDP and take Cymbalta, Ibuprofen, Topamax and IVIG 3days every 3weeks. It keeps me walking. I still need a cane for anything longer than 20 feet, a walker for long days and distances and standing too long my legs turn into noodles. Constant tingling, numbness and pain. Other than that I’m great!

Good Luck,:p

Joyce

You should be taking Tums everyday & something like Prevacid while on the ‘roids. Also try to take the ‘roids with milk or with food, that should help with the stomach issues.

Kelly

Tara,

Seems like nothing I tried helped me with the pain. It was so intense, it would take my breath away or sometimes I would just curl up in a little ball and cry and cry. Then my neuro prescribed Namenda – in the US, FDA approved it for Alzheimer’s but it was developed with treating nerve pain as one of the stated goals. My neuro’s wife is a pain mgt doctor/pediatrician and she recommended he try it for me since I was in agony.

I’ve had great results from it’s use. I truly can say my pain is well controlled. You can search on Namenda for earlier posts, but I continue to love it, am off all other daytime pain meds and my use of the hydrocodone continues to drop. I still have a decent supply left from my August prescription … before the Namenda, I was going through a prescription of 70 pills every 4 weeks to now rarely using it at all.

I tried Lyrica and HATED it – it didn’t totally control my pain and I gained a hunk of weight for my efforts! Yuck, yuck and more yuck … for me. I have some friends on it now and, while they hate the weight gain, they love the way it controls their pain and feels extra weight is a small price to pay for pain free days.

In this forum, I know of only two others that considered/tried the Namenda. Regina tried, but it made her too sleepy to continue. Clare was considering it and not sure if she ever tried it as she was about to start on Cymbalta (if you two are reading – how are you each doing????)

So, like everyone always says in this forum … we are all so different in what works for each of us. But I found I just had to keep trying different things until I found what works for me. I wish you great success in diagnosis and treatment and pain free days every day! 😀

How’s it goin?

So, does that mean you’re coming to San Diego Scripps?
(If I remember right, you’re in Las Vegas?)
I have a good neuro–he is head of neurology at Tri-City Medical Center,
but is also at Scripps Encinitas. (They have offices around the county).
My neuro is Dr. Sahagian, and their office has it’s own website, as they have about 10 different neuros each specializing in different neuro problems.
Their website is:
[url]www.neurocenter.com[/url]
Dr. Sahagian specializes in neuro-muscular diseases.
Which Scripps are you going to? DO NOT go to Scripps-Green in La Jolla–it is awful. But the one in Encinitas is real good. I’ve been in both.
And they say Scripps-Genessee is good. But if you want Dr. Sahagian, you need Scripps-Encinitas.
Give me a shout if you want any other info on them.
Ken
(KEDASO)

[COLOR=black]Hello Tara,[/COLOR]
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[COLOR=black]My neurologist hates prednisone because of its bad side effects. With the amount you are taking, your neurologist should have also prescribed something like Pepcid and Fosamax, calcium, and vitamin D3, the first to calm the stomach and the others to slow osteoporosis. It would have been a good idea to have a bone density scan at the start, but it certainly would not hurt to have one now. It would not be a bad idea to have a glucose monitoring kit, to make sure the prednisone is not messing with your blood sugar too badly.[/COLOR]
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[COLOR=black]As for mood/irritability, there may not be too much you can do to control it. At my highest doses, I said and did bad things that I almost cannot believe. Fortunately, I had let everybody around me know that I might act badly because of the drugs and they should just ignore me. It was still difficult for them, but the warning did help.[/COLOR]
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[COLOR=black]I cannot help much with pain, except to say that you might ask your doctor to consider tricyclic antidepressants. Nortriptyline worked for me, although I eventually gave it up due to the very weird side effect of making anything sweet taste bad. I just saw something in a trade journal that suggested the combination of low doses of nortriptyline and gabapentin might be effective in some people and have fewer side effects.[/COLOR]
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[COLOR=black]Godspeed in finding relief and peace of mind.[/COLOR]
[COLOR=black]MarkEns[/COLOR]
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