If your insurance company tries to stick you with a huge copay, be sure to call the manufacturer of the med first to see if they have an assistance program. When United Healthcare decided to jack my copay for Rebif from $50/month to $913/month with no notice, I was able to get assistance from Rebif to keep my premium from going up at all. UHC has since tried to screw me over a couple of other ways to get me off of Rebif, but I have managed to stay on it and have a manageable copay.

That's awful. Did they even have an alternative to Rebif or did they just want to stop paying for it?

My doctor already sent the rx straight to the manufacturer. Hopefully I'll hear from them soon, a bit anxious to get started in the hopes that I can slow things down.

One other question though, the pain mgmt doc doesn't like giving out narcotics for MS pain, I can understand to a point, took lortab and percocets for pain over the years and really didn't do anything more than make me hyper and in pain rather than lazy and in pain. I mean they did help a little, or I wouldn't have bothered taking them at all, but it was only a little. The better than nothing assistance.

I had meant to ask about alternatives for pain, but honestly today at the doctors office I was upset about an unrelated thing... Upset stating the case mildly, lividly homicidal.... And was discussing the MS dx at long last that I never even thought about 'pain meds' I mean I almost forgot to ask for my imatrex.

But aside from narcotics or NSAIDs is there anything else for pain?

I take muscle relaxants for constant spasms, which helps the pain some, but honestly there are more days than not that I'm almost driven to suicide for the pain. More than open to any suggestions before my next appt with the pain doc again, since he tends to take my opinion to consideration.

I know anti-depressants have some benefits for nerve pain in things like fibro, has anyone tried them for MS pain?

I take Amitryptillyn or Elavil for my nerve pain. I also have trigeminal neuralgia in my face from the MS and take Tegretol for it. They both help immensely. Good luck

Some have good results with Baclofen if the pain is due to spasticity.

I've found physical therapy to be very effective but it takes time to notice results. I've had about 5 courses of PT over the years, and each one was 8-10 sessions and usually involved eletrostim as well as ultrasound.

TXBatman, I have UHC for dental insurance and have noticed that they're not rated very high in any category where consumers rate insurers. I've had my problems with them, mainly in connection with trying to reach anyone there by phone who can answer a question--and they're very slow in getting around to acting on claims.

They wanted me to be on Copaxone or Avonex instead. They have a list of about 4 or 5 "STEP" therapies that they want you to try at least 2 of before letting you have more expensive medicines. I had already been on Copaxone for a couple of years and ended up doubling my lesion load in a single year while on it. So I got moved to Rebif and had been stable on Rebif for over 2 years when UHC suddenly decided that Rebif was too expensive and they were going to change from a $50 copay to a 20% copay (which was $913/mth for Rebif). And FYI, you have to fill it through their pharmacy (Optum RX), they won't let you find a cheaper price elsewhere and pay 20% of that price.

So I went to the maker of Rebif and asked about an assistance program. They enrolled me in a program with very few questions asked that pays my entire copay. So I was fine on that for a few months. Then UHC sent me a letter saying that effective Jan 1, they were not going to accept that copay assistance card any longer...that I would have to pay out of pocket. I called Rebif again and they said that they would still reimburse me for the copay...I would just have to submit my receipt to them so they could pay it. It was just UHC's way of trying to make it as difficult on their patient as possible to try to keep me from using the manufacturer assistance program. So I resigned myself to having to pay out of pocket and submit receipts.

So imagine my surprise when I submitted my first refill of the new year and had zero copay still. I guess somebody at UHC realized Rebif wasn't going to blink and back down, and that UHC would only be punishing their own customers. So they relented and kept accepting the copay program. Everything is fine right? Nope.

At the end of February, my Rx for Rebif ran out of refills, and the neuro submitted a renewal...normal routine stuff right? Nope. UHC denied the coverage, insisting that "there is no clinical confirmation of the effectiveness of the medication". Which apparently is their code for "you haven't proven that a cheaper medication wouldn't work just as well". Well isn't that interesting... Amazing that the Family Practitioner who signed UHC's letter denying my claim apparently knows more about the effectiveness of neurological meds for MS than the MS society, MS specialists all over the world, and my neurologist who all believe that Rebif is an effective medication to slow or prevent relapses.

It really is amazing that a family practice doctor who has never seen me, never read my scans, and who has never reviewed my chart can make the decision to overrule my neurologist about what medication is likely to be effective for my MS! So while we fought with UHC over the issue...they wanted me to try one or more of the other meds first...I was off my Rebif for over a month. I ended up having to go back to my neurologist, get another MRI, and resubmit more paperwork to UHC, and finally they relented and approved the Rebif Rx.

I really felt like a total guinea pig...like UHC was trying to say "here little guinea pig...you are healthy on the med we have been giving you...now lets take you off of that and try something different. If you go blind or lose the ability to walk or can't balance to ride your bike anymore...then maybe we will agree to let you go back on the med that was working for you...after the damage is already done". And all in the name of saving a few bucks. Isn't it amazing how all of these cost cutting efforts by UHC came about right at the time a certain national health care program was being put into effect? If you like your coverage you can keep it my ***!

In the end, I am still on Rebif, still getting my copay assistance from the drug maker, and still healthy (although my recent bloodwork showed some evidence that the Rebif might be impacting my bone marrow and blood counts), so I have won the battle for the moment. But I don't have any doubt in my mind that the accounting weenies at UHC have their best and brightest furiously looking for another creative way to force me off of Rebif and onto something else or to force me to pay more for my Rebif.

If I can find a way to do it, I will be getting off of United Healthcare next year, but it might take changing jobs to do it. Which I believe is the goal UHC was seeking all along. If they can "encourage" those of us taking really expensive medicines for chronic conditions to "choose" other insurance companies by making our lives miserable, then it helps them keep costs down. The new law forces them to accept us as patients even with pre-existing conditions, but it doesn't force them to treat us well. If they abuse us and make it extremely difficult to get the care and medicines we need, and we go somewhere else as a result...it is the same end result for them as if they had denied us coverage for having a pre-existing condition.

Sheese TX, what a nightmare!!!

In the end it's all about the money isn't it. Who cares what happens to the patient, we have our $$$.

I currently take baclofen 3x a day and zanaflex at bedtime. Hoping to get into physical therapy again, until then I adore my tens unit. But there's still just a ton of pain for all that. Granted I have a multitude of soft tissues injuries, from the toes to the pinkies it seems,where the muscles have ripped my body asunder.

Personally I'm not quite convinced it's just nerve pain from MS, but the docs seem to think so. Which is why I'm wondering about non-narcotic alternatives. Thanks to the tendonosis in my ankles I can't take NSAIDs or I simply can't walk and the pain is expounded. But that leaves the rest of the injuries that might benefit a bit from them SOL.

Of course I might run into the same issue with PT, last time I did any for the legs I got kicked out since they nearly did succeed in crippling me completely. Ah the joys of long-term issues without answers. Thankfully that is finally over, now if ready for them to put me under a knife or something to fix some of these

Starznight, PT can be exactly the wrong thing for some people. The physical therapists are supposed to be trained to sort out those who will benefit from PT from those who won't, but of course they're not always accurate.

TxBatman, insurance companies must be even more eager to tighten those purse strings than Medicare/Medicaid, which is known for wanting to economize in every possible way.

For the 6 years I was on Avonex or Copaxone (first one, then the other), every cent of it was covered by Medicare/Medicaid, and I probably shouldn't have been on either one of them because I have SPMS and have had it since at least 1980. Those drugs aren't known to have any benefit for people like me, but a lot of neuros firmly believe that doing something is better than doing nothing, and Medicare/Medicaid didn't mind paying for it.