if not steroids, what helps recovery?
 

hi everyone! i have been plagued with "relapse" after "relapse" since last december. i went inti the hospital for iv steroids in may, and was recovering for about 2 weeks before another relapse, then another round of steroids, about 3 weeks of strength returning and rehab, rinse and repeat every 3-4 weeks. coupled with multiple falls in my old apartment stairwell and then falls in my new apartment bathroom, which brought on sciatica in my right buttock/leg, which also happens to be the leg affected each time i have a "relapse".

i have been told that steroids are not a long term solution, but its the only thing that helps me recover to nearly normal-for-me baseline of being able to use a walker for anything more than a few steps. currently i am unable to even use my wheelchair for more than around my tiny apartment, as my arms lack the strength to ambulate the chair down the hallway to the elevator.

my question is, if i cant have steroids , how am i to recover? i start tysabri december 4th, but i know the ty isnt going to change my current state, and my baseline has gotten worse each time, this last time i was discharged from rehab center having "reached full potential" at which point i was confined to a wheelchair xcept for 10 or so steps, and about 1 month later 1 can take about 5 steps and am in extreme pain most of the time. i am on 80mg of baclofen a day, 2700mg of gabapentin per day, 10mg amitriptylin, and taking advil and vicodin to help with the pain...

when i first was diagnosed, i was on a walker for about 6 months, but i was never in the pain that i am in now, or this constant rollercoaster of extreme right sided weakness, steroids, recovering for a few weeks, extreme right sided weakness, etc and so on.
its getting hard to see the light at the end of the tunnel! what other therapies might help beat this thing back? :confused:

Hi Clarkstar,

I have little experience with the heavy hitter meds, as I am sort of looking down a similar road as you at this point; but others here do so hopefully they'll chime in.

You might consider adding LDN to the mix. It is not a cure, does not make Sxs magically go away, or anything super specific along those lines.
What it has done for me and some others, is take the edge off of some of the Sxs, and sometimes that can make all the difference.

I've been on it for over a year and know that if I go off of it (have done so a couple of times), that within two days I feel like I am in a flare and that it takes another 3 or 4 days to get "normal" again.

Wishing that you find something that works for your situation.

With love, Erika

I'm not on Tysabri, but I know several MS patients who are or were and the positive effects were amazing. One woman I know has been on it much longer than advised, but she refuses to give up on it because she could hardly walk before Ty and she is doing so very well on it.
Steroid use in the long term destroys organs…so many neuros are reluctant to use it very often. I've only had one set of infusions from mine since starting with him 4 years ago, whereas the neuro before him had me on monthly infusions, which shocked my present neuro..
Also, the pain may be caused by spasticity…are you on muscle relaxants like zanaflex, baclofen or clonepam? It might help reduce the tightness and pain.

I hope that once you're on Ty you'll notice an improvement. MS can be very challenging to say the least...:hug:

Thanks for replying! i thought LDN was a DMD in of itself, can i take it in addition to the tysabri? :confused: *heads to LDN sticky thread*

Good question and I don't know? I wouldn't think so, since it is such
a low dose Naltrexone, but please ask your Doc.:cool:

In short, the answer would be that it's a wait and see kind of thing.

Steroids don't always shorten a flare or take care of all of the symptoms of a flare. It took me a year to be able to walk somewhat normal again. I still have a bounce in my gait but at least I can walk and only need my cane when I walk longer distances and use the the scooter in the stores.

I have had other flares that responded well to the steriods and I felt better within a week or two. But, my neuro did say that if it is a spinal lesion flare, steriods are not as effective, if at all, and he doesn't use them on spinal lesion flares. I just have to wait those ones out the best I can. Medications help. I can't tolerate baclofen or Valium but Ativan helps as does the gabapentin.

I take A LOT of Epsom salt baths during flares and that seems to help as well. Some flares really mess up my stomach. I'm not sure if it's related to the amount of pain I'm in or the nerves that go in to my stomach, which are damaged, being part of the flare. At any rate, I drink lots of shakes, smoothies, etc. because digesting the food is difficult during those spinal lesion flares.

I am not on a DMD. Apparently, I am allergic to the amino acids and can't tolerate them. So, we are waiting and seeing what happens. Should I have major changes in lesion load and/or symptoms, we are going to look at what options are available to for me and find one that will work well.

I'm glad you are starting to improve. This flare really hit you hard and I'm so sorry about that. Hang in there!:hug:

My neuro is pretty closed minded and said no ( actually her nurse did ) to LDN . The nurse also said I need to lose weight as it was throwing my balance off. She recommended bariatric surgery which I don't really want and also said I should move to assisted living. Really I think if I got a smaller wheelchair that would fit my bathroom it would not be so dangerous .right how I can't move my right leg unless I pull it with my hand by the sock so walking in and out of the bathroom is a huge problem . This is the same doctor that said there's no such thing as medical marihuana so 2 strikes on her at this point . The nurse did say I could ty my gp for the LDN . She claimed it was no benefit to ms as it was a mood enhancer only...

i managed to get a wheelchair that will fit into the bathroom. its still quite an ordeal to use the toilet, i ended up using a urinal last night/this morning. i can barely stand at this point so it takes a long time to stand and pivot to the toilet. my right leg is almost like its dead, its never been this bad before. cant get steroids, cant get ldn, not too happy... :rolleyes:

Sounds like you could use a new, more compassionate Neuro.:rolleyes:
Glad you found a WC that fits into your bathroom. My scooter
just fits.:eek: Do you have any grab bars to help you to the toilet?
I have one on the tub and one on the wall, right beside the
toilet and I use both of them.:cool:

I hope the Tysabri gives you strength..:hug:

took me a while to find neuro that would prescribe LDN for me - old neuro was just that - too old - all he could suggest and did repeatedly was copazone, which I took for a year and went downhill even faster - did originally take steroids and was unaware of their long term side effects - I am aware now, almost 40 years later - LDN does take the edge off and helps me sleep - (first read about it here on NT from Sally) - also am taking evening primrose oil, vitamin D3 and the B vitamins - had forgotten that how much they help

I can't take steroids anymore but to get past a flare I do as little as possible physically, sleep and rest a lot and eat healthy. MS flares are typically caused by some sort of inflammation in the system from most of what I have read. So if you can google anti-inflammatory foods you will find healthy things that will promote healing in your body. :hug:

i have a grab bar above the toilet, not much help though.

i ended up going to the er after i could not get off the toilet, and called the fire dept. i was admitted, and my local neuro had me get a brain mri. he told me the results were bad, and started me on iv steroids. i considered the "bad" a good thing, as i really wanted/needed iv steroids. so here it is 2 + weeks later and i'm just regaining my strength. hope it stays longer this time. to be honest, i'm not concerned with the long term steroid effect. i'd rather get steroids every 2 months, and not be falling or at risk, than worry about weak bones in 10 years...

btw, the mri said i had "innumerable" lesions on and in my brain...

Clark-

I am glad that you got some treatment and are home now.

I hear you about the steroids. At a time when I needed them frequently, my then MS Neuro put me on a gram of Solumedrol IV over 2-3 hours once a month. That worked and got things controlled so after 10 months of that I went on my first DMD.

Wishing you improvement,
ANN

actualy i'm in a nursing home right now, still unable to stand . but i'm definitely 100x stronger than 2 weeks ago, i'm so grateful for the steroids. i have not told my neuro in detroit, i'm afraid she may drop me (she;s the one who put me on tysabri). her nurse said no responsible neuro would keep prescribing steroids. my local neuro said he would put me on them if he found active lesions, which he did...

meanwhile this nursing home is plagued with short staff, and good aides are few ad far between...

That all sounds really serious Clark.
Sorry that you are going through such a rough patch, especially at this time of year. Do you have anyone visiting you in there...hopefully someone who can keep an eye on things, and be an advocate (Pitt bull terrier) if necessary, so that you get the care that you need.

Wow...would your MS neuro actually drop you because you taking treatment that doesn't agree with her protocol, even though you have clearly thought about it and made a decision about it?
That's harsh.

Keeping you in my thoughts and prayers for a fast recovery.

With love, Erika

So sorry you are going through this rough time, clarkstar. Your original question was about what, other than steroids, help in a flare. You might ask your neuro about IVIG (http://emedicine.medscape.com/article/210367-overview). It's the only thing I can think of that is used specifically to treat flares other than steroids.

Because my body does not handle steroids, when I had really bad flares, they used plasmaphoresis a couple of times to reduce the inflammation. They basically take out your white blood cells and replace them with donor ones. It did work and gave me a break somewhat, and was better than nothing.
Unfortunately, it doesn't work for SPMS or PPMS according to my neuro.

With love, Erika

Sorry, wish I had some answers for steroids alternatives. I had them, once for an MS flare, and they didn't do anything for me. Sending some healing vibes your way :hug:

well i am about 3 months post-steroids and am doing great! got rid of the wheelchair a few weeks back, can drive again, and saw my neuro doc in detroit(who prescribed the tysabri), and she did not have a problem with me getting steroids to get me out of the relapse, which makes me think the nurse was the problem, most likely not consulting with the neuro dr. so if i have to talk to the neuro doc again, i won't bother talking to the nurse, i will only speak to the doc...
i had a bout of uti, now i have a kit to perform self caths if i feel i am not emptying my bladder fully

now back to working on my sciatic nerve problem :)

Glad to hear you're doing so much better! :)

Good news Clarkster..:hug:

Glad to hear the good news, Clark.

I'm happy for you.:)
ANN