Aa
quix
Need your help,with you having MS,I just finished or thought I was through a relapse.
I'm suffering from terrible spasms ,difficult with balance issues,loss of peripherial vision.Had a difficult time at PT today,so they called my neuro.
He's thinking that I'm hitting a 3rd relapse since April.I just finished a 5 day solu-medrol IV therapy and still on oral prednisone taper off.
I'm thinking it's all the meds for spasms(zanaflex,baclofen,valuim and quinine) and at night they added ativan so I can sleep.Plus I'm on pain meds to counter act the spasm pain.
I'm also on Chantix,new med to stop smoking,its been great .I've been smoke free for 12 days and have no cravings to have a smoke.
Researching all these meds,muscle weakness is a primary symptom.
Neuro wants to admit me and do a different steroid treatment.There ain't no blooming way.After researching high doses of steroid use,the second most common side effect is muscle loss.The same with chronic spacticity and myoclonus,it can cause muscle loss do to the muscles never relaxing.
I need your opinion,I still have 13 days oral steroids and I'm gonna try to taper off quickly,still at 40 mgs a day.Is this wise?
I need my legs back.I do PT 3 days a week,so to the fitness center ever morning and ride there bike and walk the treadmill and use the arm machines and a couple of the light weight leg machines.I cut out caffine as I know that can cause excitability in the nerves and muscles,I stopped smoking to get more oxygen to the blood stream to help the legs.
I honestly feel I'm losing this battle over my legs and the muscle loss is not from disuse.I clean my house,do yard work and all.I honestly think its from all the meds.
I do wear a AFO(left leg) and a AFKO(right leg) for support and it helps with the drop foot and the right leg from kicking out wards.
I know this is long winded , but I'm frustrated and getting scared over the idea that the legs are not doing that good.
I don't want any other steroid options.If this is another relapse then apparently the rebif is not slowing the progression down.
Thanks for any advice.
I'm suffering from terrible spasms ,difficult with balance issues,loss of peripherial vision.Had a difficult time at PT today,so they called my neuro.
He's thinking that I'm hitting a 3rd relapse since April.I just finished a 5 day solu-medrol IV therapy and still on oral prednisone taper off.
I'm thinking it's all the meds for spasms(zanaflex,baclofen,valuim and quinine) and at night they added ativan so I can sleep.Plus I'm on pain meds to counter act the spasm pain.
I'm also on Chantix,new med to stop smoking,its been great .I've been smoke free for 12 days and have no cravings to have a smoke.
Researching all these meds,muscle weakness is a primary symptom.
Neuro wants to admit me and do a different steroid treatment.There ain't no blooming way.After researching high doses of steroid use,the second most common side effect is muscle loss.The same with chronic spacticity and myoclonus,it can cause muscle loss do to the muscles never relaxing.
I need your opinion,I still have 13 days oral steroids and I'm gonna try to taper off quickly,still at 40 mgs a day.Is this wise?
I need my legs back.I do PT 3 days a week,so to the fitness center ever morning and ride there bike and walk the treadmill and use the arm machines and a couple of the light weight leg machines.I cut out caffine as I know that can cause excitability in the nerves and muscles,I stopped smoking to get more oxygen to the blood stream to help the legs.
I honestly feel I'm losing this battle over my legs and the muscle loss is not from disuse.I clean my house,do yard work and all.I honestly think its from all the meds.
I do wear a AFO(left leg) and a AFKO(right leg) for support and it helps with the drop foot and the right leg from kicking out wards.
I know this is long winded , but I'm frustrated and getting scared over the idea that the legs are not doing that good.
I don't want any other steroid options.If this is another relapse then apparently the rebif is not slowing the progression down.
Thanks for any advice.
Oh..., Nevermind. :)
The taper off has been gradule after the IV infusion of a 1000mgs the neuro tapered me down with 125 mgs for 7 days and have gradually tapered and currently at 40 mgs for another 4 days and then down to 30,20 ,10 and then 5.
My pharmacist has it all marked out on a calander sheet so I'd remember and I can just cross off the days as I go.
I knew about the adrenal crisis,it was just a shot in the dark.With being on the steroids have terrible insomnia and don't wanna take any meds to help that,especially since I'll be off these steroids in 13 or 14 days.
But boy have I had energy.I have gotten things done that have been put on a waiting list.
And my appetite has increased,but no weight gain.I could use an extra 10 pounds.
Thanks for the advice
My pharmacist has it all marked out on a calander sheet so I'd remember and I can just cross off the days as I go.
I knew about the adrenal crisis,it was just a shot in the dark.With being on the steroids have terrible insomnia and don't wanna take any meds to help that,especially since I'll be off these steroids in 13 or 14 days.
But boy have I had energy.I have gotten things done that have been put on a waiting list.
And my appetite has increased,but no weight gain.I could use an extra 10 pounds.
Thanks for the advice
There is no exact way to know, but 40mg of Medrol(?) is a potent dose. By stopping suddenly you risk adrenal crisis (sudden shock ) or a rebound of symptoms. Your adrenals are likely in total hibernation. In my practice I would taper over the next two weeks 30mg x 4 days, 20mgx 4 days, 10 mg x 4 days. Then, maybe 10 mg every other day for 8 days or so. (what size tablets do you have?) Also, I made up that schedule. (lowering every 3, 4, 5, 6 days - it's fairly arbitrary)
Now, I shouldn't have given you this info. This is the closest I have come to practicing medicine. So I am not recommending that you do this (okay?) But if you were thinking going cold turkey, this is safer. I gather your doc was going to have you take the 40mg for the whole month, then just stop? That makes me nervous, but I suspect he has a heck of a lot more experience than I with prolonged high doses in adults.
If that is what he has been doing, it is "possible" that your symptoms have been "rebounding". This happens to some people (and I'm speaking from my knowledge of asthma, eczema, lupus here) to get a full force return of symptoms if steroids are removed too fast. I wondered if that was happening to you. Sometimes it can be avoided by a slow, TRUE taper. 40 days at 40mg then off is NOT a taper.
I wasn't suggesting that you stop the Chantix. I agree, that your quitting smoking is paramount. But, if you know some meds waste electrolytes, you can replace them.
I'm going to post this and then go look up the consequences of suddenly stopping long term steroids. You've only been on them for 3 weeks or so this time, but the last month-long use was very recent. Quix
Now, I shouldn't have given you this info. This is the closest I have come to practicing medicine. So I am not recommending that you do this (okay?) But if you were thinking going cold turkey, this is safer. I gather your doc was going to have you take the 40mg for the whole month, then just stop? That makes me nervous, but I suspect he has a heck of a lot more experience than I with prolonged high doses in adults.
If that is what he has been doing, it is "possible" that your symptoms have been "rebounding". This happens to some people (and I'm speaking from my knowledge of asthma, eczema, lupus here) to get a full force return of symptoms if steroids are removed too fast. I wondered if that was happening to you. Sometimes it can be avoided by a slow, TRUE taper. 40 days at 40mg then off is NOT a taper.
I wasn't suggesting that you stop the Chantix. I agree, that your quitting smoking is paramount. But, if you know some meds waste electrolytes, you can replace them.
I'm going to post this and then go look up the consequences of suddenly stopping long term steroids. You've only been on them for 3 weeks or so this time, but the last month-long use was very recent. Quix
By no means did you let me down,I do take potassuim pill (script from GP)
as he is not thrilled with the prolonged use of the steroids.
No, I was not disagreeing on the other meds as I know the side effects of each one can be muscle weakness.
I have full intentions to stay on the chantix as in not smoking has to out weigh the nicotine abuse I have abused my body with for 23 years.I did read in the chantix paper work about it can cause muscle cramps and joint pain,plus increased glucose levels.I'm already taking glucophage because of the steroids.This will be a short term med only 30 days yet on it.
Once I'm off the roids sugar levels go back to normal.
Yes,if i advoid the neuro,I don't have to reject his offer of a different steroid and I am not going back into the hospital for a 5 day stay.A vacation I could use but not at no hospital.They have called twice,I'm safe tomorrow his office is closed on Fridays.I'll respond to them on monday.
What adverse effects would I have if i just stopped the oral prednisone I'm at 40 mgs.
as he is not thrilled with the prolonged use of the steroids.
No, I was not disagreeing on the other meds as I know the side effects of each one can be muscle weakness.
I have full intentions to stay on the chantix as in not smoking has to out weigh the nicotine abuse I have abused my body with for 23 years.I did read in the chantix paper work about it can cause muscle cramps and joint pain,plus increased glucose levels.I'm already taking glucophage because of the steroids.This will be a short term med only 30 days yet on it.
Once I'm off the roids sugar levels go back to normal.
Yes,if i advoid the neuro,I don't have to reject his offer of a different steroid and I am not going back into the hospital for a 5 day stay.A vacation I could use but not at no hospital.They have called twice,I'm safe tomorrow his office is closed on Fridays.I'll respond to them on monday.
What adverse effects would I have if i just stopped the oral prednisone I'm at 40 mgs.
I just looked up Chantix. In the "infrequent" category of metabolic side efftects they do list muscle pain, cramps, renal stones (didn't say what salt) low potassium and increase in glucose levels.
Would you like me to look at your other meds to see which one are more likely to muscle effects?
Quix
Would you like me to look at your other meds to see which one are more likely to muscle effects?
Quix
One of the other immediate side effects of steroids can be electrolyte imbalance though sodium/potassium, but definitely also through calcium/magnesium. When I was getting 1000mg/day I definitely had more generic cramping. We know that steroids cause urinary calcium wasting. I'm just wondering if any of the increased spasticity you're experiencing is a need for increased supplemental potassium, calcium and magnesium. I have increased mine.
In fact, the cramping was getting severe enough that I went back on the OTC potassium supps. They're so weak you have to take a handful, but in the absence of kidney disease they're safe. Do you want any more info on these? (like the best kind of magnesium to take or how many of the potassium gluconate?)
I DID agree with you the other meds cause "weakness", but I don't think they cause muscle loss. Were you disagreeing with that? Would you like me to research that further?
I see, if your MS Neuro doesn't hear from you, he might not come a'pushing more roids?
I feel like I let you down. Quix
In fact, the cramping was getting severe enough that I went back on the OTC potassium supps. They're so weak you have to take a handful, but in the absence of kidney disease they're safe. Do you want any more info on these? (like the best kind of magnesium to take or how many of the potassium gluconate?)
I DID agree with you the other meds cause "weakness", but I don't think they cause muscle loss. Were you disagreeing with that? Would you like me to research that further?
I see, if your MS Neuro doesn't hear from you, he might not come a'pushing more roids?
I feel like I let you down. Quix
I was doing really good with my legs until they done the steroids infusion therapy.Come day three pain sat in and the spasms greatly increased.The same thing happened in March.
No my physical therapist is not knowledgable in MS.She didn't know that spasms are part of this disease.They just wanna work on balance issues which is okay,but there's bigger issues that need dealt with.
Did I respond to the steroids,yes, vision improved and some of the numbness and tingling has left.But the steroids left me with the muscle loss in my legs.
I don't stay down.I stay on my legs as long as I can.I do my house work,I mow the yard all that.I try to get some evening walks in or walk the treadmill everyday.So I don't sit around.
I do have days where walking is a great struggle but I still force myself to do it.
I have been on rebif starting 5 th month and no I'm not doing the double dose for the progression.
I'm just frustrated at the idea of the extensive muscle loss to the legs and knowing it'll take months to rebuild.
When I go to the fitness center,one day I'll do weight training,ride the bike and do the treadmill.The next day I only do the bike and treadmill to give my muscles time to heal and strenghthen.But I stretch 5-6 times a day to keep the tendons from shortening.I am aware of over exercising causing strength loss.Your PT is correct.
At the present time I am advoiding my MS Neuro,I am not doing anymore steroids of any kind.
The other meds do cause weakness and I'm gonna try to work myself off the majority and see.
Thank You for your reply.
No my physical therapist is not knowledgable in MS.She didn't know that spasms are part of this disease.They just wanna work on balance issues which is okay,but there's bigger issues that need dealt with.
Did I respond to the steroids,yes, vision improved and some of the numbness and tingling has left.But the steroids left me with the muscle loss in my legs.
I don't stay down.I stay on my legs as long as I can.I do my house work,I mow the yard all that.I try to get some evening walks in or walk the treadmill everyday.So I don't sit around.
I do have days where walking is a great struggle but I still force myself to do it.
I have been on rebif starting 5 th month and no I'm not doing the double dose for the progression.
I'm just frustrated at the idea of the extensive muscle loss to the legs and knowing it'll take months to rebuild.
When I go to the fitness center,one day I'll do weight training,ride the bike and do the treadmill.The next day I only do the bike and treadmill to give my muscles time to heal and strenghthen.But I stretch 5-6 times a day to keep the tendons from shortening.I am aware of over exercising causing strength loss.Your PT is correct.
At the present time I am advoiding my MS Neuro,I am not doing anymore steroids of any kind.
The other meds do cause weakness and I'm gonna try to work myself off the majority and see.
Thank You for your reply.
I, too, am really sorry about the way things are going. I've been very worried at your psots about the continual onslaught of new symptoms. I wish I knew more about this part of MS treatment. You've only been on Rebif for , what, 6 or 7 months? They told me it takes 6 to 12 months to kick in. Are you on the double dose that they have been studying for progressive disease?
About the muscle loss, yes, it is a side effect of steroids. But I don't think the other meds cause loss. Their side effect is weakness which (I think) has to do with interupting or slowing the neuromuscular signals. So they feel weak, but the effect should disappear when you stop the meds. They shouldn't cause muscle LOSS. Your exercise should help maintain mass.
Have you responded with any improvement at all on the steroids? I worried if you don't use them you will lose use of your legs and it won't matter how much muxcle mass they have. I am outside my knowledge comfort zone here.
What about some of the other treatment options for progressive disease?
Would you like to discuss any of this privately. For any topic that any of you don't want to discuss on the forum (even though we are all anonymous) any of you may email me. I have an account on gmaildotcom. My nickname is neuroquix.
Also, I have heard from my PT who specialized in MS rehab, that you can overdo exercise and actually rob yourself of strength. Is your PT person really knowledgable in this area. If not, try to get a rec from the MS docs and get a consult from someone on the topic. I'm concerned that you may be over-exercising. Also I would like to know if that info is even correct. (But, boy! did my PT seem to know her stuff!)
Well, I'm tired and can't do much more on the puter tonight. I'll check back in a couple hours. I'm on the Left Coast.
Quix
About the muscle loss, yes, it is a side effect of steroids. But I don't think the other meds cause loss. Their side effect is weakness which (I think) has to do with interupting or slowing the neuromuscular signals. So they feel weak, but the effect should disappear when you stop the meds. They shouldn't cause muscle LOSS. Your exercise should help maintain mass.
Have you responded with any improvement at all on the steroids? I worried if you don't use them you will lose use of your legs and it won't matter how much muxcle mass they have. I am outside my knowledge comfort zone here.
What about some of the other treatment options for progressive disease?
Would you like to discuss any of this privately. For any topic that any of you don't want to discuss on the forum (even though we are all anonymous) any of you may email me. I have an account on gmaildotcom. My nickname is neuroquix.
Also, I have heard from my PT who specialized in MS rehab, that you can overdo exercise and actually rob yourself of strength. Is your PT person really knowledgable in this area. If not, try to get a rec from the MS docs and get a consult from someone on the topic. I'm concerned that you may be over-exercising. Also I would like to know if that info is even correct. (But, boy! did my PT seem to know her stuff!)
Well, I'm tired and can't do much more on the puter tonight. I'll check back in a couple hours. I'm on the Left Coast.
Quix
Lynn,
I'm so sorry to hear you are not doing well. I'll be praying for you.
Jamie
I'm so sorry to hear you are not doing well. I'll be praying for you.
Jamie
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