Oh goodness! Jim is on Zocor too and has been having horrible leg pain and spasms. We never thought about Zocor, whoa! He even started a new med to help with the pain. My goodness, I wonder? I think it's mainly a concern because this can be a sign of kidney damage. I didn't see the rare symptoms though. So far Jim's kidney functions are fine but if a rare side effect is muscle pain it does make you wonder. :confused: I just know if I was to say to his doctor it could be the Zocor he'd say it's Jim's ms. He may be right, who knows since his kidneys are fine.

BFF,

It wouldn't hurt to ask Jim's doctor about the Zocor. I never thought about it until yesterday. Today is my first day without it and I can't tell any difference but I would imagine it will take a while to get out of my system. I've been drinking water like crazy to flush my system and my kidneys are working just fine.

My PCP's office didn't call back which is very unusual. I left a message for her nurse and told her I stopped the Zocor and my Neuro wanted me to let her know about my thigh problems. I will call again tomorrow and ask the nurse if I should come in before my appointment on the 25th.

My PCP is in practice with her husband so if I need to go in, I can see him.

This is my third day off of Zocor. The swelling in my thighs has gone down dramatically! I am not having as much nerve pain so I think the swelling must have been putting pressure on the nerves. The Gabapentin is also helping a lot.

I am not sure that my problem is from Zocor but I can't believe how much better I am doing after stopping it. I will see what my PCP thinks when I see her on the 25th.

I have dropped 4 pounds since Wednesday so that's definitely water weight. I was really stunned when I saw my Neuro July 29th and had gained 10 pounds. I'm sure not all of it is water weight but some of it has to be.

I'm just trying to keep my legs elevated and drinking lots of water. We will see but I'm thinking I had a reaction to Zocor. Sure is strange that my problems started after my Avonex injection 4 days after starting Zocor.:confused:

Me thinks it's not so much a coincidence, Becky..:)

Good for you and I hope you continue to feel better.:hug:

:highfive: This is GREAT news, Becky!!

WOOHOOOOooooo :Dancing-Chilli:

Keep up the good work. :D

Cherie

Me not tink so either! Becky, so glad you're feeling better!

Thank you Sally, Cherie and Beary!:hug::hug:

I don't think it's a coincidence either! It will be interesting to see what the doctor thinks. Every doctor has a different opinion. I will go with what my Neuro thinks. I am not going back on any type of cholesterol meds and that's a promise unless they are a totally different kind and are not a statin drug.

I had to go to my Cardiologists office this afternoon to fill out paperwork for my heart medication that is provided free by the drug company. He is the doctor that replaced my pacemaker and has only treated me for that and the arrhythmias.

The doctor wasn't in but his nurse looked at my legs. She said she could see what I was talking about but the Zocor should be out of my system by now. She said it clears the system in one day.

I told her I kept taking it and giving myself the shots for 3 months. She said it was something that my Neuro and PCP should treat. She said it very well could be the Zocor but she wasn't sure. She said there was not a treatment that she was aware of other than stopping the medication.

So, I will hopefully keep getting better and the swelling will keep going down. I have a large area on the outer side of my right knee that is completely numb and has severe nerve pain. This may not go away completely but it sure is better. :):):hug::hug::hug:

I am so glad that you are doing better Becky! Keep it up! :hug:

I am so happy your feeling better! :hug:

Becky, I'm so sorry I haven't checked into this thread for a long time! :o I hadn't realized what a bad time you've been having. :hug:

Happy you are able to see some improvement by going off Zocor.

I hope you continue to improve and find the combination of meds that are best for you. :hug::hug::hug:

Twink,

I'm doing better but don't know what to expect from this mess!

My Neuro thinks I may have some permanent damage and I hate to think that is true. The swelling in my thigh is so much better but is still pretty bad at the top of my knees. I still have numbness on the top of both thighs and the outer side of both my knees. The right side is worse and can not be touched. The nerve pain is still there but is much better since I am taking Gabapentin. I will just have to wait and see and hope for the best.

Thank you Friend. I will be fine.:)

Hugs,
Becky:hug:

Well, here is some exciting news on this gloomy thread.

I Won $20.00 on the lottery tonight!

Woohoo Becky!!

Yay for the lottery, boo for the pain! I'm choosing to still be hopeful that this will resolve. :hug:

Whatchu gonna buy? :D

I gallon of gas?..:D:D

Is it that cheap again? :rolleyes:

Cheryl,

You wouldn't believe how excited I was to win $20.00 last night.:p:p I had the powerplay and one number. I'm rich!!!!:D:D:D

Beary,

I'm trying to be positive about this thigh mess too.:D:p:p It's just kinda hard sometimes, cause it hurts.:( I'm excited about the lottery.:D I love playing it and $20.00 is huge for me. lol:D

BFF,

I'm going to buy another lottery ticket. LOL:D

I buy one ticket for 10 plays which is about a month and then get excited every Wed & Sat night when they do the lottery.:D

Maybe one day I will be a hundredaire!:D:D I do not give a crp about being rich but would like to win a little bit more!:D

Sally,

Don't need any gas for the car!:p:p

I don't drive often and everything is so close to me that I am on my 4th tank of gas for the year!! For real!!!:D

There are a few good things about being on SSDI, don't have to buy gas, eat out for lunch everyday or buy work clothes.:p:D

Dang Guys,

I just thought of something! If this problem is from Zocor and not the Avonex needle, I am going to have to call that snotty woman back and eat crow!!!

YIKESSSS!!!!!:eek::eek::eek::eek:

HAHAHAHAHAHA!!

I was thinking about the same thing, Becky . . . but I wasn't gonna' say anything. :p

Cherie

Hold off before you do Becky. You want to know 100% what caused the problem. You know the only way to know for sure is to start taking the shot again but I am not sure if your willing to do that just yet.

Let's just say it was both! lol

Cherie,

It just hit me that I might have to make that call. Maybe I can talk to someone who is nice this time.:)

BFF,

Don't worry, I am in no hurry to call Avonex.:p This may be one of those mysteries that does not get answered. I am sure it is Zocor but I will see what my PCP and Neuro say. It was the only new med I started and 4 days after my shot reaction happened. I was doing just fine on Avonex for 9 months until then.

My Neuro said it was not the Avonex but the needle that cause the damage. Now that Zocor is in the picture, and I have stopped it, that's another story.

My thighs are better but they are both so screwed up from this reaction that I can't imagine taking another shot in the thigh.:(

The damage is the lower 2/3rds of my thigh to the top area of my knees. They are going to have to heal a lot more. They are both still swollen and hurt to touch. Not as bad since I stopped the Zocor but they are no where near normal. The thought of having any type of shot in them is not going to happen anytime soon as far as I'm concerned.:eek:

Hugs,
BFF:hug:

Feel Better
 

I hope you feel better with the new pills....I am new to MS,...but by reading the posts, I can prepare myself and condition my mind to it. Am learning a lot from this site --real people sharing the dilemma encountered with MS...

tjulio,

I'm glad you found NT. It's a really good place to learn about MS and how it affects all of us so differently. Try to keep positive as much as you can when reading the posts. If you get overwhelmed, just go to the game board and play for a fun time.:)

I am feeling a little better with the new pills. I see my doctor Monday and will probably get some new pain meds. I don't see my Neuro again until October so I don't know what she will do. It is just a freak thing that happened to me.

How long have you been diagnosed?

Thank you for your good wishes.:)
Hugs, Becky:)

I saw my PCP this afternoon and she doesn't know what to think about my thighs. She said she had not seen a reaction like this to Zocor. She said that it may be related to the combination of Zocor with Avonex or the needle going into the muscle but she did not know for sure and didn't want to try to guess what was wrong.

She told me to stay off the Zocor and we would figure out what to do about my high cholesterol when I return in 3 months for my physical. She gave me a prescription for Lortab to help with the pain and told me to call her if I needed her.

She said she thought it best to let my Neuro do what testing she thought was necessary regarding my thigh problem. My Neuro will be settled in her new office the middle of Sept. and I am supposed to call her and set up an appointment.

So, I still don't know what is going on with my thighs. They are still swollen and not so good lately since I have been active the last few days. If I do nothing, they feel better but if I am active, the swelling and nerve pain get worse. I at least have some pain pills to help with the pain.

I was THAT close to going on cholesterol drugs, if I couldn't get it in check with diet. Instead I went on LDN, and my cholesterol has been in the normal range since . . .

My doc said "keep doing whatever it is that you are doing", and I said "I intend to". ;)

Cherie

Cherie,

This was my first time on cholesterol medication and it lowered my cholesterol to normal in 6 weeks. It must be powerful stuff because it was an enormous drop in a very short time.

I had tried non flush Niacin and it worked really well for me. I got side tracked and ran out and stopped using it and my trig & cholesterol went right back up. I got back on the Niacin and took it everyday for 4 months and my trig went down but cholesterol went up. Weird! That's when my PCP put me on Zocor.

I don't know for certain that Zocor has caused this problem but I can't imagine what else it would be since Zocor has muscle and nerve side effects. It's too much of a coincidence that my reaction started 4 days after I started Zocor.

I hope my Neuro can get this straightened out when I see her in a few weeks. I have been massaging my thighs today to try to get the fluid moving out.

When I went to PT before I had back surgery, they massaged my back trying to move the fluid and it didn't work. I thought maybe it might help my thighs so I'm trying it even though it hurts, maybe it will help. I'm not going overboard on it but am going to see if it makes any difference in the next day or so.

I also printed out some info that Twink posted about LDN and I am going to take it to my Neuro to see what she thinks about it. I just can not imagine going back on shots.

I am in worse condition now than I was a year ago before I started the shots because of the shots. This was my first time on DMD's and I have had MS since 1992. I'm not real happy right now to be dealing with this along with the MS problems.

Today has been my best day since this problem began.:)

I don't know if the massaging has helped but don't think it has hurt either. I am now taking pain pills along with the Gabapentin.

I have been off of Zocor for 2 weeks so I would think that it must be completely out of my system now.

Whatever it is that is helping is fine with me to have a little relief from the pain.:p

I seem to have come to a halt in the healing in my thighs. The shot area in the middle part of my thighs is dented in all the way across and is not swollen anymore but is very sensitive.

I still have tightness and swelling in the lower part of my thighs and the very top of my knees. The nerve pain is in the lower part of my thighs and goes down towards the side of the outer side and both sides of my knees. It is much worse on the right side where the reaction first began but it just plain hurts like crazy.

I am going to try to call my Neuro next week to see if she is set up in her new office. I may need a higher dose of Gabapentin to help with the nerve pain. I'm not going to wait until the middle of the month since she may be able to increase it over the phone. I need to get in to see her as soon as possible since I haven't seen her since I remembered I forgot to tell her about the Zocor.

My thighs look so much better than they did but I am still having so much pain. I have had a couple of good days but way more bad days than good.

was hoping for a better saturday night report, I am sorry Becky:hug:, there is not a chance of pinch nerve somewhere, dangit that sucks, any suggestions from your Neuro?

I am sorry friend :hug:

Frank,

Thank you for your support.:) I was sure hoping this would get better and go away. It is better but not gone. I guess I'm just upset about having a new problem and tired of being in pain.

Lortab and Gabapentin are all the help I have for this. I don't think there is anything they can do for muscle and nerve damage other than get the right pain meds.

Hugs,
Becky:hug::hug:

My Neuro is all settled in at her new office. I have an appointment Tuesday, the 16th so hopefully I will find out what she thinks is behind this muscle and nerve damage.

I am going to ask her about increasing the Gabapentin for the nerve pain. I don't know about increasing the Lortab because I don't want to walk around drugged out all the time.:p

I'm anxious to see what she says. I don't know what I am going to do about another DMD. I'm going to bring up LDN and see what she thinks. I do not think there is any way that I can have shots in my thighs. We talked about me starting Copax at my last visit but I just don't think that will work with the damage that I have.

I don't know. I will post after my visit.:hug:

Becky, maybe ask her about trying patches on the legs like Lycra or something to help relieve the pain. I am sorry your still hurting. I gave Jim his Beta shot (only 1/4th dose) the night before last and his legs tightened up so bad the next day. I am now wondering if he's developing some sort of immunity to these shots. It's going on 15 years that he's been shooting up with DMD's. But, we really wont know until he gets over these UTI's to see what is going on.

:hug: BFF!

I did some searching for Becky...
 

and found that Avonex can cause elevated CPK levels.

Zocor can also raise these. Combined? Well, not good.
When CPK gets dangerous you will see a darkening of the urine. This is the byproducts from destroyed muscle being excreted thru the kidneys. When this stage is reached, there is often kidney damage, or frank failure in some extreme cases.

from patientsville.com:
http://patientsville.com/medication/...de_effects.htm

and this one
http://www.msassociation.org/news_ce...asp?a=summer07
on Rebif (very similar).

CPK is also elevated in mito disorders, and CoQ-10 is given
to improve this. Statins like Zocor, also can elevate CPK because they block CoQ-10 synthesis that our livers make for us.

While CoQ-10 is iffy still for MS in general, if you use drugs that destroy or block it, then you should consider supplementing with it.
http://www.lef.org/protocols/neurolo...lerosis_02.htm

I would think at least 300mg of softgel enhanced absorption type or 50-100mg of the newer actived form called Ubinquinol.
Both are costly. But since CoQ-10 is a natural substance we all make and use, and since it protects mitochondrial functions, it seems like a good candidate for Becky.

mrsd,

You certainly have given me some good information. I really appreciate it.:)

I did have 2 UA's done in June. One came back 6/5 as a UTI but I didn't go on antibiotics because it was overlooked. The second one came back as no UTI but abnormal WBC. All I did was drink a lot of water. That's a little suspicious to me.

My PCP just did the Lipid Panel on 6/5 when I had been on Zocor for 6 weeks. My cholesterol was 274 and 6 weeks later is had dropped to 183! That is a huge drop!!!! That is some powerful drug to drop it that much in such a short amount of time!!! I was so excited that it worked so well but now I'm scared of what it did to my body when dropping my cholesterol so fast.

I haven't noticed any darkening of the urine but I will make a point of checking to see if I have any. I have so much more fluid in the last few days for no apparent reason. My thigh swelling was almost gone but now it is worse again, not like it was but worse. I have no idea why.

I am certain my Neuro will figure this out. I am very anxious to see her and see what she says about all of this. Her nurse knew the minute I told her I forgot to mention Zocor during my visit.

Thanks so much mrsd.:hug: