Hi Brock,
Sorry to hear that your facing all of this right now. I just want to reiterate what others have said about the 'roids. I was able to have a nurse come and apply the IV dosages at home and was given oral pills when tapering off. As far as the steroids themselves...from what i've heard, it's not great to be on them longterm, but it's less of a problem if you're only using them once in a while.
ThinkingOutLoud
2nd Relapse in 3 months
Dignan,
I really would rather just take Minocycline. I am sure I already place a heavy load on my liver. The last time I had my blood taken, my liver enzymes were about twice the normal amount.
Also, from what I have read, combo treatments reduce minocyclines efficacy.
I have an appointment today with my Neuro's Nurse Practicioner to deal with this relapse. I am unsure of how they will handle it, but it will probably be IV steroids. I definitely want it to stop.
Aaron,
That is more bad news. I have never had any lesions on my spinal cord, bit if what you say is correct then that means that now it is spreading to my spinal cord, which I'm sure is not good.
Thinkingoutloud,
I will get on steroids asap. I think I would prefer some sort of outpatient application rather than them coming to my home. I don't want to mix my home memories with that of the memories I have when I am at the hospital, because those aren't good.
Thanks to all of you!
Brock
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I really would rather just take Minocycline. I am sure I already place a heavy load on my liver. The last time I had my blood taken, my liver enzymes were about twice the normal amount.
Also, from what I have read, combo treatments reduce minocyclines efficacy.
I have an appointment today with my Neuro's Nurse Practicioner to deal with this relapse. I am unsure of how they will handle it, but it will probably be IV steroids. I definitely want it to stop.
Aaron,
That is more bad news. I have never had any lesions on my spinal cord, bit if what you say is correct then that means that now it is spreading to my spinal cord, which I'm sure is not good.
Thinkingoutloud,
I will get on steroids asap. I think I would prefer some sort of outpatient application rather than them coming to my home. I don't want to mix my home memories with that of the memories I have when I am at the hospital, because those aren't good.
Thanks to all of you!
Brock
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-
MSresearcher
- Getting to Know You...
- Posts: 20
- Joined: Thu May 17, 2007 2:00 pm
- Location: Agoura hills, California
Brock,
It saddens me to hear your struggles. Initially I had numb legs and feet.
I had attacks every 3-4 months after my diagnoses. IV steroids helped most of the time sometimes it didn't. But normally the symptoms would subside within 8 weeks (the time it takes for the human body to naturally recover from an attack).
Sounds like the lesion(s) Could be located in the thorasic portion of the spinal cord. I had a similar lesion that produced numbness starting halfway down my forearms and went down to my pinky, ring and middle fingers.
Infections do cause relapses. When body's temperature rises over 101 you are at risk of a full blown attack or what is called a pseudo-exacerbation where when the fever gets under control the symptoms subside. I'm sure you doc warned you about heat. I always thought they meant outside heat.
So hang in there buddy!
It saddens me to hear your struggles. Initially I had numb legs and feet.
I had attacks every 3-4 months after my diagnoses. IV steroids helped most of the time sometimes it didn't. But normally the symptoms would subside within 8 weeks (the time it takes for the human body to naturally recover from an attack).
Sounds like the lesion(s) Could be located in the thorasic portion of the spinal cord. I had a similar lesion that produced numbness starting halfway down my forearms and went down to my pinky, ring and middle fingers.
Infections do cause relapses. When body's temperature rises over 101 you are at risk of a full blown attack or what is called a pseudo-exacerbation where when the fever gets under control the symptoms subside. I'm sure you doc warned you about heat. I always thought they meant outside heat.
So hang in there buddy!
DX 2002 34yold, Tysabri
Researcher,
Actually my doctor didn't say anything about heat. I've always read that, but heat usually doesn't do anything to me. I also don't think I've had a high fever for years.
Thanks for your input and words of encouragement!
Brock
Actually my doctor didn't say anything about heat. I've always read that, but heat usually doesn't do anything to me. I also don't think I've had a high fever for years.
Thanks for your input and words of encouragement!
Brock
History:
Diagnosed 06/05; Nystagmus - Right Eye: MRI Numerous active lesions
MRI 07/06 - No active Lesions
Relapsed 03/07; Right leg, numbness
MRI 03/07 - A LOT more active lesions than the first MRI
Relapsed 05/07; Both Hands, numb; Torso, numb
Diagnosed 06/05; Nystagmus - Right Eye: MRI Numerous active lesions
MRI 07/06 - No active Lesions
Relapsed 03/07; Right leg, numbness
MRI 03/07 - A LOT more active lesions than the first MRI
Relapsed 05/07; Both Hands, numb; Torso, numb
-
MSresearcher
- Getting to Know You...
- Posts: 20
- Joined: Thu May 17, 2007 2:00 pm
- Location: Agoura hills, California
That surprises me that your doctor didn't memtion that.
My Doctor said
Things to avoid:
Excessive heat (stay cool and hydrated)
Excessive stress (do meditation or some type of relaxation technique)
And MOST IMPOTANTLY!!!
AVOID SEX AT ALL COSTS!!!
Sex stimulates several processes within the body and flare ups become unaviodable.
Of Course I am just kidding but maybe you got a good chuckle out of it.
My Doctor said
Things to avoid:
Excessive heat (stay cool and hydrated)
Excessive stress (do meditation or some type of relaxation technique)
And MOST IMPOTANTLY!!!
AVOID SEX AT ALL COSTS!!!
Sex stimulates several processes within the body and flare ups become unaviodable.
Of Course I am just kidding but maybe you got a good chuckle out of it.
DX 2002 34yold, Tysabri
Hilarious! Needless to say, sex is one thing that I will not be dropping!!!!
History:
Diagnosed 06/05; Nystagmus - Right Eye: MRI Numerous active lesions
MRI 07/06 - No active Lesions
Relapsed 03/07; Right leg, numbness
MRI 03/07 - A LOT more active lesions than the first MRI
Relapsed 05/07; Both Hands, numb; Torso, numb
Diagnosed 06/05; Nystagmus - Right Eye: MRI Numerous active lesions
MRI 07/06 - No active Lesions
Relapsed 03/07; Right leg, numbness
MRI 03/07 - A LOT more active lesions than the first MRI
Relapsed 05/07; Both Hands, numb; Torso, numb
Hey--my daughter hd lesions in her brain and spine from the very beginning. No one seemed to have anything to say about that fact at all. just let her know why areas that were being affected were being affected.
I think you should try the Mino all alone. You have years to do ALL the MS drugs at one time if you need to go back to them but think you should give the Mino a shot all on its own.
Heat does not bother you? That is REALLY strange. It is one of the most common MS symptoms. My daughter ussed to suffer so bad in the summers here in SC. Now, no problems with heat at all.
Please keep us posted once you start your Mino. I will keep every appendage on my body crossed for you!
I think you should try the Mino all alone. You have years to do ALL the MS drugs at one time if you need to go back to them but think you should give the Mino a shot all on its own.
Heat does not bother you? That is REALLY strange. It is one of the most common MS symptoms. My daughter ussed to suffer so bad in the summers here in SC. Now, no problems with heat at all.
Please keep us posted once you start your Mino. I will keep every appendage on my body crossed for you!
-
CureOrBust
- Family Elder
- Posts: 3374
- Joined: Wed Jul 27, 2005 2:00 pm
- Location: Sydney, Australia
So I should probably be posting this somewhere else, but... here is what have experienced while taking Minocycline:
I decided to follow this regimen for Mino:
For the first 5 nights, i will take one 100mg dose, afterwards I will begin taking a 100mg dose in the morning and one in the evening.
I am currently on my fifth night (already took it tonight).
Considering that what I am going to say is anecdotal, take it for just that, anecdotal evidence.
The morning after the first night of taking Minocycline I noticed greatly reduced numbness in my hands and torso. I said nothing to my wife about it in fear it was all in my head. I didn't want to Jynx it. However during the evening it started to return but mainly just in my hands.
Well now, being on the fifth night, I have no numbness in my torso, at all, and currently the numbness is returning in my hands, making it somewhat difficult to type this.
This has happened each evening, the numbness returns, but in the morning, when I wake up, it is almost non-existent again.
I am also taking prednisone, but I definitely did not start having this change until the morning after I took my first dose of Minocycline and then each morning after, other wise I might say that the exacerbation is just taking its course.
I will begin the twice daily dose of Mino tomorrow. Lets see if this changes whether the numbness returns in the evenings or not. I am VERY curious.
Also, others have reported feeling really badly after taking Mino. I actually have felt really good. A noticable difference in mental clarity, for the better.
The first night I had a really hard time going to sleep though, and I was hot, even sweating. I haven't had that since the first night I took the mino. All in my head?
I can say with certainty that for me, at least for the last four days I have noticed a definite improvement in my symptoms. I noticed nothing when just taking prednisone, and I am noticing that, like I said, in the evenings the numbness in my hands only, starts to return. Somethings up.
When researching Minocycline I noticed that it has a very short metabolic half life in the human body (11-22 hours), could this be the reason for the numbness returning in the evenings? Has my body completely metabolised the 100mg dose and the effect it had on me in the morning is no longer possible in the evening????????
I'll keep all updated with my experiences.
Brock
I decided to follow this regimen for Mino:
For the first 5 nights, i will take one 100mg dose, afterwards I will begin taking a 100mg dose in the morning and one in the evening.
I am currently on my fifth night (already took it tonight).
Considering that what I am going to say is anecdotal, take it for just that, anecdotal evidence.
The morning after the first night of taking Minocycline I noticed greatly reduced numbness in my hands and torso. I said nothing to my wife about it in fear it was all in my head. I didn't want to Jynx it. However during the evening it started to return but mainly just in my hands.
Well now, being on the fifth night, I have no numbness in my torso, at all, and currently the numbness is returning in my hands, making it somewhat difficult to type this.
This has happened each evening, the numbness returns, but in the morning, when I wake up, it is almost non-existent again.
I am also taking prednisone, but I definitely did not start having this change until the morning after I took my first dose of Minocycline and then each morning after, other wise I might say that the exacerbation is just taking its course.
I will begin the twice daily dose of Mino tomorrow. Lets see if this changes whether the numbness returns in the evenings or not. I am VERY curious.
Also, others have reported feeling really badly after taking Mino. I actually have felt really good. A noticable difference in mental clarity, for the better.
The first night I had a really hard time going to sleep though, and I was hot, even sweating. I haven't had that since the first night I took the mino. All in my head?
I can say with certainty that for me, at least for the last four days I have noticed a definite improvement in my symptoms. I noticed nothing when just taking prednisone, and I am noticing that, like I said, in the evenings the numbness in my hands only, starts to return. Somethings up.
When researching Minocycline I noticed that it has a very short metabolic half life in the human body (11-22 hours), could this be the reason for the numbness returning in the evenings? Has my body completely metabolised the 100mg dose and the effect it had on me in the morning is no longer possible in the evening????????
I'll keep all updated with my experiences.
Brock
History:
Diagnosed 06/05; Nystagmus - Right Eye: MRI Numerous active lesions
MRI 07/06 - No active Lesions
Relapsed 03/07; Right leg, numbness
MRI 03/07 - A LOT more active lesions than the first MRI
Relapsed 05/07; Both Hands, numb; Torso, numb
Diagnosed 06/05; Nystagmus - Right Eye: MRI Numerous active lesions
MRI 07/06 - No active Lesions
Relapsed 03/07; Right leg, numbness
MRI 03/07 - A LOT more active lesions than the first MRI
Relapsed 05/07; Both Hands, numb; Torso, numb
Hi Brock,
First, I'm glad you are feeling a bit better, or you think you are feeling better. I have heard other anectdotal accounts of numbness leaving when on mino and returning when it was stopped (pretty quickly, actually).
My husband is currently on Mino 100 2x per day.........but he has been on other abx too, so he is somewhat impure
.
Now, I understand that your philosphy for taking mino is different than those doing abx to treat a bacterial infection (of which my husband is one of). You are looking for the anti-inflammatory benefits of mino. My husband hasn't felt too much of those. If I may, let me share a little bit of experience with you.
You mentioned that other people related stories of feeling bad on mino. In my husband's case this is true, but it was at the full 200mg dose, and it was about day six that he had some strange symptoms come on (the flesh under his right eye swelled on day 7 and subsided in 24 hours--followed by the left eye on day 14---) Since then he has had a couple killer headaches lasting days, drenching night sweats, some aches and pains.
He has now been on mino for about 8 weeks and is feeling pretty well. Actually, today he was feeling VERY well. So far we are happy with the mino and are soon ready to move forward with adding a couple different abx.
I hope you continue to feel well.....just a few caveats to this, though.
The fact that you are on prednisone could be tamping down any "die-off" effect you might be having. Just from experience and IMHO watch out for some nasty reactions when you boost to 200mgs and come off the steroids.
Finally, if you intend to take mino for awhile, you should take some vit c, as that has been shown to prevent hyperpigmentation that can come with mino. Also, please do yourself a big favor and take some probiotics to replenish your gut flora. My husband has been on abx for 16 months and hasn't had any adverse effects from abx---but he takes his vities religiously.
Oh! and it would be great if you posted your mino experiment in the regimens or abx section.
Best wishes to you,
Lexy
First, I'm glad you are feeling a bit better, or you think you are feeling better. I have heard other anectdotal accounts of numbness leaving when on mino and returning when it was stopped (pretty quickly, actually).
My husband is currently on Mino 100 2x per day.........but he has been on other abx too, so he is somewhat impure
.Now, I understand that your philosphy for taking mino is different than those doing abx to treat a bacterial infection (of which my husband is one of). You are looking for the anti-inflammatory benefits of mino. My husband hasn't felt too much of those. If I may, let me share a little bit of experience with you.
You mentioned that other people related stories of feeling bad on mino. In my husband's case this is true, but it was at the full 200mg dose, and it was about day six that he had some strange symptoms come on (the flesh under his right eye swelled on day 7 and subsided in 24 hours--followed by the left eye on day 14---) Since then he has had a couple killer headaches lasting days, drenching night sweats, some aches and pains.
He has now been on mino for about 8 weeks and is feeling pretty well. Actually, today he was feeling VERY well. So far we are happy with the mino and are soon ready to move forward with adding a couple different abx.
I hope you continue to feel well.....just a few caveats to this, though.
The fact that you are on prednisone could be tamping down any "die-off" effect you might be having. Just from experience and IMHO watch out for some nasty reactions when you boost to 200mgs and come off the steroids.
Finally, if you intend to take mino for awhile, you should take some vit c, as that has been shown to prevent hyperpigmentation that can come with mino. Also, please do yourself a big favor and take some probiotics to replenish your gut flora. My husband has been on abx for 16 months and hasn't had any adverse effects from abx---but he takes his vities religiously.
Oh! and it would be great if you posted your mino experiment in the regimens or abx section.
Best wishes to you,
Lexy
Oh Brock--I am so THRILLED for you! Truly! I know when my daughter started feeling improvements, "I" was the one who was a sceptic--not her. Now--after an entire year--she continues to improve. And as I said...the proof for me was in the MRIs--no new/active lesions, no brain shrinkage, old lesions fading. You can't "wish" this to happen!
I am in such total agreement to trying something different because I feel the current MS drug offerings simply fall short. And again and most important...as long as it "does no harm".
Please continue to keep us posted and try to ENJOY your improvements! I will keep you in my prayers with all the others---Chris
I am in such total agreement to trying something different because I feel the current MS drug offerings simply fall short. And again and most important...as long as it "does no harm".
Please continue to keep us posted and try to ENJOY your improvements! I will keep you in my prayers with all the others---Chris
Lexy,
Thanks for your advice, and this information. If I start feeling badly after introducing the other 100mg dose to my regimen, then you guys/gals may have a firm believer in the ABX for bacterial infection. I am very open minded, but I am cautious as well. I don't want to jump to any conclusion either way, and I want the proof to be in the actual results, not speculation. I will start on vitamin supplementation again soon, and I will include vitamin C to deal with the hyperpigmentation you speak of. I have been eating Yogurt, Dannon Activa, which seems to help a lot in the GI area. Should I supplement with additional cultures of Acidophilus?
Oh yeah, and good point on the Prednisone.. It very well could be hiding any reaction that I could have been having if I wasn't on it... We will see. I am tapering off of it as we speak, but I still have a couple of weeks. I wish I could just stop taking it right now. I think they are useless in this form. I would have been better off with the IV steroids.
Chris55,
Thanks for the kind words. I really hope to see more on what this Minocycline will do to me, bad or good. I am thinking it will be a lot more good than bad!
Brock
Thanks for your advice, and this information. If I start feeling badly after introducing the other 100mg dose to my regimen, then you guys/gals may have a firm believer in the ABX for bacterial infection. I am very open minded, but I am cautious as well. I don't want to jump to any conclusion either way, and I want the proof to be in the actual results, not speculation. I will start on vitamin supplementation again soon, and I will include vitamin C to deal with the hyperpigmentation you speak of. I have been eating Yogurt, Dannon Activa, which seems to help a lot in the GI area. Should I supplement with additional cultures of Acidophilus?
Oh yeah, and good point on the Prednisone.. It very well could be hiding any reaction that I could have been having if I wasn't on it... We will see. I am tapering off of it as we speak, but I still have a couple of weeks. I wish I could just stop taking it right now. I think they are useless in this form. I would have been better off with the IV steroids.
Chris55,
Thanks for the kind words. I really hope to see more on what this Minocycline will do to me, bad or good. I am thinking it will be a lot more good than bad!
Brock
History:
Diagnosed 06/05; Nystagmus - Right Eye: MRI Numerous active lesions
MRI 07/06 - No active Lesions
Relapsed 03/07; Right leg, numbness
MRI 03/07 - A LOT more active lesions than the first MRI
Relapsed 05/07; Both Hands, numb; Torso, numb
Diagnosed 06/05; Nystagmus - Right Eye: MRI Numerous active lesions
MRI 07/06 - No active Lesions
Relapsed 03/07; Right leg, numbness
MRI 03/07 - A LOT more active lesions than the first MRI
Relapsed 05/07; Both Hands, numb; Torso, numb
-
MSresearcher
- Getting to Know You...
- Posts: 20
- Joined: Thu May 17, 2007 2:00 pm
- Location: Agoura hills, California
Brock,
Excellent!! I haven't done much research on mino but I have to say this will change! If you did a prednisone pak vs the high dose Solumedral IV I did not notice any difference with the pak either. It was only the high dose that helped. but it seems the mino is working well.
From your post
"When researching Minocycline I noticed that it has a very short metabolic half life in the human body (11-22 hours), could this be the reason for the numbness returning in the evenings? Has my body completely metabolised the 100mg dose and the effect it had on me in the morning is no longer possible in the evening???????? "
sorry i haven't figured out how to put quotes in those fancy boxes yet.
I think that it would be a logical conclusion to come to let us know if the numbness completely disappears when you up your dose and we will all have an answer
I am so happy to hear you are improving. I'm leaning in the antibacterial and anti fungus directions myself I just wish I had found this site as early in the disease as you have. I admire your courage
Take care buddy!
Excellent!! I haven't done much research on mino but I have to say this will change! If you did a prednisone pak vs the high dose Solumedral IV I did not notice any difference with the pak either. It was only the high dose that helped. but it seems the mino is working well.
From your post
"When researching Minocycline I noticed that it has a very short metabolic half life in the human body (11-22 hours), could this be the reason for the numbness returning in the evenings? Has my body completely metabolised the 100mg dose and the effect it had on me in the morning is no longer possible in the evening???????? "
sorry i haven't figured out how to put quotes in those fancy boxes yet.
I think that it would be a logical conclusion to come to let us know if the numbness completely disappears when you up your dose and we will all have an answer
I am so happy to hear you are improving. I'm leaning in the antibacterial and anti fungus directions myself I just wish I had found this site as early in the disease as you have. I admire your courage
Take care buddy!
DX 2002 34yold, Tysabri