Waiting for Right therapy

New members should feel free to introduce themselves here

Waiting for Right therapy

Postby namedbos » Fri Dec 01, 2006 9:33 am

I have been diagnosed 3 years back but have not taken any drugs so far and am feeling fine until recently when i have had further weakness develop in my right leg in addition to left one where the problem started. No new lescions reported but there is a further worsening of the lescions in my back.
I am a bit concerned but starting the injections due to side effects with Avonex and other Immune suppression drugs. Its hard to think of injecting oneself daily with Copaxone. I have considered going on the clinical trial for the Oral drug from Novartis but the chances of getting only placebo are high which makes the option not worth the time and effort to go to a center 200 miles away. The Novartis drug would be a good option when it comes out.
I have also looked at the option of LDN which is worth a shot.
In the meantime I have started homeopathy. I have also just started seeing a Chiroproactor and came to know that my back is out of alingnment. Lets see if this helps with symtoms.
namedbos
Getting to Know You...
 
Posts: 19
Joined: Thu Nov 30, 2006 4:00 pm

Advertisement

Symptoms

Postby namedbos » Fri Dec 01, 2006 10:45 am

Aprt from lescions seen in MRI my symtoms are :
- weakness in thigh muscle in left leg

I feel worse in cold and have no problems with heat. Eventhough the Neurologist is convinced i have MS , I am not showing the classic symtoms.
namedbos
Getting to Know You...
 
Posts: 19
Joined: Thu Nov 30, 2006 4:00 pm

Postby ewizabeth » Fri Dec 01, 2006 2:33 pm

Hi Namedbos,

Welcome!

Maybe the Novartis trial would be a worthy risk, depending on how you and your doctor think your condition is. I think it is often recommended to start a treatment early on, to slow down the progression of the MS. It can do "silent damage" even when you are feeling ok.

Copaxone probably has the best/longest track record combined with least side effects. I was on it for nearly two years and I was used to the shots.

I'm off of it now, waiting to see if I qualify for Tovaxin in a clinical trial.

Many of the new meds are still in trials and may not be available to patients for many years. Even when they first come out, it takes awhile longer for long term safety data to accumulate.

Good luck with whatever choice you make!
Take care, Ewizabeth Previously Avonex, Rebif & Copaxone RRMS ~Tysabri, 31 infusions, ended 9/09. Starting Copaxone 12/09, waiting for Cladribine to be approved in 2010.
User avatar
ewizabeth
Family Elder
 
Posts: 270
Joined: Fri Jun 25, 2004 3:00 pm
Location: Near Chicago

Re: Symptoms

Postby CureOrBust » Fri Dec 01, 2006 4:49 pm

namedbos wrote:I feel worse in cold and have no problems with heat.

That part sounds very similar to myself.

I can understand your hesitation with injections. I have had MS symptoms for 10+ years and in the last 3 I have tried and found Statins (Lipitor) to have helped greatly I think. It is an oral treatment, which a number of people have seemed to have found benefit from. If you get a prescription from your gp, there is no chance of you being on a placebo arm.

There has also been preliminary research evidence that it reduces lesions on MRI's, and I think it is currently in trial(s). I would suggest you look into it as a treatment option.
User avatar
CureOrBust
Family Elder
 
Posts: 2907
Joined: Wed Jul 27, 2005 3:00 pm
Location: Sydney, Australia

Re: Symptoms

Postby ewizabeth » Fri Dec 01, 2006 5:22 pm

CureOrBust wrote:
namedbos wrote:I feel worse in cold and have no problems with heat.

That part sounds very similar to myself.

I can understand your hesitation with injections. I have had MS symptoms for 10+ years and in the last 3 I have tried and found Statins (Lipitor) to have helped greatly I think. It is an oral treatment, which a number of people have seemed to have found benefit from. If you get a prescription from your gp, there is no chance of you being on a placebo arm.

There has also been preliminary research evidence that it reduces lesions on MRI's, and I think it is currently in trial(s). I would suggest you look into it as a treatment option.


That's a good suggestion Cure. I thought about that in the past, but I had very low cholesterol back then, and my cardiologist wouldn't hear of it. My MS neuro would like to take part in the statin trials, but he said the exhaustive tests required for the patients make the trials too impractical for his staff. I think he is optimistic about them on the whole though.

What dose of Lipitor do you take? They were using 80mg in the trials weren't they? Or am I wrong about that?
Take care, Ewizabeth Previously Avonex, Rebif & Copaxone RRMS ~Tysabri, 31 infusions, ended 9/09. Starting Copaxone 12/09, waiting for Cladribine to be approved in 2010.
User avatar
ewizabeth
Family Elder
 
Posts: 270
Joined: Fri Jun 25, 2004 3:00 pm
Location: Near Chicago

Right Therapy

Postby namedbos » Sat Dec 02, 2006 6:11 am

Thanks a lot for your reply. This is a very good forum and I wish I had joined earlier, its wonderful to have this support . I would really like to start with a medication and may look at doing Copaxone on alternate days instead of daily , I am sure its better than not taking anything. I have also looked at going on the Swank diet. My cholestorol was close to the limit so maybe lipitor would help. I will also ask about LDN which seems to be an option to try as well.
My situation usually gets worse in Winters which does not seem to be characteristic of MS. I can remeber that even 5-6 years back I would feel a wam patch on one leg in winters and it would go away in Summers. My situation started after i moved to colder weather in Boston , so for me its a clear link with cold weather, does anyone else that you know of have the same factors affecting them. I feel great in warm weather which is again not characteristic. Appreciate your support.
namedbos
Getting to Know You...
 
Posts: 19
Joined: Thu Nov 30, 2006 4:00 pm

Postby ewizabeth » Sat Dec 02, 2006 7:48 am

If a lack of vitamin D from lack of sunlight is a factor, or holiday stress, or even just cold weather bringing you down, maybe that is a factor? The reason I get symptoms in the summer is because I have old lesions that cause havoc from the heat, and brings on a temporary rise in symptoms. It seems to get a bit worse each year though.

I get worse stiffness, spasticity and pain in the winter. I know I've read at other forums that some people do get worse in cold weather than they do in warm.

I was just telling someone yesterday, if one of my two sons were to have a single demylinating event, I would wish they would go on Copaxone, and stay on it until something better came along. I wouldn't want them to take chances and wait. I would also want them to do everyday shots. The shots are a pain (literally, especially in the beginning) but you really can get used to them. There are people who've been on Copaxone for ten years now. I have three boxes in the fridge that I'll probably go back on if I can't stay in the Tovaxin trial.

I think if your doctor would be willing to give you a low dose statin, that might be good too. I don't know if I'd want a high dose like they used in the early trial, but I suppose they would monitor you while on that just to be safe.
Take care, Ewizabeth Previously Avonex, Rebif & Copaxone RRMS ~Tysabri, 31 infusions, ended 9/09. Starting Copaxone 12/09, waiting for Cladribine to be approved in 2010.
User avatar
ewizabeth
Family Elder
 
Posts: 270
Joined: Fri Jun 25, 2004 3:00 pm
Location: Near Chicago

Postby Loriyas » Sat Dec 02, 2006 7:52 am

I, too, felt so much better in warm weather. So,much so that we moved from Ohio to Florida. But I attributed it to sunshine and Vitamin D rather than the actual warm weather itself.

Also, I take Copaxone daily. Although I don't look forward to doing the injections I have gotten used to doing them and you probably will also. They aren't too much trouble.

Welcome!

Lori
Loriyas
Family Elder
 
Posts: 590
Joined: Sun Apr 02, 2006 3:00 pm
Location: Naples, FL

warm weather

Postby namedbos » Sat Dec 02, 2006 9:07 am

For me its the temperature. I feel terrible when it gets cold and sometimes my body may shiver. No problems with heat . I am also considering moving down South to Carolinas. Will certainly pursue Copaxone for now.
namedbos
Getting to Know You...
 
Posts: 19
Joined: Thu Nov 30, 2006 4:00 pm

Postby Houdini » Sat Dec 02, 2006 3:02 pm

Just thought I would weigh in. I've been on Copaxone for 2.5 years and started on it after a first demylenating event. Hated the idea of the daily shots, but didn't think I could live with the side effects related to interefeon (for someone who generally experiences all of a drug's undesireable side effects, Copaxone is one of the most benign drugs I've ever been on in terms of side effects). I have to admit that the shots have become something I don't even think about. In addition to the Copaxone I take a statin (Lipitor 20mg) and Minocycline. I also do fish oil, NAC, and vitamins A, D, B-6 and B-12 for good measure.
User avatar
Houdini
Family Member
 
Posts: 26
Joined: Sun Oct 10, 2004 3:00 pm

Postby CureOrBust » Sat Dec 02, 2006 6:27 pm

ewizabeth wrote:I thought about that in the past, but I had very low cholesterol back then, and my cardiologist wouldn't hear of it.

Mine was pretty low before I started as well. I get monitored fairly often to ensure I get no liver issues, and my GP loves my cholesterol reading even more. I think we discussed having too low, but it hasnt gone below the minimum.

I have a script for 80mg Lipitor but I break the tablet up into 3 chunks, and take the two biggest pieces 12 hours apart, so I am probably on about 60mg/day. I didnt notice any differeence between 80 and 60mg, so leave this extra window for later.

namedbos wrote:My cholestorol was close to the limit so maybe lipitor would help

I would really reccomend you give it a go before you get started on the injections, but hey, I hate injections REALLY badly.

ewizabeth wrote:I get worse stiffness, spasticity and pain in the winter.

Same here.
User avatar
CureOrBust
Family Elder
 
Posts: 2907
Joined: Wed Jul 27, 2005 3:00 pm
Location: Sydney, Australia

Statins

Postby namedbos » Sun Dec 03, 2006 5:54 am

I am going to ask my Primary care doc. about gettings statins to get started on those . This is a new perspective and information for me. I am not sure how these will help with MS symptims in addition to lowering the cholestorol but I will look that up.
The other changes I have planned are more regular exercises , diet changes and possibly starting Copaxone soon. I was a bit scared looking at Avonex and the side effects. The other thing I am still not sure is about about MS itself, the Neuro. concluded I had this primarily based on MRI and lescions. I come from South Asia and most folks get Malaria and Viral fever several times , if lescions could be caused by those then is this really MS.
MS is not common at all in S Asia. The big question I had was does lescions imply MS in the absence of other symtoms . My evoked potential etc. came out normal and I do have an issue with knee and spine that may be contributing to my leg muscle weakness. That was the only symtom i had and still do.
This is why I have waited so long to get on medication. I guess its risky to delay so am looking at all options now.
namedbos
Getting to Know You...
 
Posts: 19
Joined: Thu Nov 30, 2006 4:00 pm

Postby Houdini » Sun Dec 03, 2006 7:08 am

Namedbos,

While it is absolutely no fun, you may want to ask your neuro about a lumbar puncture (spinal tap) to get a better grasp on his diagnoisis. If the lesions are due to something else, as you suggest, the results of a spinal tap may further confirm, or cast doubt upon, the neuro's diagnosis. Like I said, a spinal tap is not something to look forward to, but I found that the more information I had when I was first diagnosed, the better I felt -- so I was more than willing to do it. It sounds like you are thinking about this the right way -- good luck!
User avatar
Houdini
Family Member
 
Posts: 26
Joined: Sun Oct 10, 2004 3:00 pm

Re: Statins

Postby Lyon » Sun Dec 03, 2006 9:48 am

00
Last edited by Lyon on Mon Jun 20, 2011 3:16 pm, edited 1 time in total.
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 3:00 pm

follow-up

Postby namedbos » Sun Dec 03, 2006 11:37 am

Houdini :
I did ask the neuro about the Spinal Tap and he said it is not needed that they are fairly sure I have MS. They further said that
"A spinal tap at this point is unnecessary. We believe you have MS.
If the spinal tap was negative it would not change our thinking. If it
showed oligoclonal bands (which is considered a positive result) it
would not specifically mean you have MS because other mimics of MS can
have oligoclonal bands as well. "



Bob:
I come from India and moved to the states in 2000 . Initially in South East with Weather similar to India . No problems there.
Moved to North East US in 2002 and problems started in 2003 , which was the first severe winter for me.. Happy to answer other questions you might have. Thanks for your interest.
namedbos
Getting to Know You...
 
Posts: 19
Joined: Thu Nov 30, 2006 4:00 pm

Next

Return to Introductions

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service