Sorry that it seems you MAY have a worsening situation but I agree with you , especially regarding the OPN and cognitive decline. Cog fog is what caused me to go on disability because I too, was paid for how my brain works.
I was on Copaxone until recently and will switch to something else after the next neuro appt. due to a change in clinical exam but a stable, unchanged MRI.
I believe it is worth the cost of the drug to ward off any further complications.
My 2 cents,
Welcome over on our side of the mountain, even if it is just "possible" or "probable."
The FDA has approved the interferons and glatrimar actetate for use in CIS for a very good reason - we know that even with hints of Ms in the background, it is best to be proactive and begin treatment as soon as possible.
The long term studies for these DMD's are excellent - the results in delaying or even stopping the progression of MS in the majority of people are outstanding. I am always sorry for those people that it doesn't work for, but the truth is it does work for almost all of us.
As for the cost - check out the Shared solutions patient plan - I finally worked it out with them andthey are paying my $50/month copay. It is worth the effort to get that done.
Congratulations on making a decision through analysis and discussion. As for the needle thing, you will be able to do all of your own injections with the autoinjector. No needles are ever visible if your partner ever wants to give you a jab or two.
be well, be proactive....
Good for you. You and your partner have thought this through and I think you made the right decision.
I'm a DMD user (Rebif), and a believer in doing all you can to combat this disease. Like Lu says "be proactive".
I know it's not an easy decision to make and glad you made a choice to help with keeping symptoms down.
Let us know how things go and take care
Well I'm the one that posted earlier who is possible MS and now doc wants to do MRA to look for subclavean steal syndrome.
You have given me lots of good advice since I started coming to this site last month and I thank you for that!
When I was originally dx my advice from my doc was to start meds. I had many thoughts such as you do. Risk/reward - It's a difficult decision when you fall in a gray area.
My 2nd neuro doesn't seem to feel the risk of NOT being on DMD is as big as the first one made it out to be. He feels that if this is MS, I am probably in the early stages, symptoms are mild, and if I do have another exacerbation, he could knock it out with steroids and then we'd treat.
I asked him if he could guarantee that another attack would be mild and would not leave long term damage - and of course he said "no."
SO I am staying on meds until I get info that there is something else that is causing all this. I'm doing it for myself, and also for my family.
My new neuro mentioned the oral meds, but I'm not going to risk the unknowns with their long term side effects. I think more research is needed to prove long term safety.
Seems like you have given this some very thoughtful consideration and it makes sense.
Good luck. BTW - I NEVER give myself shots in front of my husband - he has never said anything, but I have the feeling it would be hard for him to watch. I was SO against the shots initially - "no way" I told my PA. It's a piece of cake now.
Hope your decision brings you some peace of mind.
My husband has a hard time watching me do the shots, but for him it's more about the pain than anything else.
I found that while there are negatives to Betaseron, the advantages really outweighed the disadvantages. I don't get a baseball-sized welt with Copaxone, or a lump afterwards. I don't get lipoatrophy. Most importantly, the IPIR doesn't happen with Betaseron. I started having more of an allergic reaction to it, and so had to stop. Even before that, the IPIR made me not want to take my Copaxone injections. Betaseron is also every other day, instead of every day.
Granted, my immune resistance is lowered, and that's a problem. I got a flu shot while I was in the hospital, so at least my vaccination is current.
You know I stand behind you!!!! The DMD can prevent more damage. It's the smart thing to do!!! At least your doctor has given you a choice. Many do not. They leave the patient in limboland with their bodies becoming weaker and weaker. I think your doctor is a keeper!!!
I think it sounds like you have made a definite step forward and going on DMD's is probably the right choice for you as you have discussed it with your partner and reached a rational conclusion. I think for most people they just have to have faith in the treatment and pray that long term it does reduce relapses and improve overall quality of life.
Keep us posted and well done for making a decision. I hate needles but over the last 6 months have got used to them...just because they are a necessity and regular blood tests and MRi's are part of the drug trial so I am sure that your partner will get used to the needles and at the end of the day it is you who has to go thruogh the pain so I'm sure it'll all work out.
Cheers for now
Hah.... meant to say that "I don't get a baseball-sized welt with Betaseron, or a lump afterwards."
You are a smart man, and your decision will be your best thought out decision that you will make.
Good luck to you and I'm glad you are able to start on a med that will help you and not wait for the unthinkable to happen.
To me, it sounds like you have definitely made the right choice. I'm so glad that your neuro offered you the DMDs. So, many are not given that opportunity on here. Copaxone is the best DMD for me - I don't want to have the flu-like symptoms, especially since I'm expected to work full-time.
When I had to choose, I went through the same process as you - weighing my options. I kept thinking - what if I get one more lesion, and that lesion causes significant issues. I wanted to protect myself as much as possible. That basically made up my mind. Plus, I only have a co-pay of $40 for a 3 month supply thru Cigna tel-Drug. And I just signed up for Shared Commitment with Shared Solutions, so they'll actually be covering my co-pay.
My partner is one of those ones that hates needles. In fact, she has been known on several occasions to pass out after a shot. Now she helps me do the injections. If you have the auto-injector, once it's loaded, you don't even really see the needle.
Thanks for keeping us in the loop, and of course we're all here for you thru this journey.
Good decision, Bob. I like Copaxone. I take the shot with my other medicines, and it is very routine. Because Copaxone takes on average 6-9 months for it to take effect, your MRI will probably show evidence of MS lesions if it's done in another 6 months anyway.
For me, I noticed a winding down of new symptoms after 9 months. Also, the pain in my feet disappeared. I know, the DMD aren't supposed to get rid of symptoms, but I don't have any other explainations for pain in my feet and difficulty walking for YEARS disappearing in 9 months after starting Copaxone. I had the doctor's order for a wheelchair written a few months after my diagnosis because I could not walk around without pain or stability. I was also using a shower chair.
My neuro says that the Copaxone was allowing my brain to heal, and so this has allowed the pain in my feet to disappear. I don't care about how the DMD is supposed to work, all I know is that I've experienced a drastric improvement 9 months later. I have had attacks since that time (even optic neuritis, TN, etc.), but it is nothing like the runaway train that was going on prior.