need advice

[shel67]

So I did talk to MS specialist today. He said I can choose whatever med I want even Tysabri but and he set up all the testing I need for Ty and all the oral meds. Apparently I need a chest x ray for the Aubagio cause of TB. He is seeing what he can do to see me as soon as he can but since I have no insurance resources are limited. I understand but he did give me a number to call when I need to call and he is setting up emails to go to him. So that was cool.

He explained the choice for copaxone first, because I can get it in 2 weeks and they want me on a DMD ASAP. Since I declined the shot,  Aubagio was next choice because it's easier and quicker to start. He said I can switch to any med but it's that I need one quickly. Gilennya will take longer to get on and Ty is even more difficult. They have finacal assistance but the infusion center will be more difficult to get assistance. So there you have it.

The advice I'm asking is what choice to make. I know no one can make this choice for me. But some thoughts, input is welcomed be cause y'all know what these meds are. I ask the doc about copaxone's effectiveness and me having black holes and he said my concerns about Aubagio being so new that Copaxone was the safest out there and it taking awhile to work, he said atleast something will be in my system. I guess he's coming from the perspective that it's better to do something than nothing. So that has me thinking Ty may be best but I'll try Aubagio just to get on something quickly and I can see how I tolerate it. It's starting to sink through my thick scull that I'm not going to have it all.

Input is greatly appricated.

[shel67]

He wants me on a med before I can see him which wasn't till October but he did push that up to August. Thank God. And he sent me a neuro opthalmologist appointment to go in a few weeks, really thank God again. So things are working. In the mean time he set me up to do all the labs and tests necessary for all the treatments so that will be already done when I do choose. Both specialists just didn't want me to wait to until October, they want to stop or rather slow way down, any further activity thus further damage. Thank God they too want to be aggressive.

[essdipity]

I don't really get your neuro's insistence that you be on a DMD like yesterday, unless this is your interpretation and not actually what he said.

Whether you start on a treatment drug now or in a month will have little or no effect on the overall course of this disease. I agree that you should make a prudent decision, considering what you can tolerate and what your lifestyle is like, but you already have enough info for that. Choosing Tysabri first would be very unusual, and because it is a pretty powerful immunosuppressant, few neuros would go this route to begin with.

As others have said, any of these drugs will require several months, even a year, to produce a therapeutic effect, so don't expect any immediate changes. Ask for meds to help with your most distressing symptoms. You will most likely need these for the forseeable future, maybe permanently, regardless of DMD. That's okay--at least we can get some relief.

If you have no insurance and are depending on availability of free treatments, things may get more complicated but ultimately will be resolved. Meanwhile, try to relax. You have a diagnosis, you have a doctor interested in helping you, and you have access to meds for symptom relief. That's a lot.

ess

[karryon55]

I wouldn't be worrying about TB risk until you have had the chest X Ray. It's only a risk if you have latent or active TB and if you were either of those they typically give you 12 months of special antibiotics before Aubagio is given. If you don't have any TB in your body then Aubagio will not give you TB rather you would have to be living with an infected person for about 3 months and then there's only a chance you would contract TB.

I am not sure why these possible side effects you've listed above are worrying you so much but you are less concerned about the PML risk associated with Tysabri. I think sometimes our minds get overloaded with information and even more so as you are so new to this. I wouldn't be in a break neck hurry to choose a DMD if you aren't sure rather I would try to focus on choosing the best one that suits your needs and lifestyle so you have the best chance of giving it a good trial.

I hope this helps.

Karry.

[supermum_ms]

It's definitely in your best interest to start one of the MS disease modifying drugs but i am a bit confused with you saying your neuro wants you on one asap and or that he's potentially implied your situation is more urgent in someway, so your decision has to be made faster than your psychologically comfortable with, which could cause even more anxiety in an already anxious patient...grrrrr

Many neuro's recommend the older DMD's like Copaxone, Avonex etc because of their longer history, and the injectable's realistically might be beyond your capabilities at the moment, so a tablet form DMD like Aubagio would probably be the easier option for you to start off with and IF it's not the right one for you that choice can be made later....

Try taking a step back for a moment.........breath! Try to shut down any anxiety generated indecisions and road blocks, by simply starting your first DMD by following the professional advice and DMD experience of your MS neuro, and which ever DMD will make medication compliance easier for your anxiety to handle at the moment.

Try not to fuel your indecision, by letting your self focus on all the 'what if's' your anxiety can come up with, which honestly may never happen and try trusting your neuro's recommendation to start you off.          

Food for thought..........JJ

[shel67]

Well, the hair falling out, the TB risk, the nurophthy, the headaches, GI issues, no one on it long enough to know anything, the liver injury,  low wbc count. Its really upsetting to me. But I know all these meds are poisons. They all have their baggage. I know it's an individual thing one med that works for one may not work for another. One may tolerate one but not the other. Its very frustrating.

[HVAC]

Aubagio sounds like a good choice. The best one for you is the one that works and you can tolerate. The beauty is you can always change.

Alex