[derek-markulin]

I took hydrocodone sporadically for my back while taking Evrysdi with no side effects. I believe I called Accredo and it was not listed under their adverse drug interactions so it was ok to take. But in saying this I know we all react differently to medications so I can only say it didn’t cause any issues for me.

Hope your back gets better.

[derek-markulin]

Hello Ajay,

I am 45 with type 3. I have been on Evrysdi for about a month now and I initially felt like I was buzzing as in I drank some really strong coffee or espresso. It actually kept me up for the first few nights but subsided after about a week. I take mine after lunch everyday just after eating. I believe I was advised to take after a meal to reduce or avoid stomach issues the same time every day. I do feel like I initially had some stomach discomfort but it went away as well and fortunately did not have any diarrhea. I can also say I feel that my appetite has increased and drink protein shakes.

Now I am assuming these side effects came from the Evrysdi but it so happens I got my 2nd Covid vaccine shot 5 days before starting Evrysdi and I did have some rough side effects from this 2nd shot. So I was dealing with elevated blood pressure and insomnia from this vaccine which may have carried over to starting Evrysdi.

I hope your symptoms resolve

Take care!

 

 

[derek-markulin]

I have gone to a chiropractor for years just for back adjustments but haven’t recently. I would get a deep tissue/ stretching massage at the chiropractic office and then adjustment right after. My neck and back would really make some cracking sounds as he would adjust me and I always felt better after an adjustment. But in saying this, I also have no curvature and have a milder form of SMA (Type 3).

My chiropractor understands my situation and they have other ways of making adjustments or manipulations without using physical force. I honestly felt the deep tissue massage and stretching was very helpful as it loosened up my back. It wasn’t a relaxation massage either although the deep tissue part felt good. The therapist would refer to it as a mixture of passive and active stretching.

If you find a good chiropractor they will work with you within your limitations. But I stress a good chiropractor as many just get you in and out without talking the time to understand your situation. The Physical Therapist at the MDA Clinic didn’t think a chiropractor was a good idea as she felt they could break something with their manipulations but like I said they can make adjustments with the physical manipulations.

[derek-markulin]

I am very interested to see how this works. If one Part D plan would work better over another as far as out of pocket maximums and co-payments. I believe four of the plans had $47 copays for brand name whereas Cigna has a 20% co-pay for brand name.  The annual open enrollment period to select a new Part D plan is coming up October 15 to December 7th. This would allow people to choose the plan which would be most beneficial to their situation. But in saying this I do believe all plans have to offer brand name coverage but at what co-pay I don’t know. You would have to check your plans formulary list and drug cost which probably does not have this drug listed as of yet. My plan has not covered certain brand name medications before which is frustrating but I do believe they are required to offer at least something from every type of medication. Meaning if not the brand name at least a generic version which in this case would only be offered as a brand name as there is no generic option.

This is on the Medicare website: If you can’t find your medicine on a health plan’s drug list in your state’s Marketplace, you can request that your plan cover it or give you access to it. All plans sold on the Marketplace are required to have a way to request access to off-formulary drugs.

You can request that your insurer cover a medication not on its formulary with the help of your doctor to explain the medical need. If your request is denied, you have the right to appeal your health plan’s decision.

With all that said, I still don’t know if there would be unattainable costs involved. My plan is I’m hopeful this will be figured out soon and that we will all have access to it.

[derek-markulin]

I see a neurologist once a year at the MDA clinic to pretty much spend all day, where I meet with the counselors, occupational therapist, physical therapist, geneticist and neurologist along with student doctors who are always observing my exam by the neurologist. I also have to see the neurologist regarding my spinraza injections when I was getting them and will now have to see him again regarding the Evrysdi medication once things get figured out with insurance.

Yes I would say the exam by the neurologist is usually brief and confirms what you and they already know but they also want to see if you’ve regressed since the last time or what changes you may have had since your last visit and if you have any additional equipment needs.

I would ask how to get started on the new medication as soon as possible which is what I will be asking. I know when Spinraza first got approved it took me one year to finally get my first dose so I am hoping being that this is a much less invasive medication to administer that things will move faster.

[derek-markulin]

I don’t know of any grant’s but I do know if you are trying  to get or seeking employment that the States Vocational Rehabilitation program could help with home modifications but it takes time unfortunately.

I was also told that some church groups or charities could possibly help but I have not found any as of yet.

I’m interested to hear if anyone else on here has found any resources to share.

[derek-markulin]

Fortunately for my wife and I, we decided to homeschool our kids at the beginning of the school year in 2019 so before the pandemic. We decided this as we found our son was learning, for lack of better words, bad behaviors and words from other kids at school. We also were constantly getting sick as they bring everything home which wasn’t fun. And lastly our kids are learning better or more at home as we work with them which makes sense having the one on one learning experience. Some of our friends also homeschool and shared their experiences with us which helped us make the leap to homeschooling. So things haven’t changed for us fortunately.

[derek-markulin]

Hello Brianna,

I drink match tea almost every morning now. When I first started drinking matcha it really gave me a jolt in how I felt but it did make me a little nauseous afterward which made me stop drinking it for awhile. But after awhile I realized the trade off was worth it to me and started again and surprisingly I no longer feel nauseous after drinking it. I also drink it on an empty stomach as I don’t eat breakfast usually until late morning if at all.

[derek-markulin]

Hello Kevin,

I know this is probably not possible due to financial costs but I wonder if it is possible to get both treatments. Do you know if this has been discussed?