chintan wrote:Now I have the following questions
1) Is it normal to have few relapses and new lesion while on Avonex?
2) If no then can i still continue taking Avonex thinking it may still be working (not very effectively)
3) What are the options if I don't want go for more risk drugs like Tysabri.
4) Can I still manage 20 years of working if i am in desk job with MS
I am scared to death about taking Tysabri or even Tecfedera because of PML. I feel already, I am quite unlucky to get MS and so I don't want take anymore chance.
Welcome to ThisIsMS, chintan.
I am not a doctor. I can only offer my
opinions on your questions:
1) I used Avonex for 7 years. My symptoms continued and worsened during this time. I have chosen to discontinue all the approved drugs for MS, choosing instead lifestyle changes, such as diet and supplements.
2) Your doctor has the final word (you may be able to persuade him if you wish to continue taking Avonex).
3) I recommend that you have nutrient testing and, if levels are low, supplement (with your doctor's guidance) to reach and maintain optimal levels (NOT just minimally acceptable levels). Start with a vitamin D test; then, the 4 tests necessary to establish your vitamin B12 status (#1 serum B12 test, #2 RBC folate test, #3 serum homocysteine test, and #4 methylmalonic acid test). Solu-Medrol is known to deplete vitamin B12.
Magnesium, iron, and zinc are often low in people diagnosed with MS. – These should be tested also. A vitamin D or vitamin B12 deficiency can cause neurological symptoms, as can other nutrient deficiencies. It is possible to have more than one condition at the same time – you are allowed to have a deficiency in addition to MS.
Please request your own copy of any test results – it is important to have the actual test result numbers.
4) No one can predict the future course of the MS; it is different for every case, but there are certainly people who work and lead quite a normal life.
I share your fear about Tysabri or even Tecfidera – I would be unwilling to take the risk of PML (a HORRIBLE disease!). Ultimately, YOU will make your own decision.