Frustration hits the fan!

[Nicoly3467]

Hi-got word today from neurologist since I had so many relapses last year (4) including one now for 2015 that I am still recovering from, that he's going to add solumedrol infusion once a month with my Rebif therapy. The solumedrol therapy I cannot take forever though due to other health complications that could arise. I have taken Rebif for over 7 months and last MRI looked good-no changes.

If this does not keep the relapses more at bay, then I switch to Tysabri, but I tested positive for JC virus so he cannot keep me on that continuously either...off and on. Ugh!

The third option is Rituxilab (chemotherapy drug infusion) which of course scared me A LOT and I cried when I left the office. Don't know what to do anymore...I usually try to be positive and encouraging about this disease, but feeling at a loss now and not so positive about any aspect of this disease.

Doc said to me today, "we are trying to buy you more time trying the other therapies", which I gather he meant until something worse physically happens to me.

I need to sleep on this. Thanks for listening friends!!!

[malaholic]

Nicoly3467, I'm so sorry you're going through this. That is an awful lot of relapses. I know symptoms and MRI don't always correspond, but it still seems odd to me that you'd suffer so many relapses without much MRI activity. But yeah, it sounds as though it is definitely time to try other treatment options.

Like you, reading about all of the potential side effects of the more powerful treatments just frightens me. That said, I have also seen from the med forums here on this board that drugs that one person can't tolerate, work wonderfully for another. I hope for you that whatever you and your neuro decide to try next will really put a lasting halt to these relapses, and without any significant side effects for you.

I also hope that if you do this first round of Solumedrol that it will help expedite your recovery from your current flare. It's hard enough to deal with these situations even when you're not dealing with an exacerbation of symptoms on top of it!

Keep us posted on how it goes.

[Nicoly3467]

Hi Malaholic,

Thank you so much for your kind words. This really made my day! You are very sweet!

Yes, these relapses are very frustrating and even if I can reduce them to one a year or less, that would be good progress for me.

How are you doing with your MS? What are your challenges?

[Temagami]

I took it as the neuro is trying to buy you more time before the next drug comes along- anti lingo?

[Baker298]

Mom was on a monthly SoluMedrol for more than 7 years. No change in her bone density-she had osteopenia before being diagnosed and still has it. She also takes Betaseron.

Within the past few months, her neuro DC'd thinking her chronic UTIs were related to the SoluMedrol. I think not.And guess what-she's off the SoluMedrol and she has been treated twice in the past four months for a UTI-antibiotic IM.

She would get a one day treatment, 1g. Wouldn't sleep well the night of the infusion...would get a burst of energy that would carry her for two weeks. It's the fatigue that's a killer, her words. She's big on the vitamins too and gets a B-12 shot bi-monthly.

Good thoughts from me and Mom.

[Nicoly3467]

Thank you for the responses!

Temagami-I need to look into this anti-lingo treatment. Just heard the name, but don't know anything about it.

Baker 298-good to hear about your Mom taking the monthly solumedrol infusion for so long. Sounds like it has helped her but sorry to hear about her UTI's. That must be hard!