I tried Ocrevus after a friend of mine threw away her cane as if Oral Roberts squeezed her head. She went on and on about how great Octevus was to her which led me switch to it from Rebif. Bad move on my part. The Ocrevus not only did not work but seemed to make my symptoms worse. Because of that my neurologist convinced me to use nothing. That isn't doing much good either.
Your mileage can and probably will vary.
Sorry to hear that I often wonder how I would be on “nothing” . I hate all these drugs, steroids, Ocrevus, contrast for MRI. Stay strong
After 4 years on Aubagio and 2 years of straight decline my doc is finally ready to switch me to a stronger drug. We chose Mavenclad. she said Ocrevus has too many side effects and not enough success. She also said the idea of going off DMTs does not play well in the research.
I was doing better on birth control than I have on MS meds 🤷♀️ Can you return to Rebif?
Estrogen is a good treatment for MS.
I asked my GYN for HRT to see if it will help. Started Estradiol patches a couple months ago.I know my MS symptoms didn't show up until I stopped birth control which I took for over 20 years.
GYN said I shouldn't take HRT past age 60 though.
Ty for sharing this! What happens past 60?
Nothing more than being in my 50s for me. I am 63 and still plugging away.
I'm not 100% sure but i think it puts you at high risk for breast cancer.
I was 57 when I was dx. I was on copaxone for 12 years. I did not have progressive symptoms so when I turned 70 I came off the DMT. I am 74 now and have been off meds for about 4 years. I have had no active lesions (that I know of) since my dx and my lesions then were all inactive so I must have had active disease before 57 but had no idea. I have been on HRT since my med 40's and I wonder if that has he helped my MS from progressing. I am hesitant to come off but should I have to get a new gyn I worry about it!
My periods stopped when I was 39. I did not have menopausal symptoms except for night sweats about 3 times. I continued to take oral contraceptives until I was 51 when I went on HRT. My internist warned me many times about the hazards and even tried to trick me into taking a lower dose. I take the generic Activella, one tablet every other day. My last two internists have said nothing. Maybe this is because they trust my judgment or maybe it is because they know I am a licensed physician and will just prescribe for myself if I have to. I am now 71. I firmly believe that the estrogen is helping me to avoid the deterioration that most women with MS have after menopause.
Hi, May I ask what birth control pill you are on? I don't know what HRT is...is that the brand? I was on ortho-novum until I stopped using birth control pills in my my late 30s. I'm 55 now and want to ask my MS specialist if he will prescribe them for me now. I take no DMTs, never have, never will...just herbal supplements, but I would love to try estrogen. Thank you in advance for sharing the info. Sincerely, Hope
HRT is hormone replacement therapy. It is not a birth control pill. It is a medication given to treat menopausal symptoms. I take the generic form of Activella, which is Estradiol 1 mg + Norethindrone 0.5 mg. I take one tablet every other day.
When I started HRT in my 40's I started with Premphase. This was long before I found out I had MS. At the time doctors were concerned about risk factors from the studies 1970s. although I think a lot of that is no longer considered the risk of Breast Ca. I had no reason not to be on HRT medically. My doc tried after a few years to change my routine and put me on estrogen for 3 weeks and a generic progesterone for about a week. I reacted negatively to the progesterone right away., and I did not like the idea of taking estrogen alone at all. I would like to add that I do not take a combination pill. From a nursing perspective, I always felt that sequential was a more natural way to take HRT. I also read recently that the combination of the two hormones was more problematic and maybe risky for some patients so I am glad I did not go that route. After a lot of years I did have a situation with cramping. I figured it was related to the progesterone but no one could figure it out so I went on the Premphase every other day and I have responded to that schedule and do not have anymore cramping. My MS has been minimal all this time. I would like to add one thing about HRT; it is not easy to come off it. Menopausal symptoms will return ( big time maybe) as the hormones diminish and the 2 hormones need to be slowly, very slowly decceased over a period of time (in my opinion.)
Thank you so much for sharing and for the information. I didn't realize HRT was difficult to come off. I wouldn't take Premarin or Premphase anyway because of the cruelty involved in collecting horse/mare urine to produce these products. Will just stick with my herbal remedies and forget about hormone replacements. Thanks again
It is so good to hear this especially coming from a physician. I decided to go on HRT after reading a very interesting book (now out of print) that supported the idea of HRT and some of the comments in the book were from 70 and 80 yr olds who swore by HRT. It wasn't about MS but about putting back what nature takes away!
My Urologist has me on a hormone cream I use a pea size amount 3 times a week, it's for UTIs been almost 1 yr & no more UTIs & no problems have hoped up because of the H/C. Mary
I go back to Gyn again after 4 months and if vaginal dryness hasn't improved he will add the cream too.Glad to hear it can help prevent UTIs!
This also reminds me I am way overdue for a urology visit 😁
It was certainly doing me some good! My age has excluded me from bc so far, perhaps I should say I'll take a blood thinner too. I saw a positive study using 8mg! That's a lot, and I don't think anyone died from strokes.
I think it was due to higher risk of clots/stroke. I know I have had patients in their 80s still taking it though. I have 7 years before I have to decide 😊
I googled a bit and the breast cancer risk increase gave me pause, considering my recent meds. *sigh* I kinda don't think 20% is accurate 🤔 I also want to keep my bones!
The minimal research I did suggested starting soon after menopause is key. Studies I read talked about not starting after age 60 but didn't talk about continuing after age 60. I will have to do more research in about 5 years. Since I don't have a uterus anymore I don't have to worry about taking progesterone. It also suggested the breast cancer risk was from older data with combined estrogen/progesterone therapy.
You are correct. HRT starting at menopause and continuing past 60 appears to be much safer, cancer-wise, than starting HRT later, particularly after age 60.
Thank you! This saves me taking time to research 😁
It also depends whether if you had a hysterectomy or not. Women without a uterus especially in 40/50's need estrogen; HRT, estriadol, Vivelle patch. I am going to be 62. My mom stopped at 75. They want me to lower my dose. Before my hysterectomy I sweat so much it would drench me. I still sweat. Not as bad. Definitely not stopping and I will lower dose. I became so warm that the estrogen helped lower my temperature, the heat along with hot sweats. My sister had no symptoms after hysterectomy. Each woman is different. HRT with uterus has more risks because one cannot just take estrogen only. Yes can increase risk of breast cancer.
I love your humor. ". . . as if Oral Roberts squeezed her head." That made me laugh.
Would you consider getting a second opinion? I’m concerned about not being on DMT’s.
I’ve had MS for 27 years. Diagnosed at 19 years old. I was on BetaSeron and Avonex for the first 18 years. Went medication FREE for the last 8 years. Never had a relapse since the 90s. Got the Covid vaccine (mistake #1) and it stirred up some symptoms October 2021. Got scared and let the doctors talk me into Ocrevus. (HUGE mistake #2). Took the first half dose only (300 mg) June 1st and I have been going through hell ever since. I’ve had vertigo/nausea/dizziness since I left the infusion center. It’s been almost 6 weeks. Already had a course of steroids and MRI shows no change since the 90s. Going back to medication free or I will possibly start Avonex again but not until Ocrevus is completely out of my system. Praying my B cells replenish soon, I’ve accepted that I’ll have to wait at least 6-12 months or more and hopefully they all come back. 🙏
I too was on Rebif, after Avonex, Copaxone, and even Betaseron, all early M.S. DMT's. On Rebif I developed flue like symptoms which lasted about 2 years of inject, fever shakes and achiness till about the time for another injection. Then my neuro said stop, and away went the need for any drugs over the next year. That was 10 years ago? Got much worse. Brain fog took my life. Lived off of juiced fruits and veggies except for the occasional dinners, which sent me back into brain fog till only on the juice. Did switch to heavy duty blending the same for a long time, then reintroduced real meals mainly fruits and veggies with small portions of lean meat, fish, or seafood. Last 5-6 yrs norelapses. And no meds at all. Vitamins and vaccines, no processed foods. Still have many years worth of M.S. "gifts" I picked up over the years, but nothing new in what now seems like forever. Actually lost or at least improved on a few. Lost all the residual eye damage from 7 bouts of optic neuritis over the years. Much better at balance and fatigue. Lost the cane. Even better at heat tolerance. Don't like it, often racing back to the air conditioned safe room with the window unit, but after cooling down, back outside or elsewhere. My neuro told me a few years back, he believes I'm over any further progression, as he knows of others just the same, after years of M.S. It Is Possible. Everyone is different. Healthy non-processed foods and off all drugs I believe was key. Maybe a gut reset thrown in too?
That’s great. How many years have you had MS?
I think I was better off with Tysabri.. but my neuro wants me to give him proof Ocrevus is NOT working.. ugg.. more paperwork..
How are you going to handle this? According to my former neuro, Ocrevus slows down the disease progression. So this is something you can neither prove nor disprove.
I have to show him that I am having "exacerbation". Small ones even.. for example my upper right side (seems every "spell" happens to my right side, since forever) had a skin sensation of being sandpaper feeling when touched.. (bad with bra, anything that touched it clothing bed sheets and things like that).. lasted about 5 weeks then thankfully went away.. But no indications "bright spots" on the mri.. things like that..
I have over 60 "old" Bright spots on my MRIs.. so maybe one of them have activated but not shown the "brightness" of a new one..
Like all MS problems.. tis a quandary my dear.
I think it is him who has to prove to you that Ocrevus is working, not the other way around. Ask him how much money he is getting for keeping you on Ocrevus. I wish I had never gotten on Ocrevus.
Sorry it didn't work for you. I switched from Rebif to Ocrevus on 2016. It is working pretty well. I continue to slowly worsen but it is definitely slower than on Rebif.I know some doctors stop DMTs when someone gets to a certain age. Not sure if that is why your neuro suggested no treatment.
Stopped at age 46??? Stopped me because of the long term reaction. Stated since I couldn't handle the Rebif and the like after many years, said I definitely should not try any infusion.Yes I got worse thereafter, really worse, but came back as mentioned on no meds, just real food, and maybe a gut reset?
My symptoms are much worse since I’ve been on Ocrevus too but I’m scared to be on nothing.
Ask to try something else. I tried 2 other meds that did not like me before number 3, which is helping.
what else did you try?
Trazodone made my white blood count drop like a stone. Copaxone made my skin swell and be painful every place I'd ever given it to myself before. Now I'm on Aubagio which I'm very happy with.
sounds good. Aubagio was a great improvement for me over copaxone.
"Oral Roberts squeezed her head"LOL
I'm tired of all the "help" out there.
What do you mean by that?
What I mean by that is drugs that do more harm than good.
I started out with Rebif but couldn't handle the flu-like symptoms so I changed to Copaxone. I was on it for 10yrs then tried Techfedera & had a couple of relapses & went back to the 3X Copaxone. I started to get knots at the injection sites so I started the Ocrevus. The first year was wonderful. All my symptoms went away, no heat sensitivity, no spasms, no numbness & I had energy. The second year started declining & felt like the meds were "wearing-off" at about 5 months, then 4 months & the last infusion I had did nothing at all. During that time, my thyroid was so out of wack that they couldn't keep it controlled, which caused other problems as the thyroid controls so many things in your body. So I was off any meds for 6 months. I'm thinking it's not a good thing to kill the B cells! Then started on Vumerity. It's working pretty well other than heat sensitivity. I used ice packs & a cooling vest for the heat. And my thyroid is holding steady so far. I've been on it for 6 months now.
Prescribing Info for Ocrevus
More on vaccines and Ocrevus
Another fun potential Ocrevus adverse event?Watch out for watery diarrhea as a sign of colitis.
Getting Insurance to pay for Ocrevus in children
