Hello all! I'm new to the board. 41yrs old, female, married w 2 young kids. Diagnosed RRMS in 2012 after two episodes of tingling - in feet/legs then 6 mos later in hands. Thankful it wasn't something worse. Started taking Tecfidera in 2013. No relapses since! My neuro at Univ of Michigan says I'm a "super responder" because Tec also seemed to have cured my scalp psoriasis that I struggled w for years. Totally gone. ( Tec was used to treat psoriasis in Europe.) Anyhow, despite being an immune suppressing drug I've been very healthy. Gotten flu shots, rarely sick. Until a few weeks ago. Period of higher stress; (I'm a varsity sports coach at my kids school and also I just started a part time job this fall to help pay the bills). Didn't consider it a super stressful time or anything, but... I came down with shingles. Severe back pain, sores on my left side front and back. Took a week of valtrex to contain the virus and UMich said to stop Tec while I'm fighting shingles. Sores are resolving and back pain has reduced but nerve pain still frustrating. It's been about 3 weeks.
Any thoughts from you all about a theory I've heard that "Tecfidera causes shingles"??? I know most people never get shingles twice but I'm hearing that MS patients get it more often? I'm too young for shingles vaccine. Haven't talked to my neuro about this yet, just her nurse assistant. I really don't want to go through this shingles thing again. Going back on Tec starter pack in a week or so.
Thank you for your comments! God bless you all...
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Klclippert
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I don't know but I think if your immune is comprised you're prone to getting some things. You carry the virus but it's not active until your immune is weaker.
Hi I have never taken that drug, but I have read a few reports of people being on it and then starting with shingles. It lowers your immunity and if you have had chicken pox that virus can lay dormant in your spinal fluid and so if your immunity gets too low, then I guess it makes you more suseptible to viruses. I hope you soon feel better, and you can get some concrete answers, cheers Jimeka
Hi! I know that if you had chicken pox shingles can lay dormant in your body. As ms patients the issue we have is some vaccines we can't or shouldn't take depending on the meds we're on. Your neuro and the CDC will need to help you make the best decision. Active viruses which the shingles vaccination is I not recommended but since you have the shingles now they may allow you to take it.
Same thing happened to me years ago when I took an immunosuppressant. The dormant virus can resurface if you tamper with your "natural" immune responses. So those with MS taking something to alter immune system can be vulnerable to shingles. Here in UK you are prescribed the anti viral drug when shingles comes BECAUSE you're suppressing your own body's response. I had it 3 times in as many months! It was a learning curve for me in the early days ( true for us all) and now I don't take any meds. I also don't have any vaccinations, in fact, I blame having a Hepatitis B jab for my big relapse in 2003! I didn't "have" MS at that point, ie no diagnosis, just thought I was getting old! But the Hep B is a live vaccination and within weeks I was floored. That led to a diagnosis and a life change. That's my story! All the best.
Gilly57, hep b isn't a live vaccine in USA. But any vaccine live attenuated or not live, can stimulate immune response and cause mild temperatures elevations and subsequent relapses 🙁
Hindsight's a wonderful thing! I now know so much more and if I HAD known that I was in anyway going to have such an effect from a vaccine I'd never had had it! There's no two ways about it in that you only become an expert in the field of your own condition AFTER you're aware that you even have it! LOL!
I have decided to stay away from any ms drugs especially immune suppressing treatments. My liver and lymphatic system mean too much to me to experiment with them. Very happy to see I am not alone. Take care.
Risk of shingles a 2nd time is equal to risk getting it once (myth that it's rare to get more than once). Because of the immunosuppressant.effects of Tec, the risk of viruses and infections can be greater than the general population. Hope you do not have residual pain PHN aka post herpetic neuralgia).
I thought your comment about it not feeling stressful taking on more work etc. was interesting. I feel like a wimp as my MS has progresses. Any deviation from my usual routine seems stressful for my body and can cause symptoms. Sometimes the effects are not immediate. But when I think back @ the prior week, I can usually identify a stressor.
Anyway, welcome Kiclippert! Nice to meet you and hope you recover quickly from the shingles.
In a prior post re. The shingles vaccine, MSNA suggests consider the vaccine unless you are on an immunosuppressing med (tec). You could have considered prior to beginning Tec. But that's a moot point now. And it would have been some degree of risk before...now you would need to be off Tec for awhile (?) and the period after active shingles before then getting vaccinated is controversial. All about weighing risks and benefits 🙁
Any immunosuppression medication probably increases the risk for shingles. I got the shingles this past summer, I am on Tysabri .
BY The way, if any one reading this notices any kind of rash, go to your doctor ASAP. I did the day after I noticed a small amount of itchy bumps on my back. I was given an antiviral which helped tremendously . My shingles was a little painful, and uncomfortable and it spread, but it could've been much worse without the antiviral and early diagnosis .
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