Keep your neurologist informed of your medical condition

[Marco]

Shingles outbreak = temporary Tecfidera break

Please remember when a significant medical event occurs to keep your medical team informed. After a brief trip to the ER, I have a confirmed shingles breakout. Shingles is the same virus that causes chicken pox and only infects people that have previously had the chicken pox. For safety precautions, my neurologist has temporarily pulled me off Tecfidera until I can get a CBC done. My neurologist wants to ensure that all my blood counts are within an acceptable and safe range. There is no one suggesting Tecfidera caused the shingles, but obviously my immune system is compromised to allow the shingles outbreak. As someone who is JCV+ a compromised immune system could be significant. So while Tecfidera is not implicated, my medical team does not want to take any chances.

Godspeed, one and all!

[DebbieB]

Marco,

So sorry to hear you have Shingles. I know you've been very pleased with Tecfidera, and hope that you'll the test results will prove everything to be within normal limits and you may resume Tec.

I had to terminate Tec approx. 2 months ago...very disappointing. Developed an allergic reaction to the drug about 6 weeks into the treatment.

Ironically, I've had a number of (most likely unrelated) illnesses since discontinuing Tec - UTIs (2); URI, which went into Bronchitis which I'm still fighting (and awaiting test results from a second x-ray). I pray its not pneumonia.

I, too, am JCV+ and share your concerns, while trying not to get paranoid.

May you get through the Shingles quickly with no lingering effects. My best to you!

[KatieAgain]

Shingles stink! I hope your case is mild.

You have a good doc! A few days off Tec should not be a problem. A prudent safety precaution with a new drug.

Hope you are feeling right as rain soon.

[dyin_myelin]

Hope you feel better soon Marco! This may put your mind at ease:

http://www.wheelchairkamikaze.com/20...2-and-pml.html

[KitOP]

Marco, So sorry to hear about the Shingles! They are not fun, been there and done that!

Mine broke out after a nasty flare, IVSM and a steroid taper.

You take care of yourself, many healing thoughts headed your way!

[Marco]

Debbie - thank you. I already started the antiviral medication hoping to significantly reduce the impact of shingles. Yes, I have zero desire to quit Tecfidera, but I don't own a prescription pad, medical license or crystal ball.

KatieAgain - Thanks! I had my blood drawn this morning so the neurologist should have the results soon. I had a blood draw 6 weeks ago and everything was normal. It will be interesting to see if anything substantially changed during the interim period. I see my PCP tomorrow and hope the results will be available by then.

DM - Yes, the best news is PML is not a simple on/off switch, but mutates over time in a compromised immune system. I'm not as concerned about PML as just informing people to keep their doctors in the loop. The 4 dimethyl fumarate deaths could have been avoided had the patients communicated with their doctors. The Gilenya patient that got PML after switching from Tysabri was a different situation. He complied with the wash-out period given by his neurologist. Tysabri now has a 6-month screening after you stop taking the drug to look out for signs & symptoms of PML.

KitOP - I am hopeful that MS does not complicate the shingles. I am officially on the "needs a break list."


I did call MS ActiveSource and the nurse I got was fairly worthless. I said, "if you are just going to send me to my neurologist tell me now and don't waste my time." I spent 15 minutes listening to long, rambling answers, and platitudes before being referred to my neurologist.

[KateA2]

Hope you are feeling better soon Marco. Hmm, I know 5 people in the last three weeks who have developed shingles, and it sounds awful. Glad you are on antiviral meds, nothing to take lightly when PHN can happen...as if we MS folks don't have enough nerve pain already!

[OrangeMetal]

Marco,
Is your shingles issue resolved/was there any final determination it was or was not fully related to Tec?

I have it on my lower leg above ankles and just told neuro and PCP. Neuro said to let him know if it spreads but wasn't concerned yet.

[OrangeMetal]

Hi Marco
Did this get resolved for you yet and are you doing better? Was there any final determination on any correlation if any between Tec, WBC count and your shingles?

I also ask as I just thought I had shingles, in two patches above my both ankles and told neuro and pcp and neuro got back to me saying it was very unlikely to be shingles if in 2 spots. So at first I was remembering your post here.

My recent WBCs were lower than last time, but PCP and neuro have said all along I have low baseline and they think this is natural fluctuation since all other counts went down a little and that happened in past. They suggested I come back in 3 mo to just monitor it.

Hope you are resolved with this.

[Marco]

I think bilateral shingles are very rare, but not shingles in two places on the same side. Then again, my medical license was provided by 'ACME Brick' and presented by RoadRunner.

Today was the first day that I did not have more blisters so I am finally responding to the antivirals. Had I gone to the ER Friday night instead of Sunday morning much if this may have been avoided. There has not been a final determination on my blood count, TEC or whatever. I know multiple doctors were looking at my labs, but I haven't heard anything.


I will certainly update you next week when I hear something definitive. For now, I'm enjoying swallowing two fewer pills/day and trying to mend.

[Seasha]

Then again, my medical license was provided by 'ACME Brick' and presented by RoadRunner.

LOL - good one Marco! It's good to hear you are responding to the antivirals. I've had those nasty shingles No fun!

Blessings~

[OrangeMetal]

Hope you continue on the mend, Marco.

I think I might have rosacea or eczema, from looking at other pictures but have no pain or itching or anything like that. I am going on Monday to a hospital clinic I go to. I don't think I need to go to ER (hopefully I'm making the right decision. Neuro did not say I needed to go to ER or even to clinic or was concerned about taking me off Tec.)

I guess I will find out Monday what this skin thing is.

[Marco]

The CBC panel results were completely normal. My blood counts have actually improved over time while on Tecfidera.
The powers that be agree that Tecfidera should not be implicated in the shingles outbreak. Based on the current rate of recovery, the shingles should be gone by Monday.
Tonight, I will rejoin the ranks of the Tecfidera flushers!

[bree2013]

Congratulations Marco. Glad you're able to continue Tec.

Bree

[bree2013]

Marco,

I just created a thread entitled Post Shingles... Very uncommon, but just an FYI

Bree