Aubaugio, shingles as a symptom of flare & burn pain
Hello, everyone! I've been away for a long while with no really good excuse, other than that I had not the health insurance necessary to pursue more than the slightest, barest healthcare for my diagnosed MS. Therefore, no DMD, no MRI's to chart progress, etc. That has all changed in the past six months and now I've gone through one neurologist after another, each pretending to know a lot about MS that they don't. AND I have some specific questions, and perhaps info., for the on-line community if anyone out there is willing to respond. First, one neurologist, who billed herself as the MS Treatment Center in my area, prescribed Aubaugio 14 mg. to treat my RRMS. I had not yet had the TB test or the liver enzyme test to qualify me for the Aubaugio and had to deny delivery for 3 straight weeks before I could be sure it was OK to take it, and THEN she was upset because she said she didn't have the results of the tests in her file (she did!). Changed her to another neurologist on the 6th day of Aubaugio. Always had pain for past 5 years since dx, ESPECIALLY A BURNING PAIN IN MY BUTTOCKS AND TAILBONE AREA THAT SPREADS UP MY BACK INSTANTLY WHEN I WAKE TO CONSUME MY NECK, EARS AND FACE WITH FLAMES THAT MAKE ME SQUENCH MY EYES SHUT AGAINST THE PAIN (QUESTION 1: ANYONE ELSE HAD THIS TYPE OF PAIN?) but seemed the Aubaugio was magnifying the pain. New neurologist said Aubaugio could not amplify pain and that she felt I was in a flare. Scheduled me in for an updated MRI of brain/cervical spine. Meanwhile, the pain continued to intensify. Saw my pain management "professional", who blew me off. He and one of the surgeons at the local back institute had given me four sets of invasive injections into my tailbone region and lower back where I had a slightly bulging disc over the past 6 months. None of the injections helped and the back surgeon finally said, "It must be MS". I was the first MS patient he'd ever treated, so he did what he could, but was good enough to admit it was beyond his ability to help. Not the pain mgmt. guy. I realized, and the back surgeon concurred with my opinion, that the pain mgmt guy, whose office was housed with the back institute's offices, believed that one could not have pain unless that pain were in the back. Dumped him and sought a new pain mgmt dr. By that time, I was 5 weeks into the Aubaugio and becoming insane with pain, but it takes a while to get accepted by a new pain mgmt person. Then I broke out in what I thought were compression blisters on my buttocks and the tip of my tailbone. The eruption was acutely painful, adding to the burning pain I'd already felt in my rear. I could not sleep most nights and if I did, I'd wake 3 hours later, sobbing, fire and shocks at my tailbone and across my rear, flames rushing to my face. The new neuro said the Aubaugio had been prescribed at too high a dose, that I should have been started on 7 mg., allowed my body to adjust, and then moved to 14 mg., and that's what had triggered the flare. If she took me off the Aubaugio or lowered the dose, she said, I might have a fresh flare. The despair I felt that day, almost 5 weeks ago! As to the breakout on my tail-end, no one even bothered to investigate when I described it. After the MRI, I saw the neuro again last week. She reversed everything she'd previously said, told me that the Aubaugio had elevated my pain, but I wasn't in a flare. She was actually angry with ME and told me that my white matter lesion load on my brain and c-spine should make me have memory loss (yes, definitely) and numbness and tingling (paraesthesis), but not pain. She finally looked at the one remaining blister on my butt and coldly dismissed me with: "You have the shingles!!" It didn't matter that I'd experienced burning there for 5 years, intensified by what I now know is shingles. I told her I'd experienced a similar, very itchy rash on my right shoulder and back several times over the past 5 years. She said she could see no evidence of shingles' scarring on my back. I left stunned, knowing she believed I'd lied about my pain. The same day, I saw the new pain mgmt. pro for the 1st time. He identified the shingles scarring on my back. He told me that: (a) I am in a flare!!!; (b) that the Aubaugio triggered the flare at the high dose; (c) that the flare had triggered the shingles, which on this occasion had decided to crop up on my buttocks; and (d) that the injections to my lower back and tailbone had not relieved my pain because they had been given into the back of my spine instead of into the front of my spine. He said I would likely experience shingles every single time I flare from now on and it should be a symptom of a flare for me. QUESTION 2: HAS ANYONE ELSE EXPERIENCED SHINGLES AS A SYMPTOM OF A FLARE? He disagreed that the physiological evidence (i.e., the MRI) should be the final authority to conclude whether I was flaring or not, and he believes I am in the pain I'm in. He plans to do invasive injections into the front side of my spine, into the spinal cord, to see if that helps the pain, and if not, he wants to implant a device that will help relieve the neurological pain. He also wants to implant a device that will help with my rhythmic muscle spasms, followed by sharp shocks, in my legs bilaterally. That device works on muscles and though it has been approved for use by the FDA, it has not yet been released for use, but will be in the next 3-to-6 months. He is more than willing to talk to my neuro and expressed the desire to become a part of my "comprehensive care team"!! (Hooray!!) QUESTION 3: HAS AUBAUGIO TRIGGERED A FLARE IN ANYONE ELSE? I LOVE IT THAT THERE ARE NO INJECTIONS AND IT IS IN PILL FORM, BUT IT DROVE MY BLOOD PRESSURE THROUGH THE ROOF WHEN BEFORE, MY BP HAD BEEN LOW-TO-NORMAL WITHOUT CORRECTION. QUESTION 4: THOSE OF YOU WHO HAVE HAD THE IMPLANT DEVICES, PLEASE TELL ME WHAT IT'S LIKE. HE SAID THAT IN THE PAST, IMPLANTS WEREN'T DESIRABLE BECAUSE THEY DEFEATED MRI'S, BUT NOW THE TECHNOLOGY HAS IMPROVED AND MRI'S CAN BE MANAGED EASILY. THANKS AHEAD OF TIME TO ALL WHO RESPOND TO ANY OF THESE 4 QUESTIONS. I'M ANGRY WITH THE NEURO AND WANT TO KNOW HOW TO RESPOND TO HER WHEN I SEE HER NEXT, BUT I BELIEVE I'LL JUST LET THE PAIN MGMT DR HANDLE HER. WHAT MAKES ME ANGRIEST IS THAT AFTER 10 WEEKS OF AUBAUGIO, THANKS TO THE SHINGLES AND A COMBINED FLARE, I'M STILL IN ACUTE MISERY AND SUFFERING.
So sorry to read about what an awful time you've had with all these symptoms. I've never heard of an association between shingles and MS relapses, and either one triggering the other, and likewise that any of the DMDs could trigger a flare.
As I read your post, I guess a couple of thoughts come to mind: first, is there any reason you must continue to deal with neuro #1? It sounds like the relationship has broken down and there's a lack of trust on both sides, which doesn't serve you well as a patient.
Second, was there any discussion of trying a different DMD? There are now several on the market, and perhaps another will be more tolerable to you. Also, it might help to rule in, or out, Aubagio as the cause of your pain.
I'm sorry I can't offer more advice as I haven't experienced anything like you've described, but hopefully by bumping your post back to the top, others may see it and be able to answer your questions.
Just a little tip re: posting: you've included a lot of info in what sounds like a very complex case. It's a lot for a reader to take in, so breaking it up into small paragraphs makes it easier to absorb, and would make your key points and questions stand out. A lot of us have visual and/or cognitive symptoms which make it difficult to read and clearly understand large blocks of text. Text in ALL CAPS is also tough for many of us to follow. This might be why no one responded to you initially.
Good luck and I hope you find some relief and some answers very soon.
Shingles is a virus that is in the nerve endings but I don't think it's in our central nervous system - from what I know, there is not a direct link between MS and the shingles.
However, if your immune system is suppressed - and Aubagio is an immunosuppresant - it might allow the dormant shingles virus to activate. A quick search on the internet doesn't turn up any link between the two.
It sounds like the new pain med doc is a keeper - I am so glad you have someone who believes your history and description of the pain.
As for titration - the Aubagio site says it is available in 7 mg and 14 mg dosages but NO TITRATION IS NECESSARY. But there are exceptions to everythng and perhaps you would have done better with titrating the doses.
These implanted devices for pain, and delivering medicines to our nervous systemare pretty amazing -and can make a big difference in the quality of life.I'm sure your doctor can explain it in detail if you are undecided on this surgery.
Good luck with getting the pain under control - I hope you'll come back and give us an update.
Thank you for your comments, Lulu54! Yes, I'm aware that shingles does not have a direct connection, as it were, with MS. However, I do agree with my pain management professional that each time I've ever had a flare of my disease, for the past 4-1/2 years as charted in my journal, I've also had an outbreak of shingles--even when I was not on any DMD. Shingles is obviously not a cause of any flare, but it is a symptom of my flares, I now believe, just as the pain management professional believes.
And your observations on Aubaugio as an immunosuppressant allowing the shingles virus to activate actually makes a great deal of sense to me also. It also makes sense to me that this is an even simpler equation: pain driving both the flares and the subsequent shingles outbreaks. In looking back through my journal, I find that shingles has occurred on even my neck and ears during different points over the course of the past few years and each time when I was certain, or my treating M.D. was certain, that I was in a flare, irregardless of what an MRI might or might not indicate about the presence of a flare.
In any case, I'm taking 7 mg. Aubaugio now, but with little-to-no relief from pain. The Aubaugio nurse case manager calls me every few weeks for updates and reports, and I've reported to the manufacturer as well. I'd really like to get off the Aubaugio and try something new, but I don't think the neuro is going to allow it until she's certain I can't tolerate this DMD. I know I felt a lot of pain prior to Aubaugio, and I experienced many shingles outbreaks and flares, but I still felt better, overall, than when I started Aubaugio.
I do plan to ask the pain management doc to go ahead and do a tinsel device. No one should have to keep on enduring if there's some way to stop or reduce the pain without drugging me out of my mind. I'm not in a wheelchair or on a cane yet, but I feel myself going there. To me, I was in better shape before I began taking the Aubaugio, shingles outbreaks or no.
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