Shingles with your CTD anyone?: Hi all, It's been... - LUPUS UK

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Shingles with your CTD anyone?

Hi all,

It's been ages since I've been able to post. Life seemed to get hit with a bomb. Things are still not right yet, but I'm finding ways to pull focus back from only the terrible. But the second you start to get the balance (or think you do), another hit happens. This time -- Shingles! I was utterly surprised. Thought I was dealing with a female problem or something to do with the experimental reduction of HRT to see how it impacts the CTD, but the GP was adamant this was Shingles. So I'm off my Cellcept (as it interferes with the antivirals) and the couple small ulcers I had originally gone in with turned into over a 2 foot band of blisters in a 6 hour period. I've been zapped 'down there' multitudes of times and am praying I started the meds early enough so that there is no permanent neurological damage. Anyone had this?

Panda x

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Sorry you are having a rough time. I haven't had shingles myself but have recently read about the importance of getting early B12 injections (and wearing silk!) see - bmj.com/rapid-response/2011... so might be worth running it past your GP etc if not already discussed. Best wishes

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Thank you. That is really interesting about the B12! And I'm going to buy some silk underwear right now! : )

x

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No but it sounds absolutely lousy. I do have problems with neuro pain down below so you have my sympathy you poor love!

Tx

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Thanks Twitchy...I know you understand.

Px

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Wish I didn’t 🤷🏼‍♀️🤗

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Gentle cyber hugs to u panda 🤗🤗🤗

I've got shingles too!! 🤪This is the second time I've had it..first time was 10yrs ago n I didn't seek any medical help..I didn't have lupus diagnosis then either so just battled on..it was horrendous!!

This time however with this fabulous forum..I posted about it n got such good prompt advice!!

I started feeling ill over a weekend n by the Tuesday I was convinced I had it again..same place as last time..my left side, shoulder, chest n all down my arm!! Got emergency appt with GP n started on aciclovir on Tuesday evening..like u hoping n praying that we had caught it in time!!

I have cutaneous lupus n my skin is always breaking out.. the poor doc was having a few problems figuring out what was lupus rash n what was shingly bits!!

To give u some hope..I do believe that the antivirals made a huge difference..I took them for seven days n yes blisters came but they didn't do the exploding thing..no itching either!! The last time was much worse with no meds!!

I still had a lot of pain in my chest shoulder n all along my arm but thankfully I'm prescribed tramadol for pain now so I used them along with paracetamol.

I'm on immune suppressant ciclosporin n I'm on long term pred as part of my treatment for lupus n the doc told me to keep other meds the same which I did

U are definitely not alone!! I think I can say here that I've been talking to barnclown because she's got it too..we've been cyber hand holding for a few days now..so come along to the shingles support group!! If u check out barnclowns last post about algorithms you'll find our conversations some way down..n if u look my last post you'll see all the wonderful advice I got from here xx💐💐💐

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Wow...you too AND Barnclown? (Misty14 notified me that Shingles was being posted about right now -- so we have indeed found each other.) I will find Barnclown's post and check in there too. But thank you, thank you for replying Krazykat. I can't believe we got it at the same time! I started my Aciclovir on Wed and I got loads more blisters after that. They were itchy when they popped up, but the itch is much much lighter than what comes with CTD rashes, so I'm managing. It's the all over nerve inflammation and exactly where this is located on me, when nerves are one of my manifestations to begin with that is making this a wee bit more difficult. My Gp couldn't believe where I got them. I frankly can't either. 😲 I'm going to pay close attention because you got them twice!! That's awful.

Thanks again.

Px

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Yeah u do have it in a particularly tricksy area!! 😬😬 Same as u it's the pain that comes with it that's horrendous..I don't know if this will help but if u can bathe putting some sodium bicarbonate in bath water n having a sit in there might help to ease the blisters n soothe the skin..I've had to rest my arm on a pillow with a silky pillowcase on it..so u might find relief n some comfort from sitting on something silky? 😕

R u taking any pain relief? I'm prescribed tramadol so took them when absolutely necessary n paracetamol

It's important to drink plenty as aciclovir can make u dehydrated n if u find it hard to swallow the tabs check the drug info because it can be dispersed in water.

I'm two n a half weeks in now n I have to say that although it's been awful my lupus flares r much worse!!

When I had it ten years ago I was reasonably healthy n lupus wasn't in my life..stupidly I didn't go to the docs n I suffered for ages!! This time with proper management n advice from this fabulous forum it's been much more manageable...n no fatigue n brain fog!! So all in all I'm relieved that so far I haven't had my particular wolf to deal with as well!! I thought that this outbreak of shingles would cause a flare..but so far so good 🤞🤞🤞xx

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So I've just had a little sitz bath in salt on Gp's orders. I've been having those a few times a day. Bicarb sounds a good idea too! Will try that. Am not too itchy, but I want to dry these suckers up! My rash is pretty florid as well as turning into those little bubbly things. How is yours doing now?

This time, or last, did you have any numb patches come up anywhere on the side where you were affected? For the last couple nights, I'm noticing the front of my left ankle (on the affected side) is going numb.

I can barely handle the feel of my clothing brushing on my skin on the affected side either. Are you having that happen?

Shingles fellow-in-arms-with-you!

Panda x

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I've still got little bubbly blisters coming up on my hand in a small patch..but overall the blistery spots that showed up first have dried up!!

Yes to the numbness as well..my whole left arm was unable to function..I just had to hold it with my right one!!

Yes to the burning..couldn't stand anything on my skin n even if hubby came into the area on my left side..I felt it..he didn't even touch me or anything..was like I could feel the pain in my aura!!

I'm lucky in the respect that I have cutaneous lupus n my flares have been horrendous..I have got loads of soft things coz that's how I have to live my life anyway..I've got silky things..soft fleecy things that I can use!!

Because mines in shoulder n arm..I can keep it uncovered..but u with where yours is?? 🙈

Sitzing your lady garden..great..that's gonna help a lot!! I was placing a soft flannel with bicarb on my bits n bobs..including left boob!! It does help to soothe the area!!

Shingle sisters!! 🐼🐱🤡Xx

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Awe thanks shingles sista! It's very good to know the similar responses. I actually do recognise this pain on brushing up to things as part of my CTD, where my nerves are also involved. So it's giving me a good overall grasp.

Relieved to hear about the numbness and that you seem to have got feeling back?

I did note that both you and Barnclown have a longer dose treatment course than I do though. I wonder if it will make any difference. I've only been given 5 days -- 800mg. Guess I'll just call the GP on Monday if I'm still a-go. Hoping this will be loads better by then. You're giving me hope with some of your early blisters gone. That's great!

P x

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I have just looked up my record of what I was prescribed exactly..aciclovir 800mgs 5 times daily for 7days..I was taking it every four hours during waking hours!! R u taking 5 times a day? Xx

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Yes! Thanks Kk! 800mg 5x per day, but only for 5 days. I'm calling the GP for sure on Monday, because I've been shouting all over my kitchen this past half hour. Nerve stabs in my left inside thigh over and over and over. If others are getting longer treatment, I'm sure I need that too. I'm okay about 20 mins after the dose and topping up with pain meds, but at 4 hours it starts all over again.

P x

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Awww I'm with u there sugar..when a gals gotta shout..she's gotta shout!! Let it out!! Your taking the meds the same as I did even if it's for five days..they will be working..this virus is a bugger though!!

The stabbing pains that I had in my chest have stopped now thankfully but I'm still having shingle stuff in my arm n hand..on the left hand side so I can hold your hand with my other one 🤝🤝grip tightly..I'm with u 🥊🥊🥊xx

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🤝🤝 💕

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yes those antivirals make a big difference and get them quickly too. hope you feel better soon. xx

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My mum works in a gp surgery and they have stocked pile medication for shingles .

It does sound like a nasty illness to get.

Sending you my get well soon wishes to you dear 🐼 and all of you other lovelies that are suffering

Xx

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Thanks dear Lisalou... 🐼x

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Aww thanks Lisa 🤗🤗

Thankfully I'm through the worst of it I hope 🤞wouldn't wish it on my worst enemy!!

I haven't got it on my lady parts though 😬🤪😬🤪😬🤪xx

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Oh, you poor soul. I've had shingles across my back, but this is in a different league. Hope they get you some strong pain relief soon. xxx

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Thanks for your empathetic words and your sympathy. It always goes a long way here.

P x

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Hi. You're very welcome. BTW, a friend of mine - who doesn't have any AI problems - also has shingles, so it seems that there's a 'lot of it about' just now! Gentle hugs. xxx

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Oh gosh panda that sounds sore, what a place to get it. I can only imagine what that must feel like.

I’ve been to the gp today with sore eyes and ulcers and while there showed him some drying spots along my right hip, yep shingles but resolving... all I had was a mild burning pain, I thought it looked like shingles but because I didn’t have much pain I didn’t bother going to the dr. I’m extremely lucky I think

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Oh my goodness! What is going on here? Thankfully yours stayed mild, but looks like it can be a recurring thing. One more thing to be vigilant about... Sorry to hear about the eyes and ulcers, not fun at all.

Yep...being zapped up the wazoo every 5-15 mins during the onset was not really an experience I'd wish on anyone. It's now a travelling brutal zapping, under my backside and even going down to my toe at times.

Thanks for weighing in. Can't believe you had this too.

Panda x

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That sounds absolutely brutal. Have they given you some strong pain relief? I didn’t even realise you could get it there but guess it has a rich nerve supply so why not.

Wishing you a very speedy recovery

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I'm just taking paracetamol and ibu. It is making a difference -- a LOT less zapping going on now. I've got some Tramadol (old stuff, probably expired) and Amitryptiline), so I'll go that route should the zapping return. Apparently it's very rare to get it starting one side of the vulva. My GP had not seen it before, but she knew it happened.

Thanks for the wishes rolybear (love your cute name btw).

From one bear to another...😁

🐼x

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I’m with you on the expired Tramadol. Lost count how many times I have raided the cupboard and found some sort of lotion or potion that has expired and just taken it.... just in case, I’m not admitting to or advocating taking expired medication, check dates etc etc.. bad panda... 😀

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Yikes!!!! 🤪🤪🤪Xx

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Ouch, poor you. There seems to be a 'lot of it about' see my post above. Don't know why...…..

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hope you feel better soon. xx a lot of it about. Lou

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Hi Panda2 -

I have been keeping up with your and others’ singles ordeals. Concerned about all of you.

Oddly, I had an appointment with the rheumatologist this week, and he once again mentioned the new shingles vaccine. I did attempt to get it when it first came out but there was a big shortage. Just got my first dose today.

What is the status in the UK? Is it not recommended for patients on immunosuppressants? It would be good to know. The pharmacy told me the vaccine is 90 percent effective against shingles.

Thinking of all you suffering with this. I mentioned you all to the pharmacist who gave me my first shot!

Xk

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Kay! That is brilliant that you've been vaccinated! And weirdly synchronistic how this is coming onto the table in one for or other for quite a few of us!

Looks like you can only get a Shingles vaccine on the NHS if you are 70 or 78!

nhs.uk/conditions/vaccinati...

Thanks for your worries. 😊

Px

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Looks like our CDC is recommending it for anyone over fifty. It is recommended if patients are on low-dose immunosuppressants, so that would likely include many patients with autoimmune disease, right?

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Yes, I think it technically would...if we were in the US. Not sure the rules here are the same, but I'll be definitely asking my GP after this. Thanks for that info!

Px

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I had shingles in September and left it because I didn’t know what it was. Just thought I was working too hard! As was exhausted then got a long band of blisters to the left side of my back around to my stomach apparently it follows the nerve line. They believe it was the trigger for my possible SLE and now current diagnosis of UMCTD. I’m now on treatment for SLE and only just starting to feel better! The fatigue lasts an awful long time. My nerve pain has been consistent but no way near as when the blisters were visible but they say it’s part of the UMCTD now. 🤷‍♀️

I just take regular painkillers and anti inflammatory medication to regain some sort or normality! hope that’s helps. :)

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Oh dear, that's terrible... Sorry to know you've had this experience. It is good to hear that you are starting to feel better -- it is the way with this disease, that it takes an awful long time after an awful lot of treatment.

I'm not liking the fact that I am having extreme nerve pain and oversensitive to touch areas way outside the blister band -- all the way down to my feet. This isn't normal from what I've read, so I'm hoping this will ease off by end of antiviral treatment.

The painkillers do help with the oversensitivity, but not the nerve stabs.

Thanks for your response.

Panda x

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The only sharp pains I had were when blisters were open or still visible. Could be possible nerve damage if it’s still that painful in the areas the shingles were. I’d push for it to be looked in to. xx

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Hi panda

The pain will travel along the nerve pathway n u will feel it even if there's no visible evidence..for instance with this episode for me..first I got stabbing pains in my chest n lung n left breast..then it travels down my left arm n I lost use of my arm completely..just had to hold it with my other arm!!

Blisters only appeared on my shoulder..elbow..n hand!! But the nerve pain travels down my whole arm n the burning 🤪xx

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Kk that's bad. So sorry you are having this in your lungs even!!! But it really helps me to hear that because I had 2 stabs in my diaphragm today! They were seconds apart and I nearly keeled over. I have been stabbed like this willy-nilly as some of my first UCTD symptoms, so it's not unfamiliar to me. I appreciate hearing that it has travelled all the way down your limbs. Though I'm struggling to connect nerve pathways -- vulva, diaphragm, toe... Will look it up later.

Hang on in there muskateer!

P x

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That's very interesting Angie 🤔

I had shingles 10yrs ago n was relatively healthy..I didn't go for treatment at that time.

Since then I have developed cutaneous lupus (so far)..I've asked my dermy if he thinks shingles could have started off n he's not really sure.

I've now got it again n I'm kinda secretly hoping that my lupus may go into remission for a while n give me a break for a bit!! 🤞Xx

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My GP and consultant said stress and some viral infections have been linked to trigger Lupus. Whether or not that is documented somewhere I don’t know but with two separate areas telling me so I’m guessing it must be. Research will be available on the area I’m sure. Unless it’s just a guess. I was perfectly healthy before; I’ve had bouts of sudden illness and a blood clotting disorder since aged 11. I trained 6x a week, worked full time, ran around as I always did until shingles. The consultant even said the first time he believed my blood tests were all a result of a post viral. He wouldn’t confirm UMCTD until 8 months on and treating me for SLE as he still says blood results are unspecific even with a positive ANA and twice now for borderline Lupus. Blood results have raised continuously since the shingles and no sign of remission in them yet. However external symptoms are much improved since I started hydroxchlorine (misspelling) in May. xx

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Thanks for that 💐💐

I was relatively healthy..not as healthy as u by the sounds of it!! My youngest daughter moved away as she was having a tricky time n I thought it was 'empty nest' syndrome at the time!! So yes was stressed..she was only 17 n was going to live with her dad..not a good idea in my opinion but hey!!

My GP n my dermy both admit that they're pretty much in the dark with lupus..but they're both doing their utmost to help me n keep me as well as I can be n I'm grateful.

I get it totally with the spelling of these meds..I find myself spelling them over n over in my head until I get it right 🐱

Say hydroxy n we all get it!! Good effort though!! 😹Xx

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I did read in lupusuk magazine that it can be caused by viral infections such as glandular fever..n it's that that got me to thinking that shingles may have caused lupus to manifest!! A little info goes a long way!! Xx

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I'll just post this website and some contents incase anyone comes upon this thread down the road. This page was up to date from June 2019.

uptodate.com/contents/shing...

"Complications due to immune suppression — People with a weakened immune system, including people infected with HIV and transplant recipients, are at substantial risk for severe varicella zoster virus related complications."

"Treatment of shingles usually includes a combination of antiviral and pain-relieving medications. The affected areas should be kept clean and dry. Creams or gels might increase the likelihood of a secondary bacterial skin infection and are not recommended.

Antiviral medications — Antiviral medications stop the varicella zoster virus from multiplying, speed healing of skin lesions, and reduce the severity and duration of pain.

Antiviral treatment is recommended for everyone with shingles, and is most effective when started within 72 hours after the shingles rash appears. After this time, antiviral medications may still be helpful if new blisters are appearing."

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Shingles is it awful disease that seems to last forever. I got shingles about 15 years ago and right after the shingles cleared up it seem like my autoimmune diseases went into full gear.

I used lavender oil on the blisters that were not open maybe that will help you, but please talk to your doctor before using anyting. Get better soon and don't SCRATCH. 🤯

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Thanks Kismetsoul. Guess I need to be watching more than the virus, hey? I don't like the sounds of this causing our diseases to get worse. I'm amazingly not itchy now at all. So that part of the antivirals is working at least. Gives a little hope.🤞

P x

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Had shingles maybe 3 years ago, sore stinging blisters under one breast. When my gp saw them she said shingles straight away. Couldn't give me pills as I have kidney disease so it was a cream to apply. I can't remember how long it took to clear it up but it didn't seem to drag on for too long. I still get a bit of discomfort there but nothing like it was.

Had to see my gp for blood tests a week ago and the nurse offered me a shingles shot. I hesitated....seemed a bit like closing the stable door after the horse is long gone but she recommended I have it....Hope you get some relief, I know how painful it is xxx Hugs xx

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Hi Chris

If u have been offered shingles jab that's gotta be a good thing..u wouldn't want to get it again..it does recur as I'm finding out at the moment..I've got shingles now n it's my second time!!

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Yes, that is what they advise in the US too. The new vaccine is very effective and there is hope it will protect the patients most vulnerable like those with autoimmune disease and diabetes. Apparently, you can get it a second time. Some people have long-term complications, which is one reason this vaccine is so important.

Kx

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I was concerned the injection might trigger it off but the nurse said no it would make any recurring shingles less problematic. Hopefully I wont find out :)

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Gosh Chrisj, having to go this alone without the antivirals must have made you feel pretty nervous.. I'm glad to hear there was a cream, but sounds like you had a hard go of it, I'm really pleased to hear they are offering shingles shots. I hope it keeps this from never coming near you again! I'm going to ask for one after all this.

Hugs to you too.

Panda x

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Hello panda2, I took Shingles in the January of 2017. I can recall it very vividly. Then pain and the blisters and the itch where horrendous. To this day, I still suffer from nerve end pain right down my left leg. I never won't to experience shingles ever again.

I hope you have caught it at an early stage and with the medication, you are well on the road to recovery.

Take Care.

Thinking of You x

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Oh how terrible...You still have the nerve pain 2 years later..? I'm so sorry to hear that. What a real pain this is. If we can get boosters for this I highly highly advise everyone to get one! I think I'm okay, then I'm not. Nerve stuff is so random and so very painful. Thank you for your kind wishes.

Panda X

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I found putting cornstarch on the blisters is helpful. My mother used to use it for diaper rash. Get pure cornstarch, not any with talcum powder. Good luck. Also, use Valtrex/every day, even if I have no symptoms. So far, I have had no outbreaks. Good luck.

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