Shingles whilst on DMARD and anti-tnf drugs - any tips?

Wonkylegs

HI all,

well it never rains but it pours ........ well it does here at least :roll: :roll:

having missed MTX for 3 weeks with a mouth ulcer they reduced my dose and said to re-start it last Friday even though the ulcer hasn't healed, as the Infliximab needs to have MTX taken with it.

Then last night I find a line of red, itchy blisters on my back
GP visit this morning brings a diagnosis of Shingles :shock: and another 5 pills a day to take :roll: :roll: :roll: :roll: and an urgent blood test.

Oh, and stopping the hydroxychloroquine but keeping the MTX until I hear different from my Rheumy nurse - I've left them a message so sitting waiting for phone to ring!

just wondered if anyone else has developed Shingles on this combo?

thanks
Wonky xxx

PS - good job cyberspace is germ free apparently I am now infectious :oops: :oops: :oops:

salamander

Hi Wonky, that is a bit of a blow.

I've had shingles quite a few times but never whilst on these drugs. I do know it can take a few weeks to go and you feel very tired with it. I guess you have been given antiviral drugs, they reduce the duration of the illness.
Hope you feel better soon.
take care

fowls48

Hi Wonky


Sorry i have not, early days for me .I'm sorry this has happened too you ,it cannot be comfortable at all .

Hugs n kisses coming your way .
(((()))))XXXX

Karen.

tillytop

Oh Wonky I am so sorry. Shingles is proper nasty!

When I had shingles I wasn't on anti-tnf but I was on a goodly combo of DMARDS including Hydroxy, Gold and Cyclosporine if I remember rightly. The rheumatologist decided that I was over-immunosuppressed because of the meds (although my RA didn't seem to think so which confused me somewhat :roll: ). and I was taken off the Cyclosporine and the Gold dose was reduced until I recovered. It did take me a good few weeks to get over the shingles and I was quite poorly for a while but I had no lasting effects thankfully and was able to get back on the meds afterwards with no problems. I know that once you have had shingles it is possible to have it again but that hasn't happened to me.

Thinking of you and really hope you feel better soon.

Tillyxxx

barbara12

Oh Wonky I am sorry, it just not fair,you have had so much lately, I have never had shingles..touch wood (touching head), but I do know the sooner you get the meds down the better.
I do wish you well with it all, heres some very gentle hugs (((((()))) xx

dreamdaisy

Oh no! Poor Wonky, this is not on, it's not fair. :x I was on infliximab without meth but not on it long enough to catch a bug. With any infection I have been told by my rheumatologist to stop all the immuno-suppressants and I do. Please contact your rheumatology department ASAP and ask their advice - and I hope you feel much better soon. DD

stickywicket

I'm so sorry, Wonky. I've never had shingles at all and hope to keep it that way.

I think DD's right. Better to ask the rheumatology people. This is a tricky one. I hope things improve as soon as possible.

Wonkylegs

thanks for all your replies.

I have just heard back from the rheumy nurse.
I have to stop the hydroxy and the MTX until the blisters are healed so only painkillers it is ....... and am starting to feel fairly yuk to be honest.

Oh well, more time to decorate my crutches, read books and watch tv it seems. Now I have to break the news to my dad - who was meant to be coming at the weekend. I'm not sure it's safe for him now

(sanitised) hugs all round ((()))
Wonky xxx

welshgooner

Hi Wonky
I had, about six months ago, a nasty outbreak of shingles whilst on Meth and Humira. It wasn't very nice so I feel for you right now. The rheaumy stopped both the meth and Humira until the shingles disappeared, that was about six weeks. My joints were so painful and I don't think they've fully recovered even now. Best of luck, hope you feel better soon.
Den.

dreamdaisy

Oh dear Wonky, I am so glad you have had the advice from the 'horse's mouth' so to speak and although things may well be rough it has to be the right thing. Our lives are stupidly complicated sometimes, aren't they? I thihnk it may be the right thing to keep Daddy Wonky at arm's length for the time being - Mr Wonky too. Right, I'll dig out my hazmat suit and pop round to keep you company, OK? Take care, focus on getting better and I hope the wretched joints behave. ((((())))) DD

frogmorton

Hi Wonky

I am so so sorry you have got shingles it is a horrible thing to get (Lucy had it at 11) and am glad you have the antiviral.

Lucy's rashy thingies scabbed over pretty quickly about a week or less.

I hope that you will be back on your 'proper' meds soon and that the RA doesn't take advantage too much :?

Love and hugs and a get well soon draft

Toni xxx

Wonkylegs

thanks again to you all you've made me smile .... actually I'm wondering how I'm being quite so philosophical about it all, and maybe it's because I had a fair inkling of what was going on last night, and had time to come to terms with it all. After all, I suppose we know when we've spent many years with arthur (and his 'pals') on board nothing is ever straightforward. :roll: :roll: :roll:

I must admit i never expected to have the kind of phone call I did with dad earlier :oops: ........ who can't remember if he's had chicken pox in his 73 years :roll: (a lot of years to think through eh? ) ....... and who is going to take advice from his surgery tomorrow. Then he'll see how the land lies.

hugs (((())))
Wonky

Colin1

Wonky poor thing i believe its an awful thing and on top of all the other problems. Hope it doesent last to long. Take care Colin

kellerman

Oh Wonky....shingles is a awful thing to have. You've done the right thing with your dad. Its very infectious and stays in your system even after the rash has gone.I'm not in the least surprised you feel lousy.
Just get as much rest as possible and I hope you are feeling better soon. May

dreamdaisy

Hello Wonky, how have you been today? DD

tjt6768

oh Wonky. I'm sorry I biassed this earlier
I hope that you're doing ok..

At a distant Yorkshire Blokey hugs.. Cos it's an emergency lol

Look after yourself hun. Hope you feel better soon

stickywicket

Thinking of you, Wonky. (())

Wonkylegs

Hi
quick post using my phone.

done little but sleep and swallow pills this week. oh and drag myself on tiny dog walks!

think i've turned a corner today. feeling brighter but still no energy.

About to set sail in our ark ... i've seen my fill of rain this week!

Hugs
wonky

dreamdaisy

Hello Wonky, it's lovely to hear from you. I think you've spent the week wisely, keep it up (the sleeping especially, that always helps) and I hope that you are soon properly on the mend. DD

stickywicket

I'm glad you're feeling a bit better, Wonky. I hope the trend continues.

barbara12

Hi Wonky
Just calling in to leave some hugs....and I glad you are feeling a little brighter...unlike this blinking weather... ((((())) xx

jangar

Hi There
I get recurring shingles because I have low immune system due to other medical problems, probably like those on Methotrexate etc. You would have to check with your doctors on this because our immune system attacking us. I use aloevera gel to cool it down and get some relief but I also take VITAMIN D and SLOW RELEASE VIT C Tablets to get a break from the shingles which is chronic. I only do this for a little while etc and It makes my sjorgens syndrome worse (it affects my lungs) si I play a balancing act. I just have to get a break from the shingles sometimes, you get so run down and further dehydrated with it. Anyways, maybe it might help but chat to your doctor/rheumy first bw JG

ratface

Hi, had shingles year before last. Painful to say the least. I found using calamine lotion DID work if I held a wad of cotton wool soaked in it over each clump of them for a few minutes at a time. I had been just passing cotton wool soaked with calamine over them which was doing nothing at all (other than cooling them for a few minutes).

Think I also had to stop mtx. for a while.

Hope this helps

ratface xxxxxxx

Wonkylegs

sorry not to have been back and posted again for so long.

These last 3 weeks have been tough and continue that way. I think the shingles are finally going (see GP tomorrow for another check) so am hopeful of an end to the antivirals. Only then can I think about getting permission to re-start the MTX and the hydroxychloroquine. :roll: :roll:

arthur, as you can imagine, has taken full advantage of the situation. I even now have a diagnosis of Tennis Elbow :shock: which has to be the biggest joke going. :roll: yet another torture device (sorry I meant helpful splint ) is in the post to me. Time will tell.

sorry not to be on the forum much.
take care all
wonky xxx

stickywicket

I hope tomorrow's appointment goes well, Wonky. I shall be thinking of you.

dreamdaisy

Good luck for today Wonky. DD