Folliculitis & immunosuppresants

Wonkylegs

HI

I currently take MTX together with Leflunomide, and for a while I have been noticing areas of possible folliculitis (inflammation of hair follicles) particularly on my arms. (I had a small area of it treated once before)

I didn't get my MTX today as the (presumed) folliculitis has now spread to a lot of my body.

Reading on the NHS Choices website there is very little info, but it does mention that people who are immunosuppressed are more likely to get it recurring.

I'm seeing a GP tomorrow, and just wondered if any of you have had this problem, and how it was treated?

I don't fancy missing too much of the meds, so I'm hoping that it can be treated without antibiotics.

thanks
WOnky

dreamdaisy

Is it meth rash WOnky? I think they look similar - if it decreases now you've missed a dose that would be an indication. I had a rash on my forearms when on the tablets and they took me off them pronto - I've had no such problems with the injected stuff, alas. DD

marion1952

Hi Wonky

I've never heard of this in relation to immunosuppression, but hope it can be sorted out soon.. (Keep us updated on this won't you?)

Take care

Marion x

Wonkylegs

thanks both of you

I don't know whether it could be the MTX - but I think it is probably unlikely as last time they treated me (which was for almost the same as today) they diagnosed it as folliculitis.

My normal GP is on holls so I will be seeing the other GP - he is always very thorough, so I may be some time tomorrow :roll:

I'll certainly let you know how I get on.

Wonky

dreamdaisy

Please do - we are genuinely interested. I wish you well. DD

Wonkylegs

well I'm back but no clearer to knowing what is what :roll:

The nurse and I both think that it is folliculitis, but the GP immediately decided that it is not red enough (it was calmer today than yesterday, as it is much cooler today) and is much more likely to be a reaction to either the MTX or the Leflunomide. :shock:

so .... no MTX injection today or until further notice ..... I had to come home and ring to leave a message on the rheumy nurse answerphone (to await a reply goodness knows when but within 3 working days usually) ....... GP is goign to try to ring my consultant's secretary for advice - not helped as my consultant has just retired :roll:

no clearer, no less itchy (but the antihistamines for hayfever are helping with that) no MTX and wait by the phone for further instructions.

I love arthur :x :x :x :x not!

Wonkylegs

Del - thanks that's interesting to know. To be honest I've had some small amount of it on my arms for ages, and once before my usual GP treated me for folliculitis, but this is a different GP who always is very thorough, and he'll not make a decision without input from the rheumy team ....... so we'll see what they come up with - an appointment in clinic would be a surprise but stranger things have happened

WOnky

dorcas

Hi wonky

I hope you don't have to wait too long before getting advice from rheummy especially with having to stop your Mtx..

Did your GP take a swab to make sure it wasn't infected folliculitis?

When I had that wound infection I read on the net that peeps with suppressed immune systems are amongst those more likely to get the infected form of folliculitis....not that I'm wishing that on you :roll: but it is treatable with antibiotics.

not easy to wait for others to get back to you!

Iris x

Wonkylegs

Hi Iris

not heard anything yet but that is no surprise as the GP will be in surgery now and the helpline will prob. not get my message until 12 noon tomorrow (they only take messages once a day usually at 12 noon)

I did look up things on sensible sites that I thought I could trust last night .... and really did think it was what I had - for the reasons you mention! It sounds to be quite common and I thought it would be fairly simple to deal with, but I'm never simple if things can get complicated with me they usually do!

dorcas wrote:

Did your GP take a swab to make sure it wasn't infected folliculitis?

no he didn't :roll: :roll: he was certain it wasn't and that was that

we'll see what happens.

thanks again
Wonky

dorcas

why on earth do docs assume they know it all. :roll: :roll:

one little swab that's all...would have confirmed or not what's going on. honestly :? instead you're having to wait...and wait...and wait. frustrating eh :shock:

let us know wonky when you get a call back?

Iris x

tillytop

Hi Wonky
so sorry that you are having to be off your meds until this is resolved for you. I know that immunosuppression can cause all sort of itchy skin type problems but hopefully yours can be diagnosed and treated effectively so you can get back on your meds asap.
Very frustrated for you that you have to wait so long for a helpline response. Given the potential issues with these type of drugs you would think, wouldn't you, that the "helpline" would respond quickly to any calls. It's the same a my rheumy unit too so I do understand.
Thinking of you.

Love Tilly x

chris7

Hi Wonky

Sorry you are playing a waiting game there with all this. I can't offer any advise at all but just sending a hug, and hoping you get some answers and relief from the itching soon, and get your meds back to normal. Must be so frustrating for you.
take care ((( )))
Chris x

Wonkylegs

thanks again to you all

at least I've only had to stop the MTX, so the leflunomide is still working, so for that I am thankful.

I will probably get a call back from one of the rheumy nurses tomorrow, subject to their staffing levels, it being holiday time ... but may hear from the GP too .... he is known to ring at all times of the day and night! I'm jumping ever time the phone rings!

I'll let you know.

thanks again because it was getting to me this afternoon and all these replies have really helped.

hugs
WOnky

Wonkylegs

well ..... the rain came down today and the phone calls they came too Now I really know it is Friday 13th

Phone call 1 - GP wanting to know all manner of things again .... then asks me to go to surgery to have my temperature checked as 'why hasn't it been checked here?' :shock: I was only there seeing him yesterday :roll:

Phone call 2 as I'm on my way out of the door .... rheumy nurse ...... stop MTX for two weeks :x ... if I still have the rash on Wednesday ring the rheumy helpline and they will get me seen in clinic because they need to see it :roll:

Arrive at doctors just as the heavens explode, meaning that I look as if I am fresh out of the shower as I arrive in reception :roll: :oops:

Temp checked - no temp (I told him but no .... had to do it himself :roll: )

More questions .... then a l o n g discussion of the merits or not of possible taking antibiotics 'just in case it is folliculitis after all ' :shock: but end up leaving having been instructed to buy some coal tar soap and use that twice a day. Scour the shops until I finally find some that has 'coal tar fragrance' :roll: but it doesn't actually have coal tar in it ..... but there isn't anything else according to the pharmacist.

Have you any idea how that stuff smells :shock: :shock:
I will need to hand out pegs to anyone who comes near me

:oops: :oops: :oops:

Joints are screaming already with the rain ...... now I just hope the rash goes PDQ or I'll be off to hospital later this week just when we were going to be having days out this week as hubby is on holiday from work. what a fun holiday week this is going to be :x :x :x

sorry .... this is turning into a rant so I'll go and soak my bones in a foul smelling bath :roll: ..... now didn't someone say if you want to not smell something put vaseline up your nose ........... where's the vaseline !

wonky

ironic

Hi Wonky,
You've had a day of it Coal Tar soap was always used when I was a nipper, very good it was too. Seem to think that they stopped using it some daft rule or regulation :?
How is littlelegs? I do hope you manage a few days out next week it would be such a shame if you can't.
Lets hope you can fit the appointment in early next week and get them out of the way.

Hugs,

Ix

dorcas

oooohhhh Wonky :shock: hand over the pegs ...coal tar? I can smell you from here.

What a Friday 13th you've had :!:

After all that..... getting soaked, GP, nurse, will they/ won't they, antibi / not antibiotics....to be told to go use coal tar...you poor thing :roll: wonder what'll be next?

sorry though that arther's screaming his head off. not good having to come off the Mtx for yet more weeks while they wait and see what the rash is doing. did the doc still not take a swab? :roll: :?

take care Wonky. hopefully the coal tar will help.

love n (((hugs)))


Iris x

Wonkylegs

HI Ironic,

littlelegs is fine thanks .... apart from her usual rain phobia she won't go out if it is raining :roll:

was meant to be going over to dads tomorrow to stay for the night, but the weather forecast is horrid, and we were going to cut his grass, which is swimming at the mo after today's rain ..... so may not go till sunday now :roll:

who knows what we will be doing this week ... the weather has it's own ideas :roll: :roll:

thanks
hugs
WOnky

ironic

Aw Wonky,
This weather has really stopped everyone getting on with things. My poor garden is really suffering. Autumn has come early for some things. I have mushrooms growing!!!
Sunday is supposed to be a better day so your dad might have his lawn cut after all.
My cat does not mind the rain. Odd is'nt it how some animals react.
My friend had a lab and their cat used to walk under it to keep out of the rain

Hugs,

Ix

marion1952

Ooh Wonky .. sorry that you had such a fraught day yesterday and that your joints are bad... I do hope you get sorted out soon.


Hi Ironic: cats never cease to amaze me.. they are so clever..

Marion x

Wonkylegs

HI again!

well here I am again after another coal tar bath

It doesn't seem to have had much effect so far :roll: other than to stink the house out :oops: :oops:

Sorry Iris - you posted about the same time as I did so I didn't see your post yesterday .... wasn't ignoring you! and no ...... no swab

felt pretty rough this morning but got a bit brighter through the day ...... only to find that dad is full of cold ...... sheffield was soaked again ..... so was planning to go tomorrow ..... only now I have a bit of a temp and a huge ulcer on one of my tonsils which is inflamed. :x :x
so will probably not go tomorrow .... daren't pass anything on to dad, and he doesn't want to give me a cold :roll:

still, I got to go to the garden centre today

hugs
Wonky

dorcas

Hi Wonky

Ulcers on your tonsils must be agony :shock:

You sound as though your body is a bit 'run down' with having the itchy rash and now a temp and ulcers.
maybe they are all connected :idea:

your system needs a wee boost and maybe having to stay at home today and rest up will be good for you. although sitting looking at rain isn't exactly inspiring!

If the coal tar bath isn't helping perhaps you shouldn't wait until Wednesday before contacting rheummy....especially as you have additional symptoms.

Coal tar is smelly/ messy stuff but coal tar shampoo can be good for hair! I used to get it on prescription for my sons (both had childhood eczema) and both have great hair.

hope you feel better as the day goes on Wonky....it's sunny and warm up here in Scotland today (for a change) so will bottle some and send it down carrier pigeon.

Thinking of one very capable and caring pigeon...has anyone seen our Cris (skezier) :?:

Iris x

Wonkylegs

Hi again ..... sorry been AWOL spent two days in bed. :roll: :roll:

Del - that is what I had expected to be given, but well this GP had other ideas :roll: and I have put off going to see him again this week ... but think I will probably go tomorrow or ring up at least.

Iris - thanks for the advice .... you will be pleased to know (well you know what I mean ) that i have been a good girl and spent two days doing nothign but sleeping, watching TV and reading ..... although I did manage to cook a meal tonight with rather a lot of help!

ulcer is still in residence, but don't feel so achy and have a trifle more energy .... in short bursts.

as for the rash ... it's still there and I'm sure it is sun related because I sat outside for 15 mins this afternoon in the shade, and tonight it is as bad as it was on Friday :roll:

we'll see what happens!

take care
WOnky

dreamdaisy

Oh WOnky, you are going thro a rough patch at the moment, I am so sorry. I'm glad to read you spent a couple of days in bed, that was a good move and well done you. I hope you are feeling the benefit of that somewhere about your battered self - it will all get better, I'm sure of that but I don't know when! Take care. DD

chris7

Hi Wonky

So sorry you having a grim time of things there still. Yes we have had some downpours in my bit of Yorkshire too!! Hope you are soon feeling a little better. Just wanted to leave some buckets of hugs and healing for you. ((((( ))))
take care
love
Chris x

dorcas

Hi Wonky

I'm glad you spent a couple of days in bed but so sorry you've still got the rash and the ulcer :roll:

Please do contact the docs tomorrow ...

he did say didn't he to give it til Wednesday to see if the rash cleared and he'd see you again and contact rheummy :?:

so maybe tomorrow will see you getting something that will help.

fingers crossed for you Wonky.... how are your joints reacting to not having the Mtx?

thinking about you

love n (((hugs)))

Iris x

Wonkylegs

HI DD< Chris & Iris,

thanks again. Feeling a little more like myself today but still not done much.

I rang up the GP today to see if they wanted me to have bloods done with the sore throat and all ...... GP insisted I go right then, rather than to the nurse tomorrow when I had an appointment, so that was that ....... FBC has come back fine apparently ....... he did a throat swab .... said my throat looked NAD (normal :shock: the ulcer is still there :shock: :shock: ) but he has decided that, looking at the skin rash, it is probably a folliculitis after all

decidedly unnerved by the following conversations regarding meds, but after a bit of wrangling on my part and a lot of deliberating on his part, I've got a week of antibiotics, and we'll see what good that does.

I'll be ringing the rheumy nurse helpline tomorrow as they asked, but they may not want to see me asap now I've got the antibiotics ...who knows! if they don't I have an appointment early Sept.

I'll let you know how I get on


hugs
Wonky