[nicky00]

Just wondering as I have been taking Mepacrine for a good few months now...

I have what I think is a 1st time ecemza which is over my hands in the form of red hot,dry and trying hard to turn nastier ecemza.

Im having a few breakouts on my legs but nothing more bothersome as I can itch there in general anyway.

Far away and long ago before the diagnosis of lupus when I had young children and no sleep etc etc I used to get itchy (personal bits:blush.

They have come back.

Self diagnosis is great but to be honest Im getting very confused.

The down their problem is an old on and off one.I was treated for thrush but that was a misdiagnosis and cortisone cream sorts it out in general.
Found the rhemedy as I had a slight bit of weeping eczema (ONCE on my eyelid) again when the children were young. I was a runner at the time and very fit.(fit in the physical way not the attractive way:lol

Lichen planus is an autoimmune disease which can rise is head within or without lupus and it is also something I understand to look out for when one is taking Mepacrine.

My doctor will say ' Im not an expert' and tell me to ask my Rhumatologist.
My Rhumatologist will shrug , be dismissive or vacou00s (I have a lack of confidence from past experiences).

I see my Rhumie on 17th so not long to go.

I need to be a bit armed with options and ideas before i go which keeps him on his toes.

Any info appreciated.

By the way I do know should \i get lichen or have it then I must cease taking Mepacrine immediately as it can lead to a type of anaemia etc.

Im jsut on the verge of cutting down the dose to 50g three days a week but only began this week.
I was on 100mg each day.

I have not felt unwell today but really really tired for the first time in ages to that degree.

I lay in bed and read and slept or rather drifted and felt honestly that I could have lain there all day.

Im now up and washed and looking wonderful with renewed engergy but me thinks ( ok a bit paranoid ) am I getting tired because of anemai.

My anxiety rates are in the 3/10 over this so dont worry.

Nicky

 

[nicky00]

I don't think I was clear in what i was trying to ask in my post...

Anyone experience (ed) (ing) Lichen Planus and or Ecemza alongside lupus.

I thought I had excema but Im not sure I have lichen planus as well or instead... and Im taking Plaquenil and Mepacrine/Quinacrine
All my hands feet are driving me mad with itching and other personal bits also.


Nicky

ps off to the rhumie Friday but I just wanted some food for thought before i go.

 

[Clare.T]

Hello Nicky

That would be a real bummer !

Have you looked at the dermnetnz skin site? I hope the doctor can give you an idea what it is or anyway what it is not although if this is your local fellow maybe one can't hold out great hopes. Perhaps the only way to tell is to stop the antimalarials to see if that helps starting with the quinacrine first I suppose since that is more likely the cause.

I think I'd want the blood tests done for anemia if that isnt proposed by the doc.

Strangely, one of the treatments for non drug induced lichen planus is Plaquenil There is one person here who has lichen planus with their lupus. Try the advanced search engine here.

Immediate relief seems to be anti histamines and a short course of steroids plus topicals.

All the best
Clare

 

[nicky00]

Yes ~Claire a real bummer!

Ok all, just to update.....

Had my Rhumie appointment a week ago. He asked me if I ever had psorisis in my family ( no) , and suggested I go back to my GP to ask for a Dermie referal.
He then looked quizzical about my liver function test but said nothing and when I asked what my ESR was he showed me it being 42.....he then said somthing about that being related to my liver function..

My GP apptoinment was brilliant.
She was more than happy to refer me but agreed that I would try some hydrocortisone cream first.
Her diagnosis was that lichen planus and excema can look the same ( I presume she meant in some cases as lichen looks more distinctive I thought).

Ive been offered to try out the new physio department we have built in our area to try to improve the quality of my tendons ,ligaments etc in my legs.

My heart fluttering ..

That is being monitered by the Health Centre when I book for a visit.

If results mean I need further testing then I can be hooked up to a device which monitors my heart on a daily basis (I need to press a button everytime it happens).

She did suggest that I go to A&E if they come on to that degree again if only to get a test there and then. She is not worried about my heart which is a good thing.

Of course the heart is fine at the moment and i infrequently feel the flutters,
my legs are the best they have ever been but the quality could be improved.

As for the itching........its driving me crazy...I can feel my skin crawling,burning as I type and the whole affair is putting me on edge all the time.
The kids are play fighting as I type and thats not helping

My hands burn and are super red and inflamed sore etc, my feet are not as bad.

They look dark red in places or purplish also...I really would like to get to the bottom of it and find a way of stopping it..

Ok all updated..

Have a good day

Nicky

I forgot to mention that the Rhumie asked me if I 'drank' much! re my liver test.....
Mentioned this to GP and she looked at my results and laughted...(?something she said about if that was the case your ? would be ?)

Sorry bit dumb about what she said as i wasnt bothered and she kind of said it to herself...I really should be more proactive

 

[nicky00]

Last week I saw a trainee doctor under GP supervision, unfortunately not my GP.

Sent away with stronger meds for a week which brings me up to date with my appointment yesterday.

Saw my own GP who has given me an 'urgent referall' to see a Dermatologist.

The two choices who have the smallest waiting list on her computer were 89 days and 57days. She stated that she didnt think the list could be accurate for an urgent list .

I phoned and the waiting list is 13 weeks!!. I should hear within 2 weeks when my appointment is.

Work collegues offered to pay for me to have private treatment( humble gulp). but of course I refused.
I phoned a private practice and they can see me next Wednesday.
Of course I dont want to pay for treatment but its looking that I may have to as I cant even brush my teeth now.

I phoned my GP's secretary this am to ask how one gets the referall speeded up for NHS or how one goes about getting mmy GP approval for a private consultation.

She told me that I make /wait for an appointment and the letter from the GP goes out and its the consultant who reads that letter who decideds if I should be then more prioritised and get a quicker appointment.

As I cant speak to my doctor until next week I have to wait till Wednesday.

Im not entirely sure if I see somebody privately I will get the treatment I need.
Its a protocol I do not understand.

Getting an appointment with my GP is ridiculously hard. Once the 20% patient quotoa is filled you have to book on the day at8am.
So for example I could book on Friday for next Friday only to be told the quota is full and I need to phone on the day next Friday.

This in turn means that when one phones on the day ( as I did this week) vigoursly holding the phone for 20 mins and organising the kids for school and getting myself ready for work, having an awful nights sleep re the itching and feeling like Im going into A FLARE etc etc ...only to find that the list is full and other people have got their appointment before me and i have to try tomorrow again on the day!!!

So I can for example book ahead if Im lucky....not need the appointment and somebody else who needed it looses out as they also have to gamble by booking on the day...its so frustrating.

Im going to wait till Monday to see what my GP recommends..

Nicky

 

[lazylegs]

Oh Nicky I sympathize with you. When I was in managed health care getting an appointment was the same way. In addition to the morning hassle I was usually on hold forever. Good luck getting an appointment.

Take care,
Lazylegs

 

[nicky00]

Thanks Lazylegs

Im not going mad with this then..
Nicky

 

[greenhaggis]

Nicky sorry to hear about your dilema!

On the subeject of calling, calling and calling GP - do you have ring back facility available, if so and your GPs phone system accepts it then it works a treat!

I have this available and can get a call through in minutes! If I rely on phoning and line engaged and then keep trying it takes sometimes over and hour to get through!

Hugs!

Lesley

 

[nicky00]

Hi Lesley

Yes I do have this and tried to use it....I ignored that I had that on the go and tried phoning as well ( I know that dosnt work but I felt more proactive)

Its good to know that you got through and yes I will leave it on ring back next time and not be so impatient..

Its reassuring to know that system works.

Thanks

Nicky

 

[Mary Ann 47]

Nicky,
Hi, I am new to this great site and I have been reading your posts. I feel so sorry for your suffering and the horrible lack of treatment. I can't imagine you having to wait so long for an appointment. It sounds like managed care is mis-managed care... Your hand condition sounds so painful, I hope something turns up soon for you.

God Bless You,
Mary Ann

 

[Clare.T]

Hello Nicky

I am appalled at what you're going through, it sounds well nigh unbearable for several weeks now.

If these are real good friends offering to help you, accept their kind offer graciously. They need to know they are helping you all they can. If it's your principles too well my view is that prolonging one's own suffering isn't going to alter the system. I'd probably be thinking seriously going up to St John's using the St Thomas connection. My reckoning would be that they are far more likely to be experienced with LP & lichenoid like eruptions( maybe due to the Mepacrine) and able to sort out what might be a quite complicated case and know the treatment that's most likely to be speedily effective and maybe get a long term plan. There might be something that would help the lupus too, like Imuran, I don't know.

A soothing ointment with tea tree oil could help with infection too I may have missed if you are trying antihistamines

Do get the speediest help you can though.

All the best and the best of luck

Clare

 

[nicky00]

Firstly Hi Maryanne, welcome and thankyou for replying to my post and that goes for all who have done so as well,

As it so happens I was physically sick in the early hours of Monday morning and this has been followed by to date by feeling very poorly.

The rash looks almost bruise like near my armpits and in my groin and I have a noticable white ulcer in my gum togo with the mouth rash .

Everything is getting worse. I had to take time off work which I hate doing and even considered going to A&E....but of course I havnt.

I have to phone my GP Wednesday at 8am to fight for an appointment and will go from there. I just want a speedy diagnosis so treatment can be started.

Private or St Thomas I will go for whatever but firstly I belive I need her referall.

I do feel appalled at how bad one can visably be ( im starting to wonder if I underplayed it) is driving me crazy.

Im very concerned, it all feels a bit surreal to be honest. Its amazing how this has reared its head out of the blue and so severely.

Its D day tomorrow/ If I get no joy Im going to fling myself on the floor of A&E and let t hem deal with me.

Will keep you updated

 

[Joandublin]

Hi Nicky

Im so sorry you are suffering so much and I hope you are successful in getting that appointment today. Whether you get the appointment or end up in A & E, please dont downplay things. You have got to get across to them how distressing and painful this is for you and that you simply cannot function properly because of it.

Is there someone that can go along with you? No matter how strong and independent a person we are, sometimes having someone along with us, that can act as an advocate if necessary, is exactly whats needed. It can all get too much for one person to cope with sometimes :hugbetter:

Best of luck today Nicky and let us know how you are
Joan:rose:

 

[Clare.T]

Good Luck with getting the appointment.
Yes you will need a referral to go privately, I am pretty sure. I would be thinking of trying St John's Institute of Dermatology which is linked with St Thomas. GreenHaggis has seen a dermatologist at St Thomas thro her lupus doctor who has affiliations there. That's why I suggested using the St Tom's connection you already have, and because they suggested the Mepacrine.
Last I knew St John's dermies see people privately.
I think it is definitely urgent that you be seen asap as this must be badly affecting your wellbeing even if not a medical emergency. See the local dermy privately first if you can still get in today or this week anyway. Obviously getting up to London will take more organising if you need to do it

http://www.kcl.ac.uk/depsta/medicine/dermatology/index.html

I'll be looking out for your news.
Hugs
Clare

 

[nicky00]

Ok ..Things are beginning to look upwards

My GP today said she would phone and speak to the Dermatologist directly and push for me to be seen urgently within the next couple of days.

Whatever the answer would be : she promised to let me know by today.

This time she took a good look all over my body, espically down each side of my hips and groin and inside my mouth. My feet and hands are just so ugly and now extremely sensitive and painfully sore.

I learnt today that a referal to St Thomas would not be a problem under the new patient care system. She has backed me to transfer to St Thomas although she did say that with some specialist hospitals its a pain to go up for something minor like say an inhaler because you are under 'their care'.

Anyway I digress....

6.20pm I get a call from my GP to tell me that the only Dermatologist working that day was not available to talk to but she is going to call again first thing tomorrow and make sure I get an answer.

She then having told me that she had consulted her Dermatology reference book and looked at some pictures to compare with mine and she thinks I have Lichen Planus .

The other bit of advice is to immediately stop taking Mepacrine .

What I found interesting today is that I did mention this Mepacrine worry I have and a possible link reaction to my rash and nothing was said, nor was anything mentioned in prior appointments when I bought this up.

This scenario left me out on a limb with a feeling that they should know best but why isnt any medical professional referencing my rash to the meds.

Can I be the only one in the village?. Or the county of Sussex?

The only logic I can apply is that lupus awareness is growing but many GP's do not know enough yet.
...

At least now I feel Im just starting to get somewhere.
Once I see a Dermatologist and have a definate answer, then I can go forward.

My gut instinct was Lichen Planus ( pronounced Licken) .

I just dont know how \im going to fare without the Mepacrine

End of long Ramble..

I really want to thank you all for your support and replies everyone. It makes a difference.

Joan ..Your right...I saw the need to have some support with the appointment and it was only the rush of getting one that prevented me from having someone with me.

Claire, Im going to have to seriously think about referring up to St T's to get the best care in the future. It is times like this I feel/felt most vunerable and lost. and yes a bit scared.

Nicky

 

[Clare.T]

Some progress at long last. I thought you had stopped the Mepacrine already ! I don't know what she means by needing to refer to a specialist hospital for "an inhaler". We are still under our GP's care for the usual things. St Tom's is for the lupus side and you might not see them from one year's end until the next.

However since you have no faith in your local rheumy it might be best. The ideal is to have a specialist nearby for any emergencies and quite a few people have such an arrangement and just go annually to St Tom's I hope you get to see somebody in the next two days.
It is shocking that she only now realises the extent of the problem - how did that happen.

Hugs and good luck
Clare

 

[nicky00]

Quick update

My doctor has been phoning Dermies which seem to all be thin on the ground in the NHS.
Last Friday I asked to be referred to a private hospital. The appointment came through today Tuesday for ,next Tuesday.

Meanwhile my doctor phoned me on Monday very late afternoon to tell me that finally she managed to get hold of a third grade Dermie who is going to arrange an appointment for me this week but it cant be with her and has to be with a consultant.

This is just so long winded, Where have all the Dermies gone ( private??).

It will be a week tomorrow since I have stoped the Mepacrine and my nights of sleep are slightly better but the rash is still raging and driving me barking mad.
Mostly the mornings, evenings are worst.

My mouth is not better apart from the ulcer which has cleared. Rest is sore and bruised.

What has a girl got to do!

My decision based on the appalling wait for treatment has been to settle to be referred to St Thomas as my main Rhumatology care.
Not sure yet where that leaves me with my local as a back up.

Im sure if this had happened under their care I would be seen and dealt with and have been given better advice re dosage and use of Mepacrine.
Its all in one place their.

Unfortunately everything local is still coming out of the dark ages...

I came so close to feeling I was loosing ground and it was getting me down to the point of noticing signs of depression.., slim but there none the less.

So Im waiting for that call

 

[nicky00]

finally

Have been to the hospital today to see the Dermatologist who was great..


Im going to post a copy of something I wrote about the appointment to a friend ( far to lazy ,itchy,and tired to type it all out again here)

Anyone who can give me any advice on taking Prednisolone.....etc the I would be grateful. Am on 45mg to be tapered down slowly.

No suprises about the diagnosis. You dont have to say too much when you have a rash all over, inside and out. The doctor and nurse were just so nice.

here is the info as an update..



Diagnosed lichen planus due to Mepacrine drug reaction.
Put me on steroid tablets (Prednisolone) for a couple of months.

Given me some Elocon cream to be put on my hands and feet at night and to cover them with cling film!...have bought some plastic gloves instead.

Given me some mouth solution for painful mouth and ulcers.
(Was missed off prescription but the pharmacist gave me a rinse which is hopefully what he intended called Difflam.)

Will be given a skin biopsy , appointment by post. Should have had a biopsy to help diagnose my lupus anyway he said.
Biopsy. is regardless of knowing what it is.

Should come through in a week although the nurse thought it would be in January.

Doc gave me an examination ' bra and pants style'. He also had a look in my private bits ' bra only style'.

The nurse looked on at my skin with a sorry expression and asked me which bit was worse.

Was asked a couple of times if I had it on my face, which I dont....(yet).
This may be because my skin is full of lupus bumps and lumps.

Took down my whole lupus history and asked how I came to be diagnosed.

Thought that being on Mepacrine was important re the lupus but suggested that the symptoms I have with lichen planus probably were more symptomatic at this time. I agreed.

Wanted me to not be without the help of Mepacrine but let me make my own decision about stopping.
Both agreed that I will continue stopping and try reintroducing later once skin better.

He thinks its mmost likely if I do start again that the chance is I will ge this back.

Told me that the steroids will not only help the lichen planus but will also help my lupus as well.

Im just so relieved to have a good doctor that does his job well..

 

[Mary Ann 47]

Nicky,
I am so happy you have a good doctor that you are pleased with. Hopefully, your road to recovery will be a short one. You are in my thoughts and prayers.
Mary Ann

 

[lazylegs]

Hi Nicky,

I am glad your appointment went well. Good luck with the Prednisone, hopefully it gives you some needed relief. The news about the biopsy is wonderful. Let us know the results when you get them.

Take care,
Lazylegs