Does Anyone else also have Lupus Panniculitis?

[teecayc]

I've asked this before but there's a lot more people in the group now, maybe able to answer..

[NeeNaw]

yes I was diagnosed with this too .... it is more prevalent if I am given an intra muscular injection as over time, the underneath tissue separates and after a while the site of the injection looks like I have been shot with a bullet.

[teecayc in reply to NeeNaw]

Can I ask what medication you are currently taking and if it's working? And do you get fevers when it flares up? I've never talked to anyone else with it. I'm not suffering with it at the moment but dread the time when I do again, if I do.

[NeeNaw]

I am currently waiting on funding for treatment which is not recognised lupus treatment, this being the case because I have not responded to any of the other treatments. I am also steroid resistant so the only thing that I am currently on for maintenance is plaquenil only. Whilst waiting for a response about the funding I have been taken off all other medication. Touch wood I am fine at the moment (well as fine as any lupus patient can be) but I do suffer from fevers which I put down more so to the lupus itself. Very little is know about lupus panniculitis and I have to keep a letter from my consultant to inform anyone treating me that where possible any injections are to be given IV rather than IM. I remember telling an on call doctor that he could not give me an IM injection due to the lupus panniculitis to which he retorted .... Never heard of it!!! I find it amazing how we are all diagnosed with lupus and how differently we can all suffer from various inherent conditions.

[teecayc in reply to NeeNaw]

Wow, I hope it all goes well for you then. My consultant also mentioned a treatment that is not recognised for lupus but luckily, since my mycophenolate got increased to 3g daily, I haven't had a flare. That's the max dosage for my body weight though, so as always it's a waiting game. Another consultant also mentioned rutixumab.

Yes the doctor's don't know a lot! It was a long time til I was diagnosed with the Panniculitis, they had no idea what the symptoms were all about.

[teecayc]

Very unfortunate about the IM injections aswell, I wouldn't think of them reacting like that.

[NeeNaw]

I've been on the mycophenalate, cyclosphosphimide, methotrexate, immunoglobulin and I was the first person to be put on rituximab for lupus in Northern Ireland ..... I've had most of these in tablet form, injections, and iv

[adg1977]

Hi there, new to the site. I have lupus, pinniculitus, scleroderma, Raynard's and also have epilepsy from aged 8 years and suffer from depression to.

I started being ill 2 years after my twins were birth 2001 symptoms started in 2003/4.

I was diagnosed with scleroderma in 2006 ,since then I have also been diagnosed with the above .

My illnesses have been active from the beginning, I've been on all the usual nasty' s too many to remember and they haven't made any difference,

I im at the moment on clofazamine 100mgs, hydroxychlaraquine 200 mgs, prednisalone 30mgs, synalar and protopic creams and tegratol retard carbamazapine 1200 mgs (for epilepsy)

I am assuming that I have what you are calling lupus pinniculitus, please correct me if I am wrong.

Only found your thread from looking in DLA as I have just been turned down today on all elements. I am feeling very sad ,angry , upset and quite depressed that this is the case, as it has taken me all these years to accept I need to apply,

it feels like I am giving into my illness, silly I know.

I have been getting incapacity benefit (stamp only because I was to in for work the 3 previous years to my claim so not enough stamp paid over this period)

I am now on ESA as my partner had a brain tumor removed last year and is still not back at work. this is my medical history and details of where I am at right now.

I have a wonderful consultant at the L.G.I. (Mark Goodfield) who has been treating me since 2006.

Just wanted to say hi and answer you threat as pinniculitus patients are few and far between.

Hope to get some response, best wishes to you all, Amy x.

[teecayc in reply to adg1977]

Hi Amy,

Yes very few and far between. It seems you've really had to go through it aswell!

Are you sure you can't appeal against the decision for the DLA? I've heard people get denied but keep trying and get results.

I'm also on ESA, had a lot of trouble trying to claim and all the bits inbetween, with them also deciding a few times that I wasn't ill. Will be going for another medical next week so we'll see what they say after that!

Do you also get fevers with you're Panniculitis? And do you go through stages of it? Like I said, I haven't talked to anyone else with it apart from now so I'm interested in how other people suffer with it.

I myself go through stages of being ok.. But then having a flare and being very ill, bed bound for at least a few weeks up to months, being sick in the 1st week or so and with continuous fevers throughout.. And of course the very painful swellings. I really don't know what I'd do if I was living by myself. Also suffer with shooting pains, usually in my feet, hands and head and i get excruciating cramps. I'm not sure if this is from the SLE.

At the moment though, this is in fact the longest time I've been without a fever flare (beating the 15 week mark this Monday gone) so at least something's going right.

Thank you for posting x

[adg1977 in reply to teecayc]

Hi teecayc,

well now I'm crying, may sound silly but I was so happy you replyed, so far like you, I have not found anyone to talk to with pinniculitus and other diseases the same as mine, you can really feel alone.

It is very good news about you beating your 15 wk mark, I really hope this keeps going for you.

I was signed of work by ATOS and was due another medical in 2015, that was before we had to claim the ESA, now I have to start all over again and be assessed again, which doesn't seem fair to me as I am being transferd from IB and my health is actually worse than it was back then but that is how the system works (a system a really don't understand)

I won't get into that because I would go on as at the moment it is consuming all my energy fighting to get anywhere with them.

In breif tghough I applied for ESA 24th June, back dated to 24th March it has only just started to be paid now after an appeal (6 page letter later)

Now fighting to get my partners extra money (top up) from the stated 92 day of his claim which they have to pay, they're trying to pay this from 2nd November not 23rd June (92 days) the old date they were saying we claimed on, even though the appeal said they had to back date all ESA payments owned to 24th March, it is upsetting and disappointing that genuine people have to go through this (sorry stressed out)

What I am coming to is GOOD LUCK next week with the medical.

My illness has constantly been progressing and forming, nothing has worked, we have been at the suck it and see stage for a few years now.

Constant fatigue, muscle and joint pain, skin soreness and the feeling like its tearing, constant burning and inflammation and it feeling like I have holes in my bones and there is a gale force wind blowing through them, amoung other things.

Recently started with swollen eyes into my cheeks and dryness peeling skin thats after the weeping tissue it then scabs and comes away it burnes all the time and can last 2 wks and starts all over again.

I had a wierd skin rash this in the summer all over my chest arms and neck.

I saw my consultant a week n half ago, he seemed quite concerned about its progression since my last visit and thought it was very active but to me it is always like this.

I definatly think mine is linked to child birth as it has become worse again with in a year of having my son (second pregnancy) he's now 19 mths.

My two aunties on my dads side also have related diseases to ours, one has Raynaurds and the other has something very similar.

My dad is part Portuages and African and I think it must come from that side of the family.

I do get very hot, don't know if it would be classed as a fever, feels like it to me as I am usually very cold, I do wake up wet through (yuk)

I have muscle and tissue wastage on my hip, shoulders, arms and face this is now very dark in colour, I am very consious about this, people use to look at me and then my hubby as though he was beating me, now I have been told it is more like I've been in an accident of some sort or old scaring from dog bites.

Yes I know what you mean ending up in bed that does happens, longest time has been 5-7 days, it can be from something as simple as going to the local shops, I live in Filey and its only 2 miles across the shops about 500mts away from my house.

I can be not to bad one minute and then beaten the next in alot of pain. I can't get my head around it

I am constantly ill with colds,coughs, chest infections etc, my immune system has sucked since this all started.

I get pains in my hands, wrists, ankles but I don't know from which illness, also have joint problems in my right eldow with alot of pain and my hips and shoulders my neck gets pain too.

Are your excruciating cramps from a drug your on as I had these in my legs on some meds or a sympton from illness.

To be truthful with you, I am totally confused which problem is from what?????

Your listed as being near Barton my hubby has a brother in Worlaby so I know the area well plus we looked at houses in Barrow and Goxhill before I got ill, my brother in law move there about 5yrs ago now, they seem to like it.

Which specialist do you have?

Best wishes and keep well, Amy x.

[teecayc in reply to adg1977]

Thank you, so do I!

Sorry you seem to be being messed around aswell. I don't understand the system either.I missed out on 6months of benefit because was wrongly informed. In the end took to writing every phone call and bit of information down because just kept going round in circles. I agree, I don't know how anybody can fraud the system.. and then there's genuinely ill people who can't get a scrap of help.

Thank you for the good luck

Yes fatigue is definately the main thing that I suffer now. Most of my days are bed days if I'm not at work. I only swell up and get sore during a flare. Still suffer a few pains though, been getting tendonitis on and off for a few weeks now.

Is it just parts of you that swell or is it an all over thing?

i get mass swellings.. say my thighs, face, calfs.. it seems to do one or two parts of my body at a time, each flare up (looks pretty unreal really, two or three times the size they should be) and also the smaller lumps that become very sore. You say yours weep.. mine just tend to go flaky and really dry but then sometimes scar.

It must be hard sometimes if you've got your children to look after aswell!

i get very conscious aswell I also have lipodystrophy so after the swellings have subsided, where they were, (mass and small ones) I'm left with no fat as cells are killed off, leaving me disfigured I find this really hard to deal with sometimes.

It's funny how you say you're family have related diseases. My mum is Coeliac and one of my sisters has MS so definately think auto-immune hereditory. My mum also has slight Raynauds. I used to get it quite bad but think it's got a little better. I've had it 11 years so before all this started.

And yep, very low immune system too due to the meds.

I don't think the cramps are med related as I hardly get them when not having a flare.. and then boom! I did used to think I was allergic to everything though as had so many different side effects before being diagnosed, thought eveything was disagreeing with me! Yes it's hard to know what's what isn't it. I still don't know if the fevers are the SLE.. or from the Panniculitis as i only seem to get them when that flares up.

It's a small world isn't it

I go and see the local rheumy group quite regularly but under Dr. Cruz and dermatologists at St. Thomas' aswell. My 2nd appointment is this Thursday so going to be a busy week! x

[Lenevan]

Hi everyone,

I am an American but I don't think anyone will mind if I post here? I am interested in what everyone has had to say because I believe I also have SLE with panniculitis, causing lipo atrophy. I am in the process of working with a rheumatologist to get a diagnosis, and he needs me to go to a dermatologist to get my rashes biopsied. I went to one, and the man said "those indents must have always been there; you just never noticed them before." Noone seems to recognize what is happening to my skin, and every day it seems I have a new indentation in my face that appears permanent. So, the rheumatologist told me to go to a different dermatologist to get the biopsies done that he needs. My disease only started about 2 1/2 months ago, with a sudden extreme swelling especially in my feet, and rashes developed at the same time. Since then, and I believe a few months beforehand, I have had a huge number of random unrelated symptoms-eyes cross, chest pains, mouth sores, memory problems, psychotic symptoms, body aches, low grade fevers, loose joints, weak muscles, acid reflux, tinnitus in one ear,mouth sores, my period suddenly stopped-the symptoms go on and on. So, I am quite sure that I will be diagnosed with SLE with panniculitis causing lipoatrophy. I search and search the internet and nothing else seems to fit.Right now my symptoms are not bad-the worst part is the inflammation and the holes developing in my face. I am afraid noone will diagnose and treat me before my face is completely scarred. It is sure true that very few people seem to know about lupus panniculitis (or lupus profundus). My ANA test was negative when they took it in November which made the rheumatologist unwilling to diagnose me with lupus, so I really hope that the skin biopsy will verify that I have it so that I can finally explain to my friends, family and disability organizations what is causing my illness, and that it is not in my imagination. Nice to read everyones posts! Any advice about what medications I will need to stop the spread of these indented scars or ideas on how to get my diagnosis faster, please feel free to post back.

[Angel1996]

My 17yr old daughter was just diagnosed 4/17/2014 with LP and right now she has been tested negative for SLE. She is currently on Dapsone for the last 5 days. They had to take her off of plaquenil because she was having vision changes. And they do not want to give her steroids because of concern for infection and her puncture biopsy site on her thigh is no healed yet. But when reading some info online it does not seem as it would be a bad idea for her to get some steroids. She has been having fevers on and off and the highest was Saturday 103.9 F. Since the doctors really don't know much about the disease and management of it, I was just wondering if they have noticed that when the LP is active and the lesions/bumps become harder if that is when the fever stays and is high?

[Angel1996]

For anyone who has SLE, I came across Merry Li Clinic based in California and she has some herbal medications that have help SLE patients. merryclinic.com/

[emjay87]

hello my partner has lupus profundus and no medication is working she lost her entire left butt check amd to be honest im scared because i dont know whats going to happen

[sadie8757]

I am American and was diagnosed with lupus profundus by biopsy 4 years ago. I had symptoms of lupus for 20 years, however, then and now, I've always tested negative on my blood tests for lupus so until the biopsy, doctors did not believe I had lupus. I come from 4 generations of every kind of lupus, totalling 11 people. My brother also has MS and I have Raynauds. My lupus causes joint pain, painful nodules, small and large, fatigue, insomnia. I also have severe reflux, slow gut where my food doesn't digest or move through my body, causing vomitng, memory issues, brain fog. I am currently on prednisone 10 mg and Plaquenil. This is such a horrible disease, mainly because if you don't test blood positive, noone believes you have systemic symptoms related to lupus. It's also very hard to treat. Being an RN, I try to look at the disease systematically and impartially but it's so hard as it effects me everyday. AS many here say, one minute you're ok, the next you can barely move due to pain and fatigue.