[Maria Thompson]

Hi there,

I wanted to ask some advice as am feeling really low and fed up. I saw my dermatologist yesterday (I was diagnoised with lupus discoid in Aug 07). I have been taking 10mg of predisolone and 50mg of imuran since Christmas and they are not working. I am having constant flare ups particularly when I have my period. This month was really bad it looked as if my skin on my scalp/face and chest had been badly burnt. My dermy is unable to up the dose of the imuran as my TPMT level is low and has also said I have been on steroids too long as am getting alot of side effects.

The next step he has suggested is to go and see an endocrinologist as the lupus seems to be so hormonal. I have had blood tests done and my hormone levels have come back OK. I am currently reducing the predisolone as he wants me to come off them before I go and see the endocrinologist. I was just wondering if anyone has been referred to an endocrinologist and what was the outcome. I am not on the pill as my mum and sister both died from breast cancer and I have to have regular mammograms.

Help!

Many thanks, love Maria :sad:

 

[cath]

Hi Maria,

I'm sorry you are feeling rough. When you say you are having flare ups, what symptoms are you having? Do you only have discoid lesions, or other symptoms too?

Premenstrual exacerbations are pretty standard for lupus. I'm not so sure for discoid, but for systemic symtoms it is a classic hallmark of the disease that they get worse just beore a period.

I wonder if your dermatologist knows this? Do you see a rheumatologist as well? If you are having lots of problems, particuarly synptoms other than the discoid lesions, a rheumatologist may be the best one to take stock of where you are at and modify treatment.

Personally I've never seen an endocrinologist, but that says nothing...I've never been to Timbuktoo either:hehe:

Do you have to pay for your appointments and is it difficult to get specialist referals? You could always go and see if the endocrinologist can offer you anything. On the other hand, if you need to choose between a rheumy and an endo, I'd pick a rheumy if the problem is active lupus and you know the hormones are OK.

X C X

 

[Maria Thompson]

Hi Cath,

Many thanks for your reply. Fortnately I only have one lesion on my finger which is increases in size and then goes down again. My main sysmptoms are burning skin, particularly my scalp, loads of hair loss and generally itchy skin all over.

I have to pay for my healthcare if I want to go private. I did pay for it for a while but the bill was massive in the end and I asked to be referred to the NHS.

I have to wait 6 weeks before I go back to the hospital so will keep you posted what is said then.

Take care, love Maria x

 

[LBH]

Hi Maria

Well this is a first! I have never met anybody else with lupus that had problems like me until today. When I got sick with lupus, I kept telling my doctors that everytime I would have a period, I would go into a flare. Really weird for 1 week out of the month I will feel half way normal and then start flaring with lupus again. I got so fed up because nothing seemed to be helping me out at all.
Then it got to the point where it was me dealing with lupus and my cycle at the same time and one had to go! I couldn't take it anymore. I finally on my own went to see a Gyn doctor and told her I wanted a hysterectomy and wanted it all removed. Everything! All of it, just get rid of those female organs. :lol:
Not going to give you medical advice here but I choose upon myself a hysterectomy. The doctor after I told her how miserable I was and I had enoug children and did not want anymore. She did the surgery. It was no fun picnic at first and I had a time healing. Slow healing too. Went through a fast menopause also because I refused hormones. But took Evista a non hormone type of pill to keep me from getting osteosporsis. I have that and had it before the hysterectomy and never knew it.
3 months after that hysterectomy I went into remission and stayed in remission for a few years. Was actually doing great. Lupus disappeared for quite some time. I felt normal again.
Let's just say everything got mild. The only thing I have problems with lupus now is caused by stress and illness. If I have surgery the lupus attacks me big time. If I get stessed and worried the lupus comes back and if I get sick the lupus comes back. That is one reason I am flaring so bad now. Me having surgery a few weeks back caused a flare.
Me having that hysterectomy did slow my lupus down for me. But it might not for you. But at the time I had gotten desperate and didn't care and wanted those organs gone. It helped me and I really think it saved my life and gave me a few mores years than I don't think I would have had otherwise. How strange you mentioned this. That is so weird that we both have shared this experience. I swore up and down to my doctors that my hormones were going to kill me. They would not listen so I took it upon myself and had a doctor, begged the doctor to remove them. She did and I don't regret it one bit:hehe:

 

[Katharine]

Hi there,

As Cath said, it is very common for lupus patients to experience worse symptoms during their period.

I know very little about discoid lupus but just wanted to say that I do see an endocrinologist as I have Hashimotos hypothyroid too but he was the doctor that told me to go and see a rheumatologist as he said there was obviously more going on than he could treat.

sorry, not much help on this one,
Katharine

 

[Raglet]

ditto premenstrual flares are common, so I very much doubt that the endocrinologist can do anything for you as it is unlikely that you have anything going on hormonally, besides the normal fluctuations in hormones during your monthly cycle.

Premenstural flares are a pain, but pretty normal with lupus - maybe your dermy doesn't realise this ?

hope you feel better soon, it does sound like you need to increase your imuran to get things under control, either that or swap on to another drug (cellcept etc).

feel better soon

raglet

 

[Lily]

Hi Maria,

I second the idea of going to see a Rheumatologist. It seems your Dermy is all out of solutions for you right now and it would be beneficial to have fresh eyes on this and also get a whole new full panel of tests done.......... thorough investigation.

I would normally mention increasing the Imuran but seeing as you can't having of that TPMT level then it might be time to go back to basics and really look seriously at just whether the Plaquenil was causing you problems or whether it was more signs of increasing Lupus activity. Adding Plaq again may be just the shot you need, along with staying on your current dose of Imuran. Failing that, then the Mepacrine that Clare has mentioned in the past is something they really need to look into thoroughly.

I doubt that an Endocrinologist is going to be much help at all. I saw a Reproductive Endo prior to diagnosis because things were so much worse around my cycle. He saw me twice and then realised he could do nothing to help. It was obvious I had Lupus or something like it and that was the problem, nothing to do with my hormones directly. Just Lupus not liking hormone changes. Something he acknowledged as being very very common and getting the Lupus under control would be the way to treat it.

There are so many threads here on Lupus and exacerbations around period time, it seems to be the norm rather than the exception

love
Lily