TheLupusSite.com banner

1 - 17 of 17 Posts

·
Registered
Joined
·
198 Posts
Discussion Starter #1
Really at the end of my tether with this, so just need to have another rant. Another period, so 10 days of heavy bleeding plus a flare up of my skin (psoriasis, lupus, whatever it is). This month it's really bad. I have weeping sores and the red 'disc' lesions have spread to my neck and chest. Others on my face have got bigger too. The 'ringworm' like rash down below is beyond a joke. I'm so glad that I have an appointment with Dr D'Cruz soon otherwise I just don't know what I would do. In the meantime, is there anything I can do to help myself?, eg. diet, natural supplements etc. Additionally, is there any cream I can use to stop the 'crud' forming over the rash as nothing I use seems to work?
 

·
Registered
Joined
·
432 Posts
hello Aggie, I cant answer any of your questions but i just want to reassure you, you are not weird for your lupus flaring up around your period..mine gets ridiculous just before my period too. its sucks!! i wonder if going on some kind of contraception would help like the progesterone only pill or something? wonder if anyone has any advice on that too? thinking of you xxx
 

·
Registered
Joined
·
4,968 Posts
I have no good advice to offer to you but this sure sounds frustrating.

I do not have to deal with this because I had a hysterectomy 6 years ago.

My heart goes out to you. Bad enough we deal with the monthly but to put this on top of it all is just to much.

Hope you get some answers and feel better soon.:wink2:
 

·
Registered
Joined
·
198 Posts
Discussion Starter #4
Hi.

Thanks both for your responses and for 'listening'. I'm just glad that I have this place to rant as I am so frustrated at the moment. I feel like I am falling apart and look like a monster to boot.

I'm not sure what I have. For the past three years I have been told either psoriasis or possibly cutaneous lupus, however, I have had two skin biopsies come back inconclusive and have been brushed under the carpet by my derm.

All I know is that everything goes haywire just before/during my period and I have been mentioning this to specialists for years but they just look at me like I'm mad! My gynea is at a loss with what to do as my hormones seem OK. I've tried progesterone before, however, it made my migraines worse so that is a no go area.

Anyway, fingers crossed Dr D'Cruz will be able to help one way or another.....only another month to wait!
 

·
Registered
Joined
·
28 Posts
Hi there,

I had to reply to you as you sound really similar to what I have been going through. I too suffer really bad mid cycle and during my period with my skin. I also had a skin biopsy done and it also came back inconclusive, but my dermy thought it was lupus discoid and tried various medications. I also had my hormones levels checked and they were normal. I also went to see an endrinologist who put me on danazol to stop my periods but it made my skin so much worse and I stopped taking them after 12 days. However, I have started mepacrine about 3 weeks ago and I can say it is working wonders for my skin. It hasn't cleared it up totally but it is so much better. The usual anti malarial to try is plaquenil but I was allergic to that.

I really hope that st Thomas sort you out soon. I know that St Thomas prescribe mepacrine so I would definitely ask about it when you go.

Take care, love Maria x
 

·
Registered
Joined
·
14,661 Posts
Hello Aggie
I'm writing mainly to sympathise because I had the same pre menstrual worsening of my subacute cutaneous but without the down below problems It must be just awful for you. You won't get brushed off at St Thomas' in this regard because it is one of the Alternative Criteria. I'm not sure quite what they can do about it. Dr Hughes said somewhere that he increases meds but I'm not sure what meds he meant - possibly Prednisone and maybe he wasn't talking about the skin in particular.
I found topical tea tree oil very soothing and quick healing on open sores.
I am mad that your dermy has just left you to suffer this way. I expect that if you had a blushing problem they'd be all over you with treatment options.
:mad:

Maybe Dr D Cruz will get a dermy opinion for you. That's something to ask about, if need be.

Strengthening hugs
Clare
 

·
Registered
Joined
·
198 Posts
Discussion Starter #7
Maria Thompson;525600 said:
Hi there,

I had to reply to you as you sound really similar to what I have been going through. I too suffer really bad mid cycle and during my period with my skin. I also had a skin biopsy done and it also came back inconclusive, but my dermy thought it was lupus discoid and tried various medications. I also had my hormones levels checked and they were normal. I also went to see an endrinologist who put me on danazol to stop my periods but it made my skin so much worse and I stopped taking them after 12 days. However, I have started mepacrine about 3 weeks ago and I can say it is working wonders for my skin. It hasn't cleared it up totally but it is so much better. The usual anti malarial to try is plaquenil but I was allergic to that.

I really hope that st Thomas sort you out soon. I know that St Thomas prescribe mepacrine so I would definitely ask about it when you go.

Take care, love Maria x
Hi Maria,

Thanks, it really helps to be able to chat to others who know how I am feeling. My hubby is very good but sometimes can't understand why I get so upset about things, especially the way I look at the moment (shallow I know). Yesterday my face was so bad it took ages to cover it with make up and then it wasn't perfect. I just want this all to end and to go back looking normal. I'm just tired of it all. I'm really looking forward to going to see Dr D'Cruz with the aim of getting this sorted once and for all but am worried about the side effects of any medication if it is lupus. I can't face losing any more hair or putting on any more weight. I eat very small amounts now but can't seem to lose the flab around my middle. I also have fusing of bones in my lower back/hip which fares better the less weight I carry and I can't tolerate any strong medication to control the pain, so it's another thing I have to cope with on a daily basis along with my FM. If it's not one worry, it's something else! Anyway, I'm so glad that you have found something that is working for you. Hope you continue to improve. x
 

·
Registered
Joined
·
198 Posts
Discussion Starter #8
Clare.T;525601 said:
Hello Aggie
I'm writing mainly to sympathise because I had the same pre menstrual worsening of my subacute cutaneous but without the down below problems It must be just awful for you. You won't get brushed off at St Thomas' in this regard because it is one of the Alternative Criteria. I'm not sure quite what they can do about it. Dr Hughes said somewhere that he increases meds but I'm not sure what meds he meant - possibly Prednisone and maybe he wasn't talking about the skin in particular.
I found topical tea tree oil very soothing and quick healing on open sores.
I am mad that your dermy has just left you to suffer this way. I expect that if you had a blushing problem they'd be all over you with treatment options.
:mad:

Maybe Dr D Cruz will get a dermy opinion for you. That's something to ask about, if need be.

Strengthening hugs
Clare
Thanks for the hugs Clare. All I know is that if it is lupus I shall be venting my anger at all the numptie consultants I have seen over the last three years.

As you said, regardless of what I have it is absolutely criminal that two derms have simply sent me away with a tube of cream rather than undertake further investigations. In my mind, even with psoriasis you can't keep slathering on the steroids indefinitely. My 'flare up' was so bad period before this one that I was at my wits end so went to the local GUM clinic. As a result I have been booked into a specialist vulva (keep wanting to say volvo!) clinic in a few weeks time so I will have to see what they think. I hope Dr D'Cruz will be able to help, however, if not, my GP said she will refer me to St John's.

Thanks for the tip regarding the tea tree oil....will try that. With regard to lupus medication I am so worried about putting on more weight if I do need to take it. Any advice regarding this? x
 

·
Registered
Joined
·
4,444 Posts
Plaquenil or mepacrine do not have weight gain as a side effect, more commonly people will lose weight on them actually. So you should be OK in that regard if it does turn out to be lupus and you are able to start one or both of those medications to treat it.

I am very hopeful for you that you will finally get the help you deserve at your upcoming appointments! Good luck!
 

·
Registered
Joined
·
198 Posts
Discussion Starter #10
Maia;525612 said:
Plaquenil or mepacrine do not have weight gain as a side effect, more commonly people will lose weight on them actually. So you should be OK in that regard if it does turn out to be lupus and you are able to start one or both of those medications to treat it.

I am very hopeful for you that you will finally get the help you deserve at your upcoming appointments! Good luck!
Well that makes me feel a bit better as I can't face putting any more on! I actually thought that people with lupus lost weight rather than gain though....or am I wrong to think this??

I pray I get sorted soon too. Thanks for the 'good luck' and keep everything crossed for me! x
 

·
Registered
Joined
·
360 Posts
I just wanted to add my reassurance that you're not mad. It's extremely common for us to have worsening of our symptoms before and/or during our periods. That's why doctors are convinced there's some kind of hormonal link to these AI diseases and why women get them so much more than men.

I didn't know lupus makes you lose weight. I'd like to hear more about that too, if it's true, or not. I know the meds we take can affect our weight one way or the other (prednisone anyone?). Plaquenil didn't affect my weight one way or the other, but since I've been on Imuran, my appetite has decreased and I've lost four pounds (yay!!!) Finally, something positive coming out of all this. Or is it the lupus doing it?
 

·
Registered
Joined
·
15,684 Posts
Hi there,

I surely hope you get some answers and treatment soon, I just wanted to wish you good luck for when you see Dr. DeCruz.

Many people with unmedicated Lupus lose weight quickly because of the disease process. However if mobility and joints are a real problem then an increase in weight is not uncommon due to lack of exercise. Prednisone is the drug which will stack the pounds on for many people, but as Maia mentioned it's not a drug that is a first choice for Lupus treatment these days, so no need to worry about that. It is used in short courses sometimes though until the other drugs take effect.

love
Lily
 

·
Registered
Joined
·
198 Posts
Discussion Starter #13
Once again, thanks all for your much valued advice, reassurance and good luck. I hope you realise how much the support and understanding is appreciated.
 

·
Registered
Joined
·
40 Posts
Hello, i have lupus and i have put on more weight but iv realised that its not due to plaquenil which is what im on, its more to do with being less active. i do understand how u feel about weight gain as im exactly the same, but dont worry as its not the meds!

love rachna
 

·
Registered
Joined
·
1,110 Posts
Hi Aggie

Just wanted to reassure you. I have SLE with only very minor skin problems. The first line drugs (Plaquenil, Aspirin, etc.) have had very little impact on me in terms of side-effects. I have not gained weight, though I do struggle to keep it where it is because i like to eat all the pies.

Plaquenil can give side-effects IN THE BEGINNING, but they usually wear off. It took me about 1 month for things to settle down properly, but i did start straight away on 400mg and took the dose in one go instead of 200mg am and 200mg pm ... did not read the instructions properly! It seems many start on 200mg.

Whilst the skin on my face was merely lumpy / pink it is now as smoothe as a babies bum. If i did not smoke and did not have lines I'd be looking good! It has taken more than a year for this effect, but it does not regress. Or has not so far. It can only be plaquenil since my other meds have no skin effects and it was like this for a long time prior to medication. I have not had a nose ulcer in over 18 months.

I do have problems with pain relief from time to time since non steroidal anti-inflammatories cause me worse side-effects than the pain and do not seem to work for me anyway. So I just ache all the time.

However, when my back hurts at the same time as other aches and pains (scoliosis / arthritis thoracic spine) i find it tough going. I wanted to let you know, even though i do realise it is not practical for everybody, gentle exercise has helped both my back pain and other general aches and pains.

For me gentle exercise is a gentle swim for 30 mins (stop as often as i like) at the local swimming pool. It's cold, and the last thing you feel like climbing into when you are in pain, but you get used to it. The other thing is properly instructed yoga for people with health issues. Not yoga held by a person who has read a few books and happens to work at the local sports centre. If you find somebody who deals specifically with health issues yoga can be used very effectively.

Alas I cannot afford to see the yoga teacher I saw, but it would be my first choice when in pain if I could afford. Even so, I still use some of the positions I was 'helped into' when I was able to afford, and I do get some pain relief, and feel a lot more in control. I think the strength and flexibility gained by this type of gentle exercise is really useful in long term pin control becasue it stops you tightening up and creating other aches and ains of a muscular nature so avoiding poor posture, which has the knock-on effect of more pain.

Wishing you well.

PS I turn into an achy slug premenstrually and for the first 3 days. I find eating cereal like porridge, reducing tea and coffee, and not giving into the chocolate munchies during this period prevents me from feeling even worse. There are yoga positions you can use during your period that really help reduce pain and feel more enrgised.

amazing but true ... it's just finding the right instructor that's the beggar!

Take care.
:love:
 

·
Registered
Joined
·
198 Posts
Discussion Starter #16
rachna;525725 said:
Hello, i have lupus and i have put on more weight but iv realised that its not due to plaquenil which is what im on, its more to do with being less active. i do understand how u feel about weight gain as im exactly the same, but dont worry as its not the meds!

love rachna
Thanks Rachna. That does make sense, however, it's so frustrating as I still seem to eat very little compared to others. I can starve myself with the aim of losing a few pounds and nothing seems to shift, whereas others will just cut out a bar of choccie a day and drop the weight really easily. I'm not hugely overweight but the extra that I do put on really shows as I am such a short arse! Was just worried that if I am diagnosed with lupus I could be piling on even more due to the medication.
 

·
Registered
Joined
·
198 Posts
Discussion Starter #17
ALWIN;525755 said:
Hi Aggie

Just wanted to reassure you. I have SLE with only very minor skin problems. The first line drugs (Plaquenil, Aspirin, etc.) have had very little impact on me in terms of side-effects. I have not gained weight, though I do struggle to keep it where it is because i like to eat all the pies.

Plaquenil can give side-effects IN THE BEGINNING, but they usually wear off. It took me about 1 month for things to settle down properly, but i did start straight away on 400mg and took the dose in one go instead of 200mg am and 200mg pm ... did not read the instructions properly! It seems many start on 200mg.

Whilst the skin on my face was merely lumpy / pink it is now as smoothe as a babies bum. If i did not smoke and did not have lines I'd be looking good! It has taken more than a year for this effect, but it does not regress. Or has not so far. It can only be plaquenil since my other meds have no skin effects and it was like this for a long time prior to medication. I have not had a nose ulcer in over 18 months.

I do have problems with pain relief from time to time since non steroidal anti-inflammatories cause me worse side-effects than the pain and do not seem to work for me anyway. So I just ache all the time.

However, when my back hurts at the same time as other aches and pains (scoliosis / arthritis thoracic spine) i find it tough going. I wanted to let you know, even though i do realise it is not practical for everybody, gentle exercise has helped both my back pain and other general aches and pains.

For me gentle exercise is a gentle swim for 30 mins (stop as often as i like) at the local swimming pool. It's cold, and the last thing you feel like climbing into when you are in pain, but you get used to it. The other thing is properly instructed yoga for people with health issues. Not yoga held by a person who has read a few books and happens to work at the local sports centre. If you find somebody who deals specifically with health issues yoga can be used very effectively.

Alas I cannot afford to see the yoga teacher I saw, but it would be my first choice when in pain if I could afford. Even so, I still use some of the positions I was 'helped into' when I was able to afford, and I do get some pain relief, and feel a lot more in control. I think the strength and flexibility gained by this type of gentle exercise is really useful in long term pin control becasue it stops you tightening up and creating other aches and ains of a muscular nature so avoiding poor posture, which has the knock-on effect of more pain.

Wishing you well.

PS I turn into an achy slug premenstrually and for the first 3 days. I find eating cereal like porridge, reducing tea and coffee, and not giving into the chocolate munchies during this period prevents me from feeling even worse. There are yoga positions you can use during your period that really help reduce pain and feel more enrgised.

amazing but true ... it's just finding the right instructor that's the beggar!

Take care.
:love:
Thanks for your reassurance and advice Alwin....much appreciated. Like you, I cannot tolerate AIs so have learnt to live with the daily pain too. I have been shown some gentle exercises by a physio so I try to do those on a regular basis. I also go out walking when I can, despite knowing that I'll be in agony by the time I return and will have a restless night, but the area that I live in is too beautiful to miss. Not sure about the yoga as I have difficulty touching my toes let alone anything else!
 
1 - 17 of 17 Posts
Top