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[pamb]

Hi Ladies

Went to my dermatology appointment a couple of weeks ago to see what this irritating purple/red rash is over my legs, chest and arms.  Thought he would say I was allergic to something or possible psoriasis.  Instead I was given the possible life changing diagnosis of a rare inflammatory condition called Dermatomyositis.  Only 10 in a million people have it - how lucky am I !!!!  I'm hardly ever ill and rarely go to the doctors.

It's a condition that affects the skin and causes muscle pain and weakness, but the shocker is that the condition can present itself when there is an undiagnosed cancer somewhere in the body so I'm about to undergo extensive tests i.e. a CT scan, MRI scan, lung function test, ECG, muscle weakness test, possible colonoscopy, gastroscopy, another mammogram and God knows what else.  As it's also classed as an auto-immune condition, I'm assuming that the menopause may have been the trigger, if no cancers are found.

I started HRT in December 2017 whilst still having periods and was feeling much better in relation to flushes/night sweats and improved sleep.  As my periods were still erratic on the HRT I assumed my own hormones were still in play, but then they settled down so I assumed that my own natural period had stopped and I was just experiencing a withdrawal bleed from the HRT.   In that time I noticed a red/purple rash on my legs which got slowly worse.  I stopped the HRT altogether and the rash got worse and spread to my hands and chest.  So I'm wondering if the drop in natural estrogen and also the amount I was receiving from the HRT is what's triggered the condition.

So do you think it would be worth going back on HRT, once my tests are all completed and hopefully negative for cancers.  My dermatologist thought I should be okay going back on it.  The treatment for this condition is very strong medication as in steroids and auto-immune drugs which can have severe side effects and I'm worried about my quality of life once on these as I'm a fairly fit and active person.  I don't have much muscle weakness and I exercise regularly so that should help.

I really want to only try topical steroids on my skin first off and try to avoid taking any drugs if possible.  I'm taking turmeric and omega 3 capsules which are anti-inflammatory and hope this will help.  There was a study I read that was very interesting on how turmeric was even better than some auto-immune drugs.  Of course things like that won't be supported by the pharmaceutical companies as there's no money in it.

I'd be grateful for any advice you can give me regarding HRT as anything that can stop me having to take these strong drugs would be good.  I feel totally shell shocked by the whole thing. 

Many thanks for reading this lengthy post.

pamb x

[CLKD]

What a shock from here too  .  So all our suggestions didn't reveal anywhere near what your condition turns out to be  . Is there a support group for this condition?  Your Consultant should know. 

However.  Don't rush into 'alternatives' as some may interact with medications.  Although some may be beneficial they can interfere with medication up-take and responses.  Are any drug companies involved with this condition, again the Consultant will be aware.  Ask if this is discussed at the various Conferences that they attend.


Maybe find out who funded the 'study' regarding turmeric as it may have been by the company who makes supplements. Also, a truly good study will be double blind tested and Peer reviewed as well as being put before NICE for consideration. Although turmeric is as old as the hills, use in humans as 'alternative' or supplements hasn't yet been proven.  DH uses it in curries, it don't have stain   

'itis' = inflammation.  Derma = ? skin?

Steroids help a lot.  My dog had them by mouth when she was diagnosed with lymphoma.  She got very hungry  .  Mum had them by mouth when she had polymyalgia rheumatica.  Her face swelled quite a bit.  Steoirds have such a bad press but they are prescribed appropriately for a reason.  Maybe discuss more at your next appt.?  Start making a list of your queries to take along.

A drop in oestrogen is natural, does the Dermatologist believe that hormones are the causation?  It may be that this is a 'slow' progressive disease rather than something that will race away? 

Maybe keeping a journal will help chart progress?  Does the Dermatologist not know where a possible cancer - if any - will be situated in order to stimulate this disease? 

10 in a million - exclusive then ........... is this World wide, does it affect more people in the 1st World rather than elsewhere  . 

 

[CLKD]

The UK-based charity, Myositis UK, has more information about the different types of myositis.

You've probably been looking round?  The above is from the NHS.

[pamb]

Thanks for the reply CLKD.

Yes I've seen the Myositis UK site but The Myositis Association which is in the US is a good one too with a lot of good, and scary, information.  I'm trying not to read too much about other people's stories as this condition can vary from person to person so I'm just going to read up as much as possible and then just see what happens because it's easy to imagine some symptoms that aren't there.  There is a small possibility that you can get one flare up, it then goes into remission and never returns, and it can sometimes just burn itself out.  Here's hoping!!

I can't remember what the study was regarding turmeric as I read it ages ago while looking at something else, but thought it interesting at the time and I'm fairly sure it wasn't by a pharma company.  There is a good website called NutritionFacts where there is a lot of excellent information about food and health. Possibly saw it on that.

The possible cancers in women are ovarian, breast, lung, and bowel.  So I won't start any HRT until I've gotten the all clear.  It's also possible that having this condition can increase the likelihood of getting cancer in the future, especially in the first 5 years so I will need monitoring.  Oh joy!

Yes I think it's worldwide and it affects both Caucasians and the African community equally, although women suffer from it more than men - just another reason to want to come back as a man!! 

I'm also disappointed that I have to avoid the sun as I love the sun.  Factor 50+ for me from now on.

I think if I started back on HRT and I was able to get my sleep back without waking 3 to 4 times a night with sweats, then that might help also as sleep can be a great healer.

Thanks for the reply CLKD.  I'll keep posting as I think this forum is great for support whatever the problem.

pamb x

[CLKD]

When undergoing radiation treatment I had to wear a hat and keep out of the sunshine.  As I don't like being too warm it wasn't a problem.

5 years - the magic number  ........ when do you start all the investigations?

 

[pamb]

I've had the muscle weakness test, but that was just someone pushing on my limbs and that was okay.  Hopefully I won't have to have a muscle biopsy - sounds painful!!   I had the CT scan and ECG on Friday and I've got an appointment for a lung function test early April.  Not sure, but hopefully if the CT scan is clear then they may not have to do any invasive tests like colonoscopy or gastroscopy.  Not sure if they would want to do a transvaginal ultrasound on the ovaries anyway just in case the CT scan isn't as reliable.  Probably have the MRI in the next couple of weeks.  Have to say the NHS have been very thorough and speedy so far.

I thought this year was going to be a good year as I've spent the last 18 years caring for my mother and then my mother in law, both with dementia.  They've both since died, my MIL last year and we just got her affairs sorted out in January this year, and then I'm landed with this.  It would've been nice to have had at least a few years before I had to deal with anything as serious as this, but I'm trying to stay positive and take each day as it comes.  That's all anyone can do isn't it.

pamb x

[pamb]

Thanks for the reply Stellajane

Yes I'm looking into a good sun protection cream.  Eucerin do a good one which also helps with sun allergies and it's Factor 50.  It's expensive though so I might try the Soltan as well to see if that's good for me too.

My night sweats came back with a vengeance when I came off the HRT.  Probably should have tapered it off.

Thanks again Stellajane

pambx

[CLKD]

I have found that the more expensive skin products are, the less I have had to use.  Make sure that they don't have hidden fillers etc. which might cause problems.

My heart goes out to you.