Sarcoidosis - not enough care and attention given to sufferers

Hi Di, yes it is one of the reasons I am having/had skin biopsies. So far they have found inflammation which could be due to Sarcoidosis, multiple moles and ulceration. I'm still waiting for the result of latest biopsies. I was put on Dermol shower cream and Dermol cream for all over use, Metronidazole for my face rash and Betamethasone for the rash on my body. The Betamethasone cream had to be covered with Ichthamol and Epaderm ointment and then covered with comfifast dressings. Talk about being wrapped like a Mummy! Unfortunately nothing really worked.

I suspect the itching may be caused by or at least is affected by the excess sweating as all the salts and minerals being pushed out onto the surface of the skin will undoubtably irritate it. Your hives might not be hives or Urticaria rash at all it might be sarcoid lumps. I had them across my back when I was first diagnosed. I thought they were caused by my long hair touching my back and the fact that I used conditioner on my hair but no, it turned out to be sarcoidosis in the skin..

For your feet all I can offer in advice is to wear open sandals if you can and use a talc that has bicarbonate of soda in it. Bicarbonate of soda is great for cooling (we used to use it in water years ago to cool febrile babies) You could try a couple of spoonfuls in some luke warm water and bathe your hands and feet to see if it cools them down.

On that note I realised I had forgotten to remind everyone to drink lots of water especially if you are sweating a lot. Also make sure your GP knows you are sweating ++ because he will need to keep a check on your urea and electrolytes as they can very quickly become imbalanced. Check with him that it is okay for you to take dioralyte drinks when your sweating is at its worst. This will prevent you from dehydrating and feeling faint etc. Keep a check on how much you do drink in a day. Most of us are convinced we drink lots but when we check we sometimes get a shock at how ittle we drink. On the flip side of the coin, it is just as bad to drink too much water as it is to not drink enough. Advice about amounts vary but around 3 1/2 litres is a good amount a little more if you are sweating profusely.

Best wishes,

June

Sorry Di I forgot to add that it possibly could be related to nerves being affected by your sarcoidosis, especially if they are 'tingling'. Are you also getting pins and needles. If it is neurological then I doubt no amounts of creams or cool bathing will help although the bicarb wash should cool your feet and hands. It is horrible when it gets so bad you think something is crawling under the skin. What is worse than an itch you can't scratch? I was almost convinced that something had bitten me and either got inside or laid eggs YUK! I hope you find something that relieves you soon.

June

Yes, all different places, head, hands, ankles...and nothing there to scracth....

 

Thanks for the information about bicarbonate of soda, I'll try that. I don't get tingling, just itchiness. I do have another symptom which is bad elbows. I though it was bursitis, but I saw an osteopath today who said the lumps on my elbows would sore to the touch if it was. They're not, but both my elbows ache, especially if I lift anything heavy.  Is this another sarcoidosis 'treat'?

I have painful achy elbows as well Di esp when carrying my son for any length of time. My worse joint pains are my upper limb so feel it is probably don't to the condition 

So glad June to know that you are OK, sadly tho as I can see from your post, not very well but hopefully this will get better soon. Missed you and your advice while you were not involved. Hope you are feeling better now

Love, MM

Hi MM, thank you so much for your support. I missed you guys too but I knew I wouldn't have been of much use to anyone. To be honest I didn't even turn on the computer so when I did it took me ages to wade through the ton of emails, mostly spam but you have to troll through it anyway incase you miss a good email. As I said in Rachael's posting, I was so shocked last night to see all that sarcoid rash. Why are rashes and injuries aloways in an area of the body you either can't see or have to become a human contortionist to see anything?

My rash always looks a bit like hives except for the skin discolouration which looks a bit like bruising. I could see on the mobile photos I took that there was purple, yellow and redish discolouration with masses of rash looking like blisters of various sizes.

Does anyone else have sarcoid rash? I was having difficulty getting doctors to believe me (what's new) but with my breathlessness, coughing, etc in other word great increase in symptoms I know the rash is identical to the one I had way back when I was first diagnosed. I don't understand why some doctors seem to have this fear of diagnosing the problems as being related to sarcoidosis. It's almost as though they want to give us another disease (one that they know all about) so that they can treat us! Maybe it's just me or do other people feel like this? I think this group does because we all ask each other if we are suffering the same symptoms so obviously we are still not getting that all important support from the medical field even though most of us have a definite diagnosis of Sarcoidosis. Crazy eh?

Thanks again for your words and support. Much appreciated all round xx

Thankfully ive never had the sarcoid rash, and by the sounds of it I have been very fortunate.

As you say we dont always notice the breathlessness, but a few times my friend has said to me when speaking on the phone, hark as your breathing...

 

I couldn't believe after blabbing on about sweating etc causing itching and rash, that last night I ended up with what sounds like the same as you had - a sort of urticarian rash (hives) This is the same rash I had when I was first diagnosed with Sarcoidosis so I think it is fair to say that you like me have sarcoid in your skin. I was thinking about you mentioning the problem with hands and feet and I suddenly remembered that when I was newly diagnosed the palms of my hands used to be bright red and my feet used to sweat so much my slipper boots (which is all I can wear) used to have a puddle of sweat inside them....Yuk! I went through so many pairs of slipper boots its a wonder I wasn't bankrupt! I'm really sorry Di, I had totally forgotten all this at the beginning of the disease but then I think we all get so many symptoms bombarding us, it is hard to keep a note of everything.

I imagine this lovely hot weather is making live hellish for you just now.

Chin up! xx

The symptoms just go on,  don't they? Fortunately I only get small itchy areas at present and I hope it stays that way!

Does this rash look like bruising as when my mother had her sarcoid she looked like she'd done 10 rounds with Mike Tyson. Hers burnt it's way out but her wrists still show signs where it was at its worst.

Interesting your comments about breathing. My auntie always picks up on my breathing being shallow never associated with sarcoid though

Yes and funny enough now I come to

Think of it whenever I've had lung function they comment how shallow my breathing is

Then I started noticing it. So when people/doctors etc mention it I say my breathing is always shallow

I think it's the way those of us with pulmonary sarcoidosis deal with the airflow obstruction. Basically we're not getting as much oxygen with each breath because the alveoli are blocked, and there's also a problem with getting rid of carbon dioxide. So we breath faster and harder than normal.

I get a rash that may or may not be sarcoid related. Mainly on upper back & limbs that's tend to look like red raised slightly enlarged goose bump ( bets way I can think of describing it) that occasionally become inflamed & then look like hives about size of a 10p. Does that sound similar to u June?

Does anyone get skin abscesses? I got one on my stomach when my son was just born(They said I'd picked it up from  my son as had a bacterial infection & MRSA at 6 days old.- I was not a happy mummy 😡 as questioned if he'd picked it up at home. As if!!! - Rant over!). & I've just found one on my leg now & wondered if anyone else had them?

 

Hi Cassy,

Yes that is how I would describe my rash - like goose bumps and blisters and the skin discolouration varies between a redish purple and a yesllowish colour. When I touch the skin it feels like a burn feels so sensitive. I also get a weird tingly feeling but it is hard to describe really. I also get it on my fingers too but it is like pinhead blisters and there is fluid in them just like a blister.

I haven't developed an abcess(I don't think) but some of the areas do have what looks like a boil. These 'boils' sometimes 'pop' and white matter comes out that smells like sour milk! I'm fairly sure they are blocked sweat glands/ducts which have occurred due to all the sweating. The dermatologist didn't biopsy any of them much to my disappointment as I wanted to be sure they were blocked ducts but all she said was it was down to my scratching that they had formed. Odd really considering I told her they weren't itchy and I wasn't scratching them! Unless I was doing it in my sleep which I guess is possible. She then told me my Oxycodone causes itching. I thought here we go again, another doctor who doesn't like their patient being on Oxycodone! I know it's not the Oxy causing this as I have been on it for years, well before I had sarcoidosis. I wish we were able to upload pictures onto the site. I could show you the rash as I got some really good photos with my mobile the other night.

Sorry to hear about the MRSA. Your son more than likely got hospital aquired MRSA as it is rampant in most hospitals. The doctors are the worst culprits as they constantly go from patient to patient without washing their hands and of course they constantly put their hands into their pockets too. When I was nursing I used to run after them with the bottle of hand sanitizer but quite a few would refuse to use it. It also annoyed me to see consultants with no white coat on so effectively they were taking MRSA out to the community. When I had an operation in 2007 to have part of my bowel removed, I came out of the high dependancy ward onto a regular one where I discovered a poor woman who had very bad MRSA but wasn't being barrier nursed. The nurses just used to throw dressing onto her bed and tell her to get on with it! Shocking! One day the nurse looking after me went to look at her wound and then came over to me to adjust the central line in my neck. Horrifically she did not wash her hands. I was terrified I would get MRSA and it would go straight in via the central line and kill me. Then I went home and the district nurse who came to pack the gapping hole in my abdomen (they had to leave my wound open to drain an abcess) pulled rubber gloves with no packet on them, from her coat pocket and proceded to pack my wound without even washing her hands or using any sterility at all. I banned her from my home and between my daughter and I we continued to pack the wound daily. Of course when they checked me for MRSA low and behold I had it. I did not have it before my op so I was infected by both the hospital and the district nurse.  

I hope you and your son are clear of it now, Cassy. XX

 

Yes Rachael the skin discolouration goes from a redish purple through to a dirty yellowish pallor so it does look like bruising (old and new) The blister rash on my fingers come and go. They are itchy and if they burst they leave dry patches as they are healing. The weird thing about these ones is the way they can come and go within hours. The outbreak I had the other day was one of the worst with my middle finger of my right hand being completely covered in the tiny blisters. Now I only have a few on my fingers but large patches on my back.

Yes Linda and Rachael. Short low breaths although in the early days of diagnoses those shallow breaths caused apnoea when I slept. Thank God for my cat who used to pat me with her paw until I came out of it. Even now on rare occassions she picks up on the altered breathing.

I think maybe we have been doing it for so long since contracting sarcoid, that we've stopped noticing it because it has become the 'norm' for us. No one knows they're breathing until someone says something or we need to blow up a balloon or take a deep breath. Our autonomic nervous system at work which simply means the lungs work automatically and we don't have to do anything. Nerve cells in the medulla of the brain controls the rate at which we breathe and if you try to alter it or maybe try to hold your breath the nerves over-ride this and force you to breathe 'normally' Obviously the message the medulla is getting at the moment is the lungs aren't taking in enough oxygen so the rate is increased which shows in us as breathlessness or short fast breaths in an effort to get more oxygen in more quickly. I've always been amazed at how incredible our whole body is in adjusting to circumstance. All those electrical impulses carrying requests and information to different parts - amazing!