Sarcoidosis - not enough care and attention given to sufferers

Hi all

Just a quick message to say I'm now off steroids - at least until the start of May, unless any blood tests in the interim indicate differently.

Not entirely true actually. I'm off oral prednisolone but I'm on a cream, Daktacort, that includes a "mild potency steroid" because I've developed a rash. Areas of inflammation, really itchy, wee white raised blotches that in some cases have turned into wee red bleeding spots cos I was scratching them in my sleep. My GP reckons my body is run down after having sarcoidosis and coping with umpteen changes of medicine - I was on a couple of other things for different conditions that had to be changed because of sarcoid and their potential to worsen it - so now its rebelling by trying to set up a mini infection. Daktacorts a combination of steroid and antifungal and after 2 days its starting to have an effect - yay!

And yes I like the fact that there's generally someone who can either offer advice or comment or support when needed.

That's great news, Morag. Not so much for getting a rash though. Actually it sounds similar to the one I have been fighting since around November last year. Mine originally started on the palms and fingers. Itchy little spots, some look like tiny blisters and if they pop due to scratching they have clear fluid inside. Rather like a tiny blister. The other spots are a bit like blood blisters and when you scratch those they can bleed a lot for something so small. Also once they scab over they tend to just sit there red and inflamed looking. Mine are over my face, mainly on the cheeks and some on my forehead, on both arms and back. A few only on front and legs. I also found that they end up stinging after I have scratched them and they also feel like a blister stings, if you get my meaning. It was one of the red spots that the dermatologist took a biopsy from but as yet I have not had the result. She gave me Dermol 200 shower emollient and Dermol cream. Not really making much difference yet. Perhaps they don't have the 9 signs of aging formulae ha ha!

I also get flushing red on both cheeks, under chin and neck. It looks a bit like a mask. This flushing sometimes produces more spots. I also used to get them on my scalp but I only have one very persistent one left now. I don't see the dermatologist until May but I will see my respiratory consultant on the 18th of this month so I will tell him that one of the members of the forum has what sounds like a similar rash. Being able to compare notes as it were, stops symptoms either being ignored or being put down to another ailment before a definite test is carried out. The fact that we now can say we know others who have been diagnosed with Sarcoidosis when we visit our various consultants means that they pay more attention to the various symptoms I think, I have found my skin to be overly sensitive since getting the rash. If a hair lands on me it drives me crazy as it causes the skin to itch like mad. It's so weird. The rash on my back is just sore all the time but the dermatologist was a bit annoyed with me for scratching I think but I really couldn't stop myself. Maybe they should have given me calamine lotion!

How about you? I imagine it is sub consciously driving you nuts as you are scratching in your sleep.

I guess it will be mitts for the both of us to stop us scratching ha ha!

Please let us know how you go on with the skin treatment. How long did it take to get you off the oral steroids? Fingers crossed the oimtment will work quickly on your rash and you will be able to stop that too.

I forgot to ask the forum if there were any of the members on oral steroids who have been told they need to have regular DEXA bone scans. Also are there any of those members who have not yet been given a DEXA scan because you need to get your GP to refer you for one if not and don't take no for an answer. Steroids thin the bones and there is no turning back once the bones thin but it can be stopped from going further if it is spotted on the DEXA scan.

Hugs to all xoxoxo

Hi Di,

Thanks for the kind words. Couldn't have done it without all of you though.

That's a great idea for Linda to go on-line to find the consultant's email, phone number etc. I never even thought of that and I'm always surfing the Net.

We have one kickass forum here (if you'll excuse the rude sentiment) ha ha!.

I think all you members are truly great. I even notice that stuff you don't know enough about, you surf around to find more on and then share what you've found. Brilliant! Just how a great forum should run.

xoxoxo

Thank you for your kind words and support too Cassy. It's much appreciated.

xoxoxo

Hi June, Di an all.

I was unable to find the PROFESSORS's contact details at the eye hospital so I have now emailed my

Sarcoid consultanat and asked her to step in, she may have more joy.

The only fear factor that I have though is the fact that they discharged me last month as no more they can

do for me, they may just say 'yes' it is ok re the medication!!!!

June, fantastic news re the housing officer, maybe if they had visisted you intially they would of had a

clearer picture of what was going on and see your situation for themselvesf, how can they tell from a voice behind a phone.

It is so frustrating how the top dogs can be so dismissive.

But well done for getting it all sorted and it seems you have gained a lot more from it. Congratualtions.

They deserve to be eating out of your hands after all that they have put you through, along with your own

health issues.

They should be named & shamed!!!!

Take care & keep up the good work on this site. x

Hi June

Pleased to say that the cream I've been given seems to be starting to work already. The blood blisters on one arm are either going or at least are much smaller than they were and the other arm isn't as itchy all the time. Its called Daktacort, combination of minocycline and hydrocortisone. Apart from anything else it has to live in the fridge so the cool lotion going on an itchy part in itself can work wonders for a few minutes

I haven't had a DEXA scan but the respiratory consultant said we'd talk about that next time I see her. That was about 8 months total on steroids including weaning off period. More blood tests between now and May when I see her again to check on whats happening.

Hi Ladies,

I went to my chiropractor today, as now going on a 3/4 week basis, although he now wants to see me in two weeks.

He mainly worked on my neck today as I have been having terrible pain in the left side travelling up to my head and it feels like it is going to explode.

Anyway he asked me what my ESR levels were at my recent blood test but I wasnit able to tell him, he said a 'normal' reading is 10.

Ironincally when I got home I had the report from my consultant from last weeks appointment.

To which you ladies maybe able to throw a bit of light on: although I am aware of most of it, but be good to hear of any comments you may have on the points below, and just to let you know where I am at.

- ESR levels 68

- Elevated Alkaline phosphatase

- Volume loss in upper zones suggesting Fibrosis.

- slight improvemnt in Hilar lumphadenopathy

- visal acuity poor. 6/60 = R 6/24 = L -which is where I had the uveitus.

- alternative medication if not Hydroxychloriquine suggestions = Methotrexate and or Azathioprine

Just as I thought I was getting better.....although I have felt very tired the past few weeks following that

awful 3 week cough I had...to which I got a telling off by her last week for not getting anti biotics.

xxx

Off the top of my head - a normal ESR is 0-20 for females, so 68 sounds pretty high. Its used to diagnose inflammatory conditions. But then maybe its coming down, 1 figure isn't really enough to judge, in which case you could well be improving.

Could give a load of stuff about alkaline phosphatase and how it works but basically its an enzyme; among other things elevated ALP levels are indicative of a diagnosis of sarcoidosis. Again it depends, is it less elevated than before or has it gone up a bit?

Volume loss suggesting fibrosis, I'm presuming is lung volume and as far as I can gather it can be an issue for people with sarcoidosis for a long time or those whose lungs are worst affected.

Poor visual acuity - could be an after effect of uveitis. If it makes you feel any better one of my pals who has nothing wrong with her at all has vision results similar to yours.

Not so sure about azathioprine but I have a friend who was on methotrexate for years and it has a lot of potential side effects, some of them quite nasty. She wasn't allowed to take any alcohol at all, not even things like a red wine sauce because of the potential for liver damage while using methotrexate.

Lymph nodes being less inflamed/involved is definitely definitely definitely a good sign though.

I'd say though a lot of it depends on how you feel yourself. If you feel better then the chances are the latest results are better than previous ones and you're right.

Hope that lot helps

Morag

Hi Morag,

I'm glad the cream is working for you. I think if my skin condition is the same when I go to see my respiratory consultant I will ask him if he thinks I should change my cream to Daktacort. The dermatologist is a friend of his so he should be able to consult her with no problem.

8 months is far too long to be waiting with no DEXA scan. What was the highest mg of steroids you were on? I was originally on 60mg but the side effects were too great for me to stay on that dose so I was gradually reduced to 10mg and now staying on 7.5mg for ? years. Are you on any inhalers? I'm also on a steroid inhaler, Seretide so I imagine the effects of the steroids in that would also have to be take into consideration. Luckily I get sent for DEXA scans every 3 years as I had a total hysterectomy when I was 33 and couldn't take hormone replacement therapy. However my respiratory specialist sends me for yearly DEXA scans with being on steroids.

I think it would be a good idea to ask your GP to send you for a DEXA scan rather than waiting for your next appointment with your consultant. Better to know sooner rather than later.

The highest dose of prednisolone I was on was 20 mg for about 3.5-4 months, which is probably why the consultant isn't too worried. Then its been gradually reduced every 3-4 weeks till as of this week I'm on nothing.

No inhalers, other than Daktacort where I think the dose it says for hydrocortisone is either 1% or 2% (so not exactly a lot) no other steroids at all. And I've never had to use them in the past.

Seeing my GP again at the end of this month so I'll discuss it with him

Hi Morag,

I was told by a rheumatologist that it's the going on and coming off steroids that causes the problem, rather than being on them per se. But if you've only had the one course it shouldn't have done too much damage, no harm in being checked, though. I am due for my three yearly DEXA scan this spring. I have significant osteoporosis in my lumbar spine and osteopenia - pre osteoporosis - in my hips. But I been on and off steroids several times over the last twelve years and am post menopausal.

Di

Hi Morag,

Well by the tone of things I think mine has probably risen, but I am not aware of what it was before,

although from now on I will be asking.

Thanks for all the information, very helpful

My eyesight is getting worse but I still put most of it down to the 'misdiagnosed' TB medications.

At present I am not feeling as well as I did a few months ago, hence the readings may of all raised.

The renal consultant and respiratory consultant that I see are both very good at showing graphs of these results, gives you a really good picture of what's going on and what the trends are. Maybe you should be asking to see those cos I'm pretty sure its just a standard production that gets made when new results are entered

Morag

Hi Linda,

I'm going to describe the different tests and names in case any of the members want to know in lay-man's terms what everything means so I'm sorry Morag if it looks like I'm repeating everything you said which would be very rude of me. I'm definitely not doing that, you did a super job of explaining. I'm just filling in the wee bits in between in the hope everyone understands what all the terms means.

ESR stands for Erythrocyte (red blood cells) Sedimentary Rate - the rate at which the red blood cells takes to sediment in one hour inside a test tube.

The normal ESR for women is 0 - 20 millimetres per hour for a man it is 0 - 15 but these results do not take a person's age into consideration and that the older we get the more likely we are to have an inflammatory condition that would show a higher than normal ERS result. They did use to calculate ESR by taking the patient's age adding 10 and dividing by 2 but this way of calculating was eventually thrown out. If it's any comfort, a result of over 100 is looked on as a high result so yours is medium at the moment and as Morag says it's possible that this is a reducing number.

The test is used to help diagnose a multitude of inflammatory diseases and auto-immune diseases. It might be elevated because you had a chest infection and there for you would have had inflammation going on as well because of all the coughing.

Elevated Alkaline phosphatase will be due to you having Sarcoidosis which causes higher than normal calcium in your blood. Alkaline phosphatase is protein found in all body tissues. You are not allowed to eat or drink 6 hours before this test is done. Parts of the body that can hold high amounts of this protein is the liver, bile ducts and bone so this test is used to record liver or bone disease, to check if medication is working, as a liver function test and the result is high when you have sarcoidosis (or a load of other diseases which I'm not going to list as it is the sarcoidosis we are checking for)

Fibrosis of the lungs (Pulmonary Fibrosis) usually suggests scarring of the lung tissue which can cause a reduced lung volume. Although in your case the fibrosing of the lung seems to have improved which is fantastic news. Fibrosis is a secondary effect indicating that there is another primary disease causing the problem, in your case Sarcoidosis

Pulmonary (lung) Fibrosis causes dry hacking cough, fatigue, shortness of breath, chest pain, loss of appetite. Naughty girl you really should have gone and got antibiotics as it may have prevented the fibrosis, although it would appear that you already had it before this episode of chest infection..

Hilar Lymphadenopathy - Hilar are the areas that branch off from the right and left lungs at the windpipe. Around this area there are lots of lymph nodes. When the lymph nodes become enlarged it is called Lymphadenopathy.

Visual acuity - this is pertaining to your central vision. The vision used to see detail. As I don't know anything about eye tests and results I searched around and found the following about registering if you had poor vision. It seems to cover exactly what your report was on about. I have to say that I had no idea your vision was so bad. I sat a bit shocked when I compared your results to the table of results I've posted, but then maybe I'm reading it wrong as dyslexia reigns supreme in my life and I tend to misread things! Was your sight a problem before you were diagnosed with Sarcoidosis or did the Sarcoidosis cause the problem? No wonder you have been so worried. I'm just surprised why they signed off on you at the eye clinic. Did they do this because they can't do anything more for you?

The ophthalmologist uses a combination of both your visual acuity and your field of vision to judge whether you are eligible to be registered, and at which level. If you have a good visual acuity, you will usually have had to have lost a large part of your visual field to be registered as severely sight impaired (blind) or sight impaired (partially sighted).

Alternatively, if you have all your visual field, you will usually have to have a very poor visual acuity to be registered as severely sight impaired (blind) or sight impaired (partially sighted).

Generally, to be registered as severely sight impaired (blind), your sight has to fall into one of the following categories, while wearing any glasses or contact lenses that you may need:

• visual acuity of less than 3 / 60 with a full visual field

• visual acuity between 3 / 60 and 6 / 60 with a severe reduction of field of vision, such as tunnel vision

• visual acuity of 6 / 60 or above but with a very reduced field of vision, especially if a lot of sight is missing in the lower part of the field.

To be registered as sight impaired (partially sighted) your sight has to fall into one of the following categories, while wearing any glasses or contact lenses that you may need:

• visual acuity of 3 / 60 to 6 / 60 with a full field of vision

• visual acuity of up to 6 / 24 with a moderate reduction of field of vision or with a central part of vision that is cloudy or blurry

• visual acuity of up to 6 / 18 if a large part of your field of vision, for example a whole half of your vision, is missing or a lot of your peripheral vision is missing.

As for the alternative medications Methotrexate and or Azathioprine as Morag said nasty side effects so I am hoping they will allow you to go on hydroxychloroquine. They are working very well for me with no side effects and I have a low tolerance high sensitivity to most drugs so that must say something. Methotrexate and Azathioprine are also used as immune suppressants in combination with other drugs. I know my consultant was very reluctant to put me on them and kept saying the side effects can be awful.

I hope this is of some help to you. Sorry it is so long but I know some people just don't like asking for a definition of something as they worry they will look stupid. Nothing could be further from the truth. When ever I don't know something I always ask but I know I draw some shocked looks from people. It's not nice and I totally understand why people are reluctant to ask what something means. I also think it is the people with the shocked looks who are the stupid ones because more often than not they don't know either but pretend they do. How crazy is that? Damn I'm up on that soapbox again ha ha!

Anyway Linda, I think on the whole your report is saying that there has been good improvement in some areas, whereas in other aspects treatment is still required. I think Morag put it perfectly when she said it depended on how you felt yourself. You could ask your GP for a copy of previous results so you can compare them rather than being left wondering if you are improving or not.

Big hugs

June xoxoxoxoxoxo