Sarcoidosis - not enough care and attention given to sufferers

Hi Sharon

So glad your GP helped you and gave you a plan and put your mind at res

Hope you are feeling a lot better now

Hi All,

Those of you that are suffering from a rash caused by the condition do you find it comes & goes or is present all the time?

C x

I have had sarcoidosis since 1985, so maybe I can offer the occasional piece of wisdom. Many posters are talking about the technicalities of certain tests, but the real issue for long term sufferers is how to live with this illness.

I found very early on that if there was going to be any progress, then I would have to do it myself. You should all change your ways towards a healthy lifestyle ( get rid of alcohol, eat properly, and keep regular hours ). You probably think you have done - but have you really ?

The saving grace for me is exercise, which I accept may not be possible for everyone. I go for a good walk every evening. consequently i sleep better and the fatigue is slightly less troublesome. good for depression as well, of which there is plenty with Sarcoid.

Thank you for that advice Martin....and Welcome

Hi all

Well I am finally able to report that I started medication Hydroxychloroquine on Tuesday.

Although you wont believe it I still never got an answer from the eye hospital....6 weeks and still waiting.

My GP sent a referral to an Opthamalogist and I got an appointmnet within 10 days, he agreed that it was safe for me to commence the medication but it may take up to 2 weeks for my GP to get the report.

So I made an appointment to see my GP and explained and was lucky that my word was taken for it.

Hope you are all doing well especially as the nicer weather is with us.

Take Care x

Hi Martin and everyone else,

Martin, you are right that we should take extra care of our general health. I am on Prednisolone, inhalers and Methotrexate. The NHS advice on Methotrexate is to avoid alcohol but I found a website that said you could have four units a week, which a couple of glasses of wine. As you also mention, depression can be a significant feature and a little drinkie now and again helps to lift the spirits :-)

But watching diet and weight is a constant struggle. I have pulmonary sarc and was told early on to avoid gaining weight as that puts even more stress on your lungs. I am also trying to make sure I either walk or do some exercise each day, and it definitely does help. I know June is in a wheelchair but I have been told of wheelchair based exercise sessions in England, so hopefully they also exist in Scotland.

Hi all

Well you where right I have been on these steroids for six weeks and gained a stone in weight I'm now seven ting stone -

On the plus side I'm down to three tablets a day which I'm taking until my next appointment x

And I've gone from not been able to get out the bath to - wait for it - decorated my bedroom painted the walls and ceiling wallpapered x wow I have not worked like this for about four years

To day i received an appointment for the eye hospital but not sure why any ideas - is this just a check up and why have I been referred x

Do we have problems with eyes x

I'm on holiday now for a week so going to take it easy x

Lots of love sharon 🌺🌻🍁

Yes, sarcoidosis can affect the eyes, causing uveitis in particular. I have been having eye problems but I think the cause is long-term steroid treatment which dries your skin, eyes, mouth, etc, etc. I have an appointment at Moorfields Eye Hospital in London in June. If my eyes are OK, I hope to have my prednisolone dose reduced. But if there's a problem the treatment is.... Steroids.

A huge welcome to you Martin and thank you very much for any and all input. As you can see we are mainly women so it will be refreshing to have a man's point of view.

You are 100% right about looking after your health. Doctors can prescribe medication and suggest help but they can't do it for you.

I don't drink at all nor do I smoke. I would hate to think what permanent damage would be done to Sarcoidosis lungs if one smoked. I'm also a vegetarian so nothing but good fat free foods.

I used to be very fit. I ran a biathlon 3 years on the go (running 20+ miles over rough terrain and then cycling 30 miles up and down very steep hills!) I also used to go for a long hike with my husband every weekend and we have climbed a couple of mountains. Sadly he died suddenly from a massive heart attack 14 years ago and as you already know I ended up in a wheelchair 4 years ago. I really miss the great outdoors and would highly recommend that everyone goes out hiking. The fresh air and the gorgeous sights are second to none.

Sharon, all I can say is that the weight isn't permanent and will come off once you stop taking the steroids. At the moment it is more important to get your Sarcoidosis under control. Thankfully not everyone has to have steroid treatment but for those of us who do we definitely need to keep ourselves healthy as our body doesn't need to be given anything else to cope with. As for your eyes, Sarcoidosis causes extremely dry eyes in some people (about 1 in 4 people who have Sarcoidosis get problems with their eyes) as it affects the tear ducts. With this dryness comes other possible problems such as abrasions on even sarcoid lumps on the cornea (I have one but it doesn't bother me now that I use artificial tears) and of course Uvelitis which can cause permanent damage if not treated and at worst can cost you your vision.

Glad to hear you are finally on the Hydroychloroquine Linda. Give it 2 - 4 weeks and you should start to see a good improvement in those sore joints. I went from barely being able to hold my mug of tea almost back to normal. Although I still get joint pain depending on how wet and cold the weather is

Sorry my posting doesn't make sense. somehow it got scrambled when I posted.

It should read;

As for your eyes, About 1 in 4 people who have Sarcoidosis get problems with their eyes .Sarcoidosis causes extremely dry eyes in some people as it affects the tear ducts. With this dryness comes other possible problems such as abrasions on the cornea and even sarcoid lumps on the cornea (I have one but it doesn't bother me now that I use artificial tears).The main problem is Uvelitis which can cause permanent damage if not treated and at worst can cost you your vision.

Hi June,

I've looked up uveitis and I'm not sure whether I have it. I have been referred to a uveitis clinic although the respiratory registrar didn't think it was that. My eyes are sore on the outer edges and I keep getting conjunctival bleeds which start to clear - lots of drops help - then recur. These are mostly minor bleeds in that the eyeball goes light pink rather than bright red, although that also happens sometimes. I think this is extreme dry eyes, caused by either the sarcoidosis, steroids or a combination. I do get 'floaters', but have done for years.

Hi Di,

OMG you poor thing you must be going crazy with it not to say you must be very worried too. I had problem with my eyes a couple of months before I was diagnosed with Sarcoidosis. I was sent to the ophthalmologist because I had discovered the 'lump' in my right eye towards my nose side. At that time it felt like something was in my eye so was a constant annoyance. The ophthalmologist said I had incredibly dry eyes and prescribed me artificial tears. She said the 'lump' was a little cyst and as it wasn't bothering me she was going to leave it alone! Obviously she wasn't listening to me when I told her it was annoying me . She discharged me saying that dry eyes was an 'older' woman's problem! How charming! I've never been back to see her but I still use the drops to keep my eyes moist and although the lump is still there it doesn't bother me now.

Do you think the bleeds you are getting are from maybe rubbing your eyes or do you think it is possible that you have abrasions on the cornea ? The ophthalmologist told me that even opening and closing the eyes was enough to cause abrasions to the cornea so it is possibly the dryness of your eyes that is actually making lots of tiny abrasions that are bleeding like tiny scratches. I think you could possibly be right about the combination of the Sarcoidosis and the steroids making our eyes more at risk. It's a case of damned if you take the steroids and damned if you don't. Because prednisolone is a corticosteroid and not an anabolic steroid it is less likely to cause damage. One of the risks is pressure build up in the eye causing glaucoma but you need to be on high doses of steroids over a long time for this to happen. However if any family member already has glaucoma then your chances are much higher of getting it. Anyone who is taking hydroxychloroquine is also at much higher risk of eye problems too.

I'm sure you know this already but for the benefit of the other members who don't knowI want to explain the following; 'itis' on the end of a word means 'inflammation of' e.g. Bronchitis - inflammation of the bronchi, Pancreatitis inflammation of the pancreas. Uveitis - inflammation of any part of the uveal tract which is the middle layer of the wall of the eye. The uveal tract has 3 main parts: (1) the choroid (the tissue layer filled with blood vessels); (2) the ciliary body (the ring of muscle tissue that changes the size of the pupil and the shape of the lens); and (3) the iris (the colored part of the eye). Also called uvea. The uveal tract is very vascular (has lots of tiny blood vessels) so even the slightest damage will cause it to bleed. With all this area being able to become inflamed, it's not surprising how easy it can be for sight to become permanently damaged.

I get floaters too although my ophthalmologist again told me it was my age! They can be due to other causes though, such as high blood pressure or even rubbing your eye. They can also be caused by retinal tears and because you have tiny bleeding vessels I am so glad you are being referred to the eye clinic. At least it should put your mind at rest and hopefully they will be able to prescribe something to reduce the cycle of these conjunctival bleeds. I read recently that people who have Sarcoidosis should automatically have their vision tested every few months. I can't remember where I saw the advice though but it makes good sense to me.

Anyway, you look after your eye sight Di and good luck at the clinic.

Hi June,

I'm not that worried because I'm sure it's not Sarcoidal. I try not to rub my eyes - I do use cold cream on cotton wool pads to remove eye make up but I have done for many years without ill effects. I have noticed that the big bleeds have happen when I've got stressed so blood pressure may be a factor, although mine is normally OK. I do see an optician every year because my father lost a large proportion of his sight through glaucoma, and Sam the optician says my eyes are fine. He has recommended some drops for my eyes and they do help ease the discomfort, but don't stop the bleeds happening. I will be interested to see what the eye hospital has to say.

I hope the eye clinic finds out what is causing your subconjunctival bleed although a lot of the time they are unable to find the cause unfortunately. Two other things I forgot about that can cause this type of bleed are; fits of bad coughing or violent episodes of vomiting (this would be the episodes when you feel your whole body is going to turn inside out!). The raised blood pressure reason is rare but does happen. There is no treatment that I know of for this condition and doctors tend to say it takes around 2 - 4 weeks for the blood to be reabsorbed and go away. However as you are having frequent bouts of subconjuntival bleeding then I imagine it won't be going away anytime soon. If it is okay with you, I would be grateful if you can tell us what they say at your appointment, thanks.

Best of luck,

June

Hi ladies

As some of you know I'm having eye problems all since sarcoid started

I don't actually have dry eyes but do tend to get bloodshot corners in the eyes

Along with my poor vision nowadays

My latest symptoms are swollen ankles and a spasmodic groin pain on my right that tends to give kind of tingling in my while leg and foot. Not sure if this is sarcoid related though

Best wishes to all x

Hi Linda,

Best to get that groin pain investigated I think and the swollen ankles too. Both symptoms could relate to many different problems but I'm doubting that they are related to Sarcoidosis.

The fact that you are getting tingling sensation in your foot and leg is more indicative of a possible spine/nerve related problem. It could be due to the way you sit (at work or at home) to carrying shopping that is too heavy for you. Groin pain and swollen ankles can also suggest urinary problems too so best to see your GP to be on the safe side and take a urine sample with you so your GP can test it.

For everyone; It is best not to attribute everything to Sarcoidosis as you could miss something your body is trying to tell you. If you are ever unsure then it is best to visit your GP. It is best to nip illnesses in the bud before they have had a chance to cause real problems.

Hope you are feeling better soon, Linda but please go chat to your GP.

Big hugs,

June