Sarcoidosis - not enough care and attention given to sufferers

I seem to struggle the worst between end of Oct- end of Feb.. Sun actually seems to be good for me.. my calcium levels are also pretty low, so seems to be that I actually require extra vit D

Hope you are feeling much better soon Sharon x

Sorry to hear you have added problems

I have not heard of Crest but will definitely look it up.   But as previously mentioned by MM  the internet can give you a scare as they always look at the extreme cases

I also had so many things running through my head. I even thought it was ME at one stage

There are so many mirrored symptoms with such a broad spectrum of illness

I often wonder if it is actually Sarcoid I have at times.   

Hope it doesn't get too much

Had a look on some of the medical sites I access for my work. If it makes you feel any better about it the vast majority of people with crest have it very mildly. Basically its a hardening of skin, which can be treated (though not cured) effectively with your every day moisturiser. It can also affect other organs but even then a lot of it tends to be fairly mild and often doesn't need any specific treatment. Its an auto-immune disease, which is what they also reckon is a possible cause of sarcoidosis so its probably no surprise if people with one develop the other. 

The other comments folk have made are quite right - cases shown on the internet tend to be the very worst ones because they get a reaction. Nobody is going to react much if they say "our patient has this condition which caused hard patches on their skin and it cleared up pretty well with use of E45 cream". So here's hoping you are one of the vast majority of folk who develop the condition and just have it in a mild form.

Welcome to the mad house  

I haven't used hydroxychloroquine because I haven't had any issues with my joints but I'm pretty sure some of the other have. So they might be able to help with that.

I was on steroids for a while, 3-4 months on a dose of 25 mg/day then gradually reduced over the next 3 months till I'm now on nothing. They'll help with the exhaustion and probably some of the other sarcoid problems but not everyone wants to use them I know. 

Morris dancing dressed as a frog - never had that suggestion from any of my doctors but I'm in Scotland where we don't do Morris dancing so maybe that's why ;-)

hope you find something useful from some of the others on this site

Morag

Yep, other than spleen, my issues are same as you, the lungs, lymph nodes, joints and occasional neurological issue.  My both specialists  ( lungs and joints) took me  off steroids, I did get the injection for joints and inhaler for lungs, which both seemed helping.  I am  exhausted most of the time and could be sleeping standing up in a public transport..  I was put on Hydroxychloroquine in Nov 2013. My eyes are still OK, I am  maybe not as tired now (read : slightly better), joints are no longer swelling, feet and ankles are not painful all the time. So I guess it has being helping. I still get stiffness in most of my joints but nowhere near as bad as it was. My lungs are back to normal with exclusion of diffusion issues, which they are not overly concerned with considering the leap I have made otherwise. I found that cutting out fast carbs from my diet has helped also (and all alcohol with exception of glass or two red wine couple of times a week). I only have a slice of whole meal bread in the morning and pasta once a week ( I could eat pasta all the time), I now eat , lots of greens and fruit, lots of fish, especially trout and salmon, some meat and poultry. East products (cakes, pastries, beer etc) are the worst for Sarcoid, sufferers (especially the ones with joint problems)

Hope this helps a little

Love, MM

PS, I have had Sarcoid since 2012

Definitely made a difference to my tiredness. I was just sitting around doing nothing when I finished working for the day as I had hardly any energy and I noticed a difference in that after just a week or so. 

In theory hydroxychloroquine should help your joints and steroids should help with the other problems if that helps. Hydroxy should also help if you get if you get bitten by a malaria mosquito - but I have a feeling that's a bit unlikely ;-)

To be honest they're not sure I haven't picked up a random infectious disease on my travels and that's what's causing my spleen to look how it does.  My joint problems are minor at the moment but I seem to suffer from random and changing aches and pains in my muscles and joints.  I am only just realising it is the sarc and not the result of an accident I had a while back.  My lung function is fine thankfully at present and I hope it stays that way. 

What dosage are you on?  Have you had any side effects?  As for food I'm a vegetarian and am generally quite healthy (currently tucking into cake but hey ho!).  I've read mixed stuff on cutting dairy out so am reducing it.  Cutting out pasta and bread would be a nightmare though.  What have you replaced it with?  Have you taken info from rheumatoid sites? 

Sorry for all of the questions - there are so many different things going on it's hard to make sense of it all!

I guess the effects from the steroids are very personal.  I think I might start with the Hydroxy and see how it goes.  If I'm still exhausted then it's worth giving the steroids a shot but going from no drugs to both feels like too much too soon for me. 

I was finally put on hydroxychloroquine after a year, I have been on them two months now and have not had any side effects at all.

My ankles have definitley improved, and  thankfully my eyesight has not got any worse.

My husband was insistent I went to a herbalist, so now I am on a cocktail of other medicines to try to get my system 'up n running'

I visit a chirprator regular and today he said he was finally able to work on my airways that was almost shut down previously.

So heres looking forward to a better few months ahead.

Fingers crossed the combination of super herbs and the drugs help even more

So it really is different for all of us.

My consultant was steering away from steroids and felt Hydr would be best for me for inflammation and swelling etc, although mine wasnt too bad by the time I started the medication.

Super herbs...yes it will be interesting....see if my husbands money was well spent ;-}

I think my consultant's biggest concern is the raised calcium levels but if the drugs help the swelling it's a benefit.

If the herbs work you'll have to share the special combo!  

Even though the symptoms are different I personally find its good to know you aren't the only one out there with it

I am on 400 mg per day, so max recommended (not higher). It does affect my stomach, so on Omeprazol too but that could be the good old Naproxen I was on for over a year.  No other obvious side effects and just had my eyes tested (most common side effect) and they are npot damaged from the medication.  I think generally dairy is good as long as you do not over due it or eat long life stuff.  Should just eat brown rice and pasta and brown bread in moderation. Try to avoid potatoes in any form and any white flower product and sugar as much as possible As a veggie you probably don’t have an issue to eat pulses, nuts, veg and fruit. I found info from US sarcoid sufferers on-line, just googled sarcoid sites and checked rheumatoid ones as well and there are many similarities. Had a half a kilo of fresh fruit salad (good carbs) last night for my dinner (5 mixed fruit and berries) and must admit millions more energy today1

Don’t worry about all the questions, we all do that and that’s why this site is great. Sharing experiences and asking for help. Sometimes I find that good old moan helps great too and you my sarkie friends are the only ones who understand

Love, MM

Yes Morag - I totally agree. It is a very broad spectrum

There was concern over my raised calcium and been told do not eat prawns....I soo love them too. :-{