Sarcoidosis - not enough care and attention given to sufferers

Hi again everyone thanks to everyone who sent their good wishes, very much appreciated. Well I've had my last visit of 2013 (I hope!) My consultant as always was so lovely. He even had a student with him so I'm hoping she took note of his bed-side manner and how he explains everything so thoroughly so that she will become an even better doctor. Anyway....the first think he noticed was my cough and he wasn't happy at all, then he saw my face, legs, arms and back which all have spots and abrasion like areas and again was not at all happy. I told him that my choking on food and drinks was worse and then he asked if my joints were worse which I said were. Well all this has earned me a trip to dermatology so that they can find out if the mess my skin is in is down to sarcoidosis or due to the immune suppressants. He is very worried that it is due to the immune suppressants. I have to say I am really quite worried myself as today there were new spots (like little blisters) on my nose which burst. Also, as I brushed my hand across my cheek over an area where the skin had sloughed off because of one of these blister type spots bursting yesterday, my cheek started to bleed and wouldn't stop. I spent ages putting pressure on it with a dressing pad to stop it bleeding but every time I took the dressing away it poured again. It's the first time I've been freaked out about anything to do with Sarcoidosis. In the end I put a dressing on and tightly applied some micropore tape to keep the pressure constant. Thankfully it seems to have stopped bleeding but I've no intention of taking off the dressing to check. Because of the food and drinks choking and my occasional apnoea attacks at night (I used to have them day and night when I was first diagnosed) I had to wear a monitor all last night to check my O2 saturation, respirations and pulse to see if it would record one of these attacks. My O2 sats were only 94 normally so it will be interesting to see what the results are. The dermatologist will be taking scrapings from different areas of my skin to determine if its sarcoid or reaction to the immune suppressants. I've also had my steroids increased but if my cough does not improve I am to reduce the dose again because the consultant says they would do more harm than good if my cough isn't improved. Can I just say at this point, if anyone has spotty areas that are not like the common spots we get, or if you have spider veins (that's the tiny purple/blue lined areas on the lower legs and ankles) that have suddenly appeared, would you please go mention it to your GP and definitely tell your consultant so that you can be monitored and checked? I am saying this because if you do it could just be the sarcoidosis but it could also be due to the medication you are on such as steroids and any immune suppressants your doctor has prescribed. It is so important to get it checked because it is bad if it is due to the drugs. Suppressing the immune system carries it's own high risks including cancer. I'm not trying to scare anyone but I do want to impress upon you the risks of ignoring symptoms. In the past couple of days my skin has erupted and in some areas such as my chin and right shin the skin has peeled off like a burns blister. It is painful and looks slightly infected so I understand my doctor's worries. It happened quite quickly from me getting a rash that looked equal on each side of my face about 1 - 2 weeks ago until now with these spots bursting like a blister with clear sticky fluid and ending up with bleeding sores! (ugg and yuk! sorry too graphic!) I feel like I hexed myself by saying things were looking up for me although I still think getting my chair was awesome ha ha! My only real moan about going to the hospital yesterday was that once again the ambulance wouldn't take me home until they were forced to because I am outside the hospital's catchment area and therefore left me sitting in the waiting room for.....5 HOURS! The little care assistant at the desk actually gave me a complaints for because she was disgusted with how long I had to wait. I hadn't eaten or been able to take my medication all day long. I was totally wrecked by time I got home. Thank God for that new chair. I fell asleep on it as soon as I got into it!

HELEN; I'm really sorry to hear your cheeks are still swollen. If you are on steroids then it is likely to be the side effect associated with steroid treatment that is also causing you to have swollen face. Try and think of yourself as jolly Santa or at least Santa's good wife with the big rosy cheeks! I totally understand how much more you are feeling the loss of your sisters and brother at this time too. It's 13 1/2 years since I lost my husband and it still feels like yesterday. All I can say is that I remember all the funny things that happened in Christmases past and it seems to be a big comfort and makes me laugh rather than cry when I share these memories. Perhaps it is too soon for you to try this but I hope you can and it brings you some relief.

LINDA; You are so right. I was chuckling at your post. Isn't it such a woman thing to go all out regardless of how we are feeling just to make it special for everyone else? I have to admit as I was typing the suggestion I was thinking, "I know they're all going to go ahead and do too much because that's what I do to" What's that saying? "Don't preach to others what you wouldn't do yourself" or words to that effect ha ha! Anyway I do hope you can all find a little time to put your feet up in between running yourselves ragged.

MORAG; I am so pleased to read what you said about deciding that if things didn't get done until later then that was okay. I think we all need to put ourselves first at times especially when it involves your health. I know I am not good at practising what I preach as I always feel so guilty, which is something I think we all do. Maybe we should be more like the men-folk who always seem to milk their health issues to the limit ha ha! Ah, what it must be like to suffer a bout of man-flu! Anyway Morag you take it easy. You know what makes you tired so don't let it make you exhausted. Little and often breaks will get you there just the same I think.

MM; thank you very much for your support and I'm glad that you too are going to look after yourself too. I'm sure everyone will enjoy the holiday time much better if they don't overdo things. I'm even planning on possibly having a little power nap on Christmas day so that I don't become a pain in the bottom because I've let myself become overtired. I know I get so ratty and short tempered for no reason when I'm tired. All my symptoms become worse too like dropping things or not thinking clearly, which makes me even more angry. I think my family would be more appreciative of me taking a nap than getting irritable with them. My daughter is very quick to pick up on me getting tired so I'm sure she will tell me when it's time to take a nap ha ha!

If anything comes of the sleep test I will post it and I should also have said that anyone else who has swallowing/choking problems or finds that they wake in the night because they are snoring (only if snoring is a new thing for them) or they wake up suddenly and find they need to take a huge breath of air (points to an apnoea attack) then you need to speak to your GP or consultant about it.

Okay I think I am finally finished writing my posting of War and Peace ha ha!

I hope all our newer members are coping with their Sarcoidosis and I hope they too have a lovely Christmas and are more healthy in the New Year.

Thank you guys for continuing to post and offer support to me and more importantly to each other. It is such a massive thing to do and I am so very happy that the forum has kept going throughout the year.

Lots of love, hugs and good wishes from June xxx

Oh that skin thing doesn't sound at all nice June! Hope they sort out whats causing it soon and can find a suitable treatment. Of course because nobody knows that much about the condition its difficult for them to tell if something is a symptom of sarcoidosis, a side effect of medication or something else entirely. It sounds almost like a sensitivity to the sun, except that when has there actually been any sun in the Glasgow area recently?

Had my appointment with the respiratory consultant yesterday. We now have a proposed treatment plan until April where we gradually cut down the steroids from 10 mg at the moment to nothing over the next 3-4 months. All with regular blood tests to check coming off steroids isn't adversely affecting function of just about any part of the body you can think of - and with strict instructions to phone her secretary if the symptoms start to come back in any way at all so that the consultant can then phone and advise me what to do.

I, too, am now in the position of no more doctor appointments this year - yay!!!!!!

And now its time to pack up the laptop, give up on working for the day and go home

Morag

June,

how awful for you to be having facial skin problems, whatever next can be thrown at you.

Hopefully as the week has gone on it has healed,

That is a disgrace about transport and catchment areas, they should stop and think well the patient is here so she was instructed to come here so she has to be taken home!

You hit the nail on the head I feel like I am running myself ragged.

Fortunatley my daughter is living with me at the moment until the end of January when she moves into her new house, and she is using up all her annual leave so she has been a great help.

Wishing you a lovely Christmas and better health in 2014.

Take care xxx

Morag,

Great news you have a reprieve, that is such a welcoming feeling whent they say...no appointments for a few months.

Wishing you a lovely Christmas and better health in 2014.

Take care xxx

That is fantastic news Morag. It sounds like you are in remission. What a super 'gift' to end the year on. I am so very pleased for you. Mow you really must look after yourself and try and get as much rest and enjoyment over Christmas and New Year to keep your Sarcoidosis in remission. I am also delight to read that you are now on holiday from your work too so enjoy every minute

You are right Morag, when do we get sunshine in Glasgow - just sunshine on Leith ha ha! I don't go out so unfortunately it's not the effect of sun on my face although it is a good point to note for everyone on steroids - Stay out of the sun as steroids makes your skin papery and very susceptible to sun damage.

Whatever it is, it has affected not just my face but my back (more down the right side and just the odd tiny patch on the left), patches on both arms and a large sore on my right shin which is very painful. My daughter noticed a new area on my nose yesterday and pointed out that this was how I looked when I was first diagnosed 2 years ago so I'm sort of wondering if it is the Sarcoidosis flaring up more. I have to say I haven't been feeling so well in the past two days but I was blaming the long wait at the hospital.

Anyway, whatever it is I am trying to stay positive and fully intend to enjoy Christmas with my daughter, son-in-law and granddaughter. I fully intend to beat my son-in-law at the board game 'Pointless' although apparently he has been practising by watching the TV version ha ha!

Oh! before I forget, do any of you have good suggestions for treating oral thrush other than getting prescribed meds which I just don't want to take or visit my GP for? I already have sarcoidosis on my palate and throat but my tongue and gums are very sore with thrush at the moment. My daughter had suggested Corsodyl original but you can only use it for a week as it kills the normal flora of the mouth if used too often plus it tends to feel like my mouth is on fire when I use it! I think I remember one of you saying something about garlic but I'm not sure if you meant pills or raw garlic. Thanks in advance. I can't have my son-in-law thinking his mother-in-law actually does breathe fire ha ha!

I so hope everyone is beginning to feel the excitement of Christmas and has a lovely time. Finally I am starting to get a little excited even though it still doesn't feel like Christmas yet. I think you guys were right when you said it is because the days have gone by at break-neck speed that we are not feeling it is Christmas already.

Love and hugs to everyone, June x

June - I have heard of natural youghurt, maybe worth a try. x

Hi All,

Hope you are all doing well and having great pre- Christmas time. I am going out with my work colleagues tonight so hopefully this will be the start of the Christmas feeling. The pub we are going to is right next to the Central Station where I’ll get my train back home, so thankfully no long walks for me. That’s me finished now with work until after Christmas. Looking forward to some rest. We have being doing Christmas food shopping bit by bit, a little but often and I have to admit I feel much better for it. My lower legs (inside) ankles and around the heels has been really sore. Not sure if it has anything to do with the spider veins.. June, I will definitely bring this up with my GP next time I see him.

Really sorry to hear about your troubles with your skin and mouth June. Hope it will start getting better soon. Any mouth wash is good for regular use. Perhaps you could combine every day one ( Listerine/ Oral B) with Corsydol Use it for a week and then every day one after. You mentioned garlic. It would never do any harm to eat fresh garlic, all year around, there are so many health benefits but instead of a quick fix it will take time to “build it up” and it keeps the Vampires away, haha. Garlic is otherwise known as natural antibiotic but for best results it should really be eaten fresh were possible. If you like cheese (any) then I would suggest to mix some finely grated cheese (ready made if it is easier for sore hands), a little bit of light mayo and crushed garlic clove and use it like pate on a bread or toast or roll it inside cold meat (best party snack ever and so easy to make). Delicious and the fresh garlic is so good for you. It will help to build up you natural immune system (which is otherwise destroyed with all the meds) , fight the common cold, keep away all sorts of viruses. Another trick is kiwi fruit. I peel it like an orange and slice it. Recommended is 2-3 kiwis every morning. Does wonders to your digestion, cleanses your colon and again helps to keep the cold away (builds up natural resistance). You would need to be quite consistent with eating the kiwi tho , for the best results. Cranberry, fresh (from frozen also), is another natural remedy great for prevention of infection and cold. Crushed cranberries and hot water instead of tea before bed time will do wonders to you general well being.

June- I am keeping fingers crossed for your Pointless win (love that game too), you just show him who’s the best. Hope you are all having wonderful time at Christmas and take it easy. A little naps in between, as June suggested, sounds like a fine idea 

Love and health to you all,

MM

Thanks Linda. I will nip down to local Co-Op if the rain stops and see if they have any. Failing that I will add it to my Asda deliver on Monday.

You have some great food tips MM although sadly I can't eat Kewis or pineapples as my mouth swells up when I eat them. I love the taste too I guess I must have a bit of an allergy to them

Funnily enough I bought some garlic and cheese from the Arran cheese shop so will enjoy eating that and will tell everyone I need to eat it all for my sore mouth ha ha! I love cranberries and eat them as often as I can. They are great for the water-works too. All the black berries, blue berries and brambles and ace for the immune system too. I'm not allowed grapefruit because I am on simvastatin for high cholesterol and I've always wondered why they didn't stop me eating oranges too??????

Anyway, thank you very much for your suggestions and recipes I will give it all my best shot.

I hope you have a super time out tonight. Try and get a wee rest with your feet up to make sure your feet and ankles are not swollen when you go out. The nap will charge the reserves so you can enjoy the whole night.

I will let you know if I pummel my son-in-law at Pointless ha ha!

Love and hugs to all, June

Hi June

As well as the other suggestions people have put forward try regular gargling with salt water - any temperature. I have a friend who works as a nurse out in Norway on a chest ward and that's the advice they give to anyone using oral or inhaled steroids as a way of helping to prevent oral thrush.

Yes everybody, Dr Ling respiratory consultant thinks my sarcoidosis may have gone into remission which is why she's keen to get me off steroids again. She's also warned me she thinks it'll flare up again next year when we start to get better weather but at least she's realistic about what to expect. Meanwhile I'll make the most of it.

Grapefruit juice has more monoamine oxidase in it than any other citrus fruit, which can interfere with the working of a lot of different cholesterol and blood pressure-related drugs. That's why they tend to say you should avoid it but not orange juice if you're on certain medications including simvastatin.

Aw ra best all of you

Morag

Thanks very much for the added advice Morag, I never thought of salted water and had forgotten that bicarbonate of soda and water is also good. I've been away from nursing far too long I think and all these ideas have just gone from the memory. Thanks also for explaining about the grapefruit and the simvastatin it's something I'd always meant to ask my GP about but always forgot.

It's fantastic that you have gone into remission (I'm doing 'the dance' for you) but I would have thought your doctor would have kept you on a maintenance dose for a bit longer especially if she's worried your sarcoidosis will flare up again. I know it's not good to be on the steroids but it is the only thing that seems to help doesn't it?

My consultant told me that he found 7.5mg of prednisolone daily works with almost all of his patients. 10mgs daily causes problems with too much immune-suppressant and anything less than 7.5mgs allows the sarcoid to flare up again. I wish we could get all our consultants to put their ideas together, they might just come up with a cure or at least a faster remission time.

I'm feeling absolutely rotten tonight. Just so many waves of nausea and my skin is such a mess now. I'm so hoping I will feel better by Christmas day although if the weather turns out as bad as forecasted it won't really matter as no one will make it over to my house. I've planned to have Christmas dinner on the first decent weather day if crimbo is a washout (and blow out). The only trouble is I'm left wondering whether to defrost the turkey or not. It's only a little bird as my daughter is determined to stay on her diet packs and my granddaughter has asked for pasta for her dinner. This leaves my son-in-law and me and I can only manage tiny meals right now but it's still waste if no one can get over to me. Oh well no use worrying about it. It may never happen as they say!

Well I'm off to bed. I only woke at 2.00pm today! Shocking isn't it? Now I'm off back to bed at 10.00pm. I'm convinced I hexed myself because I was feeling so good the other week and thought I was going to be the one telling everyone that I had finally gone into remission. However I will continue to think positive thoughts regardless and who knows maybe Santa will sprinkle some fairy dust on me on Christmas eve and I will be like a new woman on Christmas day - I'd better get out my tutu and wand just in case ha ha!

Thanks once again to everyone for their input and support over the year. Have a fantastic Christmas and New Year and don't forget to share how it all went for each of you. (I'm sending lots of wishes for you all to have a perfect time) Much love and huge hugs, June xxx

Hi all just a quick hi as my inlaws are with me now until the new year

I feel that I have really over done it now in the lead up. Past couple of days I've had a sore throat and last night a rash/bumps came up on my cheekbone/neck area today it is still there and I am sonde ring if it is a bit like you were similar to what you have had June

I have just sat down after being on the go all day and had 10 for dinner so my entertaining has started early I keep getting told I am overdoing it but who else is going to do it I say

Glad to hear there are a lot more positive comments. Let's hoe that we all get a sprinkling of the magic dust as we have all had our fair share now

Best wishes to you all

Xxx

Oh poor Linda. It does sound rather like how my rash etc started. I did have a sore throat but thought it was down to the oral thrush, although I have had sarcoid lumps in my mouth since I was diagnosed so I'm not sure. My rash was accompanied by a very flush red face on forehead, cheeks, nose4 and neck rather like the butterfly shape they talk about for Lupus. The spots were initially itchy/tingly but when I rubbed the area the skin sloughed off and the area bled for ages. When the bleeding had stopped I was left with a larger area than the spot was and it looked almost like a graze while other areas looked like popped blisters. My cheeks and back were most affected but I also have them on my chest too. These ones came up like insect bites but popped the same way with clear sticky fluid coming out and then leaving a scab. Sorry if it's too graphic but obviously you need to know to see if you have the same outcome. Please, please try and ease up. This is probably your warning that you are overdoing it. I know it's Christmas but it's not worth you being ill on Christmas day so plenty of rest from now until the big day and accept any and all offers of help. Hope things settle down again. Love and hugs, June x

Hello everyone, I've just signed on to the forum. I have chronic, fibrotic Pulmonary Sarcoidosis which has caused Bronchiectasis and small airways disease. I found this discussion because I was wondering if the fact I have started choking when eating was due to the Sarc - of course it is! I have also been having problems with itching, especially around the nape and back of my head, and sometimes around the hairline on my face. There are lumps but they aren't breaking like June's. That sounds nasty. You need to keep on at the DRs about your symptoms. Don't get embarrassed and ended up putting up with things. Yes, there are some things they can't help with, but some they can.

WISHING YOU ALL A VERY HAPPY NEW YEAR WITH VAST IMPROVEMNETNT IN HEALT ISSUES XXX

Hi June & all,

Thankfully the rash/bumps didnt get any worse.

Hope you all managed to have a lovel Christmas.

Apologies re mt spelling above, but I am sure you all got the message...ha ha.

A big welcome to di01694

you sound as though you have the same latest sympton that I had.

It is amazing just how many different things Sarcoid involvex