Sarcoidosis - not enough care and attention given to sufferers

Morag

Hi glad to hear that you are recieving good treatment too.

I feel extremely lucky that I have hardly had any bruising from blood tests....they muct see the fear on my face when they are getting that needle ready.

Take care x

Yes June, it is the Hydroxichoroquine. They only started me on it, so might be a while before I see any benefits.. but if you say it is working wonders, I'll stick with it. I am also on max dose of Naproxen, which is actually causing stomach ulcers, seems to be that I have developed these.. Just one of those things... making you better one way but not the other. They took me off steroids tho after my lungs started getting better. Took over 6 months for my lungs to improve but my quality of life has changed so much for the better since. Yeah, looks like it is winter my symptoms are worsening and Summer is better, especially that we had quite a good Summer this year.. Fatigue is unbearable. The minute I get on the train in the Morning to get to work and back from work in the Afternoon I fall a sleep.. Every day. .. Its like narcolepsy.. I also fall a sleep at my desk at work sometimes, I need regular walking about and stretching during the day and about 3 strong (real) coffees to keep me awake! Thankfully I have got such a great and understanding Boss.

Agree Linda, lets hope that we all go to remission very soon x I do feel a lot better than I did last year this time tho, it was like morning sickness 24/7 and because of the sweats could not sleep either.

I have missed you all, so maybe we can keep more contact in future

Love to you all

MM

Hi All,

I have definitley felt a decline since the winter started to creep in, and my problems all started last October so I was more aware this year with what was going on in my body.

I have started going back to my chiropractor and have been fortnightly over the past 2 months.

He said my body is still a bit jangly and my joints are still sensitive hence I am going every 2 weeks asbefore that it was only every 6 months just to keep me supple as I have been attending for 17 years now

[dread to think what I have spent] but hey ho we all need to have some comfort.

MM so glad to hear that you have an understanding Boss, that is such a relief and no doubt he would rather have you in work than not as you are treasured.

You are absolutely right, Morag. It's a hellish emotional roller coaster living with Sarcoidosis. I will be quite honest and say that I've really wanted to throw in the towel at times. It's very hard to climb out of the hole when you get so low and fed up with symptom after symptom. I think it is harder for Sarcoid sufferers because just as one of your symptoms looks like its improving, another symptom rears its angry head. Plus other people just don't get what we are going through. It's like there is no real respite so I guess it's little wonder we get so tired and depressed. Can you imagine the battle going on inside us - WOW! I would think that raised pollen counts in the summer would cause problems for our respiratory system. I coughed my way through summer but have to say that the cold air definitely makes my cough much worse. Also the hot weather and the sweats were a nightmare to control too. Plus of course the side effects of steroids and sunshine. We are not supposed to venture out unless covered up from the sun because our skin is so sensitive. Yes we do bruise more easily don't we? I just need my over-weight cat to jump off my lap in a hurry and I am left with a "purrfect" paw print ha ha! One think I now have is masses of spider veins around both ankles and in several areas of the calf and shin on both legs. I don't know why this has happened. Any one else getting this? I'm wondering if it has anything to do with being in a wheelchair but I didn't have them before the Sarcoid so I'm puzzled. I'd welcome any suggestions. They are really deep purple, blue and red. I am really so happy that the steroids are working for you but totally get how fed up you sometimes feel. It's such a long drawn out process. You keep your chin up Morag and have a good old moan here when it's getting too much for you. Just don't go bottling it up. Love and hugs, June

Hi MM, the hydroxichloroquine definitely takes a while to get into your system but it definitely works. The silly thing is you don't realise it's working until one day you realise the pains not nearly so bad. The difference it's made for me has been in my hands and wrists. I was crying with the pain and unable to do hardly anything. Also my shoulders, I couldn't raise them above my head. I had my wrist splints on day and night and constantly woke in pain. It's even dealt with the pins and needles I was getting in my arms and legs during the night. Now I am back making my greetings cards and sending posts to you guys. I wasn't able to use the keyboard at all because of the pain. So I have to say it is a really good medication and that coming from me is praise indeed as I often don't find medicines working for me. Again the down side is gastric problems but so long as you remember to eat something before taking them, that does help. I'm really sorry to hear you are suffering with digestive problems. The trouble is so many tablets have gastric problems as their side effect. How much omeprazole are you on? My GP upped the does to 1 twice a day which has calmed my stomach right down. I'm really concerned for you if you are now getting ulcers. I was going to say that I was surprised your doctor stopped the steroids before your sarcoid had gone completely into remission but I'm assuming he's done that because of the ulcers. I hate to say it but your coffee is also contributing to your ulcers. It's a rotten thing to happen to you after feeling better and having your sarcoid more or less under control. I will try my best to keep in better contact with the forum too. I'd got myself in a downward spiral for a while but I'm doing better now thank goodness. I hope they are able to control your digestive problems soon. Keep your chin up. Love and hugs, June

June,

Great to see you back in full force as always giving postive and very good advice.

A couple of weeks ago I felt really low, and discovered there is actually Sarcoid depression.

We do have the whole book thrown at us dont we.

Thankfully it only lasted a couple of days.

You know what, Linda? I think it's money well spent. If you are getting relief by going to the Chiropractor then there is no need to feel bad about spending the money. It's just a shame you can't have it on the NHS. I was sent to the Homeopathic hospital. I guess that works for some people too (unfortunately not me right now) They were lovely there and wanted me to be an in-patient for a couple of weeks but I just couldn't do it. I have such a hospital phobia now and I used my two cats as an excuse for not going. The nice thing is that they don't try to push you into anything and the option to change your mind is always there. I was also offered herbal medication but I didn't fill the prescription in the end as I couldn't face any more meds. I do think complimentary medicine does help a lot of people but you have to be open to it. Funnily enough years ago I used to mix herb potions for people and everyone used to say how well it worked but I believe it was just the placebo effect. There again it doesn't matter so long as people felt the benefit for whatever reason. I have a great admiration for Chiropractic medicine because it deals with realigning the spine and untrapping nerves etc. When I was nursing, Chiropractic medicine was frowned on a bit by the NHS probably because people didn't know what it was but I remember being given a talk by a chiropractor and being very impressed at what she had to say. Nowadays Chiropractic medicine and other complimentary medicines comfortably run along side general medicine and it is great to see this. Good grief don't I yap on? And on that note I'm off to make a cup of tea. Love and hugs, June

Yes I recently discovered that too, Linda. I thought it was just the meds but when you think about it, having to put up with multi symptoms is enough to depress anyone.

Hi June,

Oh no I dont begrudge one penny going to the chiropractor it is quite rewarding.

I have so much faith in mine and the bonus is he is quite knowledgeable on Sarcoid, so is very understanding and informative.

Enjoy your cuppa x

Thank you Linda, agree, my Boss has been really understanding, if it wasnt for her I would probably be unable to work on. The Chiropractor sounds such a great idea. I use to go years ago when I had a bad back (after kids) and he really did help me. So far I have had couple of nice facials when I have needed a wee boost on self esteem.

Thanks June, Yeah, 1 tablet only just now. Next time I see my GP I'll ask him about 2 option, it sounds good, thanks for your advice. Yep, me too on spider veins around ankles.. , they also seem to get sore now and again. I am not sure if it is the veins or actual ankles but it is around the same area. .. Ugly, blue-purple ones (very fine- thin) and no, I never had them before.. My heels can get pretty sore too. I am only 36 and both of my kids are teenagers, so cannot blame recent pregnancy or aging either

First, before my lungs were checked they gave me an injection (steroid to last 16 weeks), then they put me on steroids but took me off 2 weeks later as saw signs of improvement and gave me a steroid inhaler instead.. No consistency there.. My hubby thinks that I have been seeing wrong kind of specialists and as Sarcoid is auto immune disorder then I should be seeing Immunologist instead, who should oversee all medication and treatments and medical history etc.. Go figure, he might be right..

Love to all of you and heads up high!

MM

MM

I think your husband has a valid point there.

I was seen by several different clinics before finally after 8 months I got to see the Sarcoid specialist.

Along with being treated on 14 tablest a day for 10 weeks for TB....

We can all hold our heads up high....as we are battlers.

Hi again MM, Yes you doctors did the wrong thing and quite probably exacerbated your condition by stopping the steroids before you had gone into remission. As far as the steroid inhaler goes, it is only to open up the airways and deal with the inflamed areas of lung. It does nothing for the sarcoid disease because you only receive a tiny amount of steroid. This comes from my sarcoid specialist because I had asked him if I should increase the amount of times I used the inhaler and that was what he told me. You should have been sent to the respiratory specialist as soon as you were diagnosed because if your lungs are affected they call it pulmonary sarcoidosis and it is suspected that from there it affects the rest of the body. I'm shocked that you are not in their care. You can request your GP to send you there though and he can't refuse you. It is odd that none of us have ever been sent to the immunologist. Even I didn't think of that (some nurse I am ha ha!)

Re; the omeprazole. I've found taking it first thing in the morning when I wake up and then late afternoon before teatime seems to work for me. I take the hydroxichloroquine around 10.00am so that it is about a half hour to an hour after food. I used to take it sooner but found the heartburn was bad if I took it too early in the morning. I actually take it the same time as my steroids so that I am taking all the tablets that cause gastric upset at the same time and it seems to work.

Thanks for telling me about the spider veins. It sounds daft but I always feel better when I know someone else has the same symptoms. I think it is to do with worrying that you could have something else wrong with you as well as the sarcoidosis. My GP was very dismissive about them and when I said I thought they were part of the sarcoid process he disagreed but didn't offer up any other reason for having them. Well clearly he's wrong. Mine get very sore too. A bit like burned flesh feeling but they ache too. The also get very itchy at times. They just appeared one day. My skin felt uncomfortable and itchy sore and when I looked there were lots of tiny, ugly purple thread veins. I always hate the way doctors dismiss things if the look of something doesn't fit with the photo in the text book. It's almost like you can't be different in any way but if our skin colour and texture can vary so much then why wouldn't the appearance of a rash etc? Anyway I'm really grateful to you for sharing and you put you foot down with your GP and go see a consultant whether immunologist or respiratory. Good luck, June

I'm horrified by the idea that someone was put on steroid tablets then taken off so quickly! Both my GP and the resp consultant I'm seeing say thats a big no no. If they put you on relatively high dose steroids (anything more than 5 mg/day according to the consultant) then they have to wean you off gradually. Using steroids means your adrenal gland stops making them cos it thinks you have enough there so you have to come off them gradually or you go from loads of steroid to no natural steroid in your system that can cause lots of problems in its own right.

And thats apart from the minor detail that inhaled steroids don't do much other than open up the airways to make breathing easier, they aren't going to zap sarcoid.

Don't know about other areas in the UK but where I am (near Glasgow) the standard is that if any GP or consultant makes a diagnosis of sarcoidosis you get a referral to the respiratory people because the most common symptoms tend to be lung-related so they have the most experience in treatment and are expected to learn about other areas that can be affected.

Anyone else ever wish you could take all the doctors involved and sit them down in the same room and make them talk to one another though? They all write letters to each other when they see you but the idea of reading those letters never seems to occur! The way things have been I've had an appointment with respiratory 1 month then renal the next. So 1 consultant starts to talk about something they've noticed and I have to say well you know the other consultant thought that was because........... I'm getting fed up with playing piggy in the middle and having 1 person saying Take this and the next one saying No I'm not so sure!

Rant rant, moan moan

Hi all,

I think it happened because of the timing. I got an appointment to Rheumatologist first, back in Feb, took me ages to wait for this appointment. It was her who got me the steroid injection to ease my joints and as I was also complaining about increasing shortness in breath she referred me to X-ray, Respiratory clinic breathing tests and later on CT scan as the X- ray was not good. She also thought back in Feb that it is Sarcoid I have got. When she got results, she was pretty concerned and when she saw me in April she referred me to Pulmonary specialist as well as prescribed lower dose of Steroids, advised me to start taking them and said that pulmonary specialist will most likely up the dose. When I saw Pulmonary specialist ( a professor) few days later she was not happy for me to take steroids, as it could also be lymphoma or TB and said not to take them at this point and ordered the lung bronchoscopy / biopsy and all new tests (CT scan etc). The results in April came back slightly improved than the ones in March and biopsy showed 100% Sarcoid, as there was improvement she decided not to put me on steroids at all. Also Pulmonary specialist was not very impressed by me having had the steroid injection back in Feb (she never realised from my medical records it was me who mentioned it). She then run another set of tests end of May/ start of June and they showed even more improvement. Seems to be battle of Powers here. Hence the reason my hubby thinks I should be overseen by one- Immunologist to avoid the issues like this above. I am also near Glasgow.

Love to you All