Sarcoidosis - not enough care and attention given to sufferers

Hi Helen, Really sorry I didn't get back to you sooner. I wasn't feeling too great either so was just taking it easy. I have to say that I am so puzzled with your doctor. Why the hell are you coming off the steroids? You are supposed to stay on them while the Sarcoid is active? You definitely can't just stop them either. It has to be a reducing regime but as I said you are supposed to remain on them for as long as you have the sarcoid. Are you seeing a respiratory specialist or just your GP? I also think you should change your GP too. I am sick to death of hearing GPs say "oh you must be depressed" Of course we are bloody depressed. We have a very depressing illness because it knocks the stuffing out of us and what the Sarcoid doesn't do to us the medication does. If you are not seeing a specialist then get yourself down to your GP on Monday and tell him to refer you as an urgent case. If he doesn't then plonk yourself in A&E and tell them that your GP wouldn't refer you and you are feeling very unwell. We used to black list GPs for not caring properly for their patients.

Hi Lizzy and welcome to the group. I'm really sorry to hear you are unwell but I am annoyed to hear that your GP didn't just send you straight to the hospital for an X-Ray. He/she is an idiot! Did he take bloods? If not book an appointment and ask him to check your ACE level. He should have automatically done it but obviously he's another uncaring GP who things he can leave you suffering instead of hurrying things up and getting results so that you can start treatment if necessary. Have a good read through the other posts on this forum and it should give you an idea of what to expect in the way of tests and treatment. Usually chest X-Ray, bloods, lung biopsy and then if diagnosed with Sarcoidosis you might be started on high doses of steroids depending on how bad your Sarcoidosis is. Don't be scared to ask things and don't be fobbed off by your GP. As previously said on this forum many GPs are not up to date with research or even general knowledge of Sarcoidosis. My advice to you is to rest as much as you can while the disease is active. It will wipe you out and for that there is no pill just listen to your body and if you are tired then rest. I had a scalp full of bumps too and they were all over my back and on my arms and legs too. Often you read that Sarcoid only appears on the legs but that is rubbish. You might get chest pain and neck pain - feels rather like mumps. That is you lymph glands swelling as they do because it is an auto immune disease. Paracetamol can sometimes help and I would say brufen but unfortunately Brufen can cause your lung problems to be worse so maybe wait until a specialist has seen you and told you what is okay to take. Try not to worry too much. I know it's very frightening but Sarcoidosis is not a killer disease and with a lot of people it just burns itself out and never returns. Some people are not so lucky and it keeps returning but this is sometimes because they have not been diagnosed correctly early enough so have never been treated for the disease. Steroids help but carry their own problems. Ask anything and we will try to answer it and feel free to rant and rave all you want. This is our support group and so far we have all supported each other. Hope this has helped so far, kind regards, June

Hi, we'll an update from me.

I went to the clinic on Tuesday and the nurse booked me in to see the doctor the next morning.

This being due to my eyesight getting worse and several floaters.

Anyway I asked the doctor what pints them to TB, she rang the lab in front of me to be told that my 2biopsies have had cultures frowning for 6 & 4 weeks and neither of them are showing any trace of TB....I have been taken off if 3 tablets a day but have to stay on the treatment for another 4weeks to make sure!

They will not confirm anything until I have had another CT scan to see if any change/ improvement to determine it. Meanwhile my calcium is very high so it is looking more like Sarcoidosis....hallelujah .....precisely what I have thought all along. The only thing is I have missed out on 6 months of treatment basically already.

So when I go on 26th...I should know........meanwhile I have been taking 14 tablets a day...that may be having no effect at all apart from beginning to affect my liver!!!!

We will all get there in the end. Regards Linda

CORRECTIONS : points not pints. Growing not frowning. Of not if.. Autocorrect on ipd....

Hi Linda, I'm so glad to hear that some headway has been made although really feel for you having had to endure all that medication for nothing. Do you rattle when you walk love? ha ha! Hey no need to put corrections. My typing is awful and I constantly make mistakes. We all know what you mean. You know they could have prescribed steroids for you to ease your symptoms. They don't really have to wait for conformation of Sar4coid I don't think. After all steroid treatment is used for many other ailments involving the lungs. I bet you were bursting to say "I told you so!" You poor thing I really feel sorry for you having to worry yourself daft that it was TB. Thank goodness it's not. When is your next CT scheduled? Soon I hope after all this wait. I had several days of feeling dreadful. I went out with my daughter to buy a new mattress to see if I could get some relief from the pain in my spine etc. I had a great day but it just levelled me and I ended up in bed for 2 days recovering! I never thought for a minute that shopping would take it out of me so much! Another problem I have developed lately is choking on food and fluids. I always seem to breath at the wrong time and end up inhaling one or the other. Is anyone else having or had this problem. It's very frightening when it happens. I keep expecting half a dozen people to suddenly rush up and preform the Heimlich maneuver ha ha! What did they give you for your eyes Linda? They just gave me Celluvisc drops and told me to keep my eyes moist but then I had my eyes investigated before I was diagnosed with Sarcoidosis so the two have never been tied in together as it were. I even have a large 'cyst' growing in the conjunctiva of my right eye so now I'm wondering if it is to do with my Sarcoid or just a normal conjunctival cyst. It did appear at the same time as some of the other symptoms so who knows? Anyway you look after yourself and try and take it easy until they decide what the next course of action is going to be. Regards, June

Hi Ailsa, Thankyou for your reply,

My Dr sent me straight to have blood tests,i know i had one for TB and a strep infection.

I'm just really confused at the moment. For years i have suffered with joint pain in my lower back, hips and knees, my dad has ankylosing spondylitis so for a long time believed i also had it. I have also had alot of other unexplained issues, so a diagnoses of sarcoidosis would in some way make me feel like i'm not a hypocondriac. I was also on the contraceptive pill that i read can also cause Erythemea Nodosum so i just don't know what to think, i think it's the not knowing that is horrid.

I am going to call the Drs to make an appointment on monday for her to talk through my blood results with me. The Dr that i saw was not my regular GP as she was on holiday, i know that she will explain things thouroughly to me.

I will keep you updated.

Thankyou for your reply, it helps not to feel so alone

Hi June,

My daughter asked that exact question why do I have to wait another four weeks why can't we get the ball rolling. Initially they said it maybe a dual infection and they have to treat the TB first otherwise the steroids would basically prevent this!!!!

I always had my reservations it was TB, even the first doctor in that clinic said she wasn't convinced.

My next CT scan is being sent to me but they are trying to tie it in with my next visit to see the clinic doctor.

Funny you should mention shopping wearing you out....I was a shopaholic before all this and I just haven't got the interest now, I don't even go food shopping at the moment.

Aww this choking thing sounds awful for you, I do hope it passes soon.

They never gave me anything for my eyes this time (only a bill for £25). When I was sent to the eye hospital couple of months ago I was put on drops twice a day for a week, then Maxidex for six weeks starting every hour then gradually down to once a day, but the uveitis seems to if gone in my left eye now. But now problem with right eye.

All these hospital appointments and medications are costing me a fortune.

I have to go back to the optician in the hospital foyer in two weeks to have the drops put in to check for the backs of the eyes.

Meanwhile I'll just keep holding the torch for light at the end of the tunnell.

Regards to all. Linda

Oh Linda you poor thing they really are screwing around with you! Making you wait until your next appointment. To hell with that you need treatment now not in several weeks time. Do they realise that the Sarcoid could be doing damage while it's left untreated? ooooohhhh! they make me so angry! How come you had to pay for you eye appointment? Why didn't your doctor just refer you to one of the local opticians who they have one their list ( all the doctors do this) You should never have been made to pay anything. My eye problems cycle around like all the other symptoms so this is probably what is happening to you. Just keep a check on the left eye even though it appear to have settled down. I'd see if you can get some artificial tears just to keep the eyes moist as the sarcoid really causes dryness (as I'm sure you are aware)but make sure it's the one that doesn't have the preservative in as prolonged use of those kinds of drops can also cause damage (can't win really. Damned if you do, damned if you don't) It also might be an idea to claim some of your expenses back from the hospital too. After all it is them who are dragging their feet and sending you to and fro. Just keep your receipts and go to the cash office at the hospital to claim back. Going to the odd appointment is one thing but no one has the money for multi appointments so don't be shy or feel embarrassed in claiming. As for the light at the end of the tunnel - my late husband always used to say it was the train coming!!!! Hopefully not. Lets hope it's a consultant with a torch who knows what he is doing!

I'm going out tomorrow with my family for tea and scones by Loch Lomond as it is my birthday on Monday so I'm going to make sure I take it easy this time. No shopping just sipping tea ha ha!

Hello again Issy. I'm so glad you feel less alone. We are always here so please do keep writing in. Even if there is a few days between getting an answer don't worry I or one of the other ladies will be around. That's the great thing about a support group, when one is feeling down or ill one of the others is there to pick up the pieces. Don't you be thinking you are a hypochondriac. The biggest problem with Sarcoidosis is the amount of symptoms it can have and not all of them are noted on websites claiming to be telling you about Sarcoidosis. I think the best help comes from groups like this one where real people suffering from the disease can share symptoms and treatments etc. Sarcoidosis can go on for many years undetected depending on the severity of the symptoms. Also it mimics so many other diseases so little wonder it goes undetected or is treated as something else. Not everyone's blood test shows significant changes to diagnose Sarcoidosis so don't pin your hopes on getting a definite result just from your blood test. Raised calcium and raised ACE is a good pointer towards Sarcoidosis but raised calcium can be due to many other reasons too. A straight forward chest X-Ray should show shadowing in the lungs but of course this can be due to a multitude of things. A CT scan of the lungs, biopsies of the lung tissue which should show granulomas in the lung tissue and a lavage of the lung which is washing out the lung and examining the cells collected, under a microscope. All these should give a more confident diagnosis of Sarcoidosis so be prepared to be sent for more tests. If there is anything you don't understand after seeing your doctor, please ask and I will try and explain clearly to you. I am an ex- registered nurse (of many years) and know only too well how doctors and nurses forget that we don't all know the medical terminology. I suffer greatly from hip, knee, shoulder etc pain in fact most joints and now I have grade 4 - 5 carpal tunnel syndrome in both wrists which is excruciating. I also had the rash so my guess is that you probably do have Sarcoidosis. I know they say that Sarcoidosis is very rare 19 in 100,00 people get it in this country, but I firmly believe that far more people suffer from it than that. I think it is just not being diagnosed correctly so doctors think it is rare. I was originally diagnosed with lung cancer before further test proved Sarcoidosis and so many people are just told they have arthritis (that rash can appear in arthritic patients too as I've seen it - or was it Sarcoid?) Anyway you make sure the doctors refer you on. Sarcoidosis originates in the lungs so it's best to start with a respiratory specialist and have him/her refer you to the other consultants as your symptoms dictates. For example if the Erythemea Nodosum rash is very bad and causing problems then you need to see the skin specialist. It's just that lungs and heart are obviously the most important and the doctor needs to see if there is any damage there first and the sooner the better. Anyway, try not to worry too much and keep coming back to the forum even if you don't have anything to say you might find solace in what other write. Kindest regards, June

Hi Ailsa June and everyone, good to see we are still keeping this site active its a real support. The whole swallowing thing and choking feeling is a recurring annoyance, along with blurre vision and sore eyes, it's plagued me for the past 4 years or so. Sorry you've been ill again I hope things are settling down again. I do love reading all the good advice you give here I wish I had a GP who was pro-active but next time I go I will see someone else. Prednisolone has given me a sore mouth and oral thrush and my chest isn't quite right yet, but went to work exhausted, I'm off until Tuesday. Started Garlic today anti fugal anti bacterial and anti viral so crossing my fingers it will help everything.

Take care everyone until the next post Love to all Helen

Hi,

I just thought i'd update you, i went to the drs today...different dr than last time. She said that my inflammatory markers were high but everything else was normal. I still have to go for my chest xray next tuesday and have bloods repeated again next week. She is also contacting my old neurologist, i was diagnosed with idiopathic intracranial hypertention about 3 yrs ago but luckily resolved itself, to ask about reappearance of headaches. I'm trying not to worry and brace myself that i might not get an answer to what's been going on.

Thanks again

HAPPY BIRTHDAY JUNE, hope you have had a good day & a lovely time with your family yesterday x

Helen, I have had mouth thrush due to the many tablets I am taking daily, it has been driving me mad, mouth feels so dirty all the time and a bitter taste.

Hope the garlic etc is starting to work for you.

I also hope that you see another GP that listens to you.

Hi June, I thought I had replied to your message on 1st June @ 21.55, but it don't appear to be showing on here.....

They say they have to ?treat? The Tb before Sarcoidosis...albeit there is no TB evidence as yet.

Eye test..this was a complete shock to me....I was under the assumption it was another clinic in the hospital, I will definitely be mentioning it when I go next Tuesday to the clinic.

My eyes don't actually get dry or sore at present, left eye seems fine but lots of floaters in right eye. But as we know things can change quickly.

Hi Izzy, glad to hear that you seem to be getting somewhere. It will be good to see what the chest X-ray shows up.

Please don't worry....believe me I've been wondering for 7 months now as to each appointment...am I going to get an answer!!!