Sarcoidosis - not enough care and attention given to sufferers
Posted , 66 users are following.
Hi, I've only just joined this forum but as a long term sufferer of Chronic Sarcoidosis I thought maybe I could say a few things on the matter. First of all I was shocked to read that one of the forum members had been told by his specialist that night sweats are not a symptom of sacoidosis. Nonsense! night sweats and indeed profuse sweating during the day are symptoms of Sarcoidosis. The lack of support for people suffering from sarcoidosis is dreadful but the truth is that not enough is known about the disease and especially amongst UK doctors. American doctors are more on the ball but then they have the money for research etc in the US. I spend my entire time fighting and arguing with health people, trying to get appropriate treatment for my various symptoms. Luckily I have an excellent respiratory specialist but that is all he is a respiratory specialist so when it comes to all the other problems I have due to sarcoidosis such as skin, eyes and nerves I have to fight to get tests and treatment as either no one believes me or they think it is up to my respiratory specialist to deal with it. He in turn kicks it back to my GP (rightly so) and at the end of the day nothing gets done as no one will take responsibility for the symptoms! It's a ridiculous situation but it boils down to money as all these MRIs and tests are very expensive and neither party wants to foot the bill. The over powering fatigue is dreadful and I can literally fall asleep in mid conversation. Also the depression that comes from constantly feeling unwell and the frustration of fighting for proper care also takes it's toll. The sweating I spoke about earlier, can not only hit at night either as I find that expending a little energy just hoovering a carpet can cause sweat to literally drop off me. At the moment I have severe pain and severe pins and needles in both arms and hands and it has taken me 6 months to finally talk my GP into allowing me to see a neurologist. I will see her tomorrow but my respiratory specialist told me not to hold out too much hope of being believed! So you see even the doctors who understand Sarcoidosis know the taboo within the health sector so what chance do we have? I was originally on high doses of steroids but unfortunately they caused me to have a psychotic break so I had to be taken off them so I am now on an inhaler and mucosal thinner to try to combat the extremely thick, sticky sputum I cough up.In one sense I suppose I am luck as I am already in a wheelchair due to nerve damaged feet (hospital screw up!) but I had to change to an electric wheelchair because with being so breathless and having nerve problems in both arms I couldn't propel myself around in my manual one. I say I'm lucky to be in a wheelchair only because without it I wouldn't be able to get around at all because of the sarcoidosis. I sometimes wonder if UK doctors have a bad attitude towards sarcoid sufferers because they think everyone only has the acute sarcoidosis and it would probably resolve itself or even come and go undetected in it's own time. I really don't know but what I do know is that they need to become better informed about this disease and be more caring when treating their patients. It's not a deadly disease but it certainly takes its toll on the sufferer and the symptoms need correct and fast treatment before they become a real problem. Keep your chin up fellow sufferers and don't be scared to be pushy with your GP. He has a comittment to treat his patients whether he thinks its serious or not. You have a right to demand to see a specialist or to get a second opinion but do remember that not everything is linked to your sarcoidosis so if you develop a new problem make sure you get it checked out properly and don't be fobbed off with your GP saying it's just a symptom of your sarcoid because it could be a different health issue altogether.
21 likes, 1045 replies
CassyS
Posted
Thanks for all that info MM. Will definitely look into it. As u say its worth a try x
di01694
Posted
I had a clinic appointment and a lung function test at the Royal Brompton Hospital yesterday. My lung function is stable - it's been much the same for two years - and I feeling pretty well at the moment. Giving up working has definitely improved my health if not my wealth! The registrar I saw was talking about reducing my steroid dose. The problem is that I keep getting conjunctival haemorrhages. At the moment I have a small bleed in my left eye that just keeps going, each time I think it's clearing it starts again. Has anyone else had this? The registrar didn't think it was eye sarcoidosis but decided I should see an ophthalmic surgeon so I'm about to add Moorfields Eye Hospital to my collection! I pointed out to him that steroids are given as a possible cause for conjunctival haemorrhages, but he still felt it should be checked before changing the amount of prednisolone I'm on.
morag7
Posted
Hydroxychloroquine was originally developed as antimalarial drug but its also used now as an anti-inflammatory. I've had a look at some of the websites that talk about it - the best ones for general information thats accurate are Wikipedia and also Medline Plus (a branch of the US Library of Medicine - www.nlm.nih.gov/medlineplus/druginfo)
The American site even gives suggestions for how to cope with some of the possible side effects though their ideas are pretty much common sense by and large.
Hope that helps a bit
Morag
linda39
Posted
How funny I also had lung function test yesterday along with the clinic, but mine was at Charing Cross.
My consultanat was pretty happy with my lungs apart from all the scarring which is to be expected.
But you mention your left eye, I am also getting 'bloodshot' in the inner corner of my left eye too.
There surely must be some connections.
linda39
Posted
Thank you for your response.
I have had a look at the link you sent me.....all seems a bit scary. ha ha.
I have also checked this out on Patient uk but as advised by my consultanat I need to be fully aware.
Hopefully someone on this forum has had some experience with it.
Kind regards
Linda
linda39
Posted
I have just reset my profile, although exactly the same...but hopefully it will work again now.
linda39
Posted
I obviously meant blood-SHOT.
I was under the Western eye hospital until last month but they have said there is no more they can do for
me.
But now I have to get permission from them to start this new medication...so back to the drawing board!!!!
I have rung the professors secretray twice today and lkeft a message but still not heard anything, so this will prolong my treatment!!!
I had an eye test yesterday and my left eye I could read 4 lines, my right eye was the first line only......
I dont need reading glasses either so what on earth is going on, I still blame the TB medication...that I didnt actually require after all.
Emis_Moderator
Posted
I have edited your unfortunate typo in the other post
Re not receiving emails, it may be your email provider is blocking them for some reason or you need to specify allowing emails from the site. If you do not know how to check this you can try Googling about this for your provider or I will PM you with instructions when I get time. This post will be a test if you get the email.
Regards,
Alan
Emis Moderator
MM77
Posted
You are welcome Cassy,
I have started with small changes, trying to eat less some stuff from the list and eat salmon 1-2 a day etc, but really need to make up my own "menu" and just get on with it!
Linda, sorry to hear that you have not had so good news recently. I am on HYDROXYCHLOROQUINE and June said it works wonders. Problem is it does take over 3 months before you see any results at all, sort of a build up medication. My 3 months on it is just about over, I have not had any swollen joints ... still stiff but obviously winter isn't helping me either.. My doctor kept me on naproxen (NSAID) the same time. Oh that terrible heartburn it gives me though, you'll need Omeprazol to protect your stomach too. That is right, you need to get your eyes tested at the start and then once-twice yearly as these meds can affect your eyesight.. I had a steroid injection last year in Feb and it lasted over 12 weeks, it made wonders to my joints. Maybe ask for it? It should not have too bad of side effects if taken yearly or less regularly ( I think max is 2-3 times a year but that can be too much) .
I have been having some kind of a tingling sensation in my head and face again, pins and needles, when this happens I am unable to think or concentrate at all.. it just comes over me suddenly , kind of a really fuzzy head and inability to spell, type etc... It passes in couple of hours but it is quite scarey.. Couple of days ago it took me 30 minutes to type up 4 line email, I knew how to spell and what I was trying to say but it didn't materialise on paper, my writing looked like more Polish than English.. ... I know that Sarcoid can affect Nervous System and Brain too... I had the same feelings for about couple of months in Feb/March last year... I really hope it is not happening again..
Oh the joys... My Pulmonary appointment is 13th March to see my new consultant, Hairmyres hospital, and I will see my rheumatologist again in April.. See what they say
Good luck to you all with your consultants and GP's and good health of course
MM
linda39
Posted
The notifications stopped all of a sudden, I have ensured that email notifications are ticked, but I did not get you email notification. This is frustrating.
Thank you for correcting the typo, luckily I did notice it very quickly hence added a follow up post.
linda39
Posted
Thanks for that information it is good to know.
There would not be any hesitation on starting it as both my consultants are quite keen, but due to my badly deteriorating eyesight this could spell disaster.
What side effects have you had since being on them?
Kind regards
Linda
di01694
Posted
I'm not that bothered about hyphens, honestly! I'm sorry to hear your eyesight is affected, I have been told eye sarcoidosis is a quite frequent complication for those with pulmonary sarc, comparatively speaking. Which I guess is why the Brompton registrar decided to play it safe with me. I also have lung fibrosis which I believe occurred during the original delay in diagnosis. I expect you had the same experience of not being able to convince your GP your symptoms were genuine and serious. I met someone recently who had eye and joint sarcoidosis in the 1970 which her GP apparently picked up on immediately. But pulmonary sarcoidosis can cause such a wide range of symptoms I suppose that might be an excuse for poor diagnosis?
MM77
Posted
No side effects really so far, other than most awful heartburn.. So maybe stomach issues .. it has only being about 3 months, maybe early to say yet. My eyes were OK and I don't feel them being particularly worse.. Maybe just tired.. Just general unwell being but that was well before any meds
I would give it a go when they allow you and if there are issues I suppose you could come off them any time,
Good luck with it all x
MM
linda39
Posted
It was more than a hyphen. I typed a 'I' as supposed to an 'O'. But was corrected by the editors ....slappedwrists for me.
Although I am convinced it was between the 'unnecessary ' Tb medication and Sarcoidosis that caused my eye problems. This has never been actually been stated.
But of course if I now have to go back to the eye hospital fir another check up before going on medication I
Will definitely be asking a few questions!!!!
Fortunately Sarcoidosis seems to be more 'common' to hear nowadays.
My daughter applied for life insurance last week fir get mortgage and one of the health questions was
Sarcoidosis .........she was shocked.
I initially went to my GP with a cough and swollen ankles, initially I had a chest X-ray , which was followed by every other organ being scanned , then referral to rheumatologist , it was him that sent me to the eye hospital and arranged a CT scan, from there I was also referred to respiratory ,
All in all I must say they were all very attentive and I was treated like a private patient, but then when they initially thought it was TB this delayed things by 3months
Basically my problems began October 2012 and my first appointment with the sarcoidosis specialist was
about 8 months later.
ailsa_june
Posted
Sorry you didn't get all the personal messages I sent a year ago. Better late than never I guess although they are of little use now.
I am on Hydroxychloroquine and must say that it certainly eased the chronic pain of my Carpal Tunnel syndrome. It did take several weeks before it helped though so be patient. I find it causes me to feel very sick sometimes so I had to be put on omeprazole daily too. Make sure you have something in your stomach before taking them as with any anti-inflammatory it plays havoc with the stomach lining. If you take antacids you need to wait 4 hours between taking the antacid and taking hydroxychloroquine. Hydroxychloroquine is also used for treating rheumatoid arthritis sufferers. If you have the eye condition, Maculopathy you are not supposed to take this drug. The drug can also cause blurred vision when you first start taking it so advice is not to drive until this settles. You are supposed to have your eyes checked yearly while on this medication. This is something I was not told about.
I hope this has helped.
June